Tuesday, September 16, 2014

Can One Live With Dementia?

What's it like to live with a dementia patient?

To answer that question, you have to consider all of the personality traits the dementia patient had before their illness.  Put them into a snowglobe like so many miniature white, plastic flakes, seal it up, and then shake the snowglobe as furiously as you can.

As the you hold the snowglobe still, watch the blizzard you've just created within it begin to settle down.  Those little personality traits will sort themselves out in ways that resemble the person you used to know, and slowly sink into place atop whatever stationary objects are anchored within the snowglobe.

But shake it up again, and while you can still recognize the tableau, the flakes won't land in the same spots.  Flat surfaces within the snowglobe, for example, that might have previously offered a resting place for those white, plastic flakes may be uncovered after subsequent shakes.

Tomorrow, take out one or two of those plastic flakes, and shake up the snowglobe.  Then the next day, take out one or two more.

Eventually, when you shake up the snowglobe, you won't have much of a blizzard at all.

Yesterday, I watched my father standing in front of his wide bay window, in his living room, looking out onto his deep front yard, and the suburban neighborhood beyond.  He compares the quiet, tranquil scene to his childhood in chaotic Brooklyn, where there was no bay window, no green yard, and no still street.  His block was literally a block of bricks, concrete, and mortar, with cars, delivery trucks, people walking, people shouting in play and anger, and bookies putting their profits in a small hole in a tree in front of the building where my Dad and his family lived.  He remembers men in big, fancy luxury cars coming by every now and then to collect the money that was wadded into that hole by their, um... "employees."  I once asked Dad if he was ever tempted to take the money he discovered those men would hide in that tree, and he said that even though he didn't know who the men were, he knew something terrible would happen to him if he so much as told anybody else about their secret hiding place.

That was the Brooklyn between the world's wars.  It's what my Dad remembers best, if he remembers anything at all.  Ebbets Field and the Dodgers, and Coney Island, and riding the subway at rush hour, returning home from school in Manhattan, leaning out the open windows and snatching the newspaper out of the hands of somebody standing on the platform, too close to the train.

Now, however, Dad reads his own newspaper two or three times a day - or more, never remembering that he's already read it.  He watches baseball games on television, and can call balls or strikes before the umpire does, but he doesn't know who's playing.

He does a frustrating number of ordinary things wrong.  He can't - or won't - pull his chair up close to the dining table when he eats.  Mom has taken to laying a towel over his lap to try and catch the food that drops between his plate and his mouth.  He can't work TV remotes anymore.  He's tinkered with what used to be his reliable grandfather clock so much, it's hopelessly out of synchronization, chiming the wrong time at all hours.  He frequently misplaces his glasses - which he often forgets to use - and his binoculars.  He has two pair of those - one for the front of the house, so he can spy on neighbors whose names he no longer remembers, and one for the back of the house, so he can watch the birds.

He can't drive, mow the lawn, take a shower by himself, wash the dishes, vacuum the house, or sweep the driveway:  all things he did regularly not even a year ago.  It's not just that we won't let him; he simply can't.  He doesn't have the logic and memory necessary to process the ordinary progression of steps involved in accomplishing basic tasks.  And, thanks to his fall earlier this summer, he hasn't regained the balance and strength these ordinary tasks demand, although he has improved somewhat as time has dragged by.

He argues now, but he never used to.  He complains, and he never used to complain.  He calls Mom a nag, and he never used to do that.  He pouts.  He tells bald-faced lies; although, frankly, sometimes it's hard to tell if he's intentionally denying the truth, or merely forgetting it the instant he does something.

He grouses about all of the blacks he sees playing professional sports.  He never used to do that.  Shucks, it wasn't until our family moved to Texas that I learned some people dislike blacks, but I didn't learn that from my parents.

His personality is changing before our eyes, every day, as one or two flakes of whatever it is that forms our attitude and perspective of life get taken away.

What's it like living with a dementia patient?  I've never been a parent, but I imagine it's similar to the inverse of raising children.  Except that with raising children, you should be able to reasonably expect that your child will eventually learn what you're teaching it, and be able to build upon that acquired knowledge towards bigger and better things.  With a dementia patient, it's the learning process in reverse.  It's not knowledge the dementia patient is acquiring.  They are losing knowledge.  They're losing the ability to think and process information.  Drawing correlations between similar actions and outcomes simply isn't going to happen.  They forget to use their cane, for example, no matter how many times you remind them - or nag them.  Oddly enough, they'll recognize that you're nagging them about the cane, but they still forget to use it.

I ask myself often:  what good is this type of life?  What benefit exists in the existence of a person with dementia?  They don't authentically love anymore; they respond to our affection, but they don't return it.  You can't carry on a conversation with them about anything other than what is taking place at this exact moment.

"Look, it's getting cloudy."

"Did they say it would rain?"

Then, about ten seconds later:  "Look, it's getting cloudy."

Wait for it:  "Hmm... it's getting cloudy."

"Did they forecast rain?"

Mom frequently shows Dad photos of his grandchildren, but while he'd long ago memorized the listing of their names, and can usually recite it with ease, he can't match the names with their photos.  He doesn't recognize any of them as his grandchildren when you arbitrarily present him with a photograph.  Sometimes he forgets he has grandchildren, or two sons.  Or his wife's first name.  Or mine.

Doctor after doctor he's visited this summer take test after test, and in terms of his physical health, Dad is doing remarkably well.  So we have no idea how much longer he'll live, and our family really doesn't talk about it.  But it doesn't seem like he's leading a productive existence, and in the eyes of our accomplishment-oriented society, Dad has become a drain, not a contributor.  It's a painful reality to contemplate, but it's impossible to ignore.

Why does God allow the mind to deteriorate like this?  And Dad's case isn't the worst of its kind.  Plenty of dementia patients out there are in far worse shape than Dad.  How does that glorify the Creator of all life?

Theoretically, I have to believe that life is more than one's mental health, or physical health.  Some experts can argue about the biology of life, but basically, from conception to last breath, life is that which is sustained solely through the force I believe to be the sovereignty of God.  So, regardless of what we consider to be the "quality" of somebody's life, as long as they are alive, they are alive by God's will.  And that is how God is honored.

So, can one live with dementia?  In some ways, living with a dementia patient is a lesson about life, and about what God allows that you and I probably wouldn't.  I don't necessarily see anything beneficial about dementia, but that's not God's fault.  We've become very sophisticated in our society, with technology, entertainment, education, politics, living standards, and quality-of-life metrics that can easily obscure the often uncomfortable reality that we who are alive today may not be tomorrow.  So we want as full and rich of a life experience as we can possibly achieve - now, as soon as possible, without delay.

That's how most of us determine how useful we are, or how productive and worthwhile our life is.  Meanwhile, dementia patients go from day to day, or five minutes to five minutes, or distant memory to distant memory, and God keeps them alive even though we don't think He's being very resourceful with that person.  After all, God created that person with abilities that now seem to be wasting away in the snowglobe of ever-diminishing returns.

But we're the ones who look on outward appearances, right?  We're the ones who measure people by their accomplishments.  God's the One Who looks at the heart.

In a spiritual sense, but also in a literal, mortal sense.

For His glory, whether we understand it or not.  

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