Late diagnosis / no diagnosis

apricot tree

My mom and I are suffering from the lack of a timely diagnosis.  I live at a distance from my mom  and coordinate her care.   She's almost 98! She has 24/7 care and we speak on the phone frequently.

 About 10-12 years ago, her pcp suggested testing her for Alzheimer's disease, and my mom went for the testing and found it "very unpleasant," and either never completed it, or did not go back to discuss results.  The communication with this doctor was not good, and when my mom hit her middle 80s, the doctor pushed her out of her practice.   A new doctor discussed dementia with her, prescribed cognitive therapies, and so on, but I was never included in these discussions.   Now that she's in the stage of getting worse, her third (much better) doctor told her that she's having difficulty eating and remembering because she has Alzheimer's.  The doctor assumed there'd been a family discussion of this. 

But my mom is so independent, and so good at keeping stuff to herself - -that there never had been such a discussion that I know of. Her mantra has been "I don't want to be a burden!"   In fact, neither she nor a doctor ever suggested a family discussion.   So when her newest doctor mentioned this to her in a check up yesterday -- she freaked -- and is very very upset.

Of course she's been very upset at the process of me doing her taxes, paying bills, managing her finances, arranging help for etc... she's been upset all along.  All those losses.

I'm sad at the missed opportunities for understanding better, sad that she didn't make more effort to draw us in and share, sad that she's very very upset now.  I know all I can do is tell her we love her no matter the name of her illness.  But... do others have similar experiences of this?

dayn2nite2

There are really no "missed opportunities" here.  She's 98.  Has lived a very long life.  You are handling her finances, etc.  The only circumstance she would have needed a diagnosis absolutely would be if she needed disability, which she doesn't.

Since you've arranged 24/7 care, I'd just try to enjoy the limited time she has left without wondering what might have been.

apricot tree

Thanks, I know you are right.  I think I'm suffering from grief before her death. She did have a long lively life.

June45

dayn2nite2 wrote:

There are really no "missed opportunities" here.  She's 98.  Has lived a very long life.  You are handling her finances, etc.  The only circumstance she would have needed a diagnosis absolutely would be if she needed disability, which she doesn't.

Since you've arranged 24/7 care, I'd just try to enjoy the limited time she has left without wondering what might have been.

My thoughts also.

aod326

Hi apricot. I think I know how you feel. For the first 3 years with DH, we all (neurologist included) thought his symptoms were to do with the seizures he'd developed out of nowhere, and he didn't get a dementia diagnosis until January 2020. I know that an earlier diagnosis wouldn't have made a difference to treatment, or the end result, but if I'd known earlier I think I would have reacted differently to some of his behaviours.  For example, if I'd known that it is normal to lose interest in doing things, I wouldn't have pushed him to keep reading the two newspapers he used to read cover-to-cover. I wouldn't have been (as) frustrated about the daily list making, with the same things on the list, or him not following the carefully created pictures of what goes in what cupboard etc. I wouldn't have try to reason with him about not being able to drive. Etc., etc., etc. 

I was a strong advocate for him from the time the seizures started, and even more so once it was clear he was declining, and I know I did the best for him that I could, throughout. I just wish I'd known earlier so that I'd joined these boards and learned SO much about how to make our lives better.

I don't feel guilty about it, just sad, like you said. In the end, though, it wouldn't have made a difference.

Love her and know you're doing the right things.

Good luck.

apricot tree

Thanks, aod., yes.  I'm sure you are right.  We FEEL that if we'd known more, it might have made a difference, maybe it would have , maybe not.   I know I've done the best I could have, and that we're lucky she had such a long good old age. 

Her reaction to the doctor's discussion was saddening -- there's so much fear and stigma about AD, it was almost as if she was doing okay until she heard those words. 

Thank you for your moral support!

Iris L.

Ditto what dayn2nite2 said.  Also, avoid all talk of finances with her, it only brings up perpetual frustration.  Focus on the time you have left.  

Iris

Cynbar

I just want to say that I think you've done a fantastic job. You have your mother set up in her home with 24/7 care, you're handling her finances and generally managing the situation while maintaining her dignity. I don't think that having a diagnosis earlier, or having family discussions about it, would have changed much. With dementia, you react to the symptoms as they occur. You have done that, with a great deal of success. Hindsight is always 20/20. Your mother has had her way of doing things, of not wanting to be a burden, which is why she didn't draw you in more. It's important to respect that.  She has lived a long and full life, but you can't protect her from feeling sad about the losses, it's sort of inevitable at 98. Please don't beat yourself up, there's no need for that. Focus on the positives here, there are many.