Anosignosia

susandusen

My Mom went to a neurologist a year ago. I live out of state so my brother went… no help to me. She ended up with a Rx for Donepozil (sp?) but I never saw any paperwork of a diagnosis. She was given a self administered computer test which she utterly failed because she was confused. She then took the one month Rx meds intermittently over 3 months because she couldn’t remember to take them. The MRI showed signs of changes as seen in Alzheimer’s. I got her a neuropsychological evaluation in April that said she has Alzheimer’s. Here is where the issue comes in. I told her 3 separate times that the MRI said changes inferring Alzheimer’s. She never recalled them. She asked at the end of May about the results of the neuropsych eval. I told her I would get them for her, but as of now 5 months later she hasn’t asked. My sister and I wonder about whether or not she needs to know, as it will upset her. She thinks she just forgets some things. Is it ethical to keep the info from her? She seems like she may have anosignosia. We would like some opinions on this. Part of the issue is planning for the future is hard when she doesn’t see the need for our help. Thank you very much.

Quilting brings calm

There is no point in repeating that she has dementia. She can’t remember it, she can’t process it, nor does she believe it. Just tell her she has some memory loss due to aging. She’s not going to use dementia versus memory loss when making decisions or choices.
I understand you want her to accept your help. Unfortunately people with dementia still have the right to refuse help. You will see posters comment that you might have to wait until a crisis…. Such as when she ends up in the hospital with a urinary tract infection and medical people get involved.

There are some recent posts in the several caregiver sub-forum that mention first steps and sone resources. Check those comments out.

lilacgirl

Ansognosia is the worst!

From my experience, she will never understand her diagnosis and she won't willingly accept your help, no matter what you tell her. Hopefully you have POA so you can start making some decisions, even without her cooperation.

H1235

Welcome. Anosognosia is awful! My mom was told she has dementia and she even remembers that diagnosis. How she feels about it really depends on the day. At best she acknowledges the diagnosis, but believes she is in the very very early stages (she thinks she is still able to care for herself). On other days she tells me the doctors didn’t know what they were doing when she was diagnosed. The diagnosis is wrong! Either way she has no understanding of her care needs. I would not bring it up again. I hope someone has DPOA. This is so important. If not, I would suggest to her that it is simply something she should do because she is getting older. With the DPOA you can sign everything necessary to get her into assisted living or memory care. Come up with some excuse to explain why she needs to be there. Plumbing problems at her house, she needs physical therapy… In my opinion you can’t let the person with dementia make important decisions regarding care. We told my mom she was moving to Al. She was so angry, but thankfully she went. She made me absolutely miserable with her anger and complaints, but I truly believe she would not be alive today if she had stayed where she was. And honestly she actually enjoyed making friends and socializing (although she would never admit it). The move was good for her.
Being farther away you might see if there is a patient portal that her doctor uses. I found this very helpful. If assisted living or memory care are in her future, keep in mind that some can have a waiting list to get in. I would also recommend a facility near the person with the DPOA.
Good luck.

caregiving daughter

You are very giving to find the right path here. You have found great resources on this board.

Don't look backward—look forward. Get educated on what this illness will bring. Figure out the legal, assistance with daily living, financial protection, medication administration, and caregiving needs.

Regarding her testing, you are not keeping anything from her. She has access to the results; however, she has cognitive impairment and cannot understand them. Again, look forward and plan.

​fesk

I don't think anosognosia is terrible. I think it was a blessing in my mother's case. I also don't think it means your mother will never accept help. My mother was cooperative and happy for the most part. Everyone is different. I never used the word Alzheimer's in front of my mother. There was no need to upset her. What was important was her care and keeping her safe.

I think your challenge is getting the support in place to keep your mother safe right now, getting her to take her medications properly, even addressing aides or a move if necessary. While your mother is forgetful now, it's not clear whether she still has the ability to understand other things. My mother participated in decisions early on and for as long as she could. You may need to be somewhat firm about a move or aide or stopping driving, etc. but hopefully she can participate somewhat and you can make the changes needed to keep her safe. My mother wasn't happy about stopping driving, for example, but it was early enough that I think she understood to an extent and we made sure she got wherever she needed. The earlier you make these changes, the easier for everyone and easier for your mother to adjust. I wish you the best of luck.