Sunday, October 23, 2011 CJ asks

Q: suggestions for talking about testing for alzheimer's

In talking recently with someone whom I work with, I briefly discussed my mother's dementia and explained how it was diagnosed. I asked about my colleague's parents and learned that the parent who was alive, a mother, was "being forgetful." I asked about the sorts of things that the mother was doing, and most of the behaviors described suggested to me that the parent might do well to be tested for alzheimer's or some form of dementia. When I motioned very, very gently to make the suggestion about testing, though, my colleague insisted "It's not dementia," saying it was just forgetfulness. Though it sounded a bit more than forgetfulness, I demurred at my colleague's denial and let it go. I have puzzled over the situation a bit. I wonder how I might better have handled the situation so that the importance of testing could have been the preoccupation of my colleague rather than denial of anything serious such as dementia. The fear about naming the problem seemed to overpower curiosity about finding help for it. I was troubled by that. any suggestions?

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Answers (2)

Carol Bradley Bursack, Health Guide

10/24/11 7:56am

Hi CJ,

Knowing you from your insightful, compassionate writing, I'm sure you handled this in the best possible way. You planted the seed, which may be all you can do at this time. Your friend is in denial and will need time to process what you told her. My guess is that she will ask more questions as her mother's situation gets worse. I'd use a wait and see approach. Let the seed of knowledge grow a bit, and her mom's "forgetfulness" become more of an issue. She's likely then to ask more questions. Meanwhile, I think you did all you can do.

Take care,

Carol

10/26/11 6:14am

Hi, Carol. Thank you for your thoughtful response. I think I did the best I could, under the circumstances, but the situation has continued to remain on my mind. The mother lives alone, and so my thought race to things that could happen - a cooking accident, driving accident, bathroom accident, wandering, you know the things that can happen. So I sometimes talk myself into thinking I am obliged to try to get through to my colleague the importance merely of testing.

My own mother's life has improved immensely with her move to live with us and with the care of physicians who have, we think, properly diagnosed her. She is eating better and better quality things, with my prompting; she has interaction with us and our two rescued dogs; she didn't have to be present at funerals of all of her closest of friends, who have now died; she no longer has to worry about getting bills paid and the house looked after; she doesn't have to do her laundry or change the sheets on her bed. I think her life span is lengthened, in other words, and I know her quality of life is good.

With all the good information out here now - on TV, in news media, on the internet - it's very hard to sit by as people still want to avoid talking or thinking about dementia. We are all living to be older. The chances are very likely that we will end up with some form of dementia. Seems like that alone might make people want to learn more.

So you can tell I'm still puzzling over my inability to get across to my colleague the idea of testing. I know I didn't like it when the doctor first said (after three different kinds of testing) to my mother (and to me), "We think you have alzheimer's, and we have a suggestion for how to work with you on this," but hindsight enables me to see what an important doctor's visit that was. I guess I just want to share the news that people can live with this disease and have higher quality lives than if they remain undiagnosed. And they and the people around them will be safer, in the long run, if attention is paid to their condition.

I know, I'm preaching to the choir here, Carol! So thanks for listening!

10/24/11 10:18am

CJ,

I am so glad to see your post again!

I have discovered lately that many family don't seem to even understand dementia. They would not bother to read any book about it and thus they are naive about it and have to ask people who know about dementia many questions which are really basic. These questions are like why they want to go home, why they are so mean to the family, what is the stage... Some family have no clues about the staging whatsoever...

Sometimes even the GPs are naive or ignorant and they don't even tell the family to get this diagnosed. My FIL's previous GP was like that - it was my FIL himself who wanted to find out about his memory issue regarding driving. The GP only diagnosed him with depression as a widower.

I find that it is not just the denial. The society still has this ignorance that dementia cannot be diagnosed. This is true 20 years ago probably. My husband's colleague even thought no one can diagnose Alzheimer's while the person is alive and her grandma has dementia!

Even my Mom would often say oh, it must be aging as well when I talked about my FIL's Alzheimer's conditions. The society has this thinking that dementia is not a "sure" diagnosis. It is not like cancer or heart disease at all...

I think this is overall the problem with awareness of dementia. It all starts with the GP. If the GP is willing to educate the family, then more family will do better by diagnosing their loved ones.

I believe we certainly can share our experience with these family so they understand the whole thing.

Regards,
Nina

10/26/11 6:22am

Hi, Nina! Thank you for your reply. I guess the experience of denial is more common than I imagined. Even in my own family, it seems as times as if my sisters were not *getting* the fact that my mother has dementia. My one sister was deeply troubled, I think, that my mother can't remember that she has a new great-grandchild. She has never seen the new baby, and she might not really need to see the new baby, she thinks. As she has over 10 great grandchildren, and she gets them confused sometimes, I can totally understand where she is, but it's hard to explain to my sister that my mother's dementia sometimes interferes with what might be called "family feeling."

Maybe people would rather just say their parent is "showing signs of age-related illness" than have a diagnosis. I, to the contrary, much prefer knowing more rather than less, as you evidently do. But maybe that's unusual? I continue to puzzle over how I might have handled it differently. Were this a close friend, I'd likely have plunged right in. But it's not - it's a colleague whom I don't see frequently for interpersonal conversation of a non-professional sort. So I was and remain in a quandary.

It sounds as if your father-in-law is in good hands, Nina. Your family is lucky to have you there to help learn about and think through his situation.

Best wishes,

Q: suggestions for talking about testing for alzheimer's

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