Cobwebs of a mind.

On the spur-of-the-moment last week, I suggested we go to the DMV to get a photo ID for Peter.

“Why do I need one?” he asked.

“Because your driver’s license isn’t valid anymore,” I said.

“Why’s that?”

“It expired last year.”

“Why?”

“Because you decided you shouldn’t drive anymore. You kept getting lost.”

Inside, I was relieved there weren’t many people waiting. I completed the form for Peter to sign.

“Why are we here?”

“You need to have a current photo ID. You might need to prove who you are.”

He laughed. “Will I get a driver’s license?”

“No, this is only for identification.”

“Whew! That’s good. I get lost when I’m driving.”

“You get lost when you’re not driving,” I said.

“Good one,” he said, and laughed again.

After an hour’s wait, we were called. A nice young man took Peter’s information, then frowned. “Where were you born, Mr. Clarke?”

I waited to see if he would answer. He usually defers to me. A little smile tugged at his mouth and I knew he going to answer in a Cockney accent: “Bouhn in England, in’t oi, mate?” I cut him off quickly. “He was born in London…England. He’s been here on a permanent visa for almost fifty years.”

The fellow conferred with a co-worker. I knew what was coming. “Why didn’t you renew your license last year, Sir?”

“He can’t drive anymore, he has dementia,” I said. But that didn’t fully answer the question. They needed a current photo ID, even though he still looks like the photo on his license.

“Current U.S.passport?”

“He’s a British subject.”

“Current English passport or green card?” he asked.

“Not with us.” So much for spur-of-moment.

He looked at the clock. “If you can go home, get them, and be back before five, I can take care of this today.”

We made the round trip in record time. True to his word, he called us right away, and within minutes Peter had a temporary ID, with the promise that the permanent one would arrive within days.

And it did. When Peter looked at it he said, “Can I drive with this?”

“No, it’s just for identification.”

“Whew, that’s good! I don’t think I should drive anymore.”

For once I didn’t argue.

~ ~ ~ ~ ~

I stumbled across these haunting lyrics  to “Cobweb” by The Coral, an English rock group. If my husband could sing, or if I could, we’d sing this:

There’s a place where the creatures play
I’m going there at the end of the day
Who knows what I’ll find
In the cobwebs of my mind

There’s a face in a photograph
In the attic, beside the map
Closer to the tide
In the cobwebs of my mind

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From the watch-house to the marshes
Following the signs to Colwyn Bay
And ships from Eagle’s Way

We stick together through the thick and thin
Let’s go out, that’s where I begin
Now I’m lost inside
In the cobwebs of my mind

There’s a place where the music plays
I’ll meet her there at the end of the day
Who knows what she’ll find
In the cobwebs of my mind

When she moves her beauty falls
In the garden the masters call
She knows where I hide
In the cobwebs of my mind

She reads my eyes
She reads my eyes

 

Gone bananas.

Recently, I’ve had to resort to writing our names on some foods in the pantry and fridge the way I did when Carolynn and Leslie were young.

Bananas, for instance.

Last week I bought seven green bananas at the grocery — we like them green-tinged rather than brown. The next morning I saw that five ofScreen shot 2014-09-24 at 10.57.31 AM them were gone. Oh, I knew what had happened: Peter had eaten them one-by-one, but each time he pulled off another one, he forgot he’d already eaten one, or two, or three, or four.

He caught me printing my name on the remaining two. “What did I do?” he asked, wary.

“You ate five bananas since I went to the store yesterday. They are good for you, but I like them too, y’know,” I said. As  expected he denied eating them.

“I couldn’t eat five bananas!” he argued.

“OK, maybe you put them on your desk,” I said, “or hid them.”

“If I did, I forget,” he said.

And we laughed.

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Therapy goes both ways.

Several years ago, in attempt to keep Peter out and doing things with people other than me, I came up with a plan for him to take Nobby to visit local nursing homes. Therapy for patients and dog owner alike.  Win-win.

Bill, Peter’s companion, takes them and though Peter grumbles before he goes, he always comes home smiling. He loves showing off his dog. The residents he visits ask the same questions every time, so it doesn’t matter that he gives the same answers and tells the same stories week after week. He always comes back saying he’s picked his room, or that he likes one facility better than another one.

After one visit, a nurse followed them down the hall, gave Nobby an extra pat and wrapped her arm around Peter’s shoulders. “I just love y’all,” she gushed.

Peter, never one for hugs, looked sideways at Bill and whispered, “Is she talking to you or me?”

Later, Bill was still laughing when he told me the story.

 Talking points.

Martin & Anna

A couple years ago, friends in England suggested we Skype with them every few weeks. I give Peter a list of things he can talk about in case he gets stuck, which he often does, but Martin and Anna do most of the talking anyway. After the four of us chat for a few minutes, Anna and I leave the two old pals to reminisce, and I use the time, usually about forty-five minutes, to read or work outside or just sit — my therapy!

After one Skype session, Peter was extremely downcast, and that time he wanted a hug! “I can’t even talk anymore,” he said.  He shook his head and sighed. “What would I do without you?”

I struggled to think of something to make him laugh, or at least smile. “Well, you’ve never been a talker, and remember, ‘someone has to listen,’” I said, reminding him of my dad’s family-famous saying. I fixed him a cup of tea, an Englishman’s cure-all, then asked, “Well, ‘without me,’ if I weren’t around any more, which home would you choose to live in?”

He wondered what I meant.

“Which nursing home,” I said. “You often tell me you like one better than another.”

“Oh, this one!” he said.  “I’d stay right here.” He chuckled.

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Nobby and his favorite squeaky toy.

Remember to remember.

Way back in 2003 I scheduled Peter for a baseline neurological exam because he’d exhibited a number of angry flare-ups, so very unlike him. During the visit the doctor gave him three things to remember: fire truck, airplane, tree. He remembered all of them, and did well on all elements of the exam which included knowing the day of week, the date, and drawing a clock with a specific time.

A subsequent MRI showed only tiny amounts of the amyloid strands that “clog” thinking. A good sign, the doctor said.

At follow-up eighteen months later, same standard tests, but when the doctor gave him three things to remember — fire truck, airplane and house — he told her she’d changed her list from the year before. She was pleased he remembered and confessed she’d forgotten what words she usually said. He got good marks that day too, though I knew he wasn’t quite as sharp with answers to her questions, plus his usual teasing repartee was missing.

He didn’t say, but he was worried.  So was I.

Every now and then I’d ask him to remember three things I’d list, tell me the day of the week, or draw a clock.  Remembering three things became more and more difficult, he guessed at the day of the week, but he could always draw a clock.

One evening I asked him to draw a clock that showed 6:24.  I tore a page out of my little datebook for him to draw on. “A.M. or P.M.?” he asked.

“A regular old fashioned clock, silly,” I said.

His drawing is below. My scribbles at the top were to show him how a lot of people with dementia draw a clock.  At the bottom is Peter’s clock.  I complimented him on his preciseness, especially the big hand showing twenty-four minutes past the hour. “The little hand isn’t quite right,” I said.  “Close, but no cigar.” Screen shot 2014-08-09 at 12.17.21 PM_2

Nunh unh, no-o,” he said. “When the big hand is coming down, the little hand is moving ’round too. This is right!’

Why did I question an engineer? He was right, of course. The old line, Never ask an engineer the time or he’ll tell you how to build a clock, still applies.

Another year passed and it was apparent Peter wasn’t his old self. Increased memory loss, inability to come up with the words for common items, and confusion about time and place occurred daily. Worse, he was having trouble writing checks to pay bills, and doing routine chores.

Back to the neurologist we went.

She performed those same standard tests. He could no longer remember the three things, nor did he know the day, date, or year. She prescribed commonly used Alzheimer’s drugs: Namenda, to slow dementia’s progression, and Aricept to ease confusion.

Another MRI showed an increase of the “sticky stuff.” Damned plaque! I thought that was only found on teeth.

I scheduled yearly visits.

This past spring the doctor said he was “mid-stage,” though his ability to count backwards rapidly by sevens, another standard test, continues to astonish the doctor and me. I can barely count forward by sevens! But then he is an engineer, numbers and calculations are still easy for him. And he continues to do soduko and crosswords every day, though I’ve noticed a decline in both interest and accuracy.

Though the doctor said “mid stage” I’ve read ahead — he’s exhibiting some “late stage” symptoms. A month ago he couldn’t remember our granddaughter’s name when he saw her picture, he didn’t know what the garbage disposal was for, and simple one-on-one conversations are almost impossible.

Recently, he started working on his 1/78th scale Cutty Sark model ship again — he built the hull and did all the “easy” stuff years ago.  He hadn’t touched it for five years or more. I mentioned this to the doctor because it was encouraging, even though I know there’s no hope for true improvement or cure. She suggested getting him a set of Legos “after he finished the boat.” Peter didn’t react, but I was insulted for him. This isn’t a bathtub toy he’s building after all!

During the visit she asked if he noticed changes in his memory. He said he knew he was “having a hard time,” but he could never forget me. Ah, he can still layer on that olde English charm when he wants to. And the doctor laughed.

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Laugh anytime.

The next day I happened to come home from a luncheon with my name tag still in place. “Oh, I remember your name,” he said.

“You’d better!” I said.

He pointed to my tag and laughed. I didn’t see that one coming.

Laughter layered with despair.

It’s likely that my husband’s dementia was festering years before I recognized it. What I called eccentricity was probably the early stages of the disease that wasn’t diagnosed until about five years ago.

In my mind I see the disease as a pan of lasagna: love, passion, sweetness, gentleness, caring, laughter, and kindness are layered with frustration, rage, shouting, fury, stubbornness, silence, tears, and despair.

When I started writing draft posts for this new blog, Peter asked what I was doing? “I have to submit something for my Writers’ Group to critique next week,” I said.

“Nothing going on this evening then?” he asked. It was a Monday.

“Only if you’ll go to campus with me.”

“What for?”

“To work. Remember, I’ve volunteered at the Hort Gardens for thirteen years? I haven’t gone at all this spring, but if you’d come…?” I could have said, but did not, “I haven’t gone because I’m afraid to leave you alone in the evening.”

“What do they have to eat?” he asked.

I spluttered. “N-nothing, it’s…” Then I saw his eyes crinkled with laughter.

“I’ve got to stop doing that,” he said. He always says I’ve got to stop doing that when he realizes I’ve taken his teasing seriously yet again.

“Don’t ever stop trying to make me laugh,” I warned.

He laughed again. He loves it when, as he puts it, I give as good as I get. Our banter probably sounds cruel to others, but it has always worked for us, and it works even better nowdays.