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Memory Health: Alzheimer's Support Group
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How do you describe dementia to mere mortals?

My caregiver (and SO) asked me an interesting question today, one I didn't have an answer for.. Far flung family and friends ask how I am doing, she can summarize the physical aspects of my current status but has a really hard time describing not just dementia, not just *my* dementia but *my* dementia at this stage of progression. She says that while she sees things getting worse, unless the other person knew me well before, and specifically mentally, they can't really get where I am now. Hell I am stumbling all over myself just trying to ask this question. So how did/do you respond to concerned but uneducated (on dementia) but well-meaning family and friends?

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These two videos give a pretty good overview:

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Christian; cheers for the links, will view them tomorrow with my caregiver. Its an on-going situation. We live thousands of miles from any relatives on either side. This was no accident...we are just different from the rest of our families. In any event, while that isolation has worked wonderfully for years, now it finds us, me going bonkers and my caregiver standing quite alone. Its a tough one with LBD in particular; if they catch you at the right time, they would be forgiven for thinking nothing is wrong. Here is an easy example from real life. My wife/caregiver knows as much as many of the doctors we see about LBD. This only means she knows a little because most local docs DKS.* Anyhow even with her knowing it and me the best, she still can miss the most heinous and at times obvious symptoms, constantly under-assessing how far things have come. One thing to know about me and my brand of aphasia is that while it has many of the obvious signs (clear word replacement, times of inability to say anything, etc), the real problem with me is was demonstrated this week when I had three bad days and most of the time I had little control over my speech. However what came out wasn't obviously wrong, it came out syntactically correct and might even use my slang but so often it was completely not what I was trying to say. She would ask about dinner and I wanted frozen pizza (we have this really cool way of cooking it) we had in the freezer but my reply might come out as: "I need to take my Mobic (anti-inflammatory)" or "I copied Aquaman from the internet last night". Anything but what my brain was trying to say which was "I would like the pizza in the freezer with added toppings.". Light-years away from what came out. Yet when we were talking about my recent decline and she said I was not as bad as I thought aphasia wise because she has observed only a minimum of the classic word-swaps. Yet I would grow frustrated because after three tries I just could not get it out so physically got up and did a show and tell with the pizza...this is a scenario that plays out several times a week. I think if she realized how truly far off my speech was (at times) she would freak out.

The point is, she knows me better than anyone yet you can see how she can miss some of the bigger dementia symptoms. Physical is easy to describe....

Thanks again Christian....

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I see the problem. Maybe have a collection of pictures available on you iPad or phone that you can pull up? Showing a pizza image to your spouse should get the point across, as an idea....

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That correctly solves the specific problem I had with her in that instance, what I/she needs is a way to explain these changes in general to others....

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Greetings; wife and I finally watched the two videos....and neither one really addressed what I was asking. One seems like a good PSA on AD and the other is more a profile in caregiver burnout. Sadly I am in a fog right now and can't really describe how they missed or what I really need...will try again later..

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