Rock and a hard place.

I scan the web often for caregiver tips that might help me help my husband…or help me help myself. These five points, about talking with an Alzheimer’s patient, are so important:

  1. Diminish distractions, banish background noises.
  2. Converse one-on-one because more people equals more confusion.
  3. Keep things simple, stick to short specific statements.
  4. Avoid arguments because no one will win.
  5. Just keep talking even if they can no longer respond.

Number four is my bugaboo. I always try to prove my point, establish that I’m right, or explain when no amount of explaining will make any difference. Peter and I both are argumentative, always have been. Even now when everything in our lives has turned upside down, that need be right still rises to the top like pasta on the boil.

I’ve long since learned that numbers one through three are the best ways to interact with him,  but I figured that out while trying to understand more about his place on the autism spectrum (ASD). It has always been difficult for me to have any meaningful conversation with Peter, so to keep him focused, I try to pick the right time to have a conversation (1), and I know from experience that he zones out if several people are talking (2), plus I attempt to keep to one idea at a time (3). Peter has never been one to chat, so I’m used to talking without response (5).

It has always been way more difficult for me to deal with his ASD than with his dementia, even though he can’t help either condition. I battle with myself daily. He can’t help it, he-can’t-help-it, he-can’t-help-it.

There has been some research that has shown that people with ASD might be more predisposed to some form of dementia than the general population. I’ve wondered about that for years. If science proves there is a link, at least I could argue that I was right.

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Header: Lake Louise, BC.  Peter tries to lift a rock to bring home for Carolynn’s collection. (8/31/10)

This is the way he makes our bed.

Peter helps around the house…creatively. He can no long fix or build things like he used to, so he’s invented chores and ways to do them.

He scuffs at embryonic maple leaves and tiny pear blossom petals — they hitch rides inside attached to Nobby — off the family room rug with the edge of his shoe, then picks them up and carries them to the wastebasket. Using the hand vac would be quicker and do a better job, but he likes his shoe method.

After I’ve done my weekly run-through downstairs with the vacuum cleaner, Peter straightens the fringe on the rugs, sometimes with the dog’s wire brush, sometimes with a comb, once with my pastry fork!  I don’t care whether the fringe is untangled or not, but the pastry fork is off limits!

My husband has an ongoing obsession with picking up the tiny twigs that snap off the trees. He mounds them into piles in the woods or crams them into an empty birdseed bucket that I dump when he’s not looking. He polishes the kitchen countertops until they gleam, but he doesn’t move appliances out of the way to do it.  There’s no doubt where the coffeemaker, knife block, tea kettle, and mixer live because the unbuffed areas tell the story.

I’m usually up and out at least an hour before Peter is, but when I come back from my walk he’ll have “made the bed.” That is, his side of the bed is smoothed, pillows plumped, spread straightened. My side remains as it was when I crept out — strangled pillows, tossed quilt, crumpled sheets.

When I hang laundry out back, I often ask him to bring it in. He brings his jeans, his shirts, his socks. His excuse for not bringing my clothes, our sheets or our dishtowels is, “I didn’t know you wanted them!”

That excuse, and the novel bed-making, has ASD (Austism Spectrum Disorder, fka Asperger Syndrome) written all over it. It’s nothing to do with dementia.

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Peter charms this lass.

I’ve often said, my husband’s dementia is much easier for me to deal with than ASD. Neither can be “cured,” but ASD sometimes manifests as what I call “The Mt. Rushmore Effect” —stone-faced, remote, cold. And yet, the man I fell in love with all those years ago can be funnier, sweeter, and more charming than anyone I’ve ever met.

I’m sure Peter thinks his ASD is a non-issue since he’s lived with it successfully all his life; dementia, though, has foiled him and he does not go gently.

An excellent “Masterpiece Theater” series*, “Doc Martin”, makes both of us laugh no matter how many times we watch it. The Doc (Martin Clunes) is a highly intelligent surgeon who has a blood phobia and serious relationship issues with his patients, and with Louisa (Caroline Katz), the woman he tries to marry. Although sometimes cringe-inducing, the series is doubly funny to me, first, for its pure comedy, and second, because Doc Martin is my husband all over again. Peter doesn’t see himself, while I relate to Louisa’s devotion to and frustration with the man she adores.

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* “Doc Martin” is also available on Netflix.

 

Double whammy in four pages and sixteen hundred words!

Comedian Jerry Seinfeld opened the door for me — figuratively, not literally.

Brian Williams, NBC Evening News, did an interview with Seinfeld (11/6/14) to showcase his fifth season of “Comedians in cars getting coffee” web series. Seinfeld veered from the topic however, when he told Williams he’d decided he was someplace on the Autism Spectrum. He’d seen the Broadway play “The curious incident of the dog in the nightime” based on the book by Mark Haddon, and he recognized himself in lead character Christopher Boone. Young Boone, uncomfortable with eye contact, being touched, and with people in general, all common autism traits, is not labeled in the book or the play.

Screen shot 2014-11-11 at 11.22.04 AM“I’ve always been a literal person,” Seinfeld said. “So, if someone says [their child] is the ‘apple of their eye’ I don’t know what that means. There’s no ‘apple’ in an eye.”

He went on to say he’s observed in himself behavior that makes him think he may have autism. “I think, on a very drawn-out scale, I’m on the spectrum,” he said. “Basic social engagement is really a struggle. … But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”

When I watched the interview and a follow-up the next evening, I realized it gave me the opening I’d been looking for to go beyond dementia in this blog. In “Thinking for two” (9/15/14), I wrote: “What keeps Peter somewhat steady, I think, is that he is now, and always has been, so bloody single-minded, the effects of a separate issue. I never thought I’d be glad that was the case.”

The “separate issue” I hinted at was known as Asperger syndrome (AS) until two years ago. For some years, AS was considered a less severe form of autism. Long before dementia and possible Alzheimer’s disease entered our lives, Leslie described AS to me. I’ve always loved hearing my daughters talk about their careers, Leslie’s teaching related to autism spectrum disorders,* and the drama that is inherent in Carolynn’s oncology nursing field.

[*The American Psychological Association did away with the term Asperger’s Syndrome in 2012. But it was years earlier that Leslie enlightened me about AS, so I will use the term here, and stand corrected by my daughter later.]

In our long-ago conversation Leslie explained that people with the diagnosis frequently were slow to talk as children, unable to converse as adults, couldn’t look others in the eye or show emotion, and they weren’t necessarily personable.

“That sounds like Peter!” I said. “His mother had a stack of books she’d read when he was little to try to figure out why he wouldn’t talk. He was such a loner, but always comfortable with much older people or much younger children.” That was still true. I didn’t know whether to laugh or cry.

“I didn’t know all that, Mom,” Leslie said, “but, you’re right, a lot of of the characteristics apply, and goodness knows he’s uncomfortable in social situations.”

She said she’d test him — Leslie can get Peter to agree to anything — and thus that part of our journey began.

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