Reply to Withholding Alzheimer’s Diagnosis from the Patient

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[quote=Anonymous]You should tell her, when she is in a good state (because it tends to fluctuate) and see how it goes. If she's ready for the conversation, you can get some things done (wills, POA, etc) but be prepared to do it all and explain it to her , she cannot take initiatve or make decisions easily at this point. But there's no point in reminding them over and over they have dementia or saying "remember mom? I told you that yesterday/5 minute ago" because they dont remember and it is stressful.

as for understanding the diagosis: different people will deal with this in different ways. For us: about 6 months ago, my mother got the same diagnosis, after about 3-4 years of increasingly obvious cognitive impairment. Probably between stage 3-4. The doctor told my mother she had Alzheimers. She was upset and quiet for a little while. By the time we left the doctors, she had basically put it out of her mind and has never mentioned it since although she acknowledges sometimes that 'her brain is not working properly anymore.'  I've once or twice brought it up and she literally cannot 'hear' me. I believe in her case it is also a psychological defense mechanism, or an aspect of the disease--it is literally uncomprehending, at least to her, what is and will happen.

Before this illness, she regularly said she would rather die than have Alzheimers. Now she is terrified of dying and clearly cant really comprehend either the disease or the concept of ending her life--but even just managing anything is too much these days. I will say that she's not prevented me from essentially taking over decision making for her and I am SO glad she's moved, and we've done some important paperwork before she was too far gone (the difference between last year and this year is tremendous).  She moved to assisted living (memory care is on the horizon) and while she can still dress appropriately, read the paper and more or less convrse, she forgets so much and is confused about anything new. Moreover, she has a low set of demands-- she does not drive, shop, cook, use a computer, or a cell phone--she can't do any of those anymore.  She can barely operate the TV (i wrote down how to press the button and ask alexa to put on a show).  I handle medical appointments, bills, medication is managed by her AL, etc. What no one can really manage is her health or her emotional pain. I get dozens of calls a day and she is currently experiencing some sort of chronic pain for which there is no obvious explanation (multiple hospital and doctor visits). She is lonely, sad, and confused and I am stressed trying to balance it all. Last week I took two days off to take her to various appointments ,plus spent all day saturday in the ER. Her assisted living facility helps, but she still expects me to come daily (I cannot !).

There are two kinds of hard things dealing with this diagnosis for the family. First, is the actual management of increasingly disoriented loved ones, and finding the best way to care. The other is the heartbreak of watching someone lose not only their capacity to do things but the intrinsic qualities that made them who they were.  My mom was a fantastic cook, keenly intersted in history, culture and world affairs, spoke 3 languages (plus read Latin), taught history, and almost completed a phd at harvard before having kids and stopping, etc. I really can't do much to help her, either, and that's heartbreaking too.

I wish you the best on this pretty awful journey. It sounds terrible but I now pray that my mother passes quickly without pain, rather than suffer for years in an increasingly agitated and sad state. [/quote]

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