This is the day-by-day account of a beautiful person stricken by Alzheimer's Disease as told by her children.
READ HOW IT ALL CAME DOWN, BEGINNING TO ENDNEED HELP?
NEED TO ASK A QUESTION? WE'RE HERE FOR YOU, JUST ASK ... WE KNOW YOUR PAIN.
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
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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 !
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!" - 1993
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"
Mariam - November 1978, Age 50
Nov 1998 at 70th Surprise Birthday Party 1946 at Age 18, Downtown Houston
With Daughter Mele' in May 2002 Mom, November 6, 2002
Some of the Jamail
2002, missing Janine and Darlene
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.
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
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
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:
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.
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
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."
school days were fun at ."
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.
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 ."
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
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
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.
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.
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.
went and visited
her today (Sunday) and walked around with her and so forth, and things
24 - 26, 2003 Mariner Nursing
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.
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).
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.
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.
email: firstname.lastname@example.org or was it .net? Anyhow,
she's out there. Happy New Year.
December 11 - 13, 2003 Cypress Fairbanks Hospital
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
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
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.
18, 2003 Mariner Nursing Home
Mom was born in Houston in St. Joseph's hospital. Same place that
I was born some 32 years later.
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.
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.
visiting with her this weekend.
October 29 - 30, 2003 Mariner Nursing Home
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.
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.
28, 2003 Mariner Nursing Home
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
10, 2003 Mariner Nursing Home
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.
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
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
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.
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.
30, 2003 Cypress Fairbanks Hospital
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.
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.
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.
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.
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
28, 2003 Cypress Fairbanks
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
August 22 - 24, 2003
Mariner Cypress Nursing Home
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
20, 2003 Mariner Cypress Nursing
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.
14, 2003 Cypress Fairbanks
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.
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
9 - 10, 2003 Park Manor Nursing
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.
1, 2003 Park Manor Nursing Home
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
27, 2003 Cypress
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
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
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
Shirley visited with her neices Suzanne, Janine, and
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,
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
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
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
guess that she is the healthiest that she has been in the past 6
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
was in Austin so that I could be much more involved in her quality of
Mele' has 3 kids now and she doesn't get to visit Mom very often, and
time with her is not one-on-one, but rather trying to maintain 3 kids
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
like the humidity or heat much) and we just sit around and try to
Actually, it's amazing how fast 2 or 3 hours goes. Alas, I'm
again next week so I will not be able to see her for another 8 days or
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
ICU to a standard room; Dr. Mohan found another tear in Mom's
like the other times. Dr. Tadros now has listed Mom as allergic
aspirin. Hopefully this will stop everyone from trying to give
more aspirin. I'm going to post signs around her bedroom
We are hoping that Mom can return to Park Manor ASAP, because they
us $115 per day to "hold" the bed. We don't get reimbursed from
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
things could be worse.
April 27, 2003 Cypress Fairbanks Hospital
Our luck was
this morning. We received a phone call from Park Manor and they
us that Mom was throwing up blood again. It has been quite a
since the last problem where she was just in the hospital for 2
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
the problem is. It must be something in her intestines. Dr.
Mojan tried to do the endoscopy tonight, but her throat and stomach
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
Elena and Mele' reported that Mom hugged and cuddled Elena and they
several photos. I will post one or two of them when I get a
Mom was responsive, smiled, said a few words, and kissed on
Evidently she realized this was her granddaughter. Things are
good now. Medicaid kicks in on March 14th, so that is a relief.
March 6 - 8, 2003
back to Park
on March 6 and took about a day to adjust. It seems that the
staff at Park Manor automatically think that she is bed-ridden and it
one of my visits to get her in the wheel chair and walking around to
them that she is not as bad off as they think. Mom is still not
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
strength back to possibly walk again. The risk that comes with
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
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
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.
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
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
to the CyFair hospital at 11:30 pm at night. And there she will
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.
Dr. Cory and Sharon, they've brought Mom some food (kibbee and grape
but evidently Mom has turned it away. (Ya know something is
Also, we notified the Pharmacy doctor that Mom does not seem to work
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.
located on the
floor of Kildred, which is on FALLBROOK, in between FM 1960 West and
Road (it makes an arc connecting the two). Kildred is the 4 story
building next to the 3 story building. It is not the
Visiting hours are 24 hours a day. Mom also likes ice
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.
in older people tend to make them lose their speech abilities.
Never knew that. So, this morning Mele' visited Mom and she was
and happy and hugged her and so forth. They talked for a short
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
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
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
touched my face as if to say "my precious darling son" which she used
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
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
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
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.
Willobrook has told us that Mom is requiring too much time to
I'm not sure what the next step should be, but possibly a nursing
Mom has been removing her clothes at all times of the day and walking
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.
cannot figure out why she wants to take her clothes off though.
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
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
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
to 0.25 mg in the morning and 1 mg in the evening. On 3 mg per
Mom was sleepy all day long. This must be strong stuff. Dr.
Tadros has prescribed some medicine to ensure regularity and also he
a blood test for her, where he is going to check all of her enzyme
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.
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: http://www.together-rx.com OR http://www.rxassist.com ...
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.
traveling for work
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
once a week. However, living in Austin makes it a little more
I had thought about moving her to Austin, but then my sister wouldn't
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 DAY: Several 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 http://www.together-rx.com
Alas, as of
25, 2002 we still have not been approved for the Veterans
Widows Assistance Program. It has been "in process" since late
2002. We were told by the Harris County Veterans Assistance
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
$2,400 plus medication. Last month medication costs were $900,
hopefully this Together RX program can help reduce that
.... Thanks for reading. All for now.
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.
and by the way, we have not received any assistance from the Veterans
I call them weekly and they say that it will not be much longer, yet
someone has to come out and visit Mom in her new living
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
that the VA will someday do their job and start sending us the VA
check of $850 per month, because we are just about at the end of the
as far as finances go. The next step will be a Nursing Home and
the way that it is going.
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.
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.
visited Silverado in the past and it is a very nice place. The
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
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.
say that Mom pushed down another old lady at the Hampton which caused
other lady to break her wrist. The only witness is a
resident and not someone who works there. Most of the workers
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
had to be rushed to the hospital in an ambulance because of some type
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
at this time. She spent a week in the hospital and had a couple
series where she was under anisthesia and she was weak and lost a lot
blood. They had to keep her in ICU because she kept wanting to
up and walk out of the hospital. Several times she pulled the
out of her arm. I was able to spend about 4 days with her and
to get her out in a wheel chair and into the sun. She seems to
appreciate my efforts, especially when I would roll her around the
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.
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.
think Mom is going to like it, she has a one-room apartment basically
shower and 3 square meals a day. There is no lock on the doors
and we're a little scared that she might just wander away. But,
a very nice respectable transition and we can be assured that someone
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.
begin with a discussion of what my Mother said to us before any of this
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
taste or class or too weird; it is what it is and until you have
it from beginning to end ... you just don't know ... and besides, its
Send a Note to Mariam's Memory Book
Return to Top
Message from Mele' (Mariam's Daughter)
My mom just turned 74 years
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
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
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
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
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.
Return to the Top of
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
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
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
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
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
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 http://www.gringoamigo.com and click
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?
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
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
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
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
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
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
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.
Steps on the Stairway to Heaven
... "oh she's just getting old" -> first
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.
|| 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
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;
Richard Burle Perkins of Austin; sister, Sherlee Stigall of Houston;
and three grandchildren, Zachary Charles, Benjamin Richard and
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, www.alz.org.
Published in the Houston Chronicle from 10/2/2004 - 10/3/2004.