Re: hello Margaret

[Guest guest]

Margaret:

The story of your Dad mirrors my Mother. Same age, similar personality,

similar circumstances just prior to diagnosis. We also had some indications of

Ahlzeimers and/or Parkinsons for a couple of years but then she went off the

" deep end " last January. She tried to leave her Seniors Independant Living

facility in the middle of the night, in her nightgown and slippers. When

security stopped her she went berserk! They managed to get her back to her

apartment but she fought them all the way. We took her to the hospital the next

day where she continued to kick and scream. As with your Dad they gave my Mum

Haldol and several times put her in restraints because she was biting and

screaming at the nurses and orderlies. On one occaision, she managed to whisper

to me that the nurses were killing babies in the corner of her room. After a

month in the hospital, we managed to get Mum calmed down and her medications

adjusted. We took Mum back to her Seniors residence but had her moved

to the Memory Floor. As with your Dad, some of the time Mum is so much more

lucid than the other residents, most of which are suffering from AD. She is

also more mobile. Except for her leaning and shuffling she usually gets from A

to B on her own steam. We did get her a walker but more to keep her from

walking into things (she bruises easliy).

Like your Dad my Mum wins all the Trivia contests and finds some of the

activities that the others participate in are " mindless " . She was always more

of a games player that an " arts & crafts " sort of person.

Because Mum still needs more activity and mind stimulation than the Care floor

she requires (for her other issues, sleeplessness, incontinence, flight risk) we

make an effort to insure that when she is visited (mostly by myself and my

sisters) we do something with her rather than just sit with her. My younger

sister takes Mum to aquafit classes, I usually take her out to lunch or on one

of the field trips that is offered to the residents in the rest of her building,

my other sister takes her to church. We also have a hired companion who takes

her out a couple of times a week to concerts or similar.

Mum still claims she is bored some of the time and she is still anxious all of

the time (especially about money). We are finding as we near the 1st

anniversary of her diagnosis that she is slowing down. More frequently getting

her to stand up is a chore, having her eat in a restaurant is interesting (she

seems to have forgotten to use utensils). We will continue to try to keep her

busy for as long as she is able.

You might try some of this with your Dad

By the way - where are you located?

In Rural Ontario, Canada

(long distance cg to mother Margaret, age 75 diag Feb 2005)

margaret ackerley wrote:

Hello. I am new to this group, but am glad to have found you. I have

read all the recent posts and many archived ones with great interest, hoping to

find someone with an experience like ours. Our dad (74) was just diagnosed with

this horrible illness by a gerontologist who says she is fairly confident in the

diagnosis. What I've read seems consistent with what we've experienced. We

have a lot to learn and I would value any thoughts about our experience.

My dad has suffered for decades from sleep apnea, so often napped during the

day, and even as a young man did not have a great memory for names etc, so we

may well have missed many early signs. The earliest thing I can point to is

June 2004 when he was upset and started an argument over a political matter --

not at all his style and just totally out of keeping with his kind, " walk

lightly on the earth " personality. We also noticed he was forgetting how to do

certain things. By Dec 2004, he was having trouble playing chess -- remembering

the moves the pieces make -- which was disturbing as he is a master-level

player. In June 2005 we all noticed that he was hunching over quite a bit and

his walk had a shuffle to it, though he could still get around and we didn't see

any shaking or other parkinson-like symptoms. Then at the end of the month he

fell while walking down a marble staircase and injured his shoulder, which

required months of physical therapy, but which he handled well

and seemed to have recovered from. One marked change in his personality,

though, is that he was beset by anxiety -- worried about money, worried about

safety etc. This was really out of keeping with the person he's been all his

life.

Then in early October, my mother and dad were on a trip in Canada, and my

father awoke in an absolute panic, insisting the building was on fire and trying

to wake other guests. There was no calming him down or convincing him they were

safe. He wanted to use the bathroom but when he opened the door and saw his

reflection in the mirror, he was convinced someone else was in there and was

even more intent on leaving the hotel. They came home from the trip the next

morning, and were plunged into a living hell -- hallucinations (seeing people,

animals, babies in the house); persecutory delusions (certain there were

assasins out to get him, people taping his life etc.); and very little sleep

most nights. He would fall asleep but then wake to go to the bathroom (which he

needed to do with great frequency) and be completely agitated and upset --

either we were on a boat that was sinking, or someone was breaking in or trying

to kill him etc. These episodes were punctuated by periods of

near normalcy -- he knew everyone, was rational etc. Most of the scary stuff

was at night.

We had several appointments with a neurologist and began a dizzying array of

medications: risperdol (no help with delusions, caused serious physical side

effects); haldol (same); atavan; seroquel; trazodone; arricept. I'm sure I am

leaving some out. Still had the night episodes and daytime hallucinations and

still not sleeping more than 2-3 hours/night. When he was awake at night, he

walked all over the house and often seemed to be in a trance of sorts -- not

really aware of whoever was up with him. He would move things around, try to

turn furniture over, and otherwise be in constant motion. He often would unlock

doors and try go outside.

Things reached a head early this month when he thought my mother was an

intruder and he got aggressive, though did not hurt her. She was scared for her

safety and wanted help trying to find the right meds, so the next day she took

him to the hospital. He showered and dressed himself, went there willingly, but

became upset when they talked about admitting him, at which point they pinned

him down, injected 4 mg Haldol and put him in restraints. After that, we had a

family member there every minute next to him. He was really out of it from the

haldol: could barely walk, only speak a few words in a whisper, not eating or

drinking, incontinent at times. They put him on Abilify but there wasn't much

else happening therapeutically, so we took him home after 3 days. He was in bad

shape at first, but slowly got better, though he started doing things like

taking off his outer clothing (says it bothered him), " freezing " like a statue,

and crawling on the floor, and sleeping at night

remained a big problem, though there were no more signs of aggression. As

before, these periods were offset by times when he was so lucid and clear we

felt like he was miraculously " back " to himself -- generally following those few

precious nights when he would be able to sleep. Whether lucid or confused, he is

anxious most of the time.

He's now in an assisted living, with 24 hour a day help. We know this may not

last as a solution, but it is helpful now, especially because he can walk up and

down the hall at night which he has such great need to do. He seems ok there,

though most everyone else has Alzheimers, which is very different. When he is

lucid, it is lonely. We'd all rather have him with us -- but the being up all

night every night just wore everyone out, along with the days that we couldn't

reach him. We are trying to see the way ahead and wonder what is next. The

gerontologist says our course has been very fast, even for a fast moving disease

like LBD. We have a new prescription for remerol, which we will try for the

insomnia. Other than that, we are praying amidst the tears -- so sad for all he

has lost, for the person he was and will no longer be, though we are still

blessed by glimmers of it from time to time. He has mentioned several times

that he thinks his time left is short, though he

does not wish to die. We want to try to make whatever time he has left as

pleasant as it can be. Today he won a trivia contest at the assisted living

place, and then asked an aide if she could help him because, he told her, he

knows he is losing his mind.

I'd love to hear any reactions to this, though I know if you are on this list

you have your own hands full trying to deal with this illness. Thanks for any

thoughts you care to send.

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