Just Wondering - Alzheimer's Disease & Dementia Message Board

mamaduck4 · 09-12-2006, 10:36 AM

Good morning all,

I keep reading on these posts where people say their loved one is on level 4 or level 6, etc. How does one know?? When you read the levels some apply to your loved one now but not all. I keep looking at the levels wondering what level my husband is in. Does it really tell you how long you will still have him around. The obits always say passed away from complications from Alzheimer's. What are the complications and at what level do you have to be afraid of?

I hope these aren't stupid questions.....it is just so confusing. Another thing I have been wondering about is why do some people hang on so long and others are taken away so soon. Does the damage to the brain start in different places so that is the deciding factor?

With my husband his speech was the first to go. This has been most frustrating to him as he cannot even get two words out that mean something.
It's playing twenty questions for all of us all day long. Of course he gets very irritated with all of us because we don't have a clue what he is talking about.

Thanks for listening and any feed back would be appreciated greatly.
Jan

Martha H · 09-12-2006, 11:56 AM

Dear Jan,

I understand your frustration. The 7 stages are loose and fluid. My Mom had some of the symptoms in 3 and some in 4. It seems she remained at that level for 2 or 3 years. Then she varied between the symptoms in 5 and on 6. By now it might be 6 to 7; I'll know more after my visit Sept 27 to Oct 4.

How long a person stays at each level is not certain. Some seem to progress very fast, others so slowly that nothing much changes in a whole year.

I wish I could be more specific. I have the impression that younger people progress faster, but that too is not always the case.

When or if death will occur from AD is also unclear. Mom is living on and on with her almost final stage of AD, while others pass on sooner. I don't know what is meant by complications of AD. I never heard that statement before. It causes problems with eating and swallowing - maybe that is what was meant.

It is a sad and devastating disease, and yet the patient feels no pain and as he or she moves along to further stages, he forgets that he is impaired . Mom was sad and depressed for a year when she became aware that SHE was 'losing it,' not everyone around her. Now she doesn't know that she is any more handicapped than anyone else, indeed she is one of the more alert people on her floor at the nursing home - she can still sing songs, talk, and laugh, and eat by herself.

Sometimes an AD patient will pass away before the disease comes to its final stage by getting something else, like a stroke or a heart attack. But I don't think that would be considered a complication of AD.

I am sorry you are in the midst of this awful problem and I hope your loved one can find all the help and care he needs as time goes by. Don't forget to be nice to yourself too - you need an occasional break, a day off, a vacation, just like anyone else does.

love,

Martha

Choquis · 09-12-2006, 04:15 PM

Dear Jan,
As a former teacher....No question is stupid!!!

My mother lost her speech, whereas my FIL talks non-stop. Research has indicated that one side of the brain is speech and the other is orientation. My mother couldn't express herself, but never got lost! She would walk to my grandma's house every day....going a different way each time. At first her speech was only affected if someone asked her a question... she would go blank!

Thru the many years and many friends and relatives that have had this horrid disease I have noticed that those who talk and talk and talk and talk and talk etc. etc.... and really can fool people into thinking they are okay...are the same people who get lost, can't read or sypher or follow any type of directions.

Those who can't talk or have limited speech, still can read (without retention), sypher (but not know consequences) and do not get lost!

Go figure... just like all diseases... each case is different. Each progresses at a different rate that is what is so frustrating!!! One of the first support groups I attended, the facilitator said "Say every thing you want to say to your mother now! Tell them you love them, it will give them comfort as they are very stressed at the beginning of AD."

I think that is one thing we forget as caregivers... the patient hates it too! They feel like they are going crazy or letting you down... I did a lot of self talk to my mom... for instance, "Does it seem like you just woke up and can't get your bearings?" "Yes...that's exactly how it feels...!" (While we were riding in a car, me driving and her feeling frightened) "Does it feel like things are coming at you?" "Yes, it looks like we are going to hit the curb (or the tree or whatever).

I found it really helped when you notice agitation to ask ... not "What's wrong?" as they won't know, but to ask about the situation... "Does it seem like......describe what you think they are agitated about... They can't find the words, but if you say them, they will respond.

This is a terrible disease... take care of yourself...as you can't take care of your loved one if you're incapacitated.

This board is a great way to get support and information.

God Bless and Prayers,
Choquis

LuvMyLilDoggie · 09-12-2006, 05:04 PM

You asked an interesting question so I did a little research. I found that there are several things that can be considered complications of alzheimers. Here they are:

Loss of ability to function or care for self
Complications caused by immobility
Bedsores
Pneumonia due in part to inability to chew/digest food properly
Broken bones
Loss of ability to move joints because of loss of muscle function
Loss of ability to interact
Increased incidence of infections anywhere in the body
Failure of body systems
Reduced life span
Abuse by an over-stressed caregiver
Side effects of medications

My grandfather actually died of heart problems but on his death certificate, it says myocardial infarction (heart attack) and complications from alzheimers disease. His complication was his inability to understand that something was wrong with him when he was in the midst of a heart attack. This explains why he had several heart attacks in the past that no one even knew about. Grandpa could talk to us but when it came to discribe what he was feeling in his own body, he couldn't. My dad is like that now. My sister took him to the ER for severe pain in his jaw. When the nurse asked him where his pain was, he said it was in his stomach. And then he told the doctor he didn't have any pain.....

Love, Barb

Martha H · 09-12-2006, 06:35 PM

Very interesting about the disorientation vs speech.

My Mom's first symptom was loss of a sense of time, and later place. My first clue (which I missed) was when I flew to NY to visit her, years before I moved in with her, and she had forgotten I was coming. She always had the spare bed made up and food ready, etc. but this time she didn't even answer the doorbell to buzz me in.

As soon as I did manage to get into the building and into the apartment she covered up masterfuly (speech and flow of words excellent) at first saying 'but you came in so early!' (not so!) and then "I fell asleep and forgot the time" (but the bed etc would have been done early in the day.) After that I had my own keys for trips to NY.

Later she got lost going to familiar places. She probably fell and broke her hip as a result of being disoriented in the house where she had been living only 3 months, in the dark, having turned off the lights 'to save money.'

As to broken bones being a side effect of AD, that makes sense too - if she hadn't turned off the lights and hadn't miscalculated the number of steps, she would not have fallen, broken her hip, and wound up in the Hospital and NH.

Somehow I am glad she still has speech. It must be so much harder when the person can't explain what is bothering them. Mom still holds a phone conversation in which she pretends to know who I am but gets all the facts wrong; yet they would sound plausible to a person who barely knew her.

Her mathmematical abilities (ciphering) went a long time ago, it has been years since she could balance a check book or know how to keep a record of her bills paid - just threw everything into a drawer. When I closed up the house last year I went through 20 plus years of paperwork, unsorted. A nightmare. The most recent and important items were missing, since she began throwing everything out a few months before that move.

I still wish I had managed to get her into care a year or even 2 earlier, it would have saved me a lot of worry, fear, unpleasantness, and even poor health. I am sure some of my anger directed at my sister for not believing Mom had AD was a direct cause of stress. We get along better now but she has not come to see me - one state away - nor invted me to come there. I feel she blames me for leaving Mom, moving her to B's house, the fall, the fracture and the NH.

That is not impossible - I also blame myself to some extent. I do know that if Mom had been where she is now, there would not have been a staircase to fall down ...

Safe, warm, fed, medicated, entertained, dry, not smelly, not messy, not lost, not in danger, not making fires ... a NH is a good place. Why do so many still see it as a dumping ground

for perfectly normal, healthy, functioning old people with lazy, uncaring daughters? (sons of course are excused!)

Love,

Martha