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  • unusual situation with Alzheimer's... I need help

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    Old 06-17-2005, 08:09 AM   #1
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    unusual situation with Alzheimer's... I need help

    I'm new to the message board and even though I didn't read every post I'm almost sure there's no situation like mine and that is the problem... I am having a very hard time finding any articles or materials concerning my situation. My mother lived alone and in another state until the fall of last year. She fell and laid on the floor for quite a long time before she was found. During that time she had a heart attack and possibly a small stroke which has left her bedridden. Since then I have brought her to my state and she is in a nursing home close to me where I visit her every day. She has been diagnosed with Alzheimer's and has been on Aricept ever since. My problem is that every article I see on Alzheimer's talks about the mobility of the person and how you can tell by the shuffling gait and one of the problems is their getting lost and wandering and being disoriented in new places and getting lost in stores and leaving the stove on and things like that. Since my mother is basically bedridden I don't have any way of knowing if any of those things would be happening at this stage of her disease. I feel like the list of the stages don't apply in her case since her world is basically limited to her room and she doesn't have to deal with check writing, cooking, keeping herself clean, driving, etc. I'm also confused because her memory seems to be fairly good. I don't know if it's because of the Aricept or because she's having atypical Alzheimer's symptoms. The main symptoms with her seem to be that she uses the wrong word quite often in conversation. She can't seem to follow a story on TV... sometimes not even a commercial. She makes up a completely different story than the one being portrayed on TV. She gets worse at night... the "sundowning" effect. Sometimes she gets in what we call routines where everything has to be just so... nothing is ever quite right. She has to be in exactly the middle of the bed, the left and right side of the pajama top have to match perfectly, the sleeves have to hit the wrists in the same exact spot, her water bottle has to be in the "right" spot which we can't seem to find until we've moved it around 100 times and so on... I think you all get the picture. She also used to have hallucinations which have basically stopped since she was put on Seroquel. She has no problem solving skills. She might say she's very hot and she's covered up with 2 blankets and can't figure out that that's why she's hot. She has to be told to take the blankets off. That's just an example... there's many other situations like that. So my question is... does anybody have any experience with an Alzherimer's patient that has been bedridden since the early stages and can't really follow the progression of the disease by the usual stages we're all aware of? I would appreciate so much any help anybody can give me with this. I feel so alone. Thank you!

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    Old 06-17-2005, 09:54 AM   #2
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    Re: unusual situation with Alzheimer's... I need help

    Hi Kalico -

    Welcome! So sorry that you mother is in such a condition and that you have to deal with it. It is difficult as I'm well aware. It is a help that at least your mother is geographically close to you.

    At the top of this thread is very helpful information about the 7 stages of Alzheimers. If you haven't read it yet, I think you will find it most informative. The list addresses cognitive functions rather than just the physical and task-oriented problems that Alzheimer's causes those who are mobile. Hope this helps you understand you mother's behaviors and limitations. It is so sad to see a loved one acting so completely different from the person you've known and loved your whole life. There's a poem that calls the new and unwelcome personality The Imposter.

    My mother had Alzheimer's and was mobile through much of the decline. 18 months before her death, she forgot how to walk, so spent the last of her life in a wheelchair. She didn't mind at all. Her symptoms became apparent when she was 85. I am an only child and was living across the country at that time. Before circumstances allowed my family to move to be near Mom, she had to be moved to an assisted living facility, then 8 months later (just after we moved into our new house near her) had to be moved to a locked unit. She didn't notice. The unimaginable actually happened - she did forget me. I was sure that could never happen. Oh, well! Mom was 88 when she died.

    Glad you found us! When time permits, do read back over the other posts. There is a lot of good information, good ideas, coping strategies, and shared frustrations vented here. You are most certainly not alone on this unwelcome path.

    Wishing you well - Barbara

    Last edited by BarbaraH; 06-17-2005 at 09:56 AM.

    Old 06-17-2005, 04:29 PM   #3
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    Re: unusual situation with Alzheimer's... I need help

    Hi Kalico

    Please note that true Alzheimer patient's do not neccessarily go through the stages in sequence, nor do they experience all the pit- falls of this disease. thus the so called stages are those things we can antisipate.
    My husband lost his balance, making a Gerrichair necessary, but he never shuffled and walked until the end. He never quit eating , some do. His body quit processing the food and he lost weight.After 50 years of marriage he but rarely remembered who I was.
    All your mothers problems are those associated with Alzheimers. The brain has lost much of it's ability to function correctly. She is slowly losing who she once was. I suspect it is much sadder for you than it is for her since she seldom remembers the way things once were.
    Mary Ann

    Old 06-17-2005, 05:20 PM   #4
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    Re: unusual situation with Alzheimer's... I need help

    Hi Kalico! In my dad's case, his symptoms can vary from day to day and even hour to hour sometimes. And his symptoms criss cross between the stages.

    For instance, he has many symptoms in catgory 5 but doesn't have some of the symptoms in category 4.

    For that reason, in my opinion, it's not so important to know exactly where he is in this disease. It's sometimes hard to tell from day to day what's worse, what's the same and even sometimes what's temporarily improved. I have seen short lived improvements from time to time. In those "improvements", dad has sometimes exibited "pickiness". That's when he tends to get moody too. Nothing's good enough. He sometimes gets very angry and hostile when he's in this "stage". That is a part of alzheimer's that some folks go through.

    You'll know when things are getting worse. And they won't always coincide with the 7 stages. The 7 stages are a great guidline of what to expect. But they're not set in stone.

    Short term memory usually goes before long term memory. Not remembering story lines on a show she just watched is a good indicator that she is having problems with short term memory.

    Aricept will not cause anyone's symptoms to get better. It is only used to slow the progression which sometimes it does and sometimes it doesn't.

    I hope this helps and that I've made sense.

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    Old 06-17-2005, 08:48 PM   #5
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    Re: unusual situation with Alzheimer's... I need help

    Hi Kalico!!

    I had a 'calico cat' many years ago ... surprisingly called ... "Calico" .. no awards for us for originality (another cat was called .. famously .. Puss puss"). Sorry, bringing up childhood memories here!! LOL

    The 7 stages of Alzheimers we have as a sticky at the front of this board is merely a guide. My MIL has symptoms ranging from ALL the issues, but I would say she regularly bounces between stages 5 and 6 yet sometimes shows signs of 7, then she'll regress back to a 4 or 5. It's only a guideline, every single person is an individual. There are many common things throughout however, and I'm sure, with further reading and your own research, you will discover this.

    I have a similar problem with my MIL as you do with your Mum. My MIL has had a speech problem longer than she's had dementia, but because of her lack of words, people have assumed she's worse than what she really is. She's INSTANTLY written off as fully demented!! Other people (people, not professionals) believe that the dementia isn't as bad as first thought, because she can't tell you anything different. Other people see both issues together and can see between the lines and figure it out, but I guess, NOBODY will really know because of the lack of words!!! A mini mental can't be done, because she might actually KNOW the Prime MInisters Name, but she can't SAY it .. she knows the TIME visually, but can't SAY it but NOW she can't write it either ... ah ha !! THAT IS part of dementia!!

    It's hard, but you need to find a sympathetic professional who is willing to look past the obvious and delve a little harder and not assume your Mum is to be totally written off ...

    I sound like a broken record when I say "it's a hard road to travel" but it's true .. it's hard on everybody .. the person with the problem, the loved ones who help, the ones who don't want to know and everybody that comes into contact with them ....

    Goodluck, welcome and feel free to vent .. we all do that bit quite well ! LOL


    Old 06-18-2005, 10:32 AM   #6
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    Re: unusual situation with Alzheimer's... I need help

    thanks for your responses... it's reinforced my belief that there's no such thing as a "typical" Alzheimer's sufferer. My aunt, my mother's sister, also has Alzheimer's but she follows the 7 stages almost to the letter. And yet my mother doesn't... her memory is fairly good, short and long term, but yet she has characteristics of stages 3 and 4. I sometimes wish her memory wouldn't be as good and she would forget things. I think it'd be more merciful than her being able to remember what she's lost as far as her home, her friends, moving to another state, being able to walk, etc. I think it makes it much harder on her which makes it much harder on me since it gives her a lot of material to verbally abuse me with... I was the devil that took her away from all that and brought her to this hellhole where she's at, according to her. I'll definitely be a frequent visit to this forum. It helps to know that I'm not alone and maybe I can even help someone too along the way.

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