Mariam Catherine Theresa Jamail Perkins
November 18, 1928 - September 30, 2004
We Miss You Mom

"Her Cross to Bear"
the story of a woman's struggle with the effects of Alzheimer's disease and an alcoholic husband

by Richard Burle Jamail Perkins

 © Copyright 2004

Mom1952-Galveston   The Beautiful Mariam Jamail Perkins  Mariam Jamail July 24, 2000  Mariam-December 1978  Mariam Perkins - 1940

"Mariam Jamail Perkins is too proud for this to be happening to her!"

  This is the day-by-day account of a beautiful person stricken by Alzheimer's Disease as told by her children.



Melè's Tribute Song, "Wind Beneath My Wings" Sung by Bette Midler

Rick's Tribute Song, "How Far is Heaven", Sung by Los Lonely Boys


Mele's Recount of the Final Days ...               Email Mele' (her daughter)
Photo Collage                                                Email Ricky (her son)
Go Straight to the Diary                 
               Long Term Care Assistance - PLAN NOW ! 
Lessons Learned                                            Mom's Obituary
Letters Received                                            Get Your Papers in Order ...Now ! 
Important Links                
Veterans Benefits for Widows
Free Drug Program for the Elderly

The irony of this is that Mom swore to her children, Mele' and Rick, that she never, ever, wanted to live a life like this.  In fact, she often told us, "If I ever get like that, just shoot me!"   And she probably wasn't kidding.

But, instead of following our Mother's instructions, we have chosen to provide her as much care and loving that we know how and to help her live her final years with some type of dignity ... whatever dignity can be afforded someone lost to this disease.      

And, we hope, that if by chance this ailment takes US away someday, that there will be a kind soul ... a son, a daughter, a husband or wife ... that will care for us in at least the same manner that we are caring for our Mother.

Okay!  Enough of the "heavy stuff" ... let's get in to learning all about Mariam Jamail Perkins and how wonderful she was in life and how she has progressed.

                                                                                            Ricky Jamail Perkins, son, November 2002

This photo was taken on October 14, 2002 when I was taking Mom to a doctor's appointment.
    This was an interesting phase of Mom's health because she was having difficulty making complete sentences, but she would often reply "Wow!".  Because of that, at the Hampton Assisted Living Center, she earned the tag, "Ms. Wow".   Occasionally she could get out a full sentence, but otherwise it was just Wow.

On this day, I took her to visit Candy (hair removal), who she has known since about 1972.  While Mom was somewhat coherent, she could not stand the pain of the hair removal.  Candy did a little of the work and then broke down crying.  She had not known that Mom had a problem with Alzheimer's and it depressed her so much.  We basically left her place and she was crying as we walked out the door.  Mom didn't cry, but hugged her.  She told Mom she loved her.


This photo was taken on September 1, 2004   -- She's still with me, holding my hands and looking into my eyes with an adoring smile that I remember.  She even grabs my face in the palm of her two hands, which I know she would recite "My handsome little boy" as she did thousands of times, even after being afflicted with dementia.

Mom Always Showed Us a Positive and Happy Face.  I can rarely, if ever, remember Mom being in "a bad mood".  How could this be?  How could she deal with her alcoholic and womanizing husband?  In this photo in 1993 taken inside her condo, you can see that this is the standard Mom expression; one that seems to hide her true feelings.   She seemed to have an inner strength that overcame so many obstacles in life.  You see, our father was a hard-working and devoted husband.  But, he also was an alcoholic.  (That story can only be told elsewhere.)



Just moments later, we see her true side. 

Look How She Feels.  It's evident that she is thinking "Why
is this happening to me?  What did I do, Lord
All Mighty, to deserve This?" (I heard her
say those words before.) 
There was no
                                                       evidence of Alzheimers in 1993
 (it started in 2000). 
But something
else was bothering her, probably Dad ...
 In Mom' s words "Dear Lord, just shoot me!" - 

Mariam, July 1954 at 26                                                                                                                                                                                                                Mom and Grandson Zach, March 2001  

                                                                            March 2001 with Grandson, Zach
Mariam Jamail, July 1954 at age 26                                      

The photo below was sent to Rick while he was in Austin attending the University of Texas in February 1979.  On the back of the photo (just discovered recently as I went to scan it) Mariam wrote the following:

  "Rick - Happy Valentine's Day - This was the year that I turned 50 and I wanted you to
        have this for my grandchildren.  You  don't need to display it.  Just save it.  After all,
        someday I might start looking my age (and acting).  Love ya with all my heart.  Your
        Mom and 1st Valentine    Mariam Jamail Perkins"

MariamJamailPerkinsDec1978- 50     Mariam - November 1978, Age 50

Mom and Son Rick, May 2002                       MomDad-May-1988   
May 2002 with Son, Rick (me)                            May 1988 with her husband, Dick Perkins          

Mom at 70, Before Alz Hit Us                                   Mom in 1946 at 18 years old
Nov 1998 at 70th Surprise Birthday Party                                   1946 at Age 18, Downtown Houston

Mom with Daughter Mele', May 2002                                                          
With Daughter Mele' in May 2002                                                    Mom, November 6, 2002


Some of the Jamail Girls, November 2002, missing Janine and Darlene

Mom's Stats

Mariam Catherine Theresa Jamail Perkins
Born: November 18, 1928   Died: September 30, 2004  
Houston, Texas
Favorite Color: Red
Favorite Vocalist:  Englebert Humperdink
Favorite Song:  "Moon River"
Favorite People:  Her 2 Children
Eternal Rest: Memorial Oaks Cemetery, Houston, Texas

Her Cross to Bear  The Reverse Chronological Diary, © 2004

February 5, 2005

Several months have passed since Mom left us.  I never did get my "sign" from her that she passed along peacefully, but I am totally at peace knowing that we did everything by the book in the exact way that Mom would have it played out.  We were with her, in force, until her last moments.  We avoided the artificial life support, such as the feeding tubes, just as she had instructed us to do.

This is so important.  Over the past few months I have received emails from several people who are going through these last few days with their parents.  Many ask me exactly what to do because they nurses are recommending a feeding tube.  In each case, I tell them the same thing my Mom told me: no feeding tubes.  In fact, this is so important for each and every one of us to do this while we are still in good condition.  We must complete a detailed Living Will / Instruction to Physicians that indelibly requires that absolutely no feeding tubes or other methods of extended life support become a part of our medical care.

I actually believe that doctors recommend this because it is their mission to extend life.  I do not believe that most doctors will recommend that you "let them die in peace" when the time is there.

For the Record, if I am older, say over 70 years of age, and I get some kind of normal end of life type of disease or Alzheimers or any other type of dementia, I instruct all of you, my friends, doctors, lawyers, and family, to absolutely not put me on any life support systems ... including feeding tubes or respirators.  If I cannot live under my body's own self sustaining systems, I do not want to live longer.  period.  no exceptions.     If, however, I am under the age of 70, and I get in an accident or some other debilitating condition, if I am unconcious or unable to speak intelligently for myself, I want to be disconnected from whatever life support, 6 months after the date that I was originally put on the life support.  got it?

October 22, 2004    Heaven

"Oh yea, I'm fine"  ... until I come to update this website.   They call this an Everlasting Memory, but for me it is an everlating heartache.  I don't want to get gushy ... yet, I must find something to feel the void.  So, with determination, I'm going forward with starting a company to assist people in making their "future decisions".  You'd be amazed how many people are asking me to get involved in this.  Primarily people in "the industry", such as hospice organizations, retirement homes, doctor's offices, nurses ... the market is huge.  I cannot talk more about it here, because I think this idea can be easily stolen.  But watch the website for PriorityPlanTM

Anyhow, we have a great future in front of us.  Be happy now, but plan for your future and the future of others around you.   None of us know what type of situation we may be in, mentally or physically, in just the next year or two, let alone the next 5 or 10 years.  If you want to establish a PriorityPlan, contact me.  We'll do a few of these at no charge in order to establish examples of clientel.  I wish I could tell you more about the program, but its all in the Business Plan now.

October 5, 2004      Memorial Oaks Cemetery

You would think that the story would end. 

Yesterday, we had mass and buried Mom.  After the mass, we had a reception with the usual Lebanese food and cousins from all over.   I meet more of my distant cousins at funerals than I do at weddings or at any other family event.  Just now, after 44 years, I'm starting to know who they are.  We saw many second and third cousins, including David Jamail, Carolyn Plessner and Bobby Murr, Carolyn Jamail, Janice Jamail, Kenny Jamail, Brenda Trabulsi, and several more on the Murr side, and dozens more on the Jamail side. Also, on Mom's late-husband's side, Beryl, Chelle, and Linda Perkins.

Melé's ties to Mom are so strong and it like she' lost her best friend in the world, which I think she has.  Mom and Melé grew very close after I left for college in 1978 and Dad's drinking intensified.  The following eight years, through her high school graduation, Mom and Melé shared thoughts and dreams and goals and that was the bond that could never be broken.  Now, as Mom passes out of this life to the next, I only witness my sister's struggle to try to pull Mom back, to be with her always. 

Mariam specifically requested a closed casket if she "did not look good".  The fact is that Mom's body could probably have been shown to her friend and relatives, but Mom wanted them to remember her in "the day", because she had so many of those days.  Dozens of well-wishers came to me with stories of Mom and how she was a social butterfly, as probably were most of her sisters, so the casket remained closed.   That is, except when Melé wanted to see her.   Personally, I had seen and held Mom so many times throughout her sickness, that I felt at that time, that I would leave her body at peace; it just didn't seem right to continue to "bother" the body ... almost as if another viewing would start the cycle all over again.   But my sister was relentless, unable to say the final goodbye.  Unable to cope with the idea of not seeing her Mother, whether dead or alive, once again in the flesh.

And now I understand.  Its the day after and I feel so remorseful.  I wish that I, too, would have seen Mom one more time.  To hold her hand and feel the skin that nurtured me for so many years.  I'll never have that chance again and why did I forsake it?  Stop it!  I'm telling myself; this is part of the grieving that cousin Melody told me about yesterday.  "Let yourself grieve" she said, "Because you will."

I decided to look up the definition of grieving, because I don't really know what it is.  For grief, Webster's says "Emotional pain or distress from an extreme cause, as affliction or bereavement; deep sorrow or sadness."   Okay, I think that's what is happening to me.  I'm not very happy right now.  I'm not my usuall self.  I don't feel like doing anything.  I need sunshine and a golf course, but it's cloudy today and a bit rainy.  I think I'll grieve.

October 4, 2004      St. Cecilia's Catholic Church  -  Funeral Mass 11 am
                              Graveside Service / Interment - 3 pm, Memorial Oaks

October 3, 2004      Memorial Oaks Funeral Home - Vigil / Wake

The following is a transcript of the Eulogy provided by Mariam's son, Richard:

Friends and Family … My sister Melé and I thank you for attending and expressing your love and respect for our Mother, also known by nicknames of “Yum Yum” and “Miha”

This is a time of happiness, not sorrow.   The lady with the “Movie Star Smile” would want each and everyone of us to be partying and dancing in the streets.  Really.  That is what she told us hundreds of times, so, please try to direct your sorrow and emptiness to that of sharing in her relief and happiness that she has ascended to sit with the Lord. 

I knew Mom for 44 years.  In the formative stages of my life, I took for granted the benefits of having a Mother doting on me and watching out for me each step of the way.  For many years, Mom wasn’t sure if she could have a second child, so I was “the one”.   It was great.   But after my 8th birthday, came along a baby girl, who she named after a Sister that she worked with at St. Joseph’s in the Maternity Ward.   Sister Angelique and my Mom must have been good friends; she is the one Nun that influenced Mom beyond any other.  

Anyway, since growing up and leaving my Mom’s house in 1978, I’ve learned that Melé and I were very lucky to have a Mom that loved us so unconditionally.   Last night, I sat down and thought about just what were the personality traits that made Mariam such a great person.   I’ve come up with the following:


I’m not telling you something that you do not know and in fact, our families naturally pass these morals on to their kids.   Think about it.   We all pretty much run with these same character traits, and I’m sure that you’ll pass them on to your kids, if you haven’t already.  But we’re a special breed.  As Mom used to tell us, “You have blue blood”.

So, as far as what Mom means to me and to Mele’, I can simply say that she means the world to us, and while this means that Our World has recently come crashing down, we are very happy for our mother, and her ascension.  We would rather have her with us, but now others will share her love.

So, let me try to lighten this up a bit … some of these quotes may sound familiar:

"Things Done By Halves, Are Never Done Right."   (has anyone checked this out?)
"Not a Cloud in the Sky."
"Lazy Bones, Sleeping in the Sun …"
"Theezey Cumbini(that may only apply to Aunt Sherlee and Mele’, I’m not sure)
"You can do anything if you put your mind to it."

Mariam was always thinking to the future.   I believe that early on, she subliminally knew that she was going through some mental changes.  It seems like it was a complex dementia mixed with Alzheimers, it’s hard to say.   You can read detailed info on Mom’s blog on the internet.  (here) 

So, in the past few months I found little papers stashed throughout Mom’s photos, papers, and so forth.  Notes that are reminders of how she wanted to live her final days, and how she wanted to be treated if she were to live in a nursing home.  We found instructions attached to photos, and cards, and so forth.   I think that Mom was preparing for the day that her mind would finally slip away.

Let me read some of them to you.

In a brief memoir, Mariam writes:  “Papa and Mama were strictly family.  We did everything together.  It was nice.  On Sundays, we would all go to church at St. Joseph’s Catholic Church on Keane Street.  It was about 2 miles from our house.  Mom would cook lunch and then we would go riding down Main Street past Rice Institute and then turn around.  There always was a man there selling Popcorn caramel balls in different colors.  We five girls, Georgette, Madelyne, Mariam, Geraldine, and Sherlee, got one each.  We would ride down Main Street and park and watch all the people go by.”

You can imagine that scene.   George and Edna Jamail and their 5 beautiful daughters on a Sunday afternoon.  Everyone must have stared.

In her book, she traces her Lebanese roots, talks about just about all of the cousin’s and brothers and so forth.  I don’t know where she got it all, but if anyone is interested, I’ll post this information on her website, and you can try to figure it all out.  Our cousin Jimmy Jamail can probably clarify it all.

She writes, “We always had enough to eat and nice clothes.  The main thing I remember was that we took Potato sandwiches to school for lunch.  We felt a little ashamed at the time but I just LOVE potato sandwiches."

“My school days were fun at St. Joseph’s, I received all the honors you could get.  I was in all the plays and sang on the stage between acts.  Aunt Georgette played the piano.  I was cute with long black curls. … I wanted to attend public high school, but my Mom was against it.  I was becoming “WILD” so she made got to Incarnate Word Academy, also known as Insane Women of America  My freshman year I was elected Duchess of the May Fete Queens Court.
My sophomore year I was Princess.  My junior year I was the Queen of Beauty, and my Senior Year I was elected Quen of the May Fete.   My grades were very good.  I was the Salutatorian of my Senior Class.  I wanted to to to U.T. but Mama and Papa could not afford it, so I attended night classes at U of H and worked with Sister Angelique at
St. Joseph’s Maternity and Pediatric Hospital."
I love to DANCE.  I would rather dance than eat.  I used to go dancing every night.  At that time, even tho World War II was over, we would go to the Service men’s club and dance until

She lists a series of boyfriends that she had through the years, and some of you may remember them.   Puppy love with J.D. Bonno, first real love was Johnny Maguire (black hair and green eyes).  Bob Gacke (tall and blonde, UCLA grad, engineer) … “Mama didn’t like him.  I caught hell from her the whole time I went with him.  We were engaged, but he had a good looking secretary.  Everyone warned me about him, but I couldn’t believe anyone would fool around on the great Mariam.  He took me down a peg or two."  Then, John Woolsey.  Then Shaff De Gaish. 

Finally, in May 1982, she ends with a supplement to her brief memoirs with a note to Mele’ and me …

“I am recording the following for my two children, Mele’ and Rick, who have given me a lot of happiness.  I never realized what loving someone so very much, was that they came before any other thing or person in my life.  Rick and Mele’, to you two, I say thanks for being so caring and so loving. May you two be as close as me and my sisters and love each other and take care of each other.  I love you both very much and hope you will always be safe and happy and remember all the things I’ve taught you.  Your background is above reproach.  Hand this down to your children and I hope they will give you all the joys you gave me and none of the sadness (which by the way was very small).”

She also included another supplement regarding her desire to not be put on any type of life-extending devices, including no feeding tubes, and so forth.  We honored all of her wishes and we had a Directive to Physicians and a Medical Power of Attorney written up, about 10 or 15 years ago.  I strongly urge everyone to do the same.

Well, that’s all I really have to say.  I believe maybe some other people would like to say some things, so I’ll step down now. 
Most of all, you know our beloved Mariam, the most unselfish person in the world, is in Heaven.   And you can call upon her to help you out.  I am sure that she will do whatever she can to help you get there too.  

October 2, 2004      Memorial Oaks Funeral Home

Mom's body lays at rest at Memorial Oaks.  Mele' believes that her spirit has already ascended, but I'm not so sure.  I am thinking that she may be with us until her Funeral Mass, but who knows.  

September 30, 2004  12:14 am

I just received a call from the Mariner Nursing Home that they walked into Mom's room to check on her, and she has passed in her sleep.  I suppose the vigil will be Monday evening with the funeral on Tuesday, but I'll have to check.  We love you Mom.

September 29, 2004      Mariner Nursing Home / Grace Hospice

Mele' visited Mom today and she said she was weak, and occasionally twitching, and making some faint noises.   We figure that this is part of the process where here body is shutting down.  Mele' sang her favorite songs to her for about an hour, and then spoke to Mom telling her about what heaven may look like, and that Mom should go on and join her friends and family there.  Her vitals were okay, but she was the skinniest she has ever been.

September 28, 2004   Mariner Nursing Home / Grace Hospice

I have just returned from seeing Mom.  Mele' and I spent most of the day with her and she had several visitors.  She continues to not eat hard food and now I've come to the conclusion that she has lost control of the movement of her tongue.  My sister told me last week that Mom was basically chewing and chewing, but not swallowing, and that problem continues now.  She can swallow liquids and we are attempting to give her as much liquid nourishment as she craves.  Mostly, she just wants small amounts of water.

We spent about 4 hours with her between 9:30 am and 2 pm, and she received a visit from her old friend of many years, Martha Ann Sanderson, and her husband Ralph.  Martha Ann and Mom met as coworkers at Tennessee Gas (then Tenneco, then Houston Natural Gas, and now something else) which was probably when Mom was about 24 or 26.   They knew each other threw all of those years and up until about 1998 or so, they kept in frequent contact.  I recall visiting their house, and their two sons, Jim and Bill.  It was hard to track the Sanderson's down, but I found them.  They look well.  Mom also received a visit from a catholic priest named Father Ulm, of St. Maximilian Kolbe on West Road in Houston.  He annoited her and gave her communion.

September 26, 2004  Sunday Night

Things have changed for the worse.

Mele' called me on Saturday afternoon and told me that Mom had stopped eating and drinking.   She said that Mom appears to be in a great amount of comfort (but not on drugs) thanks to Grace Hospice.  They got her a new bed with a special cushiony matress.

Mom has her teeth clinched tightly closed and will not eat or drink.  They say that this is the signal that she is ready to go.  You know, like I said before, she is not in la-la Alzheimer's land.  She is still aware (or at least she was last Thursday when I was there last.)  Mele' said that today she told Mom that her parents and sisters were waiting for her in heaven, and that Mom smiled the biggest smile that she has seen in a long time.   So, all I can say to you is that Mom is coherent at this time, but has (in my mind) chosen to move on.  If in some sort of starnge way, you'd like to connect to "the Other Side" ... say to her sisters, this might be a good avenue for that.

I have asked Mom to come back to see me, if she could, once she crosses over or maybe before.  I know it sounds weird, but I just asked her ... who knows what will happen.  I've told her to not be scarred and to not worry ... that we know she will be in Heaven and she will finally have the life that she deserves.

At this rate, we expect her to pass within the next 2 to 5 days.   We will have a service at Memorial Oaks (Dairy Ashford at Katy Freeway), a mass at St. Cecelia's, and then a burial back at Memorial Oaks.   If anyone wants to sing, please contact me (Tom Jones or Englebert Humperdink).  You can watch this website, or call me on my cell at 52-426-5728 for more info.

This is the best thing for Mom, so we are very, very happy for her.   We should be joyful that she is taking this step.

September 24, 2004   Mariner Nursing Home / Grace Hospice

We received this report from Grace Hospice this evening:

Mrs. Perkins fell this evening, sustained a cut to the forehead, the bleeding was stopped it was cleaned with sterile normal saline, topical antibiotic ointment applied and steri-strips were used to keep the laceration closed. 
Neuro checks were done every hour x 3, and then once a shift x 24 hours.
She was medicated for pain, and is resting this evening.
We will follow up with a visit to see how she is doing and find out how the fall happened.
 Romeo Villarreal, RN
Grace Hospice of Texas
2807 Kings Crossing Dr. #342
Kingwood, TX. 77345
281 361 6032 Office
281 361 6035 Fax

September 24, 2004    Mariner Nursing Home / Hospice

Where should I begin?  
It has been quite a long time since my last update on this site, and its not because all was going well, or all was going poorly, but rather I just needed to step away from it and give it a rest.   But, I do need to bring many things up to date.

In late August through early September, Mom went back to the hospital.  This was a result of a drastic weight loss that had occurred because she has consistently slowed on the quantity of food intake.  It's almost like she forgot how to eat, but on the couple of times that I was feeding her, it appeared more to me like she just didn't like the food. She was feeding herself, but I had to put the food on the fork or spoon.  She seemed very happy that she was feeding herself.   The doctors presribed magase (sp) to increase her appetite and that helped somewhat, but she just really didn't feel like eating too much food.

Trying to analyze what was happening, Mele' and I began looking closely at her mouth.  Four or five or her teeth are rotten and "gone" that I'm guessing there is a LOT of pain associated with rotting teeth and recessed gums.  Back in May, we had gone to Dr. Emily Graham (a respected and rewarded dentist in the north Houston area) to get some kind of idea of how we could help Mom through this process.  At that time, Mom wouldn't open her mouth and we determined that the only way we could do any dental work would be through IV sedation.   I don't know why I didn't go forward with that plan immediately at that time.  Maybe it was because I was trying to rationalize the expense (more than $3000 all together) because several doctors told me that I should weigh the expense versus the benefit (cost benefit) of the procedure.   Well, it is not like we could not come up with the money, but it was just 'on the back burner' so to say.   I was hoping for Mom's energy to peak so that she could go through the process.  Then when she went into the hosptial in late June with the three different types of blood infection, and she never gained back her weight.  At that point, Dr. Tadros said she was not a candidate for any IV sedation.  Then back to Mariner, hoping to beef-up, but it didn't happen (down from 105 to about 80 pounds currently).

Anyway, all along, Mom has maintained eye contact and some mental contact with me.   As recently as yesterday (Sept 23, 2004) I was talking to me (ha) and she was responding to a question or to me by shaking her head up and down, or making funny eyes at me, or pushing my hand away when I pumped her full of too much fluid.  She's still here; she's not in zombie land like you expect the Alzheimer's people to be.  That is what is making me continue to press for quality of life, because she still is living, wants to eat and drink, responds so favorably to me, smiles like a light beacon.  It's all there and it crushes me to have to make these decisions (along with my sister) on how her care should progress.

So, I emailed Dr. Graham last Monday and she responded to me by phone on Tuesday.   The nurses at Mariner were pushing me to have a "dental consult" on my Mom so that they could try to find out why she wasn't eating.  And the nurses were asking us if we wanted a feeding tube for her (definitely No, per Mom's "Directives to Physicans").  The also talked about the possibility of her going into hospice care.   I met with Dr. Tadros and he told me some of the points of the hospice program and told me that Mom was qualified to be on hospice, no problem.  Dr. Graham came to visit Mom at 7:30 at night on Tuesday, towing her 3 kids and husband, to give Mom a look.  She found several cracked teeth and some fillings that were missing.  (How does our govenment, Medicare and Medicaid, expect older folks to take care of their teeth?  Have them all pulled?  Medicare and Medicaid do not pay for dental work.)   So, anyway, that was the Dental Consult that we needed.  

That night, I tossed and turned, trying to figure out what was best for Mom.  Here I was with her, rolling her in her wheel chair in the sun, sitting her outside in the breeeze ... she loved that.  (I have an mpeg of that with sound .. It's 20 MB so email me if you'd like a copy.)  She smiled so much, and laid her head on my shoulder, and cupped my face in her two soft hands, just like she did when I was a child.  She is still there; never left.   But, on the other hand, so many things are happening ... weight loss, confusion, body sores appearing out of nowhere, easily brusing, difficulty swallowing ... what if it were ME in this situation?  What would I expect from the people that love me more than anything in the world?  What would I expect my own flesh and blood to do and how would they treat me when I was so out-of-control; so helpless, so dependent, on the one that controls my destiny.   I feel helpless, and almost guilty myself, that I have let my Mom down some how; that there was something I should have done to prolong her life in a better way.  She is still there with me and she has not left yet.  If she would just sit there and stare off into space, I could handle it.  But she looks at me, smiles with those big brown adoring eyes, and I can't help but want to make sure that she is cared for ... tears roll down my cheeks as I sit here typing this; I feel helpless.  I feel responsible.

So, I began asking the nurses and others about different hospice organizations to see just what exactly could be done to help Mom.  I thought hospice was for people who were going to die in the next 3 or 4 weeks, or something like that, but it turns out that hospice is so much more than that.  There are several groups to choose from.  Aunt Georgette went through Vitas and I looked into a couple of them, but Grace (a newer one formed from employees of other companies) seems to be a good one.   My sister and I met with them and signed Mom up.   It turns out that Mom could have been on hospice a couple of months ago.  It allows for additional people to come in and see her and take care of her in addition to the Nursing Home staff.  But it means that she will not go to the hospital for any reason, and she will be allowed pain medication, breathing equipment, better wheel chair and bedding, and so forth, to live out her last months, however many they are.  They will correspond by email with me on a daily, or almost daily basis, to update me on Mom's condition.

Turns out that last night, Mom fell out of bed and hit her forehead.  She has a cut on it and they checked her out for a concussion, but all seems okay.   It's all amazing to me.  If you have any questions about this process, please feel free to send me an email.

I do suggest that you get your papers in order.  I have formed a company to help with that; the company is called Priority Plan, LLC.

Check out this link on hospice care:

July 29, 2004      Mariner Nursing Home

Visited Mom one day last week (July 19th) and yesterday, July 28th.   It was Mele's birthday as well, and Ben had his on I think July 23rd, but I'm probably wrong.  Anyway, Mom is alert and sitting in a wheel chair and moving around only a little bit.  Her energy is not back in her so she is not moving around.  I did pick her up and we walked about 20 ft and then she sat in a chair.  She definitely knows who I am, because she did the same thing she always does to me, her son "Ricky".   She took her two hands and put them on both of my cheeks sort of in a V, and gave me a big smile.   Amazing.   I go in this place and just about everyone is frowning an wishing they were dead.  Then I see my Mom and she is smiling at me, making eyes, and so forth.   Its a nice treat.  I know Mele' sees this sometimes too, but she usually has kids with her so she probably is less observant.   Nonetheless, Mom is frail and weaker than I have ever seen her.   When I was there, I told her I loved her, and Cousin Jimmy Craig Jamail also told me to tell her he loved her ... she is his God Mother.  I didn't have a lot of time to be with her, because I met with the Memorial Oaks Funeral Home and did some pre-planning arrangements.  They gave us a discount of about 8% off the standard pricing.  Sounds like the funeral will run just under $15,000 total.  BTW, if you get yourself cremated its a lot cheaper.  It would be under $5,000.   Mom will some day be burried in the area where Dad's mother (Maude Perkins) and the Stigalls and other family members.

July 14, 2004      Mariner Nursing Home

Amazingly enough, Mom is back at Mariner Nursing Home and gaining more strength each day.  I often wonder what gives her the drive to continue, but knowing how my Mom used to be, she was always a go-getter and a positive person, so maybe this is just part of her clinging to the threads of life in her world.   So, she's back and they got her a new wheel chair, more lightweight, and easier for her to maneuver around in.  While we thought she was leaving us just 2 weeks ago, now we see the miracle of the will to live.

July 6 - 7, 2004      Kindred Skilled Nursing Hospital

I visited Mom over these two days and I found her to be remarkably strong.  She is apparently recovering quite well and also she apparently has a strong will to live.  This bout in the hospital had her infected with 3 different strains of bacteria and she has recovered from all of them.   The doctors are just monitoring her white blood cell count now to check for further infection.  They say that she will be released in a few days time, if the infection is not found.

July 3, 2004      Kindred Skilled Nursing Hospital

On Wed June 30th, Mom had a T.E.E. test.  This is where they put a small scope down into your esophagus and it make an ultrasound of your heart.  In Mom's case they are checking to see if she has a heart infection, aka endocardietus.  It was positive.  Dr. Tadros said that she is seriously ill and that we'll just have to see if the antibiotics can clear up the infection.  He said that she has a blod clot in one of her heart valves, something that doctors call a "vegetation in the valve" and she has "bacterial endocarditus with repeated positive blood culture and T.E.E."  Dr. Tadros that she will be under antibiotic treatment for another 4 to 6 weeks.  So, the news is not good.  Both Mele' and I are preparing ourselves for a possible sudden end to Mom's trauma, and we can only hope that when "she goes'" it will be in her sleep, in the middle of the night.  She has suffered enough.

June 23 - 25, 2004      Kindred Skilled Nursing Hospital

I just spent a couple of days in Houston and I was able to visit Mom several times during that period.  Right off, I have to say that her condition is not so great.  She seems to be much less mobile but she does have control of her body movements and so forth.  She is sleeping in the fetal position and even when you visit, it is hard to get her to move out of that position.  She is not sitting straight up in her bed.   However, she is still smiling and communicative with facial expressions, not verbally. 

One of the evenings I was there, I brought an old high school buddy with me, Joe Lenart, to visit Mom.  She immediately recognized him.  I left them together alone for a few moments to get her a Coke (one of her favorite treats it seems) and when I returned Joe was just talking about all kinds of things.   Mom was shaking her head up and down like she knew what he was saying.  Later Joe told me that he thought she understood everything he said, because for example, when he told her that he had a daughter in college, she made that "your-kidding" facial expression like she couldn't believe it.  Amazing.   And, when I first arrived on Tuesday evening, when she saw me, she did the same thing she always does, she held up her arms with her hands in the air with the facial expression "Ricky!  Where've you been?"   She always does that to me when she hasn't seen me in a while.

So, I guess I can attest to the idea that she "is stilll there" somewhere, mentally, inside the world of silence and inside the myriad of hospital beds and mean and incapable nurses.

In fact, we'd like to get her out of Kindred and back to Mariner, but the problem is that I don't know if Mariner an handle it.   Mom has an antibiotic IV in her, so it would have to be in a room that has a higher level of care than the  one she was in before.   Hmmm.   I just don't know what the future holds.  We don't know the timeline.

June 21, 2004      Kindred Skilled Nursing Hospital

Mom is still at Kindred but she is expected to get out of there someday.   Since she started staying at Kindred, she has had 3 blood infections.  The first one was an E. Coli blood infection, the the second was a staff infection, and now the 3rd one is something called VRE.   Dr. Tadros tells me that Mom "is very sick", so tomorrow I am going to Houston for a couple of days to try to get a bearing on what is happening.   Mele' has been visiting Mom several times a week.  In fact, she said that Mom appears cheerful, has a good appetite, and doesn't even appear to be sick.  Strange.

Before these blood infections came up, Drs. Bochter and Tadros were treating Mom for some type of infection in the heart area.  I'm not sure if that is still the case or what is going on.   Hopefully I can learn more in the next few days.

Good news is that Janine, Darlene, and Sharon on planning on visiting Mom this weekend.  That will be a good thing for Mom to see some of her family, besides Mele' and I.   Anyone else who would like to visit, please feel free to do so.   Mom is still smiling and in fairly good spirits.  She doesn't talk anymore and we don't know why, but she just quit about a year ago.   Occasionally, you can get her to say something, but she doesn nod her head and smile.  It's not a gruesome visit.  In fact, you'll probably leave with the thought that you wish you could just communicate.  You know she's there and that she wants to talk.  It seems like that anyway.  Could be my imagination.   All for now; I'll write after I see Mom.

June 3, 2004      Kindred Skilled Nursing Hospital

Mom was moved over to the Kindred Skilled Nursving Hospital for a few weeks.  Drs. Bochter and Tadros think that she needs to go there to get strong antibiotic treatment.  When I last saw Mom on May 30, I was able to speak with Dr. Bochter in person.  He said that apparently Mom had a bad infection in her heart area, but that they couldn't definitely confirm it because of the DNR.   So, they were just going to treat her case as if she had that and then move forward from there.  Dr. Bochter said that Mom is not a "case" for any anesthia currently, so we are going to have to wait a while until she rebuilds her strength.

Just want to warn anyone who cares, that Mom is in continual jeopardy of leaving us and the fact that she has stayed with us this long is a testament to her desire to live.  You know, she does get a chance to see her grandchildren (there are 3 of them now, all Mele's) and that probably gives her the impetus to continue.  She has also witnessed another miracle, the fact that her son got married, but I hope she's not waiting to see a grandchild from Sandra and I, because that is not on the horizon.   Maybe she's just hanging on because she has that type of mental fortitude.  I know she is at peace with me and many other people in her life.  Maybe she's just waiting to see her sister Shirlee again before she lets go.  Maybe she doesn't have the option. 

I write this with the news yesterday that Ronald Reagan passed away, also with Alzheimer complications, but at the ripe age of 93.  Who would have thunk that he would live so long?  Maybe Mom will do the same?  She's 75 now, so that means you'll be reading this website for another 18 years !! ... (I need to buy more megabytes.)   Also, my neighbor, August Woeltz, passed away this morning at the age of 83.  Such a jovail soul who just 2 months ago I was joking with and he was drinking his weekly champagne with his wife Margarita.  (They drank a bottle of champagne every Sunday morning instead of going to church.  They do not believe in a higher power.)  A few weeks ago when Sandra and I were visiting August in his hospital room, I asked him to come back to me within 3 days and tell me if there was life after death.  At that time, he did not tell me that he would, but I still have a couple of days left until he may come back with the news; I'm waiting.  Death and Life are so closely tied.  Life is so fragile.  And, those of us who are healthy do not realize this.  Rest in peace my friend August; even if you find that there is a heaven, I'm sure the Lord will let you in.

May 26, 2004      Cypress Fairbanks Hospital

I spoke with the nurse on charge, Billy, this morning and he said that they attepted to do some ultrasounds on Mom's heart because they are looking for some place that might be bleeding.  Because of her prior history with the dufony (ulcer in her stomach / throat that was laser carterized) they think there may be some other bleeding.  Mom is listed on DNR (do not resuscitate) in the chance that she has a heart attack or has breathing complications.  I guess something could happen at any time; I just don't know, but I do know that we have been lucky to have a few more months with Mom ever since her bouts in the hospital at the end of 2003 and into January.  But, she is a fighter, as we have seen in the past.  I have a strong feeling that she will bounce back from whatever is ailing her at the moment.  That is, unless it is cancer, or something like that.  I just pray that Mom goes fast and in her sleep, when the time does come.   Same way I want to go.

May 25, 2004      Cypress Fairbanks Hospital

Mom was last night to the ER, but I think she's going to be okay.  They  did the blood work on her (they never got the results from the other lab) and found that her platelets are at 20,000, which is low, and they are going to give her some blood.   I visited her in Houston before I cam back late in the afternoon.  The swelling in her feet and gone down and she was getting a lot of fluids intraveneously.  I fed her lunch and she ate quite a bit.  She seemed to really enjoy the salad and tomatoes.  Come to think of it, I don't recall her having salads at the nursing home.  I'll have to bring her some in the future.  She was staring at the tomatoe like it was gold!  Poor thing, I wish she would talk to me.  She was rolling her eyes back in her head and sort of falling asleep, but I was wondering if it wasn't something else, I don't know.  Finally, after I had fed her about half of all of ther food, she started to smile and I was tickling her, and told her I loved her, and I also told her it was my birthday, and so forth.  When I told her it was my birthday, she cried a few tears, so I know that she knows what is going on.  She smiled real big with me, and squeezed my fingers.  I wish she still would talk to me; I miss her so much.

May 24, 2004      Mariner Nursing Home

Sorry I haven't updated in a while; it seems like life is hectic.  Mom had been doing well, then became more lethargic towards the end of April.  Throughout May she has been not moving about the halls in her wheel chair like before.  Also, she isn't smiling so much.  

So, as of today, she has some type of "skin rash" or spots on her skin.  Also, her feet have swollen, I think they call it edema.   Dr. Tadros and Dr. Bochter are analyzing the situation and they have ordered some blood work earlier this week.  However, the lab that the blood work is sent to takes several days to get the results.  I don't know why, but I think they send it out to the ultimate cheapest lab in the state to get the lowest price.    Mom will probably need to go to the hospital for a "tune up", to make sure electrolytes and everything are okay.

April 21, 2004   Mariner Nursing Home

Something is going on with Mom, but we're not sure what it is.  Since she doesn't verbalize at all and she just smiles or frowns or makes other gestures, we cannot tell what is happening.  Its like trying to diagnose what is wrong with a newborn.

My sister and I have several ideas.  Mele' said she thought that Mom knew it was around Easter time and that was around the time that her Father died, so she may be depressed.  I think that it is due to some physical problem.  Before Mom lost her speech, she was having pain in her leg and thigh area.  The doctor gave her a few cortizone shots to make the pain go away and I'm thinking this might be the case again, but we probably won't know if it is.  I recall that when I was walking her around last time, that she was limping a little, and favoring one leg over the other.  Her coordination was lower than normal.  At other times, her and I would "dance" a little.  (Mom, was a HUGE ballroom dancer, and she dances automatically to almost any song that you want to dance to.)  Also, I have noticed that at least 2 of her teeth are missing fillings.  One of them had a root canal so that one probably doesn't hurt, but the other one lost its filling and I'm sure is sensitive.  She is quite often grinding her teeth, so there could be several fillings in her mouth that need attention.  The dentists tell me that the teeth grinding often times will dislodge fillings and expose the open holes in the teeth and enable more areas for tooth decay.  I fear that this is the problem that Mom is having now, a preoccupation with pain from her mouth.  She is eating less and losing weight.   She also has acquired a urinary tract infection, which I am about 75% sure is because she seems to be "wet" everytime that we visit her, so the care is not the best.  (The best care would be to change her every 2 hours on a regular basis, but I believe she is lucky to get changed 2 times a day.)

So, I have received info on the costs of an Anethesiologist to give Mom and IV sedation during a big Dentist visit.  We have found a great dentist, but we're a little put back with the cost of the sedation.   The dentist expects Mom to need 3 to 4 hours of dental work, lets use 4 hours as the estimate.  One doctor told us it would be $450 for the first hour and $75 for every 15 minutes after that with no minimum time, which would cost $1,250.    The other anethesiologist told us he would charge $600 per hour, minimum of 4 hours.  Our cousin Chris (jamail) Smith is an anethesiologist so I need to find him to ask him what he thinks.  Maybe he has a buddy or maybe even he could do it for a lesser charge.   The dentist fee for the 4 hours could range between $1500 and $4000, depending on what she does.   We don't want them to do a perfect job, but we do want to put something in her mouth to stop any pain that she may have.   We have some money dedicated to assisting Mom and this most probably, in my mind, would be a good use of the money, at least one time.   Maybe I'm wrong about this, but I feel that it is a worthwhile expenditure, one time, not repeatedly.   Please send any ideas you have on this.

April 1, 2004      Mariner Nursing Home

I can't believe it!  Mom talked to me yesterday!  She said 5 or 6 complete sentences and she told me that she didn't want to talk before because it would generate too much attention!  (April Fools!)

I was with Mom yesterday though and I was taking her to a couple of different dentists to talk about doing some type of IV sedation so that they could work on her mouth.  Mom has lost a cap and a large filling in her teeth, and she's got to be in some pain.  It was a great sunshiney day, and I put Mom in the truck, her wheel chair in the back, and slapped some sunglasses on her and seatbelt, and we were ready to go.  I think the traffic on Hwy 290 feeding into the 610 beltway made her a little nervous though.  Of course, I drive pretty fast also, and she was always nervous about that.

We met with 2 dentists, but the first one was really some type of reconstructive facial bone type of guy and we were probably misdirected to him.  I cannot recall who pointed me to him, but it was one of those other dentists out there.  But I was also referred to Dr. Emily  Graham who apparently is well known, kind and a good dentist.  Her office is at 24814 Kuykendahl, near the Woodlands.  (Hi Dr. Graham ... she said she would be visiting the website).  I believe Dr. Graham is going to be able to help Mom, but the problem is that an IV is going to be required to knock Mom out.  The cost of the IV is about $900 for a 2 hour minimum.  I asked the dentists how other old folks get worked on, and they said that unfortunately most of them don't !!   (Personally, I do not understand why Dental Work is not covered under Medicare.)

Anyway, I've scanned in a couple of new photos of Mom.  Actually, they were taken in 1952, when she was 24 and she was in Galveston with one of her boyfriends.   Nice and innocent.

Mom is doing great at Mariner but of course the ongoing problem is trying to keep her "changed" ... I guess she must get changed twice a day, but she could probably stand to get changed 4 times a day.    More later.

March 28, 2004        Mariner Nursing Home

It looks like disrobing has come and gone.  I can only wonder if her disrobing was her attempt to get our attention that some one was abusing her either physically or verbally.  I have been thinking about installing a video surveillance type of system where I could secretly watch how she is being treated, at least in her own room.   Also, it would help us to monitor the number of times per day she is changed.  Because if she is either wet or messy every time that I go to see her, then I can only guess that she is in that condition all of the time.

How does someone handle this?  When you are "on the outside" meaning that you are not in a nursing home, you can say and think to yourself how terrible this must be.  But the reality is that these people are close to 100% helpless to do anything about it.  The only people that can make a change are the family members and loved ones who care about them.  Otherwise, they are destined to sit in wet and smelly diapers for the rest of their life, which could be decades.  Who is going to help?  Is there a "right" to not to sit in a wet or messy diaper?

(If, someday, I end up in one of these nursing homes, let it be known now that I absolutely never want to sit in a wet or messy diaper.   I want to be changed every 2 hours, whether I'm messy or not.  Thanks in advance, BTW I have my long term assistance care insurance policy already in place.)

I have finally found a doctor who will administer dental care via sedation since I'm sure that my Mom would not voluntarily go for it.  We've got a meeting with a doctor in downtown Houston and I suppose I'll be transporting Mom in my truck myself.  That would probably be the easiest thing to do, plus she likes to get up and walk around. Hopefully this will work, but I'm hesitant.

February 2, 2004      Mariner Nursing Home

Here we are, a little more than 14 months later, and we're finding that Mom is disrobing again.  In the hallway of the nursing home, or wherever, she suddenly removes her clothes.  Why does she do this?  What is she trying to tell us?  Is she being mistreated in any way and is this how she lets us know?  How can you understand what 's going on in her mind?  The psychiatric doctors tell us that disrobing is normal for Alzheimer's patients.  In fact, when Mom was at the Hampton Assisted Living place, her and other ladies often were found naked sleeping in other peoples beds ... is it a sign?  Some may say that she must be hot.  Some will say that something is bothering her, maybe its her teeth?  I know they're not in good shape.  Maybe she is having some pain in her mouth?  That could be, but how do we take her to the dentist?  She won't even let me help her brush her teeth.  I know that her shoes don't fit; the only ones that fit were lost somewhere, so I'll get her some new shoes, and we can put some tight shirts on her to try to keep her from disrobing.   And Dr. Tadros has recommended that we start her on the darn Risperdal again, at 0.25 mg in the evening to calm her apparent agression.  But, that's not solving the problem.  She is saying to us, "I need some attention here ... everything is not hunky-dory."   (those are Mom's words).  I hate to put her back on the drugs, because that was what sent her into being a Zombie before.  She was on 3 mg of Risperdal a day and she showed little, if any, expression.  That was when she stopped talking and she has never spoken a sentence again.  I think it did permanent damage before.   Anyway, I'll be visiting her in a day or two and hopefully I can figure something out.  Mele' is seeing her a few times each week, but she's not sure what is going on either.

January 11, 2004      Mariner Nursing Home

I can't say that I've visited Mom for a couple of weeks now, but Mele' has been seeing her and reporting back to me that things are fine.  We were having a little trouble with Mom not being changed, but it appears that it is only one one of the Nurse Tech's watch, as when Mele' goes there at other times of the day, Mom is dry and happier.  We'll have to make sure the Mariner management is aware of this.  I'm currently distracted with my wife's recent medical problems as she has been diagnosed with colon cancer and she is going into surgery on Jan 15th.  So, please forgive me for being lapse in my reports.  In fact, now I'm managing my wife's informational page at and click on Sandra's Surgery.   I'm really learning how to be the caretaker and maybe this is a destiny for me, I don't know.  Anyway that is the way it is.

January 4, 2004      Mariner Nursing Home

Two days ago I called the nurses at Mariner to see how Mom was doing.  It turns out that they had sent her to the Cypress Fairbanks hospital because she "ate a Christmas ornament".   Well, it turns out that they did an x-ray on her and they did not locate anythin in our gastro track, and she is still smiling, so we don't know what happened to it.  The witness said that it was one of those type of ornaments that looks like a candy cane, but I'm not sure if it was glass or wax.  Nonetheless, she ate it, but she appears to be fine.  Today is 2 days later and we haven't heard anything more about it.

Mele' went and visited her today (Sunday) and walked around with her and so forth, and things are swell.

December 24 - 26, 2003       Mariner Nursing Home

Mom returned back to the Mariner on Sunday, December 13 and since then has been doing well.  Dr. Tadros had additional blood work done on Mom when she was in the hospital and she does not have any internal bleeding.  Her recurring nose bleeds are, apparently, from her messing with her nose with her long finger nails.  The day after Christmas, Sandra and I visited Mom and cut her finger nails to where they are just about as short as they can get.  Hopefully this will help with the nose bleed problem.

Overall, Mom was doing well over Christmas.  I did not take her to our cousins on Christmas Eve nor did I take her to Mele's house on Christmas morning.  I'm second-guessing that decision, but I don't know ... I'm really don't think that Mom would want pictures of her in her condition.  I don't think she would want people to have long-lasting memories of her like this.  Then again, this is a "stage of life" however it is and sometimes its good for young people and all ages of people to understand and cope with what it looks like to be older and in need of care.  I fear we are all heading in that direction.  Buy your Long Term Care Policy now (I recommend the GE Financial Plan).

We are still having issues with the Mariner group not changing Mom often enough.  Its despicable for them to allow people to wallow in their feces and urine ... especially when it is Mariam Jamail.    As with Park Manor, I have come to know a few of the residents that live around my Mom.  Some of them are very competent and can carry on conversations.  One lady across from my mom has a very pretty bird and the lady is probably about 80 years old or maybe 85.  I think that next time I visit Mom (around Jan 6th), I'll spend some additional time and speak with her.  Another lady in a wheel chair was so happy that I acknowledged her, that she came up to me and grabbed my hand, and kissed it!  Amazing.

Mom is making a lot of nice facial expressions and sometimes says a few words.  She is not allowing anyone to brush her teeth still, so often times she has food stuck to her teeth, which drives me crazy.  Sometimes I can talk her into brushing the front 5 or 6 teeth but it takes about 30 minutes to get her trust, and its lost almost immediately when she cannot remember to not swallow the toothpaste.  I think I should try brushing with just water to see if that will help.

Mele' has a new email: or was it .net?  Anyhow, she's out there.  Happy New Year.

December 11 - 13, 2003         Cypress Fairbanks Hospital

Mom has had occasional nose bleeds over the past 2 or 3 weeks and we really don't know why she is having them.  Her doctor says she is "prone to bleeding" and that's really about all there is.  She spent last night at Cy-Fair Hospital after having a nose bleed the entire night before at Mariner.  Some doctors have said that it appears that Mom is "picking her nose" and the problem is that her finger nails have grown fairly long again.  I cut them about 6 weeks ago but they really grow fast.  She wouldn't let me touch them about 2 weeks ago.  I think I'm going to Houston in the next day to visit her and to cut those finger nails.  When they were cut before, she did not have any nose bleeds.

We had to complain to Mariner the other day because more frequently we were finding Mom with very wet diapers and old poop in her pants.  Its not a nice thing to talk about, but its a bad thing when the nursing home doesn't change the residents.  It's one of their primary care-taking functions that they are to fulfill.  So, we finally complained after Mele' visited Mom and found her with urine running down her pants and smelling like a pile of poop.  The nurse assistant on duty said that the shift before her wasn't changing them like she ought to, of course, we don't know which one is to blame; we just know that she's not getting changed or checked every 2 hours like they are suppose to do.

November 22 - 23, 2003      Mariner Nursing Home

Nice visit with Mom this weekend.  She was especially amorous.   When I arrived on Saturday morning, she immediately recognized me and put her arms out to hug me.  This is a good thing.  I brought her a new Texas sweatshirt and I went and took her to her lunchroom and watched her eat.   Then we went outside (it was quite warm) and I got her out of her chair and walked her around quite a bit.   She did tire pretty easy, so we'd sit down and get her to catch her breath.   The weather was warm and sunny, with a nice breeze.  As we sat on the beches, she held my hand firmly and leaned her head to rest on my shoulder.  She was very, very happy that I was there with her and I think she missed me a lot.  (It had been a almost 3 weeks since I visited.)  But she wanted to walk all over the place.   Finally, she got tired.   I took her back to her room where she went to sleep.  

The next day things were about the same.  I brought a dozen doughnuts for her and the nurses / residents, and she ate 2 chocolate covered glaze doughnuts.  I spent another hour and a half with her and then she was ready to cruise about on her own.   Many of the nurses now realize that she can walk, so I'm hoping that they'll get her up and about every once in a while.

November 18, 2003      Mariner Nursing Home

75 years ago Mom was born in Houston in St. Joseph's hospital.  Same place that I was born some 32 years later.

I can't say that Mom is having a good birthday.  She is in decent health without any recurrent problems, but she is living her life in the same hell that she had pleaded with the Lord to protect her against.  Her cross to bear, one among others.

Mele' visited her today and took her a cake.  She called me on her cell and put me to Mom's ear.  She had her kids with her as well and we all sang Happy Birthday to Mom.   She had so many candles on the cake that it made mom cough.  She's okay now.

I'll be visiting with her this weekend.  

October 29 - 30,  2003      Mariner Nursing Home

Mom is doing very well.   She is now off of all drugs, except some vitamins, and she seems to be in a good mental disposition.  She has very little, if any bleeding, and typically these are occasional nose bleeds.  I spent a few hours with her each of these two days, and the weather was nice enough for us to sit on the patio outdoors.  While sitting on the little bench, she grabbed my hand and held it tight, and then rested her head on my shoulders.  Earlier in the day, I gave her a manicure and attempted to paint her fingernails, but I did not do such a great job.  However, she obviously appreciated all of the attention.

The nursing home has her in a wheel chair with a safety belt around her waist.  This keeps her from standing up and walking around and also keeps her safe.  Otherwise she would be risking a fall and a trip to the hospital and potentially a broken hip.  However, when I'm with Mom, I get her out of the wheel chair and we walk around as much as possible.  She enjoys this freedom and she is quite steady on her feet.  The nurses were surprised my Mom could walk, so maybe they'll get her up and walk her a couple of times a week.  I guess I need to request that.  All in all, she is laughing, smiling, and in a good mental state.   She is not talking though, only saying a few words here and there.  She has no bruises on her arms any more because they have not been taking any blood from her, so this is also a good thing.  Thanks for reading.

October 28, 2003   Mariner Nursing Home

Once again, no news here is good news.  I haven't been to see Mom in a couple of weeks, but Mele' has been giving me frequent updates.  So, I will be in Houston for the next couple of days and I will report back what I find.

October 10, 2003      Mariner Nursing Home

Mom did return on October 6th and has been eating very well.  Dr. Magdy Tadros has been giving her injections of Vitamin K on a regular basis.  Evidently (I'm no doctor) injections of Vit K aide in stopping the blood loss.  In fact, on Oct 8, Mom had a bloody nose and I guess she is getting these frequently.  They called the doctor and he told the nurse to give her a shot of Vitamin K.  Reportedly, the bleeding stopped soon after that.  Dr. Tadros said last week that Mom's liver numbers are off.  The Reminyl was causing the liver to become  more active, so Dr. Tadros has a plan to stop ALL drugs, including Zoloft, and to see how the liver responds.  THe only medicine that will continue will be the Vitamin K.  We hope that the liver responds positively, by lowering its production of "whatever, enzymes?" that will in turn, assist Mom in reducing whatever bleeding she has.  This is important. ... Tomorrow is the Texas-OU game, and I'm going to make sure that the put one of Mom's UT shirts on her.

NOTE:  If you are a family member, please realize that the our doctors are truly amazed that Mom is surviving through this ordeal.  They say that her will in incredibly strong to survive.  As you know our Mom, she is living for a purpose.  I think that she loves life so much and that she is probably very scared to die.  I hope that in the next few weeks I can spend some time with her and ease her concerns about dying.  While I of course do not have first hand knowledge of death, I am told by the faithful and those that claim to have been living on "The Other Side" that it is a good thing.  In fact, they say, we spend more time on "The Other Side" than we do on Earth and out trips to Earth are only brief jaunts with a purpose.  Hmmm.  I don't know what to think about all of that, but the book I read was called "The Other Side".  Sorry, I'll have to recall the author.)  Anyway, I guess what I'm trying to say is that eventhough my visits with Mom are very good and she knows me and my sister and her kids, and she laughs, and giggles a lot, and sometimes will say a few words ...  we have to remember that she is living on the edge.  Our doctors are amazed and that is worrisome, because it means that at the moment she is a living miracle.  She is still here for a purpose.   Dr. Tadros told me the other day that most other families put their parents into hospice when they have reached the stage that Mom is at, but Mom has energy and she is alive.  This is not the time for hospice for Mom.  She has the energy and the will to live.  If anyone ever thinks different, please slap me and tell me, but for now I chose life.  Don't get me wrong.  Mom is on DNR (Do Not Resuscitate) orders, so that if something does happen to her, she will not be resuscitated.  We know Mom would want that and hopefully that would be the most peaceful way for her to go.  She always said that "I hope I die in my sleep" ... I pray that when the time comes, God will give her at least that wish, for He has foresaken her on so many on her others.  Sorry, it has to be heavy some days.  

October 6, 2003              Cypress Fairbanks Hospital

Mom should be returning to the nursing home tomorrow.  Her H&H is up to around 12.8 and Dr. Uma Mojan just completed an upper GI.  I have heard that the report is good and that Dr. Duchini's laser carterization from last month has healed up that area.   So, it does not "appear" that the blood loss is coming from the stomach or esophagus.  It must be coming from elsewhere, because there is definite blood loss, although it is not very heavy.  

September 30, 2003      Cypress Fairbanks Hospital

Today Mom was transferred back to the hospital, as was expected, to receive more blood.  Her H&H was down to around 7.3 and Dr. Tadros himself said that he couldn't believe that she was functioning so well at that level.  Nonetheless, a healthy H&H is around 13 to 14 and a critical was under 10, so it does seem amazing.  Mom was still zooming around the place in her wheel chair.

September 26, 2003      Mariner Nursing Home

No news is good news.   Mom has been stable now for several weeks; 26 days to be exact.   That is good news.  Mele' and the kids have been visiting her several times each week, and I stop in Houston whenever I get the chance; averages about every 2 weeks.   Yesterday, I visited with Mom for about 3 hours.  I took her out on the patio at the Mariner and got her out of her wheel chair.  She sat on one of the little iron chairs they have out there.  Funny thing is that she kept propping her feet up on her wheel chair.  I took a photo and I'll upload that one here soon.  She wears her huge smile on her face all throughout this ordeal.  She is well-known for that smile and it makes the people around her smile also.  She is so social at the Mariner Nursing Home.  She gets in her wheel chair and cruises all over the place. It usually takes us about 15 minutes to locate her whenever we visit.  I think she's doing well, mentally, that is.  I think she is as happy as she can be, or as happy as she can be for the time being.

Now, the flip side is this:  I spoke with Dr. Tadros today and he told me that her hemoglobin count (her H&H) has been dropping and it is now around 8.0.  I believe that normal is around 11 or 12.  Dr. Tadros has taken Mom off of Reminyl because something is effecting her liver count.  He found that her liver is doing better not that it is off of the Reminyl.   And he is probably going to take her off of all medication to see if her liver will return to normal.  He says that the liver is not secreting enough of the "clotting chemicals" that are needed to keep her from bleeding.  He said she will need to see a hepatologist (liver doctor) probably down at the Baylor Medical Center.   More on this later.  But for the moment, Mom is rolling around at the Mariner, getting fairly good care, and she seems happy.  

When I was with her on Thursday, we sat down outside and I started to tell her about her liver, but it seemed to depress her as she stopped smiling and she gets a worried look on her face.   Then I stopped talking about it and said "Don't worry Mom, we're taking care of you" ... and her smile came back.  So, she does understand what is going on, and the nurses have told me this also. 

September 12, 2003      Mariner Nursing Home

Mom has been doing well since her laser-surgery about 10 days ago.  Dr. Duchini said that we may need to take her back and have a second application of the laser to ensure that the area is sealed up.   Mele' has been visitng Mom as I have been traveling quite a bit and I am traveling again next week.  I will be visiting her soon.

September 3, 2003      Mariner Nursing Home

Dr. Mohan (her GI at Cypress Fairbanks Hospital) recommended that Mom go downtown to Baylor Medical Center and have a special argon laser treatment of the spot in her stomach that was bleeding.  Dr. Duchini performed the laser carterization.  I followed Mom in the ambulance downtown and was with her during the procedure.  All went well.

August 30, 2003         Cypress Fairbanks Hospital

Now Mom is out of ICU and back upstairs at the hospital.  We are making arrangements to have a very special type of nonevasive surgery performed on her next week.  She'll more than likely go back to Mariner and then be shipped to Methodist hospital downtown on Fannin, next Tuesday or Wednesday morning.

August 28, 2003         Cypress Fairbanks Hospital

On my way back from a business trip I found out that Mom had thrown up some "brown coffee ground looking stuff" that was a little bit of dried blood.  Evidently she had been bleeding a little, so they sent her over as a precaution.  Dr. Mojan said that she did not have any active bleeding, but she was anemic.  They gave her another pint of blood. 

August 22 - 24, 2003      Mariner Cypress Nursing Home

I visited Mom this weekend and got her situated at Mariner.  She was talking a lot and recognized me immediately.  She spoke actual full sentences.  It was great to see that she was starting to talk again.

August 20, 2003         Mariner Cypress Nursing Home

Mom has moved to the nursing home right next to Park Manor.  Park Manor did not have any Medicare rooms available and we did not pay for a bed hold.  By not paying the bed hold we saved $750 that would have had to come out of our pockets.  Mariner is "okay" ... it has some nice benefits, such as a big shady patio where the folks can go outside and get some air, but I guess they only do that when they get visitors.  Mom also has more places to go in her wheel chair.   We'll see how it works out.  Mariner does not charge a bed hold like Park Manor does, so when she leaves she'll be able to come back to her same room. 

August 14, 2003         Cypress Fairbanks Hospital

Mom has moved out of ICU now and is in a quarantine bed upstairs in the hospital.  They still haven't received the test results on her urine.  Dr. Tadros left me a voice message today and said that he and Dr. Mojan had consulted with the Baylor College of Medicine about how to treat Mom so she doesn't hve a relapse.  They are talking about using a LASER to carterize the tissue.   I need to find out more about this.

August 11, 2003               Cypress Fairbanks Hospital 

Mom had to return to the hospital today.  She was coughing up blood.  When she arrived in the ER, they said that they smelled an infection in her urine ... so now she is quarrantined until the urine test comes back, which may be 5 days. 

August 9 - 10, 2003         Park Manor Nursing Home

Visited Mom in Houston this weekend.  She was doing well.  Got her a few new clothes, shirts and sleeping wear.  She was spending more time in her wheel chair, which is good.  But that may be a sign that she isn't feeling as good as she was.  Over the past week she has been walking around all over the place and bothering the other residents of Park Manor.  In fact, they had to move her to a different room because she was being too noisy for her room mate.   Anyway,  most people think it is good that she is active and moving and eating, etc.   They did have to take some blood from her on Saturday, August 9th and they had to wrestle with her.   I was wondering if that was going to cause her to bleed again, like maybe it was causing her blood pressure to go up because she was being held forcibly.

August 1, 2003         Park Manor Nursing Home

Today is Mom and Dad's anniversary.  They would have been married 44 years.  They sent Mom back to Park Manor Nursing Home last night.  I called there and they said she was smiiling, so that's a good thing.  I just got off of the phone speaking with the Nurse and Mom.  They are having a hard time trying to keep her in the wheel chair.  She wants to stand up and walk around everywhere.  But, a couple of days before she went into the hospital, she was walking around and fell down and bruised her eye very badly.  Maybe that contributed to her having to go back to the hospital.  Really not sure.  Anyway, she is in good hands for now.

July 27, 2003            Cypress Fairbanks Hospital

Just back from Houston where I left my happy and content Mother laying in her ICU hospital bed.  Fortunately, most of the nurses at Cypress Fairbanks hospital are great. Sandra and I spent Friday through Sunday in Houston, checking up on Mom each day.  At first, she wasn't so happy ... no food and they were pumping a lot of blood from her stomach.  Dr. Mohan did another scope on her, pumped ephedrine into the bleeding ulcer in her esophagus, and now she is healing.  Dr. Mohan said this will probably reoccur every 6 weeks to 2 months.  This is the third time for us to go through it.  I expect that they will dischrage her on Tuesday or Wednesday if everything goes well.  We are paying the $105 per day "bed hold" rate at Park Manor, so we want her to get back there as soon as she is able.   All for now.

July 23, 2003            Cypress Fairbanks Hospital 

Unfortunately, Mom's bleeding started again today.  She was sent to the hospital and they found that she has some internal bleeding in her stomach.  So, they are giving her 2 pints of blood today and are going to scope her from the top, on Friday.  I'll be in Houston this weekend with her; Mele' is out of town at the moment.

July 9 to 10, 2003            Park Manor Nursing Home

I find it hard to believe ... but Mom is on a rebound!  As I said in my prior message, she is probably healthier now than at anytime in the past year or so.   With that said, there are a few things worrisome.  One is that she is getting up and walking around a lot now.  The nursing assistants have told me that Mom is starting to remove her clothes now.  This suggests that her mental state is close to what it was in November 2002, when she was living at the Hampton Assisted Living.  We never quite figured out why she was removing her clothes.  This time, I am thinking that maybe that was a signal from her that she is having some other type of pain or something else is bothering her.  What that is, of course I will not know until after it happens.  But for today and tomorrow, she is happy, eating well, moving her body and getting exercise and so forth.

One of the ladies that lives there has watched Mom quite a bit.  She said that Mom is at "top speed" in her wheel chair and she is very agile.  She can weave between people and things and not hit them and also not slow down.  So, this place is more like a racetrack to her than anything else.   There are no medical concerns presently, but we are keeping an eye on the situation very closely.

On June 28th, Mom's sister Shirley visited with her neices Suzanne, Janine, and Darlene.   They said that Mom's condition was good and it seems that Mom is happy living in her world.  All for now.

June 23 to 25, 2003            Park Manor Nursing Home

Just returned from a trip to Houston and of course visiting Mom was one of the highlights.  She is doing VERY WELL and seems to be VERY HAPPY.  Her appetite is up, she is smiling, moving around in her wheel chair and at times walking.  Today at lunch they had turkey and dressing and a few vegetables and dessert and she just about cleaned her plate.  She is also fond of bananas as I bring her a bunch whenever I visit.  Yesterday she let me cut her fingernails and clean up her nails.  Today I put red nail polish on them and she was very happy.   This Friday she'll have her hair dyed and cut and set in anticipation of a visit from her family this weekend.  Janine emailed me and said that her and Darlene, and Aunt Shirley, and Suzanne were going to make a "road trip" to see Baby Elena and Mom.  That will be very nice especially since Mom is in just great spirits and health.

However, because she is starting to stand up and walk around, we fear that this may be setting her up for a fall, literally.  And when old people fall down they tend to break their bones, especially their hips.  And I have heard stories that once someone breaks their hip and they are old the chances for recovery are slim.  So, this is a concern now.  Her health is apparently "too good", if that could be the case.

Today, several times, Mom looked at me and "beamed".  She was totally in-step with who I am and what I was doing and she was extremely appreciative.  Still not talking too much, but she is making the hand motions and gestures that are familiar to me from earlier days.  She is not some sort of drug-upped vegetable living out her final days in the nursing home.  In fact, if you looked at her today, her appetite and her mental stability, I would guess that she is the healthiest that she has been in the past 6 months.  Strange how we have arrived from where we have been.

June 13, 2003                Park Manor Nursing Home

Just spent about 24 hours with Mom.  She appears well, zooming around in her wheel chair, smiling at most people (unless you come to stick her with a needle).  They are having a little trouble getting her to eat.  I think it is because they are trying to spoon feed her rather than handing her a spoon or fork with food on it.  Also, I had a bunch of bananas and when I brought them to her and asked her if she wanted a banana, she actually spoke and said "Yea!".  She is in Room 109A and the lady next to her is very nice and has most of her capacities about her.  She tries to get Mom to talk, but it doesn't happen.

Dr. Tadros had called a meeting between the family (Mele' and I) and the Park Manor Staff (about 6 of them) and the doctor, and the topic was "alternative feeding methods".  Well, there are 3 options: 1) trying to feed her by mouth, 2) a "peg tube" that is a direct line into the stomach, and 3) a feeding tube through her nostril.  Mele' and I both know that Mom doesn't want any tubes like that, so we told them that it was by mouth or nothing at all.  I guess they just wanted to formally tell us that.

I wish so badly that Mom was in Austin so that I could be much more involved in her quality of life.  Mele' has 3 kids now and she doesn't get to visit Mom very often, and the time with her is not one-on-one, but rather trying to maintain 3 kids while trying to talk with Mom.  So, I guess I am the only "real intense visits" that Mom gets.  I roll her outside for a while (she doesn't like the humidity or heat much) and we just sit around and try to talk.  Actually, it's amazing how fast 2 or 3 hours goes.  Alas, I'm traveling again next week so I will not be able to see her for another 8 days or so.

June 9, 2003            Park Manor Nursing Home

Mom has made it back to Park Manor again.  The bleeding has stopped and again, no actual "fix" was made to solve the bleeding problem.  According to Dr. Mohan, her GI, she will just be in this cycle of bleeding, going to the hospital, under extreme care at the hospital, and then back to Park Manor, for the unforeseeable future.  I guess that during one of these trips, or cycles, she will lose her energy and something else will happen.   But for now, she is at Park Manor.

We need to focus on her getting enough liquids in her body, as the last time that she went to the hospital, the hospital claimed that she was dehydrated.  This seemed to alarm a few of the people at Park Manor because they want to ensure that their residents are receiving the proper fluids and nourishment necessary.  I'm traveling to Houston to visit Mom a couple of days this week, so I'll have a fresh report soon.

May 29, 2003            Cypress Fairbanks Hospital 

It's a Merry-Go-Round and I want to get off.  Last night, we visited Mom in Park Manor Nursing Home and things were much different there.  She is located in Hall 100 now and evidently she is not getting very good care.  She has "fallen" out of her wheel-chair twice and she is not eating her food.  I imagine that they are trying to force feed her or they are feeding her food that is very bland and undesirable.  While I was there I fed her cookies and coke and ice cream and other types of caloric food to try to get some energy in her.  She appeared very white to us and she herself noticed that her hands were clammy.  Today, Thursday, we visited again and Mom looked a little better but still not eating.  She still had the same water next to her bed that she had the night before.  I don't think that anyone is visiting her to give her water or to encourage her to drink or eat.  When we arrived they said that she had just fallen.  Maybe she was trying to get up to get her water, but I don't know.  I think the nurses there have gone down hill.  While we were visiting with Mom, I was able to straighten her up and then she started smiling very big.  That was nice and as I bent down to move her in the bed, she placed one hand on my face, cupping my chin with the palm of her hand ... just like she used to do so many times before in the good days.  At that split second, I knew what she was thinking ... and then it passed.

Alas, while we were there the nurses came in and took Mom's oxygen respiration percentage which they measured at 70% through one of her toes.  Then they tried to get her temperature and it came in about 97.5 or so.  They called the doctor and told him she was at 70% and he told them to send her to the hospital.  An ambulance came, they took her away, and we went over there with her.  The ambulance techs and the nurses in ER were asking us what was wrong with her.  They measured an oxygen respiration rate of 99% on her finger which they said was very good.  We sat with Mom in the ER room no. 8 until Dr. Tadros, her doctor, came in.

Dr. Tadros felt around her kidney area (recall she had that kidney splint installed last week) and she indicated that her right kidney was hurting her as she grimaced when he touched it.  He thought that maybe there was an infection in it somewhere and so he was going to check the blood results to make sure there was no infection.

We left and returned back to Austin.  Later, the ER doctor called me and told me that Mom was dehydrated and she was going to need to spend the night more than likely.  He still didn't have the blood work back yet.  So, they moved her to ICU and her friend in ICU, Nurse Maude, was assigned to take care of her.

Late in the day the nurses called for the authorization to proceed with another endoscopy (I'm going to start counting) to see what is bleeding.  That is happening as I speak.  More later.  Poor Mom; what can I do?

May 28, 2003

Today I am going to visit Mom.  I haven't seen her since May 9th and I truly miss her.  I hope that she isn't mad at me for not being around; she has been through some hard times the past few weeks, and I know that she only gets the best attention when either my sister or I are around.

I'm not sure if I posted this yet, but I did finally receive an interview and subsequent phone call from the VA.   It seems that they are going to give Mom some back pay for about 8 months of widows benefits from the VA.  This will help pay for some of the outstanding doctor's bills and will also help us to "hold her medicaid bed" if she has to go back to the hospital for any reason.  The nursing home charges $105 per day to hold the bed when Mom is not there.

I received a letter yesterday from a woman in South Carolina who has a Mother in Law living with her who is stricken with Alzheimer's.  I wrote her back and told her about all of the things that she can do to help her through this tough time.  Her husband is the only son of the lady with Alzheimer's, and she told me that her Mother in Law is very mean to her son and is in an agressive stage of the disease.  You can read the Letter and my response by clicking here.

May 24, 2003            Park Manor Nursing Home

Okay ... We've checked back into Park Manor and Mom is doing well.  She is now in Hall 100 which means we have to train a new set of nurses and caregivers.  Before she was in Hall 200.  I have not seen in her in about 2 weeks, but Mele' has been in there often.  I hope to visit her this coming week.

May 13 - 23, 2003        Cypress Fairbanks Hospital

After only one day back at the nursing home, they said that she was bleeding out of her rear again.  They also found that she had some type of blockage in her left kidney.  They operated on her and put a stint in her urinary tract out of her left kidney, because it was having trouble draining.  She was in and out of ICU and up and down to the 2nd and 4th floors of the hospital.  She should be checking out soon.

May 12, 2003        Park Manor Nursing Home

Mom is doing well again and is now returning back to Park Manor.  That is a relief because I really think that she is getting a lot of personal attention at Park Manor.  Most of the people seem very nice and were deeply concerned about her when she recently had to return to the hospital.  I think they like her there, with her big smile (huge patented smile) and the way that she scoots around in her wheel chair (with her feet) following people and acting like one smiling socialite.  Ha.  I wonder if her flowers from Mother's Day followed her back to Park Manor ... I guess I'll have to get her some new ones.  So far, we're okayh and back at ground zero.  I've added a picture of Mom that was taken a month or so ago.  It's not real pretty, but you can see her big smile.

May 4, 2003

Mom was moved back down to ICU because she started bleeding again.  Dr. Mojan said that she was going to go in again and get a better luck.  They determined that since the bleeding has stopped, that we had two choices.  We either go in and do surgery, which is very, very risky, or we just wait it out and see if she heals up and then go through this entire process again.  Dr. Tadros, who was a surgeon in Egypt before moving here, said that he definitely did not want her going into surgery.  (We had to call and stop it like 4 hours before it was going to happen ... somehow they automatically decide that you are going into surgery!)  That's where we are now.  Waiting to heal and to move up to a regular room, and then go back to Park Manor.

April 30, 2003

Mom has been moved up from ICU to a standard room; Dr. Mohan found another tear in Mom's esophagus, like the other times.  Dr. Tadros now has listed Mom as allergic to aspirin.  Hopefully this will stop everyone from trying to give her more aspirin.  I'm going to post signs around her bedroom also.  We are hoping that Mom can return to Park Manor ASAP, because they charge us $115 per day to "hold" the bed.  We don't get reimbursed from anywhere for that expense, eventhough Mom is suppose to be receiving VA benefits in the next couple of months and also she is now on Medicaid.  I guess things could be worse.

April 27, 2003        Cypress Fairbanks Hospital

Our luck was great until this morning.  We received a phone call from Park Manor and they told us that Mom was throwing up blood again.  It has been quite a while since the last problem where she was just in the hospital for 2 days.  This one may be a little longer.  Says that blood is coming out of both ends so they are planning to do a "full endoscopy" to find out where the problem is.  It must be something in her intestines.  Dr. Mojan tried to do the endoscopy tonight, but her throat and stomach were full of blood clots.  She is planning to wait until Monday morning to try again.  She said that Mom is much in the same condition as she was back in early January.

April 16, 2003        Park Manor Nursing Home

I cannot believe that it has been 2 weeks since I have seen Mom.  I have called to the Park Manor facility and they say she is doing fine.  I won't be able to get to see her for another 2 weeks, because this weekend Sandra's family is visiting, next week I am in Florida, and we are on vacation for the following weekend.   Looks like my next visit will not be until May 1st.   Mele' is probably visiting her twice a week right now, but I need to go see her soon.

April 1 - 3, 2003

Sorry that I have not written more often.  I visited Mom this week and it was great to see that she has become quite a "star" at Park Manor.  She is still not talking, but she is rolling around in her wheel chair all over the place.  She follows the caregivers and such.  I had her standing up and walking around with me.  We went outside and sat in the sun.  I brought her a lot of cookies and junk food to complement the other food she receives.  Mom continues to smile with the biggest smile ever ... it is one good indication when something is "going wrong" ... you can tell because she stops smiling.   All is well for now.  She seems to be enjoying where she is and the people, so we are happy too.

March 17 - 19, 2003

Mele' visited Mom with baby Elena and Mele' reported that Mom hugged and cuddled Elena and they took several photos.  I will post one or two of them when I get a chance.  Mom was responsive, smiled, said a few words, and kissed on Elena.  Evidently she realized this was her granddaughter.  Things are going good now.  Medicaid kicks in on March 14th, so that is a relief. 

March 6 - 8, 2003

Mom moved back to Park Manor on March 6 and took about a day to adjust.  It seems that the nursing staff at Park Manor automatically think that she is bed-ridden and it takes one of my visits to get her in the wheel chair and walking around to show them that she is not as bad off as they think.  Mom is still not communicating verbally so most of the people think she is deaf or something.  On March 8, Mom was looking good; smiling sitting up, and she is getting her strength back to possibly walk again.  The risk that comes with that is that she could always fall and injure herself.  Mom is taking a very small prescription of Zoloft, which I call "the Happy Drug" so that whenever you look at her she is smiling with those BIG SMILES that you see of her in the photos above.  My next chance to visit her will probably be in in about 2 weeks ... maybe sooner.  Hopefully our cousins can visit her.  Mele' is tied up with Baby Elena.  If you can visit her please call us so that we know you are going out there.  Rick 512-426-5728.

March 5, 2003

Mele' visited Mom yesterday and so did Sharon, our cousin.  Sharon said that Mom looked well and she was thirsty.  I am guessing that she is not getting enough fluids while at the hospital because they usually do not know how to deal with Alzheimer's patients.

So, her blood tested today at 5 am was 10.5 for Hemo and 28.4 for Hematicist.  Unsure what is going to happen next.  I'll be in Houston the next 4 days.

March 3, 2003

Late Saturday night, March 1st, Mom was found coughing up blood.  Evidently she has some bleeding somewhere in her gastro system or in her lungs.  Let me be the doctor:  It is coming from her lungs.  On Feb 21, when I visited her last, she had a broken cough that sounded like her chest was congested. Dr. Tadros came to visit her and he listened to her cough and to her chest and he said that she was not congested.  I think at that time that she had something going on in her lungs and the resulting coughing excasberated the esophagus to where it now is bleeding.

Anyway, they pumped all the blood out of her and her H&H dropped very low, down to 4.5 on hemoglobin and 13.1 or hemticulite.  Then they pumped 5 units of blood in her and her numbers were 11.4 and 32.9 as of 5 am on Tuesday, March 4.     Dr. Mohan did an upper GI scope on her and found that there was no bleeding on down to the bottom of her stomach.  She did say that Mom now suffers from esophalytus (sp?) meaning that her esophagus is very raw now from all of the coughing.  She is not sure where the blood is coming from; maybe Tadros has an idea.

February 17, 2003

Mom is still at Cy Fair hospital and Mele' had her baby today at 6:11 pm.   So, it looks like I'm going to have to step up my time in Houston until something stabilizes around here.  I wish there were an easier way.  Some place that Mom could go, that had nurses on call, that wasn't smelly and lacking of personal care, that cost under $2,200 per month.  Where could this place be?  It seems that all of the places want more than $3,000 per month.  Number one place in my mind is Silverado Senior Living Cypresswood.

February 15, 2003

Okay, well Mom spent her first night at Park Manor without much fanfare.  Mele' and I got in to see her on Saturday morning Feb 15th, and she somewhat adjusted.  We bought her clothing and some small things that she would need to make her room somehow comfy.   That evening we sat around and watched them serve all of the people their meals in the dining hall.  It wasn't very good because most of the old people sat around the tables for up to 45 minutes waiting for their food.  I spoke to a couple of them that were coherent and they told me that it was always that way and they didn't like it.  Mom, as it turns out, is suppose to receive her meals in her room.  Unsure why exactly, but that's the way it is.  Food did not look so great.  They said that we could request other things, like sandwiches (which Mom prefers) but we would have to go through our doctor.

So, ... here is the bad part the NIGHT of Feb 15th, Mom tried to get out of bed and fell down in the bathroom.  She hit her head and had to get about 8 stitches.  She also pulled out her catheter in doing so.   So, off she went to the CyFair hospital at 11:30 pm at night.  And there she will be for a few days ... in the meantime we have to pay $115 per day in cash to "hold" her room at the Park Manor.

February 14, 2003        Park Manor Nursing Home

Today Mom is moving from the Kindred Hospital to Park Manor Nursing Home.  After looking at about 10 different residences on our side of town, this is probably the one where she will get the best care.  It is also not overly restrictive and people get out of their room and mill around the general areas several times each day.  The only issue that may come up, is that Mom really likes to walk around and she may try to walk out of this place.  If she does this more than a couple of times, we may have to move to a more secured location.  But we would like for Mom to be able to stay here for awhile.  They have nurses on staff 24/7 and Mom's doctor visits this place and so do a dentist, podiatrist, hairdresser, and so on.  Now she will be in a Medicaid bed, which means that all of her expenses are covered by Medicaid, whe will not receive her monthly Medicare check, and any VA benefit that she may have received will be directed to Medicaid or Park Manor to offset the cost of her staying there.  So, all of a sudden, it doesn't matter if we get the VA benefit or not.  (Except ofcourse, getting reimbursed for the past 8 months that she should have been receiving the check.)

February 11 - 12, 2003    Kindred Skilled Nursing Center

I am visiting Mom again and I gotta tell you that she is looking great, smiling, listening to my words intently.  Laughing at some things and so forth.  For example, I had a button shirt on and I was leaning over the bed looking at her.  She took her hand and lightly punched me in the stomach and made a scowl look, like "You're getting fat!" ... which I am.  But this shows a couple of things.  She recognizes that I have gained about 20 pounds and that means that she remembers that I do not normally look like that!  Right after she did that, she took her hand and "grabbed at" my chin and I know what the words would have been "My darling son, you are still the most handsome in the world!"  (those would have been HER words, not mine, ha!)

Anyway, I got her up both days I was there and put her in a wheel chair and walked her outside to get some air.  She always gets cold outside (not wearing much) so we come back in pretty quick.  She is walking her feet as I push her and I think its good for her to get that little bit of exercise and get her blood flowing.

As far as I know, she is not taking her Reminyl now.  And she surely isn't taking Risperidal (the sleeping, antiagressive drug) so this is the real Mom, unadulterated.

She is feeding herself and has an appetite.  I constantly feed her ice cold Coca Cola, as that is what she loves!  She has so much energy when she is full of fluids.  We have to find some way that the caregivers will continually give her liquids.  Unfortunately, she is not discharging the fluids from her bladder, at the moment.  The doctor is suppose to recommend a drug for this.

So, these are GOOD Days.  Mele' is about to launch her Baby Elena.

January 28 to 29, 2003

Mom is still at the Kindred long-term skilled-nursing hospital.  She is probably going to be there for another 7 to 10 days while she is recovering from her pelvis fracture (from trying to walk out of the bed) and also she is receiving restorative therapy to help her get back to walking.

Yesterday, a nursing assistant gave her a complete shower and fixed her all up in clean everything and I know she liked that.  I also took her outside and rolled her around in a wheel chair.  She is still not talking, but seems slightly attentive at times and other times she seems like she is in another world.  Today the lady from restorative therapy got Mom up and walking and Mom walked about 100 feet towards the main nursing station using a walker.  She was pushing very hard and the expressions on her face were ones of determination.  She did get tired after a while.  It was funny that while she was walking, the nurse was standing close by her side, and Mom would give her an elbow every few steps as if to say, "Stop helping me, I can do it myself!".  That was cute.

So, we are trying to make the best of this world.  The Veterans Adminstration is slowly moving forward on their decision to give Mom her Widows Assistance funding.  They have know sense of urgency.  I am in contact with Senator Kay Bailey Hutchinson's office, and believe me, the VA is not going to get any slack from me.  We have been patiently waiting since the end of last April for this government organization ... it is clearly in need of new leadership.  I guess its run like a retirement home form veterans, giving them all jobs regardless of their ability to think.  Excuse me for the harsh words, but its ridiculous.

And we have moved Mom and all of her stuff out of the Hampton.  The monthly bill of $2300 was going to come due, and Mom hasn't been there for 3 weeks, so we are thinking that maybe she will go into a different level of care facility.  Unsure what type for now.

We've had some help from Dr. Cory and Sharon, they've brought Mom some food (kibbee and grape leaves) but evidently Mom has turned it away.  (Ya know something is wrong!)  Also, we notified the Pharmacy doctor that Mom does not seem to work well with Pepcid, and they put her on something else for her stomach.  All for now.

January 24, 2003

Cousin Cory (Dr. Jammal) visited Mom and spoke with Dr. Tadros and the nursing staff.  It seems that Mom has a hairline fracture in her pelvis as a result of her falling out of her bed.  (Just as we were ready to escape!)  I can't believe our luck.  Now Dr. Tadros says Mom has 2 more weeks in Kildred until she heals.  Then he thinks she will have to go to a nursing home because he doesn't think the Hampton can handle it.  I am not sure if he knows what the Hampton can handle, but we surely want to avoid those ugly, smelly, nursing homes.  And I've visited probably 15 of them, and while they vary a bit in their looks and smell, they are pretty much the same.  The Hampton is a place of dignity and as long as they can take care of Mom, I want her to be there.  The only problem is that we are paying for it and Mom is staying in the hospital!

Cory helped Mom east some chicken nuggets and Coca Cola.  She is sick of the food at the Kildred, so if anyone is in the area, please stop by and feed her some "junk food".  She likes hamburgers, chicken, sandwiches, some fruit, potatoe chips, etc.  She is not on any dietary restrictions, rather they would prefer to see her max out on calories.

She is located on the 4th floor of Kildred, which is on FALLBROOK, in between FM 1960 West and Jones Road (it makes an arc connecting the two).  Kildred is the 4 story building next to the 3 story building.  It is not the hospital.   Visiting hours are 24 hours a day.  Mom also likes ice cream.  Thanks.

January 22, 2003

Apparently, Mom is feeling great today.  She has been smiling and dancing with Mele'.  Unfortunately, today she tried to get out of her bed.  As she was getting out, she must have tumbled onto the floor.  She appears to be in some pain.  Everything is fine for her to get out of Kindred.  Just waiting on the doctor to let us escape, or maybe we'll just get up and leave.

January 21, 2003

Mele' just called me from Mom's room at Kindred.  She said that Mom is standing up and walking and dancing and following commands and ready to get out of there.  Apparently, healthy are rarin' to go!  Amazing what good health will do for ya.  Anyway, our fight now is to get Mom some assistance with walking and eating, although she apparently is doing this now, and maybe getting her some kind of a walker to help her around the Hampton.  The walker may only be temporary.  So, I have a call into Dr. Tadros and we are waiting for his returned call.  No more Risperdal !!

January 20, 2003    Kindred Skilled Nursing Center

Things are looking good again!  Just returned from 2 1/2 days with Mom at Kindred Acute Care Hospital.  Dr. Uma Mohan just completed an Endoscopic Gastrointestinal Diagnosis and found that there was no bleeding ulcers in Mom's esophagus or stomach area.  If there continues to be bleeding it could be elsewhere.  Her blood count is back up at 12 and she is alert and talking somewhat.

Now that she is NOT taking the Risperdal, Dr. Magdy Tadros discontinued it a few days ago, Mom is much more alert and responsive.  However with that, she is somewhat ornery, in that she tried to remove her inlines and wants to get out of the bed (wouldn't you?).  I have promised her that as soon as we can get her strength up to walking and feeding herself, that we'll get her "out of there".   Evidently, all of the infections have been cured now, so she is on the fast track to get back to the Hampton.  The key now is feeding and walking.   We also want to make sure that she doesn't get back on that Risperdal, or just a very small amount of it at bedtime.  The recommendation by one of the activities people at the Hampton for her "to get on something" was a mistake.  From me to you:  "When they tell you your loved one is agressive, be happy!  That is a good thing in my mind, that they are healthy and kicking!  Maybe ONLY in the evening give them a little something so they don't wake up and wander around in the middle of the night, but stay off of it during the day.  If they are agressive, there is probably a reason."  In my Mom's case, I believe the reason she was agressive was because there were other agressive people (since removed) at the Hampton that were instigating her agressive behavior.

Anyway, we are now trying to get "Restorative Rehab" at the Kindred.  We just want somebody to get Mom to walk around for about 15 minutes, twice a day.  AND to not "feed her" but give her "hand over hand" assistance in feeding as necessary.  None of this feeding her because she will not have that when she goes back to the Hampton.

January 17, 2003

We just heard from Kindred that Mom's blood count had dropped considerably.  Possibly when she was flushed out the other day the procedure opened up some scar tissue.  Our family has had a history of Crohn's disease type of intestinal issues.  I guess it is known as ulcerative cloritus and there is even an organization that deals with these problems.  Anyway, it is possible that some of these ulcers are causing Mom some problems.  Her blood count is down to "6.8" and it should be up around 11 or 12 or so.  They have ordered her some units of blood and she is currently waiting for them to come in.  I'll be in Houston with her the next few days.

January 16, 2003

Today was an eventful day!  Mom is talking again and we cannot figure out why.  Yesterday my sister arranged for one of the priests where she attends church to "annoint" Mom.  This was not her last rites, but something else that they do to older people.  Yesterday, Mom also had a procedure done to her that totally flushed her system out.  Maybe she was under such pain and discomfort that she could not speak?  I don't know what to think about it.  Mele' of course links her new found condition to the annointment, however I am the usual skeptic.

The nurses claim that infections in older people tend to make them lose their speech abilities.  Wow.  Never knew that.  So, this morning Mele' visited Mom and she was smiling and happy and hugged her and so forth.  They talked for a short while also.  This evening, Dr. Tadros visited Mom and asked her how she was doing and she said "Fine" and then she asked for some Ice Cream.
After I heard about Mele's visit this morning, I called Mom to see if she would speak to me.  Wa-la!  I said "Hi Mom!" and she said "hello" back to me and I asked her how she was doing, and she said in a groggy voice, "Good or Okay" or something.  Then I told her that I would be visiting her this weekend and she said "Oh Wow", just like she was doing before.

I haven't had a chance to talk with the doctors yet, but I am guessing that he has also lowered her dosage of Risperdal, or possibly removed it altogether.  We'll see how she progresses, but this is very positive.

And I said to Mele', we need to have her annointed every week!

January 11, 2003    Kindred Skilled Nursing Center

Today they moved Mom from the CyFair hospital to an "Long Term Acute" hospital, called Kindred.  Dr. Tadros says that she needs to go in there to get better treatment for her pneumonia.  She has an infection in her blood as well.  He says that she will also get some rehabilitation so that maybe she can talk again and for sure she'll get more walking exercise, so I'm told.

Who knows, this could be a bad thing.  But I guess the goal is to get her back to the Hampton and the better life style there.  Cousin Dr. Cory Jammal says that we should avoid the nursing homes at all cost.  Possibly we can take Mom to the end at the Hampton, but I don't know.

I'm back in Austin now and I feel helpless when I'm here and Mom is over in Houston.  Mele' visited her before and after the transfer to Kindred today, but she told me that Kindred seems to be "unfriendly" and basically like a nursing home.  Kindred is located at 11297 Fallbrook; it is a 4 story building just south of the CyFair hospital near the corner of Jones Road and FM 1960.  Mom is on the 4th floor.  Their 800 number there is 800-254-1463.

January 8, 2003

I returned from Houston a few hours ago.  Mom is in the Cy-Fair hospital with a bout of pneumonia, however after a few days in there she is looking well.  Our new doctor, Dr. Tadros, seems to be a good one although he talks very loudly to Mom, I guess he suspects that she may be losing some of her hearing.  Actually, this could be true and we wouldn't know it.

I must credit the workers at the Hampton (where Mom was living) of knowing when Mom should be taken to the hospital.  As it turns out, Tracy at the Hampton predicted that Mom could have pneumonia even before she ordered for the ambulance to take her to the hospital.  I think it was because Mom was weak, had a fever, and had difficulty walking.  You must watch the Alzheimer's patients closely, since they do not communicate or realize when they are sick.

Mom is still not talking.  Yesterday, I was with her around lunch and I told her, "Mom, I need to go work for a couple of hours and I'll be back in the evening."  Surprisingly, she replied (in her normal Mom voice)  "Okay".  I was startled and continued talking with her and she was listening, but no more words came out.  Maybe she cannot speak in more complicated words than that.

The nurses and assistants at Cy-Fair hospital are very nice.  Dr. Tadros has Mom moving to the Kindred Hospital (I guess its a rehab-type of hospital.)  Mom should stay there for a couple of weeks.  Then we will decide if she is going to one of the nursing homes where she can receive more care, or if she is going to return to the Hampton.  (The Hampton costs about $2,300 per month and it is not medicare/medicaid supported.)  I've added a "Memory Book" where people can send their notes and cards to Mom through the internet.  Please sign the memory book.

Still no word from the Vetaran's Administration about Widow Assistance.  It has now been 7 months.

January 4, 2003        Cypress Fairbanks Hospital

Today, I was calling the Hampton to try to speak with my Mom.  What I found was that they had called my sister and she was on the other telephone.

Apparently, Mom was not walking well and she appeared weak and wasn't eating.  She had a temperature of 100.3  They said that she was surely going to fall down and hurt herself, possibly breaking a hip.  The attendant at the Hampton told us that we had to come and pick her up or they were going to send her to the hospital.

My sister was tied up at the time and couldn't get over to the Hampton, besides being "very pregnant" she told them that she could not be there for a few hours.  I was in Ausitn and of course I couldn't be there for at least 3 hours.  The attendant said she was going to call the ambulance, and I asked her to instruct them to take her to Cypress Fairbanks hospital.  Same place where Mom was in September 2002 for a week.

The immediate diagnosis after a blood test was that she has pneumonia in her left lung.  They are putting her on antibiotics and she will probably be in there for 2 days.

January 3, 2003        Hampton at Willowbrook Assisted Living Center

I just returned from a 24 hour trip to visit Mom.  On this visit she seemed sad most of the time I was with her.  I took her to get a blood test and then brought her back to the Hampton.  She drank about 3 full glasses of water using a straw.  It seems that the Hampton had never given her a straw to drink her fluids and apparently she was getting enough!  So, from here on out, Mom gets a straw with her beverages.

After bringing Mom back from her test, we went outside and sat in the sun for awhile and I tried to communicate with her.  She is not talking at this stage, but I can still get some communication out of her through eye gestures and very slight nods of her head.  So, she is understanding what is being said.

Most of my conversations with her are focused on 2 or 3 primary ideas.  They are 1) don't worry, we are taking care of you, 2) I know how you are feeling and I am here for you, 3) I love you, and 4) don't worry, there are no problems just relax.

Earlier today I took her into her bathroom and put my are around her and we looked into the mirror as we talked.  I think this helps a lot, primarily because its a continuous reminder of who she is and who I am.  At this point, she was crying a little bit and she hugged me tight and burried her head in my shoulder.  This lends me to believe that she would say the following (if she could):  "I am sick of this place and I am sick of being like this.  I want it to all be over!  What did I do in life to deserve this?  Why me?"

Of course we do not have an option but to "live this horror out" and I only wish that my Mom would talk to me; if I could only hear her voice.

She did make another gesture towards me.  After I had prepared her for bed and put her in bed, I was telling her how much I loved her.  She lifted up her hand and touched my face as if to say "my precious darling son" which she used to tell me so many times before ... I can still hear her ...

January 1, 2003

The strangest thing happened last night.  I awoke around 3:30 am and layed in bed contemplating the year ahead ... changes and so forth, after about 15 minutes I heard loud noises outside my bedroom patio doors.  I had never, ever, heard this sound before.  Our neighborhood is known for having a number of wild animals (for example, deer roam the streets in the evenings) but this morning I heard the call of an owl; actually two of them.  It was an unmistaken Hooo-Hooo, Hoo-Hoo-Hoo ... and then it repeated again, Hooo-Hooo, Hoo-Hoo-Hoo.  And when the first owl was in its second Hoo-Hoo-Hoo, another owl began the same identical call.  I layed in bed thinking, those are owls!  I should get up and look at them outside of my window, but I didn't.  I then fell back into sleep.

Now, I am wondering ... was this my subconcious playing some kind of mental game?  Was this a dream? (I never, ever remember my dreams!)  Or was this, in fact, a visit from two owls where I had never been visited by owls before?

The next day I casually told my wife about what I heard.  That is when she told me that in Mexico they have the belief that when an owl visits, that it means someone close to you is going to die soon.

And at that moment, I recalled that my Aunt Beryl had told me that she received a visit just before my Uncle Vince died.  She said she was visited by an owl on her back patio during the day.  She said that she never seen owls before.  On this occasion, she was visited by an owl who stared at her and did not seem to be frightened by her and I believe she said the owl looked at her for something like 20 minutes before leaving.  She felt it was a visit from my grandmother, Maude Perkins who had a fondness for animals and especially owls.  She said she felt like it was a visit to let her know that her husband, Vince, was going to be taken care of once he died.

Let me tell you ... I am not a very religous person.  I do not attend church and I do not, normally, believe in these things.  But, how weird is this?  Maybe it was two owls on this occasion ... one my grandmother and the other my father, who visited me.  I don't know.  But I'm preparing myself.  If you have had any experiences with owls and death of a loved one, please email me.

December 30, 2002

Today I spoke with the caregivers at the Hampton Willowbrook and they said that Mom has been walking around off-balance.  They said that she fell yesterday and scraped her forehead.  No one knows, of course, where she fell or what time of day.  Alas, I spoke with Mom today and asked her if her hip or leg was hurting her.  Her voice was weak, but she did manage to complete a few sentences.  Not enough to express herself, however.  I'm due to visit her again this week on Thursday and Friday to take her in for a blood test.

The VA finally has moved our application on to a "senior" representative.  I'm not sure what that means, but hopefully we'll be getting a call from somewhere.  Our funds are quickly drying up.  We believe that she'll get backpayments to June or July of this year, which will help pay back the loan I have taken out against my retirement account.  We're waiting.

The manager of the Hampton Willobrook has told us that Mom is requiring too much time to manage.  I'm not sure what the next step should be, but possibly a nursing home.  Mom has been removing her clothes at all times of the day and walking around naked.  She also has been making a mess in other peoples rooms and often tries to sleep in Unit No. 105.  We think that she wants to go there because she lived in Unit 1507 for more than 10 years.  We cannot figure out why she wants to take her clothes off though.  Possibly to get attention to some other problem?  We just don't know.

December 27, 2002

If I could only understand this a little better, I would be able to communicate with her.  I guess I am one of the last ones that Mom talks to, but even now she has shortened her sentences to only 2 or 3 words.

A lot of this I blame on an "over-dosing" of Risperdal.  This drug was suppose to make Mom less-agressive; less prone to pace the floor and less prone to strike people I guess.  They started her on what now seems like a high-dosage: 1 mg three times a day.  Our new docter, Dr. Tadros, has changed this to 0.25 mg in the morning and 1 mg in the evening.  On 3 mg per day Mom was sleepy all day long.  This must be strong stuff.  Dr. Tadros has prescribed some medicine to ensure regularity and also he prescribed a blood test for her, where he is going to check all of her enzyme levels and so forth.

December 15, 2002

The Hampton called us today and told us that Mom was acting agressively towards another lady at the Home.  Actually, I witnessed that the other lady was sort of picking fights with Mom and getting in her way and so forth.  In fact, when I would sit with Mom in the living room, and that lady would walk up, Mom would look at that lady, and then at me, and roll her eyes.  I think she was probably saying something in Arabic to herself, like "Chacada!", which for us means "old lady" ...  One of her doctors is prescribing a pill to keep her agression down, it is called Risperidal, although I think they may have started her on too high of a dose.

Cool Mom, Sept 2002       Today is a rainy Sunday, December 8, 2002.  I called Mom around 6 pm and spoke with her for about 4 minutes.  Immediately, as always, when she heard my voice on the phone she said, "Hey Ricky!".  When she stops answering to my voice with my name, that is when I know that she is gotten worse.  While she did not carry on a long conversation, she was following what I was saying.  A couple of times she answered me in complete sentences.  I mentioned to her about Christmas and I asked her what she wanted.  She responded in some intelligible way, but I then asked her if she wanted clothes, and she said yea.  Yesterday, when I spoke with her, I asked her if everything on her body felt okay.  She clearly answered me "yes" in several ways, so I felt good that nothing is bothering her.  I think that she has the capability of telling me if I am patient enough, and wait for the answer.

I am traveling this next week to Arizona, so I will not be able to see Mom.  However, I will be going to Houston on December 17 through 19th at which time I will spend considerable time with her.

I feel like I still have a connection with her, and other people say this as well.  I feel like its the last few weeks, or days, or months before she'll totally leave me.  I cannot forsake this time; it is so precious.  I have been wanting to film her and I together talking, but in a way I probably don't want to remember these last few days so vividly.  In the future I expect that I'll want to remember my Mom more like how she was during my high school days.  However, I do want to film her somewhat.  I'll take our VHS next week when I go.

BTW, the Veterans Administration still hasn't come through for us.  How complicated can this be?  It has been almost 6 months for them to process one single piece of paper.  I plan on writing to Kay Bailey Hutchinson, (US Senator) to complain about this.  It's just not right to put the family through this BS in a time when it is so difficult just to keep up with the disease.  I'm losing respect for the VA on a daily basis.  Are you out there?

December 6, 2002

Just received great news.  The people at Jannsen (manufacturers of Risperdal and Reminyl) have approved Mom to receive FREE drugs for at least the next 12 months.  The drug bills vary from $400 to $900 per month, so this is a great relief.  Jannsen and about a dozen other pharmaceutical manufacturers have teamed up to provide discounts, or free drugs for qualified individuals, for many seniors and others.   The TOGETHER Rx card is the first step and then after you get that card you contact the specific drug manufacturer.  If you need help on this, you can email me and I'll provide more detail.  Basically, go to this web site:  OR   ...

This past week, Mom and a few other ladies at the Hampton at Willobrook were served coffee with cleaning soap in it.  Strange but true.  Turns out that the folks at the Hampton had cleaned the coffee pots on the night shift and were letting them soak over night with dish soap.  The next morning, the group making breakfast didn't rinse out the coffee pot and made coffee with dish soap in it.  Fortunately, the three ladies, my Mom included, noticed the strange taste.  Usually when Mom doesn't like something, she'll push it away and say No, No and refuse to take it.  That's good.  She may not be able to verbally communicate, but with her actions she is giving us signs of what she is thinking.

I spoke with Mom last night and she sounded good.  We had Dr. Kim reduce the amount of the Risperdal from 3 mg per day to 2 mg per day.  Mom was really drugged out when she was on the 3 mg.  I'm not sure what Risperdal does, but it must be similar to a tranquilizer or something.  Its suppose to handle agressive behavior.

I am traveling for work this next week, but I plan to be with Mom for a little party at the Hampton on Dec 18 and 19 in Houston.  Since I am one of the few people who can still connect with her, I feel so guilty when I am not there, at least once a week.  However, living in Austin makes it a little more difficult.  I had thought about moving her to Austin, but then my sister wouldn't be able to see her so often; and the doctors tell us to try not to disturb her environment.  All for now.

November 25, 2002

I visited with Mom last Tuesday and Wednesday (November 19th and 20th) and I brought her a birthday card on Tuesday, the day after her birthday.  Mele' had visited Mom on her birthday (Monday, November 18th) and brought her a cake and so forth.  In the card to Mom, I wrote a direct note that read "I love you Mom.  Thank you for always being there.  I hope you always keep me in your heart."  When she read this card she cried a little, hugged, and kissed me, and then reread the card.  She did not put the card down for almost an hour, rereading it every 5 to 10 minutes.

It was such a nice warm November afternoon, we went outside on the patio and just sat and talked about simple things.  I asked her if anything was hurting her or bothering her.  She pointed to one of her teeth but she said that it was not a big deal.  When you speak to her now you must speak in "one idea" single sentences.  You must wait for the answer, or repeat the question in almost the exact same manner, maybe 2 or 3 times.  Eventually, she will give you an answer, but its like a delayed response.

We sat down and ate, as they seem to eat a lot in these old folks homes.  The food was very good yet simple.  Some jazzed up pork and beans, and scalloped potatoes, and beef stew chucks.   It was great.   The following day, when we ate, we had "killer" potatoe soup and some other things.

I bought her some new pants (larger in size) and some toiletries and brushes.  It seems that a lot of things tend to get snatched and taken into the rooms of other ladies living there.

It seems that the toe nails of old folks really grow fast.  My Mom's are hanging off of her foot and almost curling under her toes.  It seems like we just had them cut about 2 months ago.  I put in a request to have them clipped.

And for the BIG COST-SAVINGS TIP OF THE DAYSeveral of the drug companies have gotten together and they are offering discounts and/or FREE MEDICATION to people who qualify.  Basically, if you have no savings, no supplemental insurance, and no extra money hanging around, they will give you FREE MEDICATION!  Now, you're going to have to fill out 2 applications and talk to some people on the phone, but its well worth it.  First, call the TOGETHER Rx Program at 1-800-865-7211 and be prepared to tell them which medications you are interested in.  For our Mom, both her Risperdal and Reminyl medications from Janssen are covered.  They also cover many other medications from Novartis, Ortho-McNeil, GlaxoSmithKline, Aventis, AstraZeneca, and Abbott.  You can also check out the website at

Alas, as of today, November 25, 2002 we still have not been approved for the Veterans Adminsitration Widows Assistance Program.  It has been "in process" since late June 2002.  We were told by the Harris County Veterans Assistance Center that we can more than likely expect to receive about $850 per month to help with the cost of Assisted Living.  This is in addition to the $900 from Social Security.  The cost of the Hampton per month is near $2,400 plus medication.  Last month medication costs were $900, but hopefully this Together RX program can help reduce that cost.    .... Thanks for reading.  All for now.

Mariam with Grandson Benjamin                                                                                                     
                                                                                                                                                            With Grandson Benjamin, March 2001

November 6, 2002

We just returned from the funeral of our Aunt Georgette Jamail Smith, the older sister of our mother Mariam.  Aunt Georgette died from Alzheimer's at the age of 78, which was about 4 years older than where our Mom is today.  Aunt Georgette had 7 children, which are of course, our first cousins.  We all gathered for this occasion and while of course it was very sad, we all also knew that she is much better off with her God than with us at this time.  Aunt Georgette was an incredible human; so active and wonderful.  I have fantastic memories of Christmas Eve at her huge house off of Memorial Drive in Houston.   And her late husband, Uncle Jimmy Smith, died many years before his time.

Mariam Jamail was with us at the funeral and she understood what was going on.  I did not tell her until the morning that I went to pick her up.  I was wearing my dark suit, of course, and as I helped Mom with her black dress and shoes, and fixed her hair for her, I gently told her that Aunt Georgette had been sick.  I was careful to not say the word "died" but I did say the words "passed away".  My Mom immediately wept for a few moments and I hugged her and told her that it was for the better.  She seemed to be okay after just a few moments, but we surely wanted to not continue to remind her that it was her sister who died.

Nonetheless, we were with Mom, hand in hand throughout the funeral and the reception and so forth.  We thought that it was very important for the same people that knew Georgette Jamail to see Mariam Jamail at the same time, since they ran in the same circles.  I cannot say for sure, but that is probably the last time in the life of Mariam Jamail that people will be able to "connect" with her.  Mom was able to walk around, sit down and eat, carry on a very, very light conversation ... and smile a lot.  Our Mom is continuing to smile in this time of hurt.  I really am enjoying spending time with her now because we truly have a connection.  I feel as though I can reach in and touch her.  I know I can.  Her birthday is coming soon.

Oh, and by the way, we have not received any assistance from the Veterans Administration.  I call them weekly and they say that it will not be much longer, yet that someone has to come out and visit Mom in her new living environment.  We are still paying $2,300 per month at the Hampton, and Mom's medicine last month amounted to $930.  We recently applied for the Together Rx discount card that will help a little, but not so much.  We pray that the VA will someday do their job and start sending us the VA assistance check of $850 per month, because we are just about at the end of the end as far as finances go.  The next step will be a Nursing Home and Medicaid the way that it is going.

My sister has two children and another one on the way.
She also works full time at HP, so she has some difficulty dealing with all of this.
She spends a lot of time caring for our Mother, but at
times our Mother doesn't rememeber who she is.  Mom does seem
to know who I am, but sometimes she doesn't remember my name, only
that "He is my son!" as she tells so many people.

October 14, 2002

Well, the Hampton recommended that we move Mom to the Alzheimer's wing into a shared room.  They say that the price will be the same considering the extra medical and bathing care that she now needs.  The cost is about $2,300 plus medicine now, so its approaching $2,600 per month.  We still have not received any of our checks from the VA and our money is getting low.  However, if we ever receive it, it is suppose to go back to the day that we applied for the assistance, which was in late June.  So, that will help but we really don't have much more time.  We may be able to make it one more month.  The bills from the hospital stay are coming in soon too.

The Hampton is accusing Mom of being the agressive one.   My wife, Sandra, and I stayed at the Alzheimer wing for about 4 hours yesterday afternoon until 7 pm, and we saw that there are at least 2 other women who are antagonists.  One of them caused four incidents in one day and it turns out that they are accusing Mom of kicking that lady in the butt yesterday morning.  The lady seems like she deserved it.

I'm going to have a meeting today with the manager of the Hampton to get him to look at his caregiver/patient ratio.  I think it is 2 / 9 currently, which should be okay.  Unless that caregiver is responsible for a lot of other things such as reporting to families when there is a problem.  I saw one of the caregivers on the telephone yesterday for literally hours talking to the family of the unruly lady.  This is not acceptable.

I have visited Silverado in the past and it is a very nice place.  The price was staggering though.  It was almost $3,300 to put our Mom there for a semi-private room.  We'll have to check it out here again possibly.

October 8, 2002

A lot has happened since I last wrote.  The folks at the Hampton at Willobrook have told us that our Mom is acting different since she came back from the hospital.  They say that she has shown more anger than she had before and is exhibiting some anxiety.  Now they have her on an anxiety drug.

They say that Mom pushed down another old lady at the Hampton which caused the other lady to break her wrist.  The only witness is a dementia-laden resident and not someone who works there.  Most of the workers there do not believe my Mom was at fault, but they do say that several of the women have provoked my Mom.  We're not sure what is going on.

September 28, 2002

Mom had to be rushed to the hospital in an ambulance because of some type of hemmorage in her throat.  Turns out it is a dofoilly or something like that.  Sort of an ulcer in the esophagus.  They say that it could have been there her entire life and just decided to break loose at this time.  She spent a week in the hospital and had a couple of series where she was under anisthesia and she was weak and lost a lot of blood.  They had to keep her in ICU because she kept wanting to get up and walk out of the hospital.  Several times she pulled the needles out of her arm.  I was able to spend about 4 days with her and finally to get her out in a wheel chair and into the sun.  She seems to really appreciate my efforts, especially when I would roll her around the hospital.

My cousin Craig tells us that all we
can do at this point is "love em".  His Mom, Georgette Jamail
also had Alzheimers and is located at the Hampton
at Memorial.  Her case has progressed farther
than our Mom's.

July 17, 2002

Mom has gotten up and left her apartment at the Hampton on several occasions.  Today she was gone for about 3 hours and just walked out the front door and down the street and the police found her in one of the stores at the shopping mall on FM 1960.  Fortunately, we had just gotten her the Safe Return bracelet and they were able to contact the organization to find out where she belongs.

June 30, 2002

Today we begin moving Mom into her new Assisted Living place.  It was just too much for her living on her own and after searching many places ... from terrible, smelly, nursing homes to very expensive and respectful homes ... we found a little jewel of a place called the Hampton at Willobrook.  They had a special on the rental that is allowing us to move Mom in there for about $2,100 per month.  We took Mom to the County Office of the Veterans Assistance organization and found that she is eligible for about $850 per month in VA assistance and on top of her $900 per month of SS she receives, it will almost pay for the place.  We has some of her old money socked away and it will be able to pay for the difference for a while.

We think Mom is going to like it, she has a one-room apartment basically with shower and 3 square meals a day.  There is no lock on the doors however, and we're a little scared that she might just wander away.  But, its a very nice respectable transition and we can be assured that someone will be there for Mom if something happens to her.

March 13, 2002        The First Entry

You have seen these pages before.  They are repeated throughout the world in many cities and in many languages, but for us the language is English and the city is Houston, Texas.

Our Mother has developed Alzheimer's disease and her older sister had it as well.  We believe that she may have inherited a gene or an environment that causes the Alz to activate.  We do not know why; no one else seems to either.

These pages are the live, day to day, writings of a son and a daughter of an Alzheimer's victim.  As of this date, March 13, 2002, my mother is doing poorly.  But she is still at this date living in a small condo by herself.  My sister and I realize this is not a good situation, so recently we hired a woman who lives near Mom to check up on her twice a day.

I will begin with a discussion of what my Mother said to us before any of this became reality.

The irony of this is that Mom swore to her children, Mele' and Rick, that she never, ever, wanted to live a life like this.  In fact, she often told us, "If I ever get like that, just shoot me!"   And she probably wasn't kidding.

But, instead of following our Mother's instructions, we have chosen to provide her as much care and loving that we know how and to help her live her final years with some type of dignity ... whatever dignity can be afforded someone lost to this disease.      

And, we hope, that if by chance this ailment takes US away someday, that there will be a kind soul ... a son, a daughter, a husband or wife ... that will care for us in at least the same manner that we are caring for our Mother.

I am sorry in advance if you think this is without taste or class or too weird; it is what it is and until you have experienced it from beginning to end ... you just don't know ... and besides, its my web page.

Send a Note to Mariam's Memory Book

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Message from Mele' (Mariam's Daughter)  

October 4, 2004
Today I buried my mother.  I believe I was numb.  I was surprised how strong I felt during most of it but it must have been her helping me deal with it all.  I didn't cry as much as I expected - mostly during songs or when my brother spoke of her or when I spent some time with her body in the open casket.  She looked pretty!  Not as pretty as she looked in life.  I was not afraid of a dead body any longer - and this wasn't just any dead body.  To me, this was still Mom because it had housed her soul for so long.  I felt I owed it some respect.  I touched her hand, her legs, her hair and face.  Even thought it was cool, it still had the feel, the shape, of her that I knew so well.  At the grave side, it was my last time to gaze upon that beautiful face and feel my mother's skin.  I checked her chest for a heartbeat just in case.  I put my fingers inside her hand to feel them wrapped around mine once more and for a moment, I thought she grabbed my hand back when I pulled away - I guess I just got stuck.  I had her crucifix placed in her hands.  She was wearing the red dress I wore to my wedding rehearsal dinner and my best friends shoes.  In the keepsake drawer inside the casket I placed an old picture of Mom, Rick and I, a new picture of her 3 grandchildren and a card/letter I wrote to her.  The card read as follows:
Mom -
This will be the hardest letter I've ever had to write.  Not because of what I have to say but because I will never be able to say enough.  Even though it has only been 18 hours since your soul left this Earth, the emptiness in my heart has made a permanent home inside me.  And rightly so!  So much of me is you!  The lessons you taught me, the love you showed me and the gifts of life you gave me are so precious and so many that every step I make reminds me of you.  Over these past difficult years, I have hardened myself to protect me from the hurt of losing you mentally.  I chose to act stong, do my responsibility, make your wishes for your end of life come true as best I could with what fate gave you.  I shut out all the beautiful memories of us together for fear of falling apart.  And now, the end has come - I have lost you physically.
I can feel the emotions wanting to surface.  They rushed out intensely the last week you were here until I could gather them up and close them tight within me.  But soon, I know they will need to come out so that I can enjoy you through my memories, such great memories of our special relationship - more than mother-daughter - greatest of friends.
Ever since I was little, I remember telling you how much I love you.  Many poems, songs and letters have spoken how much you mean to me.  And the times we've had --- Oh, Mom, how I enjoy thinking back to our favorite pasttimes:  shopping all day long for clothes or even at the drug store, eating hamburger and french fries with a Frosty, watching Wheel of Fortune or MASH late at night, taking walks in the evening to talk about our days.  How I could write forever about how much I've loved having you as a mother.  Thank God for you !!!  I will think of you every day until we meet in heaven.  Till then,  Goodbye - Sweet Dreams - I love you!
I expect I will cry much more once the ceremonial stuff is over and friends and family have gone on with their lives. 
When Mike and I got home, I noticed a bird on top of the highest gable on our house.  As the kids came out to greet us and play a bit, the bird stayed and watched.  I "bird-whistled" to the bird and my niece asked "What did you say?"  "I asked if the bird was my grandmother".  Maddy asked again "What did it say?"  As I told her I didn't know, the bird dove abruptly forward right beside us and flew off.  I guess Mom just wanted to make sure we made it home ok.
Oh yea - Thanks Mom and Dad for the thunderstorm that night!  It eased the pain... a little.

September 30, 2004
Time of Death was said to be 1:03 am but knew better.  It was 10:30pm and I was trying to put Eléna down when a sudden sharp pang of anxiety rushed through me and I felt sick.  I immediately thought of Mom and how difficult the last week had been in accepting what was soon to be.  I thought to myself that I should call Mariner after putting Eléna in the crib since if something did happen to Mom it would take some time before a nurse would find her.
Rick called me at 12:16 am to tell me it had happened.
I couldn't get to Mariner fast enough - everything seemed to be slowing me down but I raced as quick as I could as if I could catch her before she was really gone.  I walked inside the home in utter fear.  How would she look?  How would she feel?  Was this all for real?  I slowly entered her room, 216A where I had been everyday religiuosly for the past week, to see her lying down in her usual position in the bed, her eyes and mouth slightly open.  I called to her softly - somewhere in the back of my mind hoping she would look at me and smile.  No response.  Cautiously I reached for her body anticipating the cold stiffness I had always heard about but I was graciously surprised that she was still warm on her left hand.  Quickly, I searched her body for any warmth and found her head still had the heat of life in it.  I grabbed her hand and head and held her to me as I cried.  I told her over and over again how much I loved her.  I held on to her and her last bit of warmth until it was gone.  That is when Hospice came in to declare time of death.
Since the funeral home would be some time before getting there, Hospice encouraged me to leave.  While the nurse tried to sound compassionate, I could tell she was tired and eager to leave - my attendance there was keeping her from going home.  After I explained I would leave in a while, I climbed in bed with her as I did when she was alive and spooned her - her body cool now and starting to tighten.  I rationalized to myself that my warmth would keep her body flexible longer - at least until the funeral home came to take her away.  I lay there in anguish replaying how I had done that exact thing with Mom earlier that day.  I had sang her all her favorite songs and my songs dedicated to her.  I had told her again how Ricky and I would be all right.  I reminded her that she had always wanted to go in her sleep so I wanted her to close her eyes.  She did - and I spoke of heaven and her Mama and Papa and sisters waiting with open arms to recieve her there.  There was nothing left to wait on here.  Everything was ok - children, money, visitors.  She didn't need to reopen her eyes.  Just stay asleep.  That day I had told her "Goodbye" for the first time rather than my usual "See you later, Mom".  I hope she had not been waiting for me to say that one word.
Relentlessly the Hospice nurse came in and egged me to go home for safety's sake and I gave in.  I went to my car and cried.  The nurse drove off and I, determined noone was going to take my last moments away with my Mom, went back in.  I was going to make sure her body was treated well in her transport.  John Hopkins, the driver from the funeral home, came around 3am.  I left Mom and asked John to be very careful with her.  He assured me he would be.
I watched from inside my car as he wheeled her out and place her in the back of a Windstar.  I watched for fear she would be mishandled - maybe not her, but her body.  Even if her soul had left, that "body" was good to me.  It gave birth to me, rocked me as a baby, cared for me when I was sick, held me when I was scared, slept beside me when I was a child till I fell asleep, danced with me, took me to endless activities, was present at my graduations, wedding and birth of my first child, loved me unconditionally for 36 years and held up very well during it all.  I followed him as he drove off with her, close behind him for fear of losing sight of them.  Once they turned left on Jones, I went right, honking twice ( a tradition my father had done to say good bye).  I drove so slow as I watched the red taillights grow dim in my rear view mirror and I cried.
November 21, 2002

My mom just turned 74 years old.  I can remember like it was yesterday when we threw her a
surprise party for her 70th birthday with as many of her closest friends and family we could
round up.  Those that were out of town and could not come called her during the party to say
Happy Birthday.  Mom was so surprised.  I could tell with some of her older friends that she
wasn't quite recognizing them though.  This day marked the first time I admitted to myself that
Mom had Alzheimers.  Even though we had not tested for it yet, I knew something was wrong more
than old age.  That evening after dropping Rick off at the airport, Mom was lost for over 5
hours.  I had called the police, the hospitals, friends and relatives to find her.  When she
finally called me late that night, I yelled back from relief to ask where she had been.  After
much denial on her part, she admitted she had gotten lost - after 70 years in Houston Texas,
she had gotten lost.

Now 4 years later, the lights in her mind have turned off one by one never to turn on again.
She no longer can care for her appearance, she communicates very little, she usually refers to
me as her sister or her "mama" rather than her daughter.  Since I am the local one and do the
doctor's appts, tests and other grooming pieces, she usually looks at me as the bad guy for
subjecting her to these events.  She has told me she hates me, she has grabbed me and grimaced
in my face while trying to curse at me and she has walked out on me.  I tell myself that this
is not my Mom - not the most loving, unselfish, forever giving, wonderful human being that
raised me.  And I know in my heart that she does not know or mean what she is doing.

On Nov. 11 (2002), I took her to the doctor to rescope her ulcer situation in order to ensure
everything had healed.  It had - thank God!  After the appt, I took Mom to a mexican restaurant
(her favorite food) and a butter pecan ice cream cone (her favorite dessert).  As I sat across
from her finishing lunch I heard her clearly say "Mele?".  Startled, I looked up  - amazed she
recognized me and called me by name.  "Yes?"  I said.  "Mele?" she repeated as she looked at me
glossy eyed with a loss for words.  I thought for a moment and realized she was trying to tell
me her appreciation for what I was doing - the way she always did when anyone did even the
tiniest thing for her.  If she could have, she would have said "Mele - you know how much I
appreciate what you do for me.  I know you have so much going on with your own life."  In that
moment of silence, the only thing I could say was "I know Mom, I know".  And we stared for a
moment at eachother.  I soaked in that wonderful second in time where I had my Mom back - she
knew me - she knew what we were doing - she looked like my mom looked with those caring,
selfless eyes.  I went numb and shut the thought out as we finished our day together.

It wasn't until the next morning that I allowed myself to feel again.  And when I did, I fell
apart.  How could my Mom be gone?  How could I get her back?  I missed her so much even though
she was still here.

I don't know how much longer we have with her.  I hope that she is here to see baby Elena
Mariam born in February - her third grandchild, her namesake.  May she be aware enough to know
that I am so proud to give my baby girl a name of a woman I respect and love so much.  I will
save Elena's cord blood from the birth in the hopes that one day they will develop a cure for
this awful disease so that Elena nor Zachary nor Benjamin will ever have to feel this slow
journey into darkness.

As for my Mom, I pray that the light of God comforts her quickly in that darkness.  Until then,
I will hold onto the good memories I have of the most beautiful woman I have ever known.


Melé Angelique Jamail-Perkins Faulise

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Lessons Learned

                 1. You never know what you have until it's gone.
                        2. Life is Short; Take Time to Enjoy the Small Things
                        3. Long Term Care Insurance is a Good Thing
                        4. Feel the Strength in Your Loved One's Hands
                        5. Prepare Your Papers While Your Young; How about today?
                        6. Don't Plan Your DEATH; Plan Your LIFE
                        7. It is okay to feel sad and to cry; this is not a happy time.
                        8. Don't Expect Others to Act on Your Level
                        9. (still learning)


Letters from the Internet

"So lean is the muscle of the heart;
It patters on, year after year, rarely a flutter;
then, as it feels the pain of a loved one,
it coughs and sputters and aches,
as if it had been sickened all along."
-- r perkins, may 25, 2003

An email from Judi Lala, Sept 29,2004, who is a niece of Mariam's and a daughter of Georgette, Mariam's sister ...

Dear Ricky,
  I know what a difficult time this is for you and Mele and I am thinking about you and praying everyday.  Saying goodbye to your Mom is the hardest thing you will ever do.  There's noone like your Mother, nobody loves you like your Mother.  Just know that she will be so much happier in heaven with her sisters and her parents.  You will see her one day again. 
  I have been enjoying the pictures and diary on the website.  You were so good to do that for all of us to enjoy.  I do remember Aunt Marian so well.  She was always at Grandmother's house when I was a little girl.  She was the most beautiful woman you ever did see and the men were all after her.  She had a date every night.  They just wouldn't stop calling or coming over.  I am so glad that she didn't marry until she was 30 because believe you me - she had the time of her life and there was a reason for that.  She had all of her good times before marriage.  God bless her.  She didn't deserve her later life at all.  She was the best wife, mother, friend, sister and daughter.  She was always so cheerful and happy and funny.  She was always so sweet and loving.  I loved being with her and going over to your house to babysit with you.  She would always pick me up early so that I could visit wi! th her while she got ready to go out.  We would talk and laugh and she would show me her clothes and I would help her decide what to wear.  When your parents left - your house was my house and you were my little baby.  You were the cutest little baby! I have the fondest memories of those days and I will allways love Aunt Marian and remember the special times we shared.  I don't know why our Mothers had to have this awful disease, but I do know one thing - they didn't deserve it.  Maybe that was their purgatory on earth - and they went straight to heaven. 
Alicia said that she would love to sing at the funeral - what do you want her to be practicing?  Did you have something special in mind? Let us know.   We love you,  Judi

An email from Carolyn Plesser, Sept 29, 2004,  who is a daughter of one of Mariam's uncles ...

I just received the e-mail about your Mom and I am very sorry.  I know how hard it is to loose someone and it is hard when you can't do anything about it.  You are right, everyone in the family said the same thing if they were to get very sick.  You and Mele have done everything possible for your Mom and it will be hard and sad but you always have the good to remember.  This site you all have set up is absolutely fantastic.  It brought back a lot of memories for me.
I am always here if you all need anything. 


An email from Peggy Smith, Sept 28, 2004, wife of Mariam's nephew Curtis Smith (son of Georgette)

Dear Rick and Mele,
    I am seeing your website for the first time and just want you to know that I have never seen a more beautiful tribute to a Mother in my life.  You have both gone above and beyond  the call of duty.  How lucky Miriam is to have the both of you...But I think she knows that.

An email from Mrs. Linda Owens in South Carolina:
        Subject: alzheimer caregiver          Date: Fri, 23 May 2003 10:20 am
     To: rperkins

  Hello, my name is Linda and I live in South Carolina. We care for my husbands mother in our home. She has reached the pacing and no sleeping
  mode. She cat naps all day and is up all night. I have to take the burners off the stove at night time because she wants to cook and leaves them
  on. She is in a very hateful stage right now with accusing everyone, striking, hiding food etc. She moves her closets around and reranges them
  nightly. Then the next day she complains someone has stolen things. I am her daughter-in-law and she only wants me to do things for her. She
  has become so hateful to her son her only child and he takes it all to heart and I try telling him, this is just the alzheimers. Shes 87 years old and
  has been very active her entire life. Her health is wonderful except for the alzheimers. I would say shes almost in stage 3 now, as shes changing
  her pj's two to three times aday. Refuses to leave diapers on. I am trying to get her on medicaid. I hope to be ready for a nursing home when the
  time comes.
  I would love to hear about how to get the help for free meds. Her meds run me around $400.00 a month. We brought her to live with us 3 and 1/2
  years ago. I have been thru hell and high water. Shes very very stuborn and thinks I am suppose to be around her constantly. We have a two
  story home and we gave her our bedroom downstairs and added on to it and had her a screen porch added also. I have fibromylgia and heart
  disease too and running up and down the stairs is getting me down too.Any tips from you that will give me an idea as to the last stages I'd
  appreciate. I read you journal and admire you for all you have put aside and done for your very beautiful mother.
  My husband being an only child leaves me to be her caregiver, I need to get out with my friends for a meal or chit chat, but my husband takes
  everything to heart she says. Shes truly hateful and accusing him of things. Hes a dear man but may I say again, a MAN! Thank you for your
  story and please let me know about any information that mau help me down this path..Best Regards, Linda Owens

Rick's response, May 27, 2003:


Be strong.  You must realize that you are going BEYOND your call of
duty.  You are a Star, a Hero, a helping heart.  Nothing that your
Mother-In-Law is doing, or saying, is your fault.  Be strong for
yourself, first.  You don't want to come out of this with any emotional

Repeat this to yourself daily.

Check out my Mom's website at and click on
The Alzheimer's Experience


Now that we have that out of the way, here is what you should do.

1. Was your MIL the wife of a honorably discharged veteran?  Very
important.  If her husband was a veteran in one of several wars,
including WWI, WWII, or the Korean War, and he income is not too high,
she will qualify for "Widow's Benefits" from the VA.  You will need to
only go to the closest Regional Veteran's Assistance Center (look in the
"blue pages" of the telephone book) or go to their website.  She may be
eligible for up to about $900 in VA benefits.  This can pay for her to
live in an Assisted Living home or for someone to come to your house on
a daily basis for some number of hours per day.

2. Does your MIL have any income in her name?  Any investments?   If she
does, sell them or transfer them into someone else's name immediately,
preferably your husband's.  You need to liquidate it and get it out of
her name.  Medicaid will only pay if she has a very low amount of
income.  I believe that having a house is okay but I would liquidate
everything that is in her name.

3. Get Power of Attorney, Medical Power of Attorney, and Instructions to
Physicians written.  You can find these forms on the internet.  Just
print them out, sign them with witnesses, have them notarized, and so
forth.  For the Instrutions to Physicians, you can get a copy from your
nearest hospital.  Everyone that checks into the hospital has to fill
them out, but it's better to have it all done inadvance.  Make 5 copies
of everything and have originals made with original signatures.

4. Call Together Rx at 1-800-865-7211 and tell them you would like to
apply for discounted or free meds for your MIL.  Tell them you which
drugs she is taking.  She should be taking Reminyl (for Alzheimers) and
Zoloft (for depression).  Some doctor may want to put her on Risperdal
to reduce her anger, but be careful because they will probably overdose
her and she will be a zombie.  Have them start at the lowest dosage and
go up.  They ussually like to go to the higher dosage right a way.
Apply for the Together Rx card, and send it in ASAP.  Then you will get
the card in the mail and you will receive something like a 20% discount
on the drugs.  THEN ... you can contact Janssen (manufacturer of Reminyl
and Risperdal) and apply directly with them to get an additional
discount of the drugs.  Jannsen is at 1-888-294-2400.

If I were you, I would strongly consider shopping around for the best
Nursing Home that you can find that accepts Medicaid.  Maybe 1 in 5 of
them are good ones, so it may take a while.  The professionals there
will care for your MIL in the best way possible.  At first, you'll go to
them and not like the smells and so forth, but just keep looking until
you find one that doesn't smell and the employees seem to be nice.  You
may also want to have a meal there.

I hope this helps.  You may need to join an Alzheimer's support group; I
guess they are everywhere.  I have never done that but I do read a lot
of literature on Alzeheimers.

Good luck to you ... I have been through the entire process, so please
do not hesitate to ask me about which forms you must fill out and so
forth.  I have a file on all of that ... oh yea, you probably should
purchase 3 or 4 3-inch 3-ring notebooks and a hole punch.  Keep things
organized by date.  You'll be receiving a lot of paperwork.

Good luck!

Rick Perkins
Austin, Texas"

Date: September 1, 2003
Dear Rick: I came across your web site by accident but just had to read it. I want you to know that when I was little my mother told me that if I should hear an owl it would mean that someone would die. I haven't heard an owl, but I don't know why this couldn't be true, either.

In addition, I wanted to let you know that I will be remembering you and your family in this most distressful time. Your Mother may not recognize you, but she will remember the love. That is what she needs most of all.

God bless you!

Betty Blanton

Steps on the Stairway to Heaven

    Simple Forgetfullness ... "oh she's just getting old"   -> first signs   1999 to 2000
    Financial Problems ... "they told me I needed it" ... ->  lack of good judgement
    Denial ... "do you think I don't have a mind?"  ...   ->  last chance of holding on to reality
    Losing Freedoms ... "its MY car!"  ...  ->  taking away mobility and the use of automobiles Dec 2001
    Confirmation ... "when everything else is ruled out"  ... ->  still no positive test for Alzheimer's
    Planning ... "a dignified place to live ... or a nursing home?"  -> how much!?      July 2002
    Incontinance ... "one more loss of control" ->  we hit this stage in November 2002
    More Drugs ... Risperdal to Control Agressive Behavior - November 2002
    She Still Knows My Voice ... <-- She hasn't left yet!  December 2002
    Who is he? ... <- Does not know my name anymore, just that I love her.   December 18, 2002
    Talks very little ... <-- She is almost speechless.  December 24, 2002
    Still can Dance!  ...  <--- Dancing to Big Band Music ... her feet are a natural! December 25, 2002
    Difficulty Walking and Eating ... She needs help with her food and drinks ... January 2, 2003
    Hospitalized with Pneumonia ... A case of pneumonia has her in the hospital ... January 4, 2003
    Much Better Now, Talking, Smiling!  Ready to go back to the Hampton!  January 22, 2003
    Fell Out of Bed and Fractured her Pelvis - Must Stay 2 More Weeks ... January 24, 2003
    Admitted to Park Manor Nursing Home - Valentine's Day - Feb 14, 2003
    Hospital Again - Gastrointestinal Bleeding - March 1, 2003
    Approved for Medicaid!  Yippee - March 18, 2003
    Happy and Stable, Big Smiles, Healthy, Mobile - April 10, 2003
    Back in the Hospital; Another Bleeding Ulcer - April 27, 2003
    Still Smiling Through it All - Zoloft Rocks! - April 30, 2003
    Bleeding Again - May 4
    Back to Scooting Around at Park Manor - May 12, 2003
    New Problem in Urinary System - May 13 - 24, 2003
    Back to Park Manor - May 25, 2003
    Back to Hospital - May 29, 2003
    Back to Park Manor - June 8, 2003
    Healthy and Happy, Rolling and Walking - June 25, 2003
    Rolling, Walking and Full of Energy!
    It's Back ... July 24, 2003 ... in the hospital
     She's a Strong One!  Back to Park Manor ... July 31st
     Back to Bleeding ... August 11th
     All Good for Now ... September 5, 2003
     Refuses to Let Go ... Very Strong Will   ... September 26, 2003
     Happy and All is Healthy ... November 25, 2003
     Nose bleeds!   ... December 11, 2003
     Smiling into 2004 ... Jan 4, 2004
     Disrobing Again ... Feb 2004
     Infections and Back to the Hospital ... June 2004
     Cured of Infections; Back to Nursing Home ... July 2004
     Weak, Losing Weight, Forgetting How to Eat ... August 2004
     Mysteriously Hit Her Head - September 28, 2004
     End of Life on Earth ... September 30, 2004
     Funeral Mass / Burial ... October 4, 2004.     

Important Links

Together Rx Program for Free or Discounted Drugs:
National Institute on Aging:  Alzheimers Association
 Information Resources:

American Health Assistance Foundation
The Alzheimer's Store
Alzheimer's Tips of All Sorts

 Care Giver Personal Pages:

Carrie's Place - A CareGiver for her Husband

Veterans Benefits

 Florida Link to Some Widow's Benefits

Long Term Care Assistance

This is the Insurance that you buy when you are young so the premiums are lower.  If you ever need to live in a nursing home or need home care (via old age or a car wreck or something like that) then you will be so happy that you have this insurance.  My premium is only about $68 per month and if I do go into a nursing home or require home care, it covers me at about $110 per day.  My wife has it also.

 G E Capital - Recommended


Mele's Tribute Song

Wind Beneath My Wings

Bette Midler
(A Walk In The Clouds)

Ohhhh, oh, oh, oh, ohhh.
It must have been cold there in my shadow,
to never have sunlight on your face.
You were content to let me shine, that's your way.
You always walked a step behind.

So I was the one with all the glory,
while you were the one with all the strain.
A beautiful face without a name for so long.
A beautiful smile to hide the pain.

Did you ever know that you're my hero,
and everything I would like to be?
I can fly higher than an eagle,
for you are the Wind Beneath My Wings.

It might have appeared to go unnoticed,
but I've got it all here in my heart.
I want you to know I know the truth, of course I know it.
I would be nothing without you.

Did you ever know that you're my hero?
You're everything I wish I could be.
I could fly higher than an eagle,
for you are the Wind Beneath My Wings.

Did I ever tell y! ou you're my hero?
You're everything, everything I wish I could be.
Oh, and I, I could fly higher than an eagle,
for you are the Wind Beneath My Wings,
'cause you are the Wind Beneath My Wings.

Oh, the Wind Beneath My Wings.
You, you, you, you are the Wind Beneath My Wings.
Fly, fly, fly away. You let me fly so high.
Oh, you, you, you, the Wind Beneath My Wings.
Oh, you, you, you, the Wind Beneath My Wings.

Fly, fly, fly high against the sky,
so high I almost touch the sky.
Thank you, thank you,
thank God for you, the Wind Beneath My Wings...

MARIAM JAMAIL-PERKINS. Our beloved Mariam Jamail-Perkins, 75, passed away on Thursday, September 30, 2004. Mariam was preceded in death by her husband Richard "Dick" Perkins, and her sisters Geri, Madelyne, and Georgette. She was the daughter of George Said and Edna Murr Jamail, part of the larger Lebanese family that immigrated to Houston in the late 1890's. She is survived by her loving extended family; which includes daughter, Melé Angelique Perkins Faulise of Houston; son, Richard Burle Perkins of Austin; sister, Sherlee Stigall of Houston; and three grandchildren, Zachary Charles, Benjamin Richard and Eléna Mariam Faulise. Friends are invited to visit Sunday, October 3, 2004 between 6:00 pm to 9:00 pm, with a Vigil at 7 pm, at Memorial Oaks Funeral Home, 13001 Katy Freeway. A Funeral Service will be held at 11:00 am on Monday, October 4, 2004 at St. Cecilia Catholic Church, 11720 Joan of Arc Drive, Houston, TX 77024, 713-465-3414, with Father Thu officiating. Interment will be at 3:00 pm October 4, 2004 at Memorial Oaks Cemetery. In lieu of flowers, please support the Alzheimers Association,

Published in the Houston Chronicle from 10/2/2004 - 10/3/2004.

Rick's Tribute Song          Play Song

How Far is Heaven?

Los Lonely Boys


Save me from this prison
Lord help me get away
Cause only you can save me now
From this misery

I've been lost in my own place
And I'm getting weary
How Far is Heavan?
I know that I need to change my ways of livin'
How Far is Heaven?
Lord can ya tell me?

I've been locked up way to long in this crazy world
How far is Heaven?
And I just keep on praying Lord and just keep on living
How far is Heaven?
Lord can you tell me?
How far is Heaven?
Cause I just got to know how far, yea
Lord can you tell me?

Tu que estas en alto cielo
Hechame tu bendicion

I know there is a better place than this place I'm living
How far is Heaven?
I've just got to have some faith and keep on giving
How far is Heaven?
Lord can you tell me?
How far is Heaven?
I just gotta know how far
How far is Heaven?
Lord can you tell me?
How far is Heaven?
I just got to know how far
How far is Heaven?
I just want to know how far ...