Why People with Dementia Refuse to Do Things

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Recently, while Marja, our son Kai and our grandson Otto were exploring the Oregon coast, we walked out to see the towering plumes of water created by the crashing surf at high tide. To get there we had to walk perhaps 50 meters over volcanic rock. The rock was uneven, of course, and we had to hop around the shallow pools of water from one island of rock to another.

It should certainly not have been a problem; nobody else seemed to be having trouble moving around.

I'm used to my mild difficulties with balance caused by my peripheral neuropathy. Now, unable to use my left arm (which was in a sling from my broken collarbone), my balance was even worse. All of this was exacerbated by the sandals I'd chosen to wear rather than the hiking boots I should have worn.

The cumulative impact on my sense of balance made it extraordinarily difficult to navigate around the small pools of water, and I almost fell several times onto the sharp surface of the rock. My flailing left arm and misstep into one of the small pools to maintain my balance made me feel foolish . . . and old!

However, I noticed something else. The landscape itself began to seem treacherous. I was aware that everyone else was navigating easily, but I noticed myself wondering: In such a dangerous place, how do they do it?

To a much smaller degree, I have noticed a similar phenomenon as a result of my cognitive decline. Certain aspects of the environment seem perilous in themselves.

I find myself checking out immediately from of any disagreement about what happened in the past, even when I'm quite sure of my memory. I defer to others' sense of direction or decisions about how to find our way to wherever we're going. I want to avoid Scrabble after noting the decline in my ability to play.

These are not disabling. Most of the time my sense of direction is perfectly serviceable. I only lose my way in new environments (like driving to the Napa Library this morning with Otto and his sister Madeline) and even then, it's only temporary. I still make some stabs at arguing with Marja about memory. I'm definitely going to play Scrabble with Otto and Madeline again.

Nevertheless, these situations create a certain apprehension.

I suspect that people with significant impairments experience similar (although much worse) anxiety. As their abilities wane, it's not just a question of avoiding those particular situations. It's also that the entire environment becomes more and more frightening and fear itself exacerbates their impairment . . . and their isolation.

There's a tendency, I suspect, for the caregiver to get a bit frustrated when the person with Alzheimer's refuses to do something that the caregiver knows that he really could do. Perhaps we underestimate the fear that makes their forays into the environment seem impossibly treacherous.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

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12 Comments

Michael and ff, I know what you guys are talking about. Today I was trying to count out some change and stood there staring at all the coins in my hand. My mind just wasn't sorting through them. It was a major effort. That was so strange. Last night I almost fell down the steps. And I've been dropping things. I'm starting to wonder what is going on with my brain. Age? or something more serious? I'll try not to worry until someone comes up with a cure for all the various ailments. Worrying right now doesn't help at all.
David, thank you for the article. I think the same can be said for those of us who are in age decline mode. I know I keep putting off doing things around the house because of the effort involved, what use to be easy and quick, is now cumbersome and tiring.

Back when I was 55, I use to get annoyed seeing new home construction advertisements for houses on one level for those 55 and older. Running up and down the stairs was so easy, what were these builders talking about. Well, at 68 now I know. I now find myself super cautious on the stairs, holding the railing with one hand and feeling the wall with the other.

Driving now is high anxiety, and how I use to love to run the highways just a few years ago. What in the world happened? I think for me is the fact that just about everyone has a cellphone and they aren't paying full time and attention. I have passed far too many rear enders where someone wasn't too busy yacking or texting. I didn't want to be a notch on their belt. Thank goodness for the Internet and home delivery :)

My sig other and I love to hike... but when I fell into a creek when my walking stick slipped out from under me on a mossy rock, it was an unsettling feeling, as this was the first time it ever happened. I lost my confidence.
As we age we lose our periferal vision. Last night I watched a show called "Hack the Brain". It's on the science channel. It explained how our vision and perception changes as we age. I found it very interesting. Brain games help us train and increase our brain power. I am sure most of you have heard of "turn on your luminosity" very good for keeping the brain thinking. It is very interesting to see what happens to us and losing the periferal vision scared me the most. Check these shows out to learn how you can train yourself and keep the mind sharp as much as we possibly can. My father is developing lb dementia due to the Parkinson's and I see this happening to him. Peace and have fun playing the brain games! Peace!