Alzheimer's Not Like I Thought It Would Be - Alzheimer's Disease & Dementia Message Board

SciTeach · 01-12-2004, 01:07 PM

When Mom was diagnosed 4 yrs ago, I did a lot of reading on the symptom's in
the various stages (as we all did, I'm sure). I know that everyone says each case is individual and no two AD patients are alike, but I wasn't expecting such varying symptoms as Mom has shown.

We think Mom has had AD much longer than the 4 yrs since diagnosis. From reading her journals, it seems to me I noticed changes as long ago as 1996. So she is in the late middle stages. Some of the symptoms I had not anticipated include:
seizures
no short term OR long term memory (strictly present moment)
no wandering

When she tries to talk it really seems like she has a thought in her head and before she says two words it's gone. I expected nonsense sentences.

For a LONG time, she was aware that she "didn't know" and it frustrated her greatly. Her 1st neurologist told her 4 yrs ago that soon she'd be in her own world and not be aware that she didn't know. That hasn't happened. She is STILL aware she'd forgetting, but it is not upsetting her as much.

Is anyone else finding this to be true. I know you can't fortell the future, but for Mom to be so off base with symptoms is disconcerting. I'd like to be as prepared as possible for what's to come, now I feel like I have NO IDEA of what to expect next!!!!

Comments welcomed.

SciTeach

Willow3 · 01-12-2004, 04:21 PM

SciTeach, I have a post here concerning my mother and hallucinations and confusion, so will not detail that here..You might like to read that.

One of the things we all need to realize is that in many respects our love ones are being protected from what is happening to them....the "pain" becomes ours, not theirs and we should find some solace in that. I like you fear what lies "around the corner", but I am leaning to live for today and deal with tomorrow when that time comes.....All I have done is the inquiry as to what is the prudent thing to do :"IF"

As I think about mother I am remined of the man who went to visit his wife every day for five years and she didn't even know him. When asked why he would do this when she didn't even know him, he commented, "Yes, my dear, but I still know who she is." That hit home with me....and I am finding that these times with my mother, in certain respects, are some of the best we have ever had....they are special for me.

Although I attend caregivers' meetings, I am drawing great comfort from the sharing done here on the boards.

SciTeach · 01-13-2004, 09:56 AM

Thanks for your reply, Willow.

I totally agree about not looking forward. The "intown" siblings have figured out that you plan for now, now next month. The "out-of-town" sibs haven't gotten there yet. Before T'giving and Christmas they would ask what the plans were. We told them that we had none, and to come on down when they wanted.

I am tentatively planning a trip to Europe this June (my first) with the full knowlegde that it may not happen. I am not even thinking too much about it. If things stay calm I'll go, but who knows where we'll be in 5 months.

I guess the point of my post was that no matter what the experts say, there is no "typical" AD patient. The symptoms are as varied as the people themselves.

But it IS nice to be able to unload to someone once in a while. :-)

Sciteach

Willow3 · 01-14-2004, 07:05 AM

SciTeach, you go ahead with your plans......Mother was in an assisted living environment this past spring...at 93 anything can happen, but I went ahead with a three week trip across the US with some college friend..we drove and had a great time. In 1988, two of us took sabbaticals and went to Europe..23 days..wonderful time..whirlwind trip but saw the highlights.

This morning when I went into Mother's room, I found her lying on the flor. She had slipped to the floor when getting out of bed...I put the top mattress on the floor beside her and was able to get her on there, then I brooought her wheelchair in front of her and was able to lift her up.....the lesson here is that we do find our strength when we most need it.....

Quote: The human spirit is stronger than anything that can happen to it."

SciTeach · 01-16-2004, 07:27 AM

Thanks, Willow. And you are so right about finding the strength. I'm the "big sister" and I know that my "in town" sister relies on me to be strong. I never realized it until she told me she didn't know how I could remain so seemingly calm and level headed ( that was last spring when Mom AND Dad we both in the hospital in two different counties ). I just knew that things had to get done and if I fell apart it wouldn't happen.

I don't worry that something will happen before I leave for Europe, but I do hope that those 10 days are event free, I don't want my sibs (esp. "in town" sis) to have to go through it alone. But I really want this trip. Never had an interest in Europe 'til this trip came up.

Hope your Mom's doing well now. And thanks for your support!

SciTeach