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Old 11-21-2006, 03:43 PM   #1
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Stuck at Stage 5

I've not spent much time researching the stages of this disease and I realized after reading some posts tonight that it's because my Mom seems to have been in stage 5 for as long as I can remember. She is/was an excellent masker. I think stages 2-4 got past most people who were not around her. But they did go fast. She'd moved from suspicion to Stage 5 in about 2 years. I can't find the calculator mentioned. I'm curious but I guess it doesn't really matter. But thinking it over, here's her history.

In 1998 I knew something was wrong. It was very minor stuff. But I knew.
I think of this timeframe as my time of suspicion.

In 2001 she had open heart surgery and with the post op reaction, the heart surgeon suggested she was developing a problem. They had to put a 24 hour watch on her for 4 days because she was so out of her head. She repeated this the next year when she had a more minor surgery. This was the year I was certain but it tended to only show under stress.

By 2002 it was obvious to some people. (Folks who'd called me a horrible person the year before for suggesting she was not well were calling me to ask me what I was doing about it.)

By 2003 she was very dedependent on others. She'd lost the ability to count out her pills, doing non-logical things. And this is where she is stuck. It's been 4 years (03, 04, 05 and now 06) with her pretty much at the same point. Actually since going into assisted living where they have a controlled regiment and she is being forced (VERY much against her un-social will) to be social, she is doing better than she was a year ago. She still firmly believes there's nothing wrong with her. She hallucinates seeing people who don't exist, gets time very confused, creates her own realities, and just doesn't "get" most things. Yet, this is only sometimes. I would have never imagined she'd stay in this stage so long.

I pray that when it does move on, it picks up speed. But I also know we have no choice over.

 
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Old 11-21-2006, 04:39 PM   #2
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Re: Stuck at Stage 5

I'm sorry onemorething, if you type this 'Predicting Time to Nursing Home Care and Death in Individuals with Alzheimer's' into a search engine you should have no trouble finding it. You do need the patient's mmse results.

My SIL is also a neverending stage 5 - at least sometimes that's how it seems. I sometimes think I'll be pushing up daisies well before her disease progresses further.

 
Old 11-21-2006, 04:57 PM   #3
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Re: Stuck at Stage 5

Thanks.

My Mom is 80. It says:

25% of patients with a similar clinical profile die within 47.5 months, 50% within 73.4 months, and 75% within 80.3 months

So if I understand this, it's saying that 25% of all 80 year olds with AZ in her circumstance die within 47 months.

That's 4 years.

I wonder what percent of healthy 80 year olds die within 4 years. I'd be very surprised if it's much off that mark.

Oh well, it's just something to check in the search for answers.

What I really need to do is go check MY BMI. Just don't want to think about that either!

 
Old 11-21-2006, 06:12 PM   #4
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Re: Stuck at Stage 5

One more thing onemorething - we have discussed here before and I have read reports that anesthetics for surgery can accelerate/excaserbate the disease. So it could be in your mother's case she was fast-forwarded through stages 3 and 4 and is now continuing at the normal rate of decline? Sorry it's not a cheery thought, but it might explain what you are observing?

Last edited by georgie04; 11-21-2006 at 06:13 PM.

 
Old 11-21-2006, 06:29 PM   #5
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Re: Stuck at Stage 5

Georgie:

That makes sense.

I was told about this but that the impact was temporary. That's the way the heart surgeon explained it saying that the week after her surgery was a window of what it would be like in a few years.(Which thrills you to hear that having the open heart she just had has probably just bought her years of misery.) She bounced back pretty well after that week, and I was under the impression it was a temporary hit. But with two operations requiring general in those two years, it does seen logical this could be what happened.

 
Old 11-21-2006, 08:51 PM   #6
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Re: Stuck at Stage 5

Wrestling with "to operate or not to operate" is personally the hardest thing we have dealt with with my SIL. (No wait, there are worse things, but this was difficult because we were making quality of life decisions for her, and that is a huge responsibility - to be certain that you get it absolutely right).

At the stage she was at then, we were faced with the choice to risk the general anesthetic having an accelerating affect on her AD - which would have tipped her over the edge of being able to stay out of a nursing home (her number one priority). The other side of the coin was to risk her, in later years, suffering pain and infection (she has an autoimmune disease which makes infections extra undesirable) and not being able to communicate her pain to anyone, and thereby not having anything done to alleviate it.

Prolonging life with unnecessary medical intervention in an AD patient is one issue, but we came to the conclusion that there is a circumstance of avoiding future pain and infection in someone who may become unable to express it, or ineligible to be treated for it, and that is a different issue. That may not make sense to some people but it does to me.

We were very fortunate in that my SIL's condition wasn't anything as dire as your mother's, and eventually we found a way to have a long series of procedures under local anesthetic over two years to achieve the right outcome.

I am so glad we went ahead with it, because SIL has now reached the stage where she is unable to correctly express/understand pain, or treatment. I just can't imagine anything much worse than being trapped in a body that is communicating pain, with a mind that is unable to process that correctly enough to communicate it to the people who can help.

 
Old 11-21-2006, 10:07 PM   #7
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Re: Stuck at Stage 5

Hi All,

I just have to butt in. My dad just had a pacemaker put in. He spent 1 nite in the hospital and my sister stayed with him and I was over at their house just about every day for a week. He went way down, or up a level in Stages of Alzheimers. We knew that he might. He stayed really bad for about 1 week - mostly the cause of the knock out meds and pain meds given to him in the hospital. We did not want any for him at home.

He has come back to where he was, mostly. His handwriting is a little worse and the Occupational Therapist (Home Care) gave him a MMSE yesterday. I listened - and my mother and I both wanted to prompt him. I think he did a little worse on that. But he has Parkinsons too, and it is hard to tell where one illness ends and the other begins.

For example: the guy would hold up his finger and say touch my finger with your finger and then to your nose. Well, he tried and tried to explain it to my dad and even showed him how to do it. But, he eventually had to guide his hand and show him how...

It is getting harder for my mom to be his main care giver - dad, is almost 80 and mom is 78. And they both live at home together, alone. I am hoping and trying to get everything set up for 3 ea., 1/2 days, for a caregiver to come to their home, so my mom can get out. She says no for now. It is free - long term care insurance, for 1 year. But, I really think that they will both be in a home, that both of them can live in and my mom can still drive, til she gets her license or car taken away.

Good luck to yall. I will have to check out on the net, about how to possibly figure out, when the next step will be

Thanks for the info, and for reading this long post.

Love, Wannabe

 
Old 11-21-2006, 10:40 PM   #8
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Re: Stuck at Stage 5

That Alzheimer's calculator gives not only a predictor of death but also a predictor of when you can expect a nursing home to be necessary.

I put my grandmother's and aunty's statistics in to see how accurate it is (they are both deceased with AD - one at 95 , the other at 87) - it was pretty on target (except they each went a couple of months/years more - we have some tough genes in there it seems ).

Thanks for that info that your father has basically bounced back - there is nothing on the web that either confirms or denies this. There was no information that we felt we could trust - some say definitely damage done, others deny it.

 
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