Tuesday, July 29, 2014

Dementia Doesn't Let Us Forget

My Dad is reading today's newspaper for the third time.  The third time - today.

Usually, he only reads the newspaper twice a day.

After six years of senile dementia, the number of times he reads each day's newspaper isn't strange to my Mom and me.

But it's still sad.

Not as sad as last night, however, when yet again, we figured out that he didn't know he has another son.  This happens regularly.  When we told him the name of his other son, Dad didn't know where he lived, or that he's been married for over 20 years.  Or that he and his wife have five children.

His jaw always drops when we tell him about his five grandchildren.  It dropped again last night.  Mom is usually the one who sits down with Dad and some photographs, and goes over our relatively small family tree.  And whenever she gets to the part about his five grandchildren, his reaction is always the same.

Dad's sister moved from Brooklyn to Florida a couple of years ago, but Dad still tries to call her apartment in New York.  Sometimes, he ends up reaching a telephone operator there, which makes him begin to worry that something bad has happened to his sister.

What else can't he remember?  Well, he doesn't know his right from his left.  He can't remember what month we're in, or which kitchen drawer holds our everyday silverware.  He can't remember where he and Mom, for over a decade, have attended church.

He used to have hobbies, like gardening, painting with watercolor, crossword puzzles, and jigsaw puzzles.  Now, he either has zero interest in them, or simply can't process how to do them.  His paintings hang throughout our house, but he thinks he only painted the biggest one.

His mobility has declined significantly after a fall last month, and when a friend from my parents' church brought over a walker to help him get around, Dad couldn't figure out how to use it.

But he can usually remember our street address and ZIP code.  Due to his fondness for ice cream, he has already learned to ask for Klondike ice cream bars, which Mom bought for the first time on a whim over this past Fourth of July weekend.  He also has a couple of Bible verses he can recite with remarkable accuracy, including his favorite, Isaiah 41:10.

He can still dress himself, brush his teeth, and accomplish most of the steps in preparing his lunchtime ham-and-cheese-on-a-bagel sandwich.  He usually remembers who Mom and I are, and even occasionally, the names of a couple of our long-time neighbors.

His physical therapist rates his dementia as "mild," in comparison with her other patients, but that's little comfort to Mom and me.  All things considered, we still know we have things easy, at least as far as not having to deal with all of the additional burdens Alzheimer's brings.  Dad's neurologist continues to insist that Dad does not have Alzheimer's, and for that, we are grateful.  But knowing we have it easy, compared with other families, still doesn't make it easy.

I chatted with a couple of fellow choir members at my church last week who are caring for their elderly parents with similar problems, and we all agreed that until this whole responsibility of elder care entered our lives, we had no idea what it involved.

"You know what drives me nuts?" one of the women laughed.  "When people tell you, 'Be sure to take care of yourself.  Be sure to take some time off.  Go on a vacation to get away from things!'"

"Yeah, right," another woman lamented.  "Take care of yourself?  When?  Take time off?  And spend that whole time worrying about your parents?  Besides, you notice how other people who say this stuff always offer to step in and take over your parents' care so you can take that vacation!"

Another friend recommended a book about caring for people with dementia, and the author of that book tried to make a convincing argument for adult day care, saying that it's good for people with dementia to get out of the house and into an environment with their peers.  But that makes little sense to me.  After all, the whole point of dementia is memory loss - particularly short-term memory.  Dad already doesn't like to leave the house for any reason.  His horrible memory gets him anxious and agitated easily enough already, thank you!  It's bad enough trying to get him to attend church, an activity upon which he used to insist.  Why bother tormenting him with an experience with a bunch of strangers at an adult day care he can't understand or whose benefits - whatever they may be - he can't appreciate?

Earlier this year, Dad's neurologist wanted to do a brain scan on him, and a nurse came to the house to attach electrodes to his scalp with surgical glue.  They were going to record his brain activity at home for three days and then analyze it.

To the electrodes, the nurse attached wires that coiled down his neck into a battery pack.  The whole process took over an hour.  Dad kept asking what she was doing, and the nurse would patiently explain to him about the brain scan each time.

After she left, however, Dad couldn't remember she'd just been working on him, and he blamed Mom for trying to pull some sadistic joke on him.  He was almost crying, he was so frustrated, not being able to remember what all of these nodes were doing glued to his head, and the battery pack dangling from his back.  Before the next hour was out, he had ripped every one of those electrodes off of his scalp - along with some of his hair, and some skin.  And frankly, Mom and I couldn't blame him.

There are many things in life upon which I consider myself as qualified as anybody else to comment.  And then there are other areas of life where I realize my opinions hold very little weight, and I shouldn't expect them to.  Parenting is one of those areas, and how to be a good spouse is another.  Sports.  Molecular biology.  The movies.

Meanwhile, although I didn't ask for it, don't want it, and certainly don't enjoy it, I'm acquiring quite an insight into elder care and dementia care.  One of my friends says I should write about this experience more than I do, but I find that doing so is difficult, because it's so personal for me - in a negative way.  Besides, I want to respect my father's privacy, and wonder what he'd think about me telling his story online, if only he understood about blogging and the Internet.

I also understand, however, that dementia is one of those topics where helping other people see what it's like may help expand our society's dialog in relation to it.

I'm no expert on dementia care, and I don't want to have to be.  Part of me also continues to resent God for putting my family in this situation to begin with, which means I'm still struggling with accepting what God has allowed, which means I'm no paragon of virtue or faith.   And even though Dad has had this condition for a number of years now, Mom and I still can be caught off-guard by some of the ways it manifests itself.  Oftentimes, I wonder if we're learning much of anything!

Yet we're thankful that things aren't worse.  We're thankful that so far, we've been able to care for Dad at home.  We're thankful for doctors and clinicians who seem to be quite competent, and who give us good direction for Dad's care.  And we're thankful he's still with us, even though large chunks of his memory aren't.

He spends a good portion of his days reading his Bible, and we can't think of a better way for him to be using his time.  Although God tells us that His Word is "profitable" to its readers, we're not sure how much of the Bible he's actually reading, comprehending, and retaining.  We suspect he's re-reading the same portions over and over again, since he might not remember having already read them recently.

After all, he can't remember having read the day's paper an hour later.

Nevertheless, Dad still remembers that he's a child of God's.  And that's something I need to remember through all of this, too.

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