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Still Living With Uncertainty

Slightly confusing signs
Creative Commons License photo credit: Dano

Well, the big trip is over.  I have gone to visit my father and nothing is changing.  Not that Dad hasn’t changed, he has.  Just that not enough has changed in the underlying situation to allow us to make any decisions about the best way to proceed.

For as long as I’ve known him, Dad has had a temper.  His response to unexpected circumstances was to rage.  If you happened to be close by, you became the target.  He was never physically violent that I am aware of, but then he is a little guy – under five feet, wirey and muscular but at a distinct disadvantage when it came to taking on most of the world.

Now, he is very hesitant about most everything.  Every once in a while, he gets worked up about something, but generally he is much calmer.  It is hard to tell how much of this is because he doesn’t hear very well and how much is because he doesn’t understand.  Then, every once in a while, there is a flash of the Dad I knew.  It is all very confusing.

Living With Dementia

I wonder often, just what he understands about his current circumstances.  Does he realize how much he is missing or is this just an extension of his hearing loss?  One of the things that I find really disconcerting is that unlike other dementia that I’ve dealt with, he seems to have neither long-term nor short-term memory.  We can’t talk about now, and we can’t talk about the good ol’ days.

Yet like many of his peers, he covers well.  He can get around to the familiar places that he’s gone to for years.  He can use an ATM machine (which is better than some people I know) but he struggles writing checks.  The deficits are so unpredictable that it is difficult to understand what is going on.  The only thing that the doctors can tell us is that “Yes, he is exhibiting signs of dementia.”  They cannot give any physical cause – despite a battery of tests.  They have no recommendation for treatment.  AND no one will say that he is incapable of living alone or taking care of himself.

Decisions – Not Yet

The one thing that comes through loud and clear is that Dad doesn’t want anything to change.  So, although I’d like to reach some sort of conclusion, perhaps an intermediate step with daily assistance, he continues to live alone.  Each morning, he goes to Denny’s for his oatmeal (YUCK!!) – even in the summer.  He takes the dog to a local park and walks her around the gated area off-leash, which she just loves.  He naps a lot – always has – and then he has dinner, watches TV and goes to bed.  My brother checks in on him several times a day to make sure that he’s OK – and so it goes.

He is very alone, yet neither he nor my mother had many friends.  It is not a huge surprise that he is alone.  One of the reasons I went to see him is that he was complaining about being lonely.  When I offered to move in to keep him company, he actually seemed open to the idea, but in the end, he would rather be lonely than lose what control he figures that he has.

When I first graduated from college, I worked for a man whose wife had hurt her back as a teenager.  They got pregnant that first year and after she had the baby, she was in constant pain.  They tried everything, surgery, pain killers, meditation and acupuncture.  In the end, she had to learn how to live with some level of pain for the rest of her life.  It was the first time that I was introduced to a chronic condition – a situation that won’t change, won’t kill you and you must learn to endure.  It was a real shock to my younger self.  I was a great believer in science and thought that everything that didn’t kill you could be fixed.

Dementia is like that.  It is a chronic condition that affects all of us who care about/for the person with the dementia.  There seem to be very few answers and there is no resolution.  There is just the daily challenge of how to show compassion, and how to allow for autonomy until either he doesn’t want it or until he can’t stay alone.  It is a fine line to walk and every day is a lesson in how to walk that line.  There are no solutions, just prayers and putting one foot in front of the other every day.

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Take a short break and consider the following:

“The true test of character is not how much we know how to do, but how we behave when we don't know what to do.”

John Holt

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