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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Wednesday, August 20, 2014

A Treacherous Landscape

The Oregon Coast

Last week 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 stab 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.

17 comments:

  1. I've noticed my posture deteriorating as my fear of falling makes me watch the ground instead of looking up.

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  2. Maggie8/21/2014

    I've noticed that it helps me to do some specific work with my anxiety, which rises more and more quickly (and is triggered by less and less) as age and cognitive decline progress. Anti-anxiety meds help some people, but cognitive-behavioral therapy (and the lists of questions I can now ask myself during an anxious moment) have been what helps me most.

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  3. Anonymous8/21/2014

    When my children were babies I noticed I was nervous about physical risk. When I went to Switzerland to visit a cousin , we went for a walk in the mountains that involved inching along a cliff face near a waterfall. My heart was pounding like mad, even though there were plenty of handholds and a well-defined path. Before, I would not have been nervous, but the fact that I had offspring who were dependent on me made me extra fearful of risk.

    Your identity as an athletic, highly intelligent person is still dependent on your being able to negotiate certain situations, even if you're temporarily handicapped. If you screw up, who are you? That's what you have to ponder.

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    1. You're certainly correct that my previous identity as an athletic, intelligent person makes my discomfort in these situations worse; I can tell because my discomfort is so much greater when others are around and I imagine them watching me. Nevertheless, this sense of the landscape being treacherous feels a little different and dependent only upon my actual inability to navigate easily.

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  4. I really can identify with this situation...I am having increasing difficulty with stairs and it makes me feel so old! As to the Scrabble? Try the online version and play robots rather than people. No judgments and still fun..I do it every day!

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  5. I'm a former family doc now with long-standing chronic fatigue, and I've been exploring the role of fear in my own chronic illness. I, too, suspect that it is underestimated.
    In my case, I wonder if it's part of what actually drives my physiology (like very old trauma). And that it has left me with a sense of having the physical experience of fear with what is sometimes tremendous limb weakness as if I was terrified, without the actual emotion of it.

    I've been working with this angle for many years and am actually rather intrigued at starting to sense the connection a little more clearly following a recent nightmare that left me feeling the emotion at the same time as the familiar physical sensation.

    thanks so much for all you share!!

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    1. The physiological expression of fear without the emotion! Sometimes I'm amazed at how our body/mind/spirit work.

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    2. It is amazing indeed!

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    3. I'm sometimes quite amazed how our body/mind/spirit works. You have the physical experience of an emotion without experiencing the emotion ourselves. It's quite common, of course, to have that dissociation in a person who is denying his fear, but you acknowledge your fear, experience the physical impact, but still don't experience the emotion. What interesting creatures we are!

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    4. I've been exploring this as a theory and wondering if it's what created and drives my chronic fatigue (and possibly other chronic illnesses). And also thinking that, as you describe, if we can learn to re-associate the body/mind/spirit (through trauma therapy, for example), the physical illness may decrease or resolve. It's a work in progress!

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  6. Haven't commented recently, but still enjoying every post! This one really hit home because very recently, at the age of 70, I find myself more timid about a lot of things, especially driving in heavy traffic or in bad weather. I used to think that trying scooters or skate boards was great fun, and now I see them only as another way to risk falling.

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    1. I have been experiencing something similar in the last year or so. I've become much more aware of the risk of biking on the streets of Washington, especially at higher speeds. I haven't seen evidence that my skills have deteriorated, but of course at my age of 69 they can't be as bad as they were. So, like you, my attitude has begun shifting toward seeing my bicycling as "another way to risk falling" without the conscious awareness of the increased danger. Although I don't think my collarbone accident five weeks ago was a result of my age, it will be interesting to see what happens to my inner experience when can return to bicycling..

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  7. Brenda8/25/2014

    What an insightful topic to share. It is eye-opening to consider the impaired person's perspective in this light. Thank you

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  8. I think this is age related, not cognitively related. I also have peripheral neuropathy and I found a few weeks ago that I just can't walk up bleachers in a school. I've always been afraid of heights. But this fear of putting my foot down and its the wrong place just froze me on the first step up.

    I started doing tai chi, which helps me a lot with balance. I feel a bit more graceful too. Easier to stand on one foot and put the other foot somewhere, like on a bleacher seat.

    I also found out, living in Iowa, mowing the grass twice a week without sunblock, I thought I had enough vitamin D. I was taking 1000 units. A rheumatologist had me tested for my vitamin D3, and I was deficient (imagine summer mowingeven in a northern climate.) So I went on the 100,000 units a week for 8 weeks, then she put me on 2000 units of D3. Because elderly people in nursing homes that get enough vitamin D3 do not fall like elderly people can fall. Between the tai chi and the vitamin D3, my balance seems better. However, I did buy a 3 wheeled bike, because I did fear falling over and breaking a hip or some other part of anatomy. And embarassed the hell out of my daughter, lol. I told her I was getting a T shirt that said, "I am Mari's Mom and I ride a tricycle." haha

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  9. Anonymous8/26/2014

    What is the relation between knowledge, judgment, new medical concerns, and some cognitive issues? And how does the concept of anxiety (which is 'supposed' to be a small warning system for us, to alert us to possible judgment issues) inadvertently turn into a "full-scale alarm system" that wants to 'shut everything down'?

    I sometimes bemusedly wonder whether my new-ish anxieties are legitimately related to my brain's actually knowing MORE than it did before. My own brain (somewhat cognitively challenged for over 25 years from an accident, now having met up with my aging self) "knows" the consequences of falling as a senior citizen with brittle bones; of having to have others take care of us longer; knows that a somewhat slower reaction time endangers us more than before; if one is still working, it knows the consequences for the job and its duties, others having to pick up tasks, etc. Why I allowed my late spouse to go skiing regularly with me when he was in his late 70's I'll never know! Yes, it was great fun for all--but What If? What if he had fallen, died, broken his neck, hip, leg, even arm? All those educational tasks he did would have had to be done by someone else--on deadlines! Who knew?? Yet, he lived happily to 99! He thought the risks were worth taking, as did I at the time. But now? For me? When I'm myself now approaching my late 70's? I doubt it--were he here today, I would have probably 'denied' him the chance to have fun skiing! Now that I've arrived "here," later life seems to be a constant dance/balance between knowledge, judgment, possibilities, anxieties, and the aging "executive function" of the brain as mediator.

    Thanks again for your great blog and the readers who nicely comment!
    Peace, Sodium

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    1. It's a really interesting and important question. Like your husband, I've generally not been overly concerned with risk. Ten years ago, I took a two-week, solo backpacking trip in a mostly deserted area without a trail to follow. If something had happened (say, a broken leg), it's doubtful anyone would have found me. I've always felt that I didn't want to avoid a full and exciting life must because of (reasonable) risk. If I were seriously injured with a handicap for the rest of my life, of course, I might have great regrets. It will be interesting to see what happens to my bike riding on DC streets after my accident six weeks ago. Perhaps my attitudes will change, too.

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