I thought the further an AD patient goes along the less the are aware of what is happening. My mom definately has progressed in this disease, but she keeps asking me if she'll get better and wishes she could be normal. It's heartbreaking! Have any of you experienced this?

Joy, Each person progresses in a different way. My husband has never asked what is happening to him. But, he never was curious about his own health status.

we are glad came here to information.

My mother continues to have moments of sadness when she realizes she doesn't remember something that she should. And yes, it is heart-breaking.

You are not alone.

My dad is the same as Linda G2's dad. He NEVER asks what is going on with him. When told that he had several small strokes, his response was, "so be it." The same held true when he was told he has AD. How accepting is that for an 81-year-old man.

Yes, Joy, I find that Alzheimer patients are more aware than one might think. They need to be given constant reassurance. Positive vibes. --Jim

Joy57, So sorry for your feeling. I so relate to this. I also thought she would not know at a point but I believe that she is still in there and mother surfaces at the stangest moments. I live for those times and you never know when she will take my hand and really relate. The feeling are so hard but through love we will stand this disease. Together we will try to get through this. Please take heart and know we are here for you.
Sheryl

http://www.alzheimercambridge....tia%20Experience.pdf


Brought this back up for joy57

quote:

I thought the further an AD patient goes along the less the are aware of what is happening. My mom definately has progressed in this disease, but she keeps asking me if she'll get better and wishes she could be normal. It's heartbreaking! Have any of you experienced this?

Fascinating issue! I've been told by 3 doctors and a psychologist that I'm unusually self-aware for a Stage 4 guy. I've been told that about 1/2 of us lack self-awareness, in fact are neurologically incapable of self-awareness of our disease.

But there are times, oh my there are times when I'm not aware. Those are related to when my brain is fatigued, and I'm easily enraged. No awareness then, and very little if any memory of those times.

My mom would want to know if she was ill, and since she never wanted to be ill, I would ask her how she felt and if she said she felt fine I would tell her that she looked fine to me too. Other times I would suggest that she was "just forgetfull"

Three years ago a social worker told me that my father would eventually sail off into a more peaceful space - he'd be inside his hallucinations and not connected to outer reality. Hasn't happened. He's late stage 6 and his speech is getting incomprehensible, but he's still able to be distressed at his condition and talks often about how he's going ape, losing his mind, getting dumb, etc.

As others have said, every case is individual.

In addition to that - and this is an old saw of mine - I think the standard-issue description of Alzheimer's (it's a memory disorder in which people gradually forget) is inaccurate, simplistic, and often destructive. This isn't a condition in which people sail peacefully away in relatively intact form except for their memories. It's a massive disruption of congnition, with people losing capabilities seemingly at random (because the brain is big and it's hard to tell what will stay and what wil go) and retaining others in surprising fashion. It all makes for a lot more distress, both for the patient and for the caregivers. There can also be bright spots - often it's a good thing to retain certain capabilities - but overall it's profoundly confusing and often very bizarre. You have every reason to be confused and to react the way you do.

Hope this helps.


Best,
Alan

quote:

I think the standard-issue description of Alzheimer's (it's a memory disorder in which people gradually forget) is inaccurate, simplistic, and often destructive. This isn't a condition in which people sail peacefully away in relatively intact form except for their memories. It's a massive disruption of congnition, with people losing capabilities seemingly at random (because the brain is big and it's hard to tell what will stay and what wil go) and retaining others in surprising fashion. It all makes for a lot more distress, both for the patient and for the caregivers.

I totally agree. Memory disorder is just the tip of the iceberg and doesn't give any hint of the depth of cognitive collapse (or the psychiatric issues that so many experience).

My wife is in late stage #6 and no longer asks about her mental condition. She just seems to ignore her disability and I try to keep her happy as much as possible. If she starts getting antsy, I try to have her do something else which often means I take her for a ride.

But about 2 years ago she often asked about her illness. I tried to tell her that her memory was just getting worse and she would want to know if she would ever get better. It did make her cry to talk about it but it did not last for long.. She had a pacemaker installed about the same time and the nurses told her that "everything would be better. She ad been fixed, and ----" She assumed that that meant her memory and other mental conditions. It did get rid of some unpleasant seixure episodes that have been gone for this time. She no longer asks about her health. Whatever that means-----?

Thank you all for you responses. It just helps to hear what everyone has experienced. When the diagnosis was new, we were all upset every time she didn't remember something. Now, that is the least of our concerns. You're all so right, it is so much more than memory. Thank you again.

I've watched my Mom decline in so many ways over the years. Started off with memory issues, went to decreasing cognitive function, then went into the repeating and getting stuck, then into the constant movement phase that she's now in. Something has to be moving all the time she's awake, either slow walking/akin to wandering, rubbing hands on hands, hands on arms, hands on legs, a little chewing jaw motion, clenching and unclenching fingers usually on clothing. Lucky for me she's usually 'happy' and was only violent when on Namenda and Aricept, they're gone now!

When my dad first saw the neurologist, the neurologist did not mention AD in front of my dad. My dad knew there was something wrong with him. When we took my dad home, he was crying and all he said was, "it's sad." He called my uncle and told him he had Alzheimer's. Now, my dad says he thinks he's doing pretty good for 90 years old and that we all forget things.

My dad's neurologist told us she didn't see the need to distress my dad by saying he had AD, it was okay to say memory problems.

My dad has been pretty quiet about this, he doesn't bring up distress in not remembering, he seems to accept it as aging. Recently, in trying to have him accept help, I told him he is having problems rememberings things and that's why we needed additional help now. Usually, when trying to convince him of additional help, he will argue and say he doesn't need it. But this time, he was quiet and sat down and seemed interested in what I had to say about his memory. He said it happens when you get older, I said yes it does, he seemed relieved to know that I know that he is having problems. He tries and cover up as best he can and that can be so exhausting and upsetting to him, but maybe for now he understands maybe that I know and we're helping him with it and through it.

Sometimes, I'm amazed at what he does remember, it's the stuff that was always very important to him, like when he gets his retirement and social security checks, he's right on top of that. Or when something in the house needs to be repaired, he's relentless in reminding you about it until it's done. He doesn't remember what he had for lunch or dinner.

I figure positive messages are most helpful, so I downplay the whole thing and make sure the caregivers and visitors do too. So my LO (who's about stage 4 or 4.5) thinks of herself as having some memory loss, but that's it. Aricept is "the memory pill" and we tell her it's definitely helping. Actually, it is, but even if it were not -- I would still say that. Why not?

Thanks to Zoloft, therapy, and possibly massive doses of positive attention, she's getting a lot less depressed. Most days are really good days now. I know this could change any minute, but I can't see any advantage to communicating anything but positive messages.

There was a crisis when she'd been on Aricept about a month. She was responding so well to it that she became much clearer about her memory loss and confusion, and knew when she was hallucinating. She was terrified that she was losing her mind. We got an emergency appt. with Dr. Flacker (geriatric dr. who specializes in memory loss).

He was fabulous -- explained that she was depressed, that this was natural, and that she could get over it. He wrote out on a piece of paper for her, "Ms. [name kept private], there is absolutely no reason for you to believe that you will go crazy." She studied this paper over and over in the ensuing weeks, till she really believed it. (Meanwhile, the Zoloft was also kicking in, and of course I kept reinforcing that message.)

I keep telling her her memory is getting better, and actually, it is. If it gets worse, or she gets much more confused or loses more capabilities, I'll still tell her she's getting better or at least holding steady. If it's somehow obvious to her, I'll cross that bridge when we come to it.

In this stage, anyway, I can actually see some psychological benefit to some of the memory loss. It's focusing her mind in two places: the present moment (good for all of us) and her childhood. She's really dealing with her leftover feelings from her childhood, and I and her caregivers listen attentively and show her we understand and accept her feelings. Maybe it won't matter later, but who knows? Maybe it's a way to deal with things so she can die peacefully later. All this stuff is in us, at some level, and if we don't work through it we can carry hurt and resentment till our last breath. This might be an off-the-wall theory, but it looks as if what she's doing has real value.

She's also saying and writing things that means much to her. For now, she's really learning to accept the memory loss -- and what more could I ask? She is so much less depressed that she can now say things like "I don't need all those memories." Yesterday she wrote in her notebook (and read to me aloud): "Memory is just bringing back what isn't really here."

Taking all these blessings while I can!

"Memory is just bringing back what isn't really here." Bless your loved one, Cathy, that's a very insightful thought, she's living in the moment.