He doesn’t know what he doesn’t know.

Did anyone hear me yelling a few days ago? I yelled out of frustration with myself as much as with my husband…

…because once again he managed to confuse our so-called “smart” tv by pushing the wrong buttons on the [cable] remote. I’m not smart enough to know what’s wrong, so I can’t fix it.”

After stewing about the problem for days, I finally got smart and photographed the television screen with its various error messages. Then I gathered up the remotes and my smart phone and went to the shop where we bought the tv. I explained how the remote got bungled and asked if there was such a thing as a remote with on/off and channel/volume choices only? I laughed, but I wasn’t kidding.

The owner wasn’t kidding either when he suggested he might be able to disable the two problem buttons so they wouldn’t function at all.

“Go for it,” I said. Five minutes later he was done. I giggled when he told me he’d taped over the tiny printed circuit boards. “My husband was an electrical engineer for forty years,” I said. “At one time, problem-solving, printed circuit boards and codes were his expertise.” I put my sunglasses on quickly to hide the tears that flooded my eyes at the irony.

That evening, even with television viewing possible again, I suggested we go to a movie. “‘The Man Who Knew Infinity’ is playing,” I said. “Remember, we saw the previews…about a math genius. You thought it looked interesting.”

Peter nodded. “I do remember. Yes. Let’s go.” He was as surprised as I was that he remembered, but he’s always been numbers man. He can still count backwards by sevens from one hundred easily, a skill that is rated on Alzheimer’s assessments.

The movie was absolutely engrossing. One review gave it two stars, but I gave it five on a four-star scale. I peeked at Peter throughout. He never once nodded off. Every so often I asked if he understood what they were talking about because I certainly didn’t. He did.

On the way home, I asked again if he really understood all the terms — partitions, proofs, integers, numbers theory — gobbledygook to me. He laughed. “Course I did,” he said, “but that was way before my time.”

The brilliant minds of Srinivasa Ramanujan and G.H. Hardy (Dev Patel and Jeremy Irons) are beyond my ken, but I appreciate their story. I cried at the end. I almost never cry at movies.

The five partitions of the number four
1+1+1+1  |   1+1+2   |   1+3   |   2+2  |  4

Random thoughts, not remembered.

Peter has trouble expressing himself more and more frequently. The other evening he was trying to explain something, but his words were jumbled. I leaned closer hoping I could catch a few words and make sense of them. Instead, he smacked himself on the head and said, “My thoughts just won’t stay in one place long enough for me to remember what I’m trying to say.”

We both laughed, but that in itself was quite a mouthful for him these days.

APHASIA (uhfey-zhuh) noun, Pathology.
The loss of a previously held ability to speak or understand
spoken or written language, due to disease or injury of the brain.

It’s so difficult for those of us whose thoughts do stay in one place to imagine what it would be like to have some form of dementia. Peter falls back on his sense of humor to get by, and I borrow on that a lot. At times, though, it’s exhausting, probably as much for him as it is for me.

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©Dan Murphy cartoon, 6/18/95

Later Peter asked, “Did you know me before my mind got like this,” he waggled his hands above his head, “before my bike accident?”

“Of course I did, silly,” I answered. “That was in 1980. We met in 1974. Besides, your mind didn’t get ‘like this’ until a few years ago. ‘”

“How do you remember all that?”

“‘Elephant brain’,” I joked. “Important stuff. How could I forget?”

“I did,” he said sadly.

 

Header photo: web grab

Don’t dwell on the disease…

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day.”

—Meryl Comer, Slow Dancing with a Stranger:
Lost and Found in the age of Alzheimer’s
(2014)

[Author Meryl Comer] argues persuasively that we can’t “age-proof our lives” and that this disease, “the dark side of longevity,” is a “looming health catastrophe” for us all. “My greatest fear,” she writes, “is that mine will be the family next door by midcentury.”

— Jane Gross, The New York Times, September 1, 2014

 

…Value the moments, the pearls of wisdom,
their smile and humor.”

— St. Elizabeth

 

Drawing: Alzheimer, Krankheitsfälle d. spät. Alters.  Verlag von Julius Springer in Berlin. Plate 5, Fig.2, “accumulation of lipoid material in a plaque near a capillary. becker.wustl.edu

Have I done him wrong?

This sentence from an Alzheimer’s Association website article jumped right off the screen at me:

Most people living with Alzheimer’s Disease are not aware of their diagnosis.

What?

“Despite…the benefits of clear and accurate disclosure,” the article continued, “[only about 45 percent] of seniors diagnosed with Alzheimer’s…[have been] told the diagnosis by their health care provider.” And their caregivers don’t know either. On the other hand, more than 90 percent…of cancer and cardiovascular patients do know their diagnoses.

Whoa-a!

There is still only one way to diagnose Alzheimer’s definitively and that’s through brain autopsy. If the person exhibited Alzheimer-like symptoms while alive and the brain tissue contains the microscopic physical abnormalities typical of the disease, a definitive diagnoses can be made.

Physicians can correctly diagnose Alzheimer’s disease about 90 percent of the time while the patient is alive, based on mental and behavioral symptoms, physical examinations, neuropsychological tests, and lab tests.

But there’s still no cure.

Screen shot 2015-05-18 at 8.25.49 AM

Every 67 seconds, someone in the US develops Alzheimer’s.

Peter’s neurologist diagnosed his dementia about seven years ago. She didn’t use the “A” word, rather she said simply, “Dementia.” I breathed a sigh of relief, and when we got into the car to come home, I started crying. Peter wondered why.

“Because you don’t have Alzheimer’s,” I said, “it’s ‘only’ dementia.”

“Is that good?” he asked.

“Well, no, but it’s better than Alzheimer’s,” I said.

Screen shot 2015-05-18 at 8.25.38 AM

By 2050, there could be as many as 16 million people with Alzheimer’s.

He asked no further questions then or since. Every now and then he’ll say his memory is getting worse, so I remind him it won’t get better. I’ve never used the dreaded “A” word, but I wonder if I should? Deep down, does he know?

Have I done my husband a disservice by not laying it out? Should I attempt to do it now? If he already knows or suspects, he would never say anything. That’s not his style. He’s always played things close to his chest.

Screen shot 2015-05-18 at 8.25.28 AM

More than 5 million Americans have Alzheimer’s.

Experts advise telling patients and families because
of the need to:

  • Plan for the future
  • Take care of financial and legal matters
  • Address potential safety issues
  • Learn about possible future living arrangements
  • Develop support networks

Been there, done all that, without having The Conversation. Have I done him wrong, to paraphrase a line from an old Mae West movie? I don’t know.

Screen shot 2015-05-20 at 5.30.52 PM

I really had to look hard for something to fulfill my laugh-a-day pledge. This one works for me. Hope it does for you.

The doctor says to his patient, “I have good news and bad news.”
‘Tell me the bad news first, Doc.” 
“You have Alzheimer’s disease.”
“Oh no! What’s the good news?”
“You can go home and forget about it.”

 

 Graphics Alzheimer’s Organization©

 

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.

DSC09457

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.

DSC09455

* “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.

Screen shot 2014-11-16 at 2.40.26 PM

Alzheimer’s: the elephant in the room.

In 1906, Dr. Alois Alzheimer identified the disease that came to bear his name. In 1979, Alzheimer’s Disease (AD) caused 875 deaths in this country. That was the first year AD was identified as a separate cause of death. By 1993, more than 18 thousand people in the U.S. died from AD.

• Approximately 5.3 million Americans currently live with AD.
• Some 200 thousand of that number have early-onset AD — people in their forties and fifties.
• Every sixty-eight seconds another American is diagnosed.
• AD has been listed as the sixth leading cause of death after heart disease, cancer, chronic lower respiratory disease, and accidents. However, in March, 2014, the American Academy of Neurology reported AD is now the third leading cause of death.

Warning signs of AD:
• Profound memory loss
• Inappropriate behavior or behavior swings
• Apparent confusion and agitation
• Difficulty with spoken or written language
• Difficulty with routine tasks, such as bills
• Problems with vision and understanding spatial relationships
• Signs of impaired judgment and reasoning

Screen shot 2014-09-03 at 12.04.53 PM

Whenever I walk into a room, everyone ignores me. (Coldell cartoon)

 

Dementia is a symptom.  AD is one cause of the symptom. Dementia is considered the general term for decline in mental ability severe enough to interfere with daily life, memory loss for example. Experts agree that AD is the most common and accounts for as many as 70 to 80 percent of all cases.

Among dementia’s many other causes are Lewy Body disease, Parkinson’s disease, Vascular or multi-infarct dementia, fronto-temporal, and thyroid disease. Most are not reversible, rather they are degenerative diseases of the brain that get worse over time.

Too often, a doctor will tell the patient that he or she has “a little dementia” or in my husband’s case, “mild dementia.” Patient and family leave the office feeling relieved that it’s only dementia and not Alzheimer’s. I know I did. When we got into the car to come home I started bawling. Peter wondered what was wrong with me. I almost never cry.

“I thought she was going to say you have Alzheimer’s,” I told him.

“You mean I don’t?”

“No! It’s just dementia.” We even went to our favorite place for coffee and pastries to celebrate.

“Dementia” isn’t funny, but laughter in large doses does help. I can no longer ignore the elephant.

Screen shot 2014-08-12 at 8.55.42 AM

Sipress cartoon.

 

 [Facts and figures taken from on-line sources which show varying, but similar, statistics.]