

The
following journal spans approximately 18 months.
This page contains the beginning and goes through 1996.
You an continue on to 1997 by clicking the button at the bottom of the
page
I
first noticed memory problem three years ago, May 1992 when I was in Hospital
with a broken ankle. My husband got lost trying to get home after visiting
me in the hospital. Then I began to notice that he became confused and
could not find his way to a restaurant three miles from home where his
Sunday School friends were having breakfast once a month. This began to
happen regularly, until he quit wanting to go.
Then in February 1994, I went to Texas to be with my sister when her husband
died. When I returned after a week, I discovered that he had not eaten
the meals I had left for him. He had forgotten how to use the microwave.
He had tried to drive to Webster ( Flea Market ) and got about half-way
there and could not remember how to go on from there, so he did turn around
and returned home. It was then I began to realize that I couldn't leave
him alone anymore.
He stopped driving his little truck because of his confusion.
Then in September 1994 he had to be hospitalized because of blood clots
in his left leg. He has a strainer in his abdomen because he can't take
blood thinness - he bleeds internally. He went absolutely berserk in the
hospital, and has gotten progressively worse since then. Dr. Parks, after
a Schilling Test, put him on once a month Vitamin B - 12 injections which
he has been on over a year now.
He became depressed and he now takes 5 mg Paxil at bedtime for that. He
requires Hytrin for Prostate problems. This seems to help most of the time,
but I never know what he will do at night.
Dr. Soto, at VA Hospital prescribed Haldol, he takes .05 mg of that at
bedtime. Seems to help.
He was evaluated by the doctors at the Memory Disorders Center at USF,
and a report was made to me and my son, John Hart.
He is still under the care of his primary doctor, and also Dr. Gold, neurologist
at USFMDC.
I will attempt in all future notations to try to document the strange things
he says and does. he sleeps a lot, some times as much as 15 or 16 hours
in a 24 hour period.
He cannot remember that his father, mother, brother, and three sisters
have been dead for many years. He constantly asks me about them as though
they were alive.
There are many times when he thinks he still has to go to work, and I have
had to ask a neighbor, once to help me get him back in the house when he
tried to walk "to work".
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4-12-96
I had to go to the bank, and he persuaded me to let him stay home, said
he would sit right there and watch television. I was gone longer than I
had intended to be, and when I returned, he was walking down the street,
already 200 feet from the house, in his PJ's.
I won't be able to leave him alone anymore, I never know what he will do.
He is registered with the Alzheimer's wanderers program, and wears a chain
for ID in case he wanders away.
4-19-96
He came into my bedroom at 1:30 AM shining the flashlight in my face and
asked "Are you awake? Naturally, I said, "I am now." He
went to bed and went right to sleep, while I just tossed for another hour
or two.
4-23-96
Today he could not be convinced that he hadn't been driving his truck(
sold over 1 1/2 years ago ) this week. He kept insisting that I must know
that he was still driving and that I must know where he had left the truck.
Frustrating!! but sad, too. I care for him so much. We have been married
61 years the 1st day of June.
4-25-96
Claude took a cold.
4-26-96
What a trying day! It seemed that Claude was especially "out of it"
today. When I told him to open his car door so he could get out of the
car, I saw that instead of the door handle he was trying to pull the safety
belt out of the car. Then tonight he was in the kitchen, while I was occupied
in another room. He had poured coffee in the place where the water goes
in the coffee pot and turned the pot on. when I tried to clean up the resulting
mess I discovered that he had put "Tums" in either the coffee
or the pot. What a mess!!
4-27-96
Claude slept all night 4-26-96, all day 4-27 and all night 4-27-96. He
only woke up long enough to eat then back to sleep!!
4-29-96
At 1:00 AM, I awoke to find Claude up packing up all his things. He had
emptied a whole drawer in his chest, packing every sock and handkerchief
and whatnot into his shaving kit and a paper sack. When I asked him what
he was doing he said he was getting packed up to move to our "other"
house. I finally managed to get him back to bed and to sleep. Then this
morning he said he couldn't find the "Preparation H". I asked
why he needed it and he said he wanted to put it on his face so he could
shave. What's next?? Who knows!!
5-4-96
Last night, just before we got ready for bed, Claude asked me if the man
who slept in the other bed was asleep. There is no other man, and he says
he was there. It is so strange how he sees people who are not here nor
have ever been.
He still asks about his Dad and brother Jim as though they were still alive.
Thank God for friends and loved ones whose prayers will get me through
this.
5-10-96
We had my niece and nephew here for a visit tonight. When they left Claude
asked where our little doggie was. We haven't had a dog in over twelve
years. He said our company had two dogs when they came in. Of course they
didn't have any. He insists he saw them.
5-11-96
Tonight Claude really seemed "out of it". He wanted to know what
his mother wanted me to do, as though she were right here. She's been dead
for years.
Then he asked where the bathroom was in "this" house. When I
told him it was in his bedroom, then he wanted to know where his bedroom
was. then he wanted to know where the people were who were sitting on the
couch "a few minutes ago". Of course there had been no people
there.
He's lost or hidden his wallet somewhere and we can't find it, been missing
for several days.
5-14-96
Last night Claude asked where "our little kids" were going to
sleep. I asked him how old were these kids. He said about 7 or 8 years
old, he guessed. Every night its a regular question. where are you going
to sleep? Where am I going to sleep? Where's the bathroom?
We did find his wallet last night, under his amplifier where he had hidden
it. Wish it had been the one he lost with almost $500.00 in it!!
5-20-96
Last night I reduced Claude's dosage of Haldol from .50 to .25 ( or from
1/2mg to 1/4 mg ) noticed no difference in reaction to the change.
5-23-96 AM
Still no reaction to the change in Haldol dosage. He did get up again in
the middle of the night and put his clothes on.
PM
The Day Care workers said that Claude was very restless today. Kept trying
to leave and go "find his tools".
I had to go back to his 1/2mg dose of HalDol.
5-24-96
Claude had a restless night. Wet his bed. Had to get him up and into shower,
while I changed his bed and put the bed clothes in the washer.
6-7-98
I haven't written anything lately because it seemed to be much the same
each day. Sleeping until I make him get up at noon, then eating and then
sitting down in a chair and sleeping another three or four hours.
Then comes bedtime. He can't find the bathroom, his bed is gone - someone
else's bed is in his room. He wants to "go back home". He can't
remember that we have lived here almost eight years!!
He wants to know when his dad and Jim, his brother, are coming back. They
have been dead over twenty years!!
Then last night he got up twice in the middle of the night put his clothes
on, and it took all the persuading power I could muster to get him to go
back to bed. He kept insisting that he had to put up his tools he left
outside. When he was working in the yard. He hasn't worked in the yard
in three years.
We have an appointment to visit the VA Respite care unit this morning.
I'm wondering how he will react.
After visit to VA Respite care, Claude did not seem to mind to understand
that we planned to have him taken care of for two weeks - 6-25-98 - 7-8-96
- even though we talked freely before him and to him. He made one comment
on the way home. He said " I don't think I can get back to that hospital
by myself." I told him he wouldn't have to.
6-25-96
Well, it is finally done. The day has come to take Claude to the VA Nursing
Home Care Unit. John took the day off from work to go with me to take his
dad. I thank God that he did offer and make the necessary arrangements
to go with me. He was such a blessing.
The paper work went real well and we were there for four hours. 8:30 AM
to 12:30 PM. Two of the workers started talking to Claude and they had
us slip away while he was eating his lunch and talking to them. Outside
the door, I couldn't hold back the tears. It was like leaving a little
child in a nursery school for the first time. Just broke my heart.
Everyone there assured me that he would be fine. My head knows that, but
it is hard to convince my heart. I called several times to check on him,
and they say he is doing okay. Thank God for that.
I am going to Sarasota for a week's vacation with Hazel. I just pray that
everything will be okay.
7-5-96
Just returned home after a week in Sarasota with Hazel, my sister. It was
good to be free to rest or shop or whatever, if only, for a week. Of course
I missed Claude, but John has been to see him every other day since he
was taken to the VA for two weeks Respite care. John and I will pick him
up Monday morning. Pray that all is well and he will be glad to see me
and not mad at me for leaving him there for awhile.
7-8-96
This morning John and I went to bring Claude home from the VA Respite care.
When Claude saw me, we were so glad to see each other that we just broke
into tears and embraced as though we hadn't seen each other for months.
I think it was more emotional than our reunion after he had been away in
the Service. It was a good day for us all day.
7-9-96
How different today was than yesterday!! Claude started in about his truck,
then he couldn't find that useless ring of keys. Then after we had eaten
supper, he washed the dishes and I dried. I thought everything was going
just fine. We went out and sat on the patio and began to talk and really
seemed to be having a normal conversation when he said "I guess I
had better be getting home before dark." I told him he was home but
he wouldn't believe me.
He thought he was going home to his mother. I asked him then if he knew
who I was. He couldn't remember!! He said it wasn't right for us to be
living together. I told him it was fine, that we were married. He said,
"No, I am married to a girl named Margaret." I told him that
I was Margaret, his wife, but he wouldn't believe me. He asked me if I
had any proof that we were married. I had to get the marriage certificate,
but he still wouldn't believe. He began to cry the most heartbreaking cries
you have ever heard or seen. Then, he began, to cry some more because he
had no money. I tried to explain why he had no money, that we had money
in the bank and everything was half his, but he could not understand. Things
got so out of control that I thought I would have to call John to help
me. Then his glasses came apart. The lens fell out of one side. At that
time he seemed to get himself under control and calmed down. I told him
we would go to the eye glasses doctor to get his glasses fixed because
we tried but couldn't fix them ourselves.
Then it was bedtime and he was so tired out from all the emotional strain.
He couldn't even believe that he and I had been married for 61 years, had
three boys, six grand children, and three great grand children! He is asleep
now, and it's eleven seventeen o'clock( 11:17 ) I couldn't sleep so I got
up to write this episode. Maybe tomorrow will be better God willing.
7-10-96
Today was a much better day!! Still the usual repeat questions and asking
where certain of his folks are. They have all been dead for years and I
keep telling him that - He just can't remember.
7-29-96
For almost three weeks things have gone along very well. Always the usual
questions and answers. Claude had been sleeping at night so I could rest
too. But last night!! He woke me up three times shining the flashlight
in my face - asking " Are you asleep." He finally went to sleep
sometime after 3:00 AM. He is still asleep now and its 10:25 AM. I'll get
him up to eat soon.
8-2-96
Claude was really out of it last night. He kept insisting that there were
other people in the house. He didn't want me to have the TV up high enough
to hear it because he thought we were disturbing the "other people"
who were asleep. Then he came up with "How come these other people
let us stay in their house all the time?" Trying to answer his questions
and to try to make him understand that this is our house became exhausting.
I finally turned off the TV at 9:00 PM and got him into bed. He slept good
so I got a good nights rest. Now comes the ordeal of trying to get him
up and into the shower. Bath Day is quite a project.
8-12-96
Yesterday afternoon and night became another barrage of questions that
I did not know how to answer. First he wanted the back garage door unlocked
so that he could go out into the backyard. He looked around for a few minutes
and then came back in and started looking around. He then asked me where
the "ax" was. When I asked him what he wanted with it, he said
he needed to chop up a piece of wood. He seemed to become a little upset
because I wouldn't tell him where the ax was.
I finally got him back inside then he started again about where was his
truck. I tried to explain truthfully about the situation but he just became
more upset. So I tried to ignore him. He finally settled down and began
to watch TV, completely forgetting what had just happened.
It was after two o'clock AM before I could get him to go to bed so we could
get some sleep. He's still asleep and I've been up since 7:00 AM, about
five hours sleep, but not uninterrupted.
It seems that when these kind of times come around that I get an ache across
my upper back and in the upper part of both arms. I guess it must be stress
related.
8-27-96
Tuesday
Things have been going well for the past two weeks. We spent the past weekend
with Jean and Herbert at Hazel's apartment in Sarasota. Claude seemed to
enjoy watching the water-skiers and birds. He got along OK away from home.
Maybe we will try it again before long.
8-31-96
I stopped giving Claude the Haldol last night. It seemed time to try to
get him off it if possible. He slept through the night OK, but he seemed
not so responsive today, slept a lot. He became upset with me because I
wanted him to take off his good clothes and put on his pajamas. That is
an ongoing problem, wants to sleep in the clothes he wears all day. Bath
time is still a major project.
9-8-96
Once again (after a pretty good week) Claude wanted to stay up all night.
He woke me at 1:00 AM this morning - fully dressed even to his glasses!
I couldn't get him back to bed so I told him to stay in his room and not
wander around. I shut his door and went back to bed and to sleep. At 3:30
AM he woke me again, roaming with his flashlight. Then I lost it! I told
him to get back to bed. He began to undress and then he says to me "
You surely are getting hard to live with." He got back to bed and
I covered him up. Its now 7:45 AM and he's sleeping like a baby. I just
pray that God will give me the wisdom, understanding, and physical strength
to take care of him.
9-17-96
Today the VA Hospital called and told me that they could not keep Claude,
not even for respite care, because he required too much watching - that
he got past their security system and was out on the grounds of the nursing
home. They said their facilities were not secure enough for a patient who
was intent on getting out. That was a low blow to me, because I was hoping
that if the time came when I could no longer care for him that I could
place him there. I know that God has a plan for us but right now I am completely
in the dark as to what it is.
9-20-96
Last night Claude really gave me cause for concern. I had gone to bed and
to sleep when I heard him rummaging around in his room. When I asked him
what he was looking for, he said "matches", that he had to burn
up something. I never could understand what it was. I finally got him back
to bed, and now he is sleeping as if he hadn't a care in the world. I don't
know why I keep writing about this - it just seems to give me an outlet
for my concern and frustration. Kenneth and Dan do not have the slightest
conception of what is going on with their Dad. Maybe if and when they ever
read what I have written, they may begin to understand a little. Even John
is not around at night when the real problems are so vivid. There will
come a brighter day - I just know it!!
10-22-96
6:47 AM
It's been a little over a month since I have written anything down - Things
had been more or less routine with the usual questions and my answers as
best as I know how - but - last night was a nightmare!! The burglar alarm
woke me at 12:00 midnight. I jumped out of bed not knowing whether it was
a burglar or not and ran to shut it off. I was so scared that before I
could shut it off, there was loud knocking at the front door. I didn't
know what to do, with the alarm still going. I went to the front door and
turned the outside light on. When I looked out the glass in the door I
saw IT WAS CLAUDE!!! fully dressed even to his glasses. I let him in and
then went and shut the alarm off. By then the Brinks people were calling
to see if everything was OK. I was shaking like a leaf and tried to tell
her what had happened. After a few minutes I hung up and then I realized
that Claude was completely out of his head. He thought he had been working
and had come back to get a screw driver. I couldn't get him to realize
that he should go back to bed, he insisted he had to go back out - he had
to go back out - he had left " the man's" phone out of order.
I had never been afraid of him before, but this morning - I was afraid!!
I called John's house twice to get him to pretend to be GTE and tell Claude
that everything was OK now. He finally got so angry with me, because I
wouldn't let him out that he sat down in a chair and looked as if her were
going to sleep. Then I got him up and then back in bed, still dressed.
He went to sleep about 1:20 AM, but I couldn't calm down and get to sleep
until after I heard the clock strike 3:15 AM. That's why I am up so early
now. I hope he will be OK at daycare - he has been real restless lately
- When and where will it all end?? Only God knows and He will see us through
this somehow. It is now 7:13 AM. I'll stay up and try to get Claude up
in a few minutes.
10-23-96
I started Claude back on Haldol last night. He slept through the night
except to go to the bathroom.
10-29-96
I changed the dead bolts on the front door and the kitchen door to double
key locks. After the panic attack I went through a week ago it was time
to do something drastic. Now he can't get out unless he learns to open
the glass doors in the family room. He doesn't know how to open them now.
11-7-96
We went to Hazel's in Sarasota on the 5th. That night he slept OK and he
seemed to enjoy watching the boats and the traffic on the bridge across
the bay but the next night was a different story! He wanted to "go
to work"..."He was needed!"..."There were wires down
and he needed to be out there with his crew!" For once someone besides
me realized how he was. Hazel could not sleep and she thought several times
that she should come in and help but I finally got him back to bed and
he went to sleep.
11-9-96
We came back home on Saturday. Claude was pretty good all the time we were
at Hazel's except that one night as I wrote above.
11-11-96
Last night was a nightmare again. He was up and dressed and he insisted
that he was going to work. I could not get him back to bed. About 3:00
AM I finally realized that he could not get out, so I went to bed and tried
to sleep. No luck!! As soon as I closed my eyes he was there shining his
flashlight in my face. He finally wore himself out and went to bed, clothes
and all. He slept late today and so did I.
11-12-96
I finally talked to my doctor about the problem and she told me to increase
his Haldol to 1mg instead of .5 mg. I did this and now as of : 11-21-96
he has been sleeping better. At least no more nightmares as yet. I pray
that it continues. But I never know when one of his attacks will come on.
11-23-96
Last Thursday night (11-21-96) and tonight Claude just bombarded me with
questions so many that I could not get one answered before another one
came. Such as "When are we going back to our other house?" We
own this one. "How much did we pay for it? $73,000. "How many
rooms does it have". Seven. Where did we get the money to pay for
it? We sold the last home we had in Panasoffkee. "When is the man
going to move out?" He moved over eight years ago. "How much
rent do we pay?" None, we own it. "When the man moves out will
he take his big clock and the horns?" No, he is already moved, and
everything here is ours. "Where does that door there go to?"
Outside to the screen room. On and On it went, the same questions over
and over and I gave the same answers. He can't remember for 5 minutes.
What I tell him. I love him so much. It breaks my heart to see him like
this. He doesn't realize what is happening to him. He has gone to bed now
(10:30 PM) and I hope he sleeps well.
11-28-96
Thanksgiving night - Another awful trying time for me. he wasn't going
to work this time, he was asking about where his truck was. When I told
him we had sold it, he became very angry and started ranting and raving
at me. He said he wished he had never seen me. You can't believe how angry
he was unless you could see it for yourself. Hazel and Larry were here
and they were very surprised. He never usually acts up around other people
- but he did tonight and his anger always follows his questions about his
truck. I wish I had never sold it - it is such a bone of contention everytime
he remembers to ask about it, which is almost everyday.
Hazel and Larry left and Claude went to bed having now forgotten all about
his anger! Wonder where it will all end?
12-5-96
Written by Carol Hart on December 4, 1996
Ken and I took care of Dad while Mom had surgery. We let Dad sleep until
we had word from Mom's doctor that all was well and she could come home
in one hour. We, thanked God all went so well for her. Joan D. went to
bring Mom home while Ken got Dad dressed, shaved and ready for the day.
I had lunch ready at noon, but Dad would not eat until mom got home at
2:40 PM. From the time Ken got Dad up he asked and talked about Mom. Quote:
He hopes she would be OK and her surgery was going OK. We became aware
that Dad was very concerned about her and knew why she was having surgery.
For the next 2 1/2 hours he never talked or asked any questions except
about Mom. We kept reassuring him that her surgery was over and she was
doing well and would be home soon. When Ken said, "They are here"
Dad jumped up and headed for the door. You could see he was relieved she
was home. The love in his eyes for his wife was overwhelming.
Ken and I have been here since December 2nd and we realize Dad at times
knew us, but much of the time he did not. When Dad talked to us about Mom,
at times he referred to her a Margaret because he did not know who we were.
When he knew who we were he would refer to her as Mom. He has called us
and knew Kenneth and me by name only one time since we arrived. He seems
to remember our dog and he looks for the doggy when Teddy isn't in sight.
That in itself is amazing.
There have been times Dad thinks he and Mom are at our house like today,
he told Ken he had to wait for Margaret to put him out a clean pair of
pants from the suitcase before he could get dressed. He asked me if I liked
this house better than the old house. I answered yes again. Mom later told
us he asked this question lots of times. I had thought at the time, he
maybe talking of his houses or may think he was at our house. Later this
afternoon, he came in the kitchen for a cup of coffee. He was opening and
closing cabinet doors. When I asked him what he was looking for he said
that he wanted milk for his coffee. Bless his heart he couldn't find the
refrigerator. So far, he has been good and seems to talk, laugh and enjoy
himself with Ken. Mom told us last night she felt that he needed to stay
awake and Ken was helping him to do so.
12-7-96
Saturday night
Dad thought he was at a hospital. He was sitting on the sofa and he said
to Mom. "Wasn't it nice that we were fortunate enough to come here
and Kenneth was here too." Dad is very taken with our dog! At times
he even refers to Teddy as his dog. Ken and I hope Dad doesn't miss having
our doggy around.
We had a very enlightening visit.
12-10-96
Last night Claude went to bed about 10:00 PM but at 1:00 AM I was awakened
by hearing him up - he had gotten up, folded all his covers up and had
almost all the lights in the house on. Ken and Carol were in bed but awakened
to hear me trying to get Claude back to bed. After are hour or so I was
able to get him to go back to bed. I got him up at 8:30 AM to tell Ken
and Carol good-bye. He has slept all day, almost, in a chair in the living
room. He went to bed tonight about 8:00 PM - I surely do hope he sleeps
tonight.
12-17-96
Last night was another nightmare for me - brought on by Claude asking about
that darn truck of his that I sold. He became angry and his eyes looked
as though he hated me. I was upset myself, having found out that I have
to have a series of radiation treatments. The first thing I knew we were
both crying and it was very hard to stop. With his short term memory he
was able to forget about the truck in a little while but it was several
hours before I could calm down.