Friday, November 6, 2015

Things to Know About Dementia, Part 2

For Part 1, click here.
For Part 3, click here
For Part 4, click here.

15.  The "Bad Guy"

Some dementia patients seem to single out one of their loved ones or caregivers to be some sort of "bad guy."  Dementia patients can get quite frustrated with their declining memory, and even if they can't figure out what is wrong, they know that somebody must be to blame for something.

And who do they see most often?  Probably a loved one, right?  Particularly if that loved one is a frequent caregiver.  So one of those loved ones may become a target for their anger and confusion.

Remember, logic is one of the first things to get muddled by dementia.

With Dad, for example, I was the one who wound up getting blamed for all sorts of things, from petty misunderstandings with which I wasn't even involved, to Dad's general forgetfulness.  At first, it was difficult for me, having Dad lash out against me so.  But I came to appreciate the fact that, at least, Dad was lashing out at me instead of Mom.  That could have been an even more troublesome scenario.

At Autumn Leaves, we became friends with a devoted husband whose wife, a victim of Lewy Body dementia, would rarely talk with him during his visits.  Granted, his wife can barely talk in the best of circumstances, but she would sometimes softly banter with me, or become fairly animated when her grown daughters would visit; yet she'd be strangely silent when her husband was around.  And from all accounts, they'd had a very affectionate relationship before her dementia set in.

It seemed that, for whatever reason, this doting husband had become his wife's "bad guy."  And there didn't seem to be anything he could do about it.

Another resident at Autumn Leaves has three children; two daughters and a son, and the two men used to do everything together.  After his dementia set in, however, the father has become inexplicably brittle towards his son.  Another family we know of has a mother slipping into dementia who seems to be systematically vilifying a grown son of hers whom she used to deeply admire.

As far as we can tell, there's nothing any of us "bad guys" should have done differently to keep the full affections of our dementia-stricken loved ones after their memory changed.  Meanwhile, plenty of residents at Autumn Leaves don't seem to have singled out any particular person as a "bad guy," so it's not a universal phenomenon in the dementia world.

Nevertheless, if the same thing begins happening in your family between your dementia patient and a close loved one, don't presume it's anybody's fault.  Simply chalk it up to yet another manifestation of dementia's bizarre cruelty - or even as a perverted reminder of the closeness you've shared with your loved one all of the years before.

After all, it doesn't seem as though dementia patients pick as their "villain" somebody they haven't deeply loved in their past.

16.  Giving Up Driving

When should a dementia patient give up driving?  Wow - big question, isn't it?  This is a particularly tricky situation, since for many Americans, driving is the quintessential representation of independence.

It's not just a question of the age at which our elderly drivers should relinquish their car keys.  Some dementia patients, such as my Dad, did not exhibit the delays in reflex that can make old-age driving dangerous.   Indeed, some "normal" drivers tend to have worse road manners than people struggling with dementia!

Yet, beyond independence, the main issue about driving is safety, right?  Safety for the driver and their passengers, and for other people sharing the public roadways.  Yet how many children are concerned about safety?  The reason I ask is that since dementia patients are regressing into their childhood, you likely won't be able to bank on the safety factor for logic in helping a dementia patient give up their keys.

Nevertheless, once your loved one has been diagnosed with any form of dementia, it is imperative that they no longer drive alone.  You now have the responsibility of ensuring your loved one's overall safety, and it is blatant irresponsibility to let anybody with memory problems drive anywhere by themself.  As hard a task as that likely will be, it's one of those new realities that simply must be enforced.  It's for your loved one's good, as well as yours, should they ever get lost while driving alone.

Dad and Mom at Autumn Leaves, May 2015
(photo taken with my old flip phone!)
Fortunately for Mom and me, it took years after his diagnosis before Dad's overall driving capabilities were compromised by his age and dementia.  After his initial diagnosis, we were able to compromise with him:  one of us had to be with him if and when he wanted to go someplace.  We told him he could go wherever he wanted, just so long as one of us went with him.  The thing is, it wasn't risky for us to leave it open-ended like that, since his dementia was decreasing the size of his destination universe.  He couldn't think of places very far from his home to which he wanted to drive.

Indeed, the blow to your loved one's independence can be cushioned if they can still drive well enough with you or another responsible adult in the vehicle with them.  As far as our family's experience goes, if the dementia patient can maintain a suitable safety record, and as long as you're utterly comfortable riding with them as they drive, foregoing the ultimate showdown over their keys could be a kick-the-can-down-the-road issue.

Let me explain.  For our family, realizing Dad had a dementia problem all began with a simple afternoon task in 2007.  Mom sent him on a routine errand to a grocery store five minutes from the house.  Several hours later - after a panicked evening for Mom and me, trying to figure out where he was - we learned he was at a grocery store half an hour away from home.  He'd never been there before, he didn't know where he was, and he didn't know how he'd gotten there.

Fortunately for us, an employee at the grocery store noticed Dad was a bit confused.  The employee asked Dad if they could call his home for him, and thankfully, Dad could remember his home phone number (a number he'd known since moving to Texas in 1978).

The very next day, Mom called their doctor, and we officially embarked on Dad's eight-year journey through dementia.

It wasn't until he was seven years into his journey, however, that Dad himself decided not to drive.  For a long time, we let Dad drive within a very tight radius around his home, to the bank, grocery store, post office, and church.  And either Mom or I always - always! - rode with him.  It likely helped enormously that in his career, Dad did a lot of driving to sales calls, so for a long stretch of his life, he'd developed road safety skills that stayed with him long into his dementia journey.

Indeed, being so used to driving, it now bugged Dad that he couldn't just drive off by himself, but he seemed to realize that something was wrong.  "I can't wait until I can drive by myself again," he'd often mutter as he and I got in his minivan.  But I wouldn't say anything, knowing that he'd never be able to drive by himself ever again.  We wouldn't let him get on a freeway, or go outside the approximately one-mile perimeter where all of Mom and Dad's regular destinations were.  We never announced that someday we'd have to take away his keys permanently.  And when, in the spring of 2014, he told Mom out of the blue that he didn't feel like driving that day, we didn't make a big deal out of it.  And he never asked to drive again.

You probably won't experience such a drama-less scenario with your loved one when it comes time for them to relinquish the driver's seat.  But as long as you're willing to ride with your loved one as they drive, and establish other rules, understand that a diagnosis of dementia, in and of itself, isn't necessary the time to take away the keys.  This will likely be one of those areas where you'll have to play it by ear.

Actually, the fact that Dad, even six or so years into dementia, could distinguish himself as a better driver than far younger folks on the road, probably says more negative things about the way other people drive these days.

17.  Sloppy Word Association

Learn how to creatively process your loved one's increasingly sloppy word association.  Dementia patients who can talk (many lose their ability to speak) can still experience difficulty in arranging the things they say into a conventional grammatical sequence.  They can also spit out words that don't seem to make sense.  They'll substitute words that aren't specific to the topic, but if you work at it, often you'll discover that those words may be pretty accurate - if you can figure out how they're related.

For example, the last time Dad verbalized a greeting to Mom, his wife of 50 years, he blurted out, "Hello, Pete!"  Peter is the name of his youngest son.  So, okay; at least Dad used a family name; the name of a beloved person for him.  He didn't get the "Eileen" part, but he associated Mom's presence with somebody very close to his heart, and his brain flipped out my brother's name instead.  Oftentimes, that's as good as it's gonna get.  Simply take it and move on.  At least your loved one can still talk.  As I said, many lose that ability, and can merely moan, stutter, become literally mute.

One resident at Autumn Leaves, the former bank CPA who now spends her days wandering around clutching pillows, surprised us all one morning.  Usually, this CPA mumbles a series of one-syllable words - usually words that begin with the same letter of the alphabet - and that's simply the extent of her talking.  But this particular morning, she was standing with her husband, who was visiting like Mom and I were.  We were chatting with one of the facility's activity directors, who was expecting her first child, and had begun putting on weight.  And the CPA's husband cracked a fatty joke.

The former bank CPA wheeled around, a scowl immediately clouding her face, and she shook a skinny index finger in her husband's startled face.  "NO!" she proclaimed loudly and firmly.  "Not my husband!"

She knew that her husband had make a joke at somebody else's expense, and she didn't like it.

Her chagrined husband willingly acknowledged his error.  "Fancy her taking this moment to be lucid," he sighed.

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