Things that suck, #45: dementia

Last updated on: December 1, 2015 at 10:30 am by Jane the Actuary

Things that suck, #45: dementia 2015-12-01T10:30:10-06:00 Jane the Actuary

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Yeah, another visit home.

Usually, I try to keep the family stuff limited to cute stories about the kids. After all, I blog anonymously as “Jane the Actuary,” but I occasionally share things on facebook (the noncontroversial things, like recipes and cute stories), and it’s always possible that family members have read other parts of the blog besides what I’ve directly shared, though no one’s every said anything to that effect, and, so far as I know, they’re just not blog readers in general. But I’m feeling mighty frustrated so am going to violate my usual rule, in the hopes that perhaps some readers have experiences they can share that might moderate the frustration a bit.

Dad, as some longtime readers may know, had a fall, April a year ago, and hit his head, spending until September in the hospital, then at rehab, then in the hospital again (brain surgery, due to blood clots), then at rehab again. And he hasn’t been the same since, even though the neurologist pronounced him all healed up. My sister arranged for some neuropsychological testing, this past spring, which produced the answer that the symptoms we’re seeing aren’t those of a brain injury so much as a pre-existing mild dementia that was significantly worsened by the injury.

Now, had you asked me, say, two years ago, about dementia, I would have said that that’s just an old term for what we now call Alzheimer’s, though the recent news about Robin William’s Lewy body dementia has brought about some awareness that dementia is more than just memory loss, and if you look at a site such as alz.org, there are a number of types of dementia, and Dad’s symptoms match those of vascular dementia, according to the Mayo Clinic’s online information:

Confusion
Trouble paying attention and concentrating
Reduced ability to organize thoughts or actions
Decline in ability to analyze a situation, develop an effective plan and communicate that plan to others
Difficulty deciding what to do next
Problems with memory
Restlessness and agitation
Unsteady gait
Sudden or frequent urge to urinate or inability to control passing urine
Depression

Our visits home have ups and downs. Back at Labor Day, we were pleased that we were able to engage him in a game of hearts, an improvement over the prior visit where we couldn’t get him to even play, or the visit before, when he sat down with us for Uno and Yahtzee but struggled to play the games correctly. (They live in the Detroit area, so it requires a long weekend, with an empty calendar, for us to be able to come.) This Thanksgiving, he was just back from another stint in rehab, after a gallbladder removal operation, and he was in worse shape than before — he had lost weight, he was depressed, it was hard to get him to engage, and he just wanted to sit in his chair in the family room, staring straight ahead, for much of the afternoon, until, roused a bit, he asked mom to turn the TV on to Wheel of Fortune or Jeopardy.

We’d had The Talk before — that is, the “you should move to a retirement community” talk. But this time we were more aggressive and more specific, making the pitch that they should stay at the CCRC near us that offers a 90-day trial — and making the pitch to Mom, since Dad has no real ability to make decisions like this any longer but, we thought, would be persuaded if Mom was willing.

“No obligation,” we said. “Think of it like a long vacation,” we encouraged. “We’ll pay,” we promised. And when that wasn’t enough, we moved on to, “we’re very worried about Dad, and staying in this house is a one-way path; he’s only going to get worse, until he falls, or can’t climb the stairs any longer, or has another stay in the hospital that saps his strength further, resulting in a crisis situation. (The house is a colonial; conceivably the 1st-story den could be remade into a bedroom, but there is a step from that main area with the kitchen, to the family room and bathroom.) Coming to visit FV is a positive choice you can make that will improve his quality of life, and keep him more engaged, and improve your life as well” — because Mom doesn’t get out much, other than to the senior lunch at the community center, and she’s in good health only in comparison to Dad. Having scheduled activities, including exercise classes, and a pool for water exercise, and restaurant meals and maid service included in the price, and the opportunity to socialize and develop friendships with others in similar situations, would do a world of good.

As you can tell, we failed. More frustratingly, we thought, upon returning home, that we had succeeded, only to hear, afterwards, that they’d backed out.

How do you help someone who doesn’t want to be helped? Mom manages to pay the bills mostly on time, so far as we can tell, but there are other issues with their finances that they need help sorting out. She can’t keep the house clean. Dad ought to see a proper gerontologist rather than the same doctor he’s seen for decades. And these are just the superficial issues.

So we’re back to square one.

It is, in some ways, similar to being a parent, say, of a college student, recognizing that their kid is an adult with every right to make decisions on their own, but worrying about whether they’ll make the right decisions, and go to class on time, or party and sleep in instead, with a risk of harsh consequences if they fail. Though, in that case, the consequences aren’t generally lasting, and present an opportunity for the kid to learn and move forward. In this case, Mom (though perhaps not Dad) is a competent adult, who has the right to make her own decisions, but the consequences of those decisions can be lasting and serious, with no ability to reverse what’s set in motion — and, what’s more, in this case, inaction itself has become a decision.

And this is the point in the blog post where I invite you to share your experiences with me.

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