Mother Talkers

To Tell Or Not To Tell Loved Ones They Have Alzheimer’s

by Elisa

Fri Feb 15, 2008 at 06:01:35 PM PDT

This letter to Salon’s Cary Tennis resonated with me as it is something my own family has had to grapple with my grandmother. Should this son tell his father he has Alzheimer’s disease? Tennis’s response:

I think your father has a right to know about his diagnosis, but he should be told by his doctor.

If that were all there is to it, this could be a one-sentence column.

But there is always more to say. For instance, how do you ensure that he is told, if your mother does not want him to know? And are you sure that he does not know? He may have been told but not give signs of knowing…

Regardless of what he "knows" or does not "know," I think we have a moral obligation to treat him as a person capable of understanding, and thus to tell him of his condition, to treat him as though he can understand even if he fails to give us the accustomed signals of comprehension.

On principle, I agree with Tennis. But what I would have added is this son’s mother -- not the son, who is largely an overseas soldier -- is taking care of the father. I would respect her wishes as she is the one making medical decisions for him and taking care of him.

But I feel for the son, who clearly, is very close to his father. I was touched by his description of his dad:

He was the personification of what a man and father should be. Strong yet gentle, firm yet understanding. He loves my mother with a passion and depth that I only appreciate now.

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I, too, found myself in a similar situation, in which my parents have decided not to tell my grandmother -- who I am especially close to but lives with them -- that she has Alzheimer’s. They are following the advice of her doctor.

I, too, am troubled that she does not know and is constantly complaining about memory loss and suffering from bouts of paranoia related to it. But I have decided to respect my parents’ wishes because they are the ones caring for her. I trust their gut on this more than mine, which is 3,000 miles removed from the situation.

I am curious: Have any of you ever had to tell, or chose not to tell, an Alzheimer’s patient of the diagnosis? What have been your experiences with this terrible disease?

Tags: Alzheimer's disease, Cary Tennis, Salon, advice column, memory loss (all tags)

Permalink | 3 comments

  • My experience (0 / 0)

    My grandfather started exhibiting symptoms of dementia while I was in high school.  As his disease progressed we found it was best just to go along with his perceptions.  He was too far along to understand his diagnosis once it came anyway.  

    Maybe we were humoring him or not being entirely truthful all of the time but he would have just been upset and would have to be told over and over again about what was going on.  This is actually the advice that our local Alzheimer's Association gives.  He lived across the backyard from me so I have very strong memories of his illness and caring for both him and my grandmother.  I think it should be up to the relatives who are actually providing the day-to-day care to make most of the decisions.

    by music teacher on Fri Feb 15, 2008 at 06:19:29 PM PDT

  • My grandmother (0 / 0)

    had Alzheimer's ... for 10 years or so. It's a very long time to watch someone decline.

    The only good part was that for most of it, she seemed relatively happy. The effect was rather like she was back in her childhood memories. It was a lot tougher on the rest of us, especially my mom. In her last years, she didn't recognize me, but fortunately I was able to not take it personally.

    by shenanigans on Fri Feb 15, 2008 at 11:37:04 PM PDT

  • Mother with Alzheimer's (0 / 0)

    For our family, we chose to tell my mother.  It was a repetitive conversation but necessary.  As she transitioned from a large single family home to senior independent living and now assisted living, it was part of explaining the moves.  She no longer recognizes any of her children by name or connection.  We are all just special people to her. I think the decision to tell the person or not is related to the family dynamic.

    by hgiarrus on Sat Feb 16, 2008 at 02:02:18 PM PDT

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