Always read the fine print.

Early in May, for some reason, it occurred to me to check the expiry date on my English husband’s permanent resident visa, previously called “green card.” Good thing I looked — expiration, May 28, 2015.

Ten years ago, we had a nice day trip to Charlotte, NC to renew both his card and his British passport. This year, a trip anywhere is an ordeal, so I did a search to see if USCIS is doing on-line registrations. Yes-s!

There was a stumbling block on the very first page. Peter couldn’t remember the year he came to the U.S, but he knew he was 28, so he added that age to his birthyear, 1938, and came up with 1966. (I was pretty sure he “got off the boat” eight years before we met in 1974.) The month and date, port of entry, and other necessary details like his alien registration number were lost in his fog. Finally, I broke the code of alpha/numerics on his passport and deduced he arrived in New York City on Wednesday, November 9, 1966.

Over several days I filled in the six pages. When, I called Peter to read over the document, he stumbled over his mother’s first name, Mabel.

“Everyone called her Doll,” he argued.

“Yes, but that was her nickname,” I reminded him. “Her given name was Mabel.” After some discussion he agreed.

When he read through his own physical characteristics he said his eyes were not hazel. “What color are they then?” I asked, deleting hazel.

He went to the mirror and after studying his eyes for some time, he said, “I’d call them bluey/browny/green.”

I typed h-a-z-e-l into the blank again.

After he’d read the fine print and signed electronically, he asked, “Am I good forever now?”

I told him he’d have to renew in ten years. “But, you’ll be 87, so they probably won’t chase you down.”

“You mean without the card, I could’ve…”

Peter with his favorite pint, London Pride.

Peter with his favorite pint, London Pride.

“Oh, darn,” I laughed, picking up on his thread, “yes, you might have been deported if I hadn’t realized your card was going to expire. You could have been shipped back across the pond to spend the rest of your life in the corner pub… singing your bawdy songs…and…”

“Playing ‘arrahs’,” he said wistfully. [Arrahs = arrows = darts to my Englishman.]

“Sorry, I already I clicked ‘send,'” I said. “But in 2025, if immigration still wants you, you can go back ‘ome.”

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Header photo: Peter enjoys the gardens, Isles of Scilly, England, 2009.

2016 National Society of Newspaper Columnists’ contest finalist. 

Always something new to remind him.

A bubble flood in our kitchen several years ago started a sticky note tide in our house. That sudsy event showed me that I needed to be more vigilant. It was time, past time really, to attach little reminders around the house for Peter. First were the under-kitchen-sink soaps. Then came notes on certain light switches, followed by color-coding to match keys to doors — red for one set, purple for another.

Soon, tv remote, wastebaskets, dog food bag, garbage disposal switch, bottle of hand soap, toothbrushes all had instructions stuck on or  near them.

A small dry erase board propped near the coffee maker each morning announces the day, DSC00769_2date, and year with reminders about activities and appointments for that day. Several years ago I tried an extra large calendar for Peter to fill in, but he couldn’t, or wouldn’t, do it.  Calendars were useless, he complained. In truth, in years past when he wanted to keep track of things or plan a trip for instance, he did an engineering timeline. Fair enough, I never understood his timelines anymore than he understood calendar squares.

Now, once again, a large calendar resides on the kitchen counter. Difference is, I fill in the spaces and I outline significant dates in red — birthdays, Valentine’s day, Christmas, our anniversary. Waste of red ink, that idea.

Every few days Peter asks if I need something from Kroger’s. He’s always Screen shot 2015-01-17 at 4.03.05 PMliked grocery shopping and he can walk there with purpose and, more importantly, he doesn’t get lost. I give him a little sticky note, even if there’s only one thing on it. Three items are his limit, but even so, most of the time he doesn’t remember he’s got a list and will come home with an odd assortment he thinks we might need — yogurt, a few bananas, a Hershey bar. He always insists the latter must have fallen into his bag because he certainly didn’t buy it. I laugh at the thought of all those Hershey bars jumping onto the check-out conveyor and sliding into his bag.

Now, I’ve started putting bright notes inside some of the kitchen cupboards to remind him where certain things go. The salad spinner for instance. I use it several times a week. It lives conveniently in the cabinet toDSC00756_2 the left of the sink. Peter always empties the dishwasher, but lately he’s started stashing the spinner wherever he sees an empty space — in the cupboard where seldom used things reside, or maybe in the laundry room pantry. When I’m fixing dinner I do not want to look all over to find this essential tool. One day I’ll break something with all the door- and drawer-banging that accompanies my searc

I do know that washing lettuces for a tossed salad is significantly less of a problem for me than trying to cope with his tossed mind is for Peter. I try to keep that thought in my mind when I get frustrated with him over something so silly as a salad spinner.Screen shot 2015-01-17 at 3.58.28 PM

2016 National Society of Newspaper Columnists’ contest finalist. 

Times change… years go by…

Thirty-three years ago today, Peter and I married with my daughters, Carolynn and Leslie as our witnesses, and a fellow Ohio University grad, Reverend Timothy Behrendt, as the officiant. Just us, on a snowy upstate New York day. Friends contributed to the raucous party that followed.

Our marriage was a long time in the making — seven years from the magic night we met. A lot of urging by family and friends, extreme measures by me, and a final ultimatum finally convinced Peter. For the past several years, he hasn’t remembered the day at all. When we agreed upon easy-for-an-Englishman-to- remember Boxing Day, we didn’t reckon on dementia moving in.

I wrote the ceremony, and borrowed from several poems, little knowing how prophetic they would be:

You are here, Carolynn and Leslie, to witness and to celebrate the coming together of two separate lives, to join Peter and Judy in marriage, to be with them and rejoice with them in making this important commitment. The essence … is the taking of another person in his or her entirety as lover, companion, and friend. It is therefore a decision which is not to be entered into lightly, but rather undertaken with great consideration and respect for both the other person and oneself.

So today we acknowledge the decision that Peter and Judy have made to share their lives with each other and with you.

Sharing, not at the expense of each other’s individuality, rather sharing by enhancing your own uniqueness through the strength of a common bond. Marriage represents a mutual arrangement in which each is the guardian of the other’s solitude. To affirm the distance between each other is to affirm the dignity of friendship in which each helps the other to grow continually, to be different, and to be alone at times.

Too often love is thought of as the answer to loneliness. Love is put in opposition to loneliness and is thought of as the antidote to the experience of being lonely. “Love, in fact, is a kind of loneliness. Really, to love is always to accept the otherness, the mystery of the other, and to refuse to violate that mystery…

It is a sign of great strength, rather than weakness, to let other people be and not interfere with the choices they wish to make.

Very likely then, the “Highest type of sophistication is love, namely the ability to let that which is different exist and be itself. True, that means an inevitable loneliness —but the loneliness of love is far to be preferred to the togetherness of blandness and characterless-ness.

To experience one’s aloneness is to experience who one is. Real love is the ability to say “no” to everything that seeks to dilute love into a kind of togetherness and to protect us from our solitude, while violating the solitude of another.”

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This year, again with son-in-law Bill’s guidance, Peter picked out a perfect anniversary card for me that read, in part, “Times change, life goes on, years go by …”

Well, ain’t that the truth?

All our lives together, forty years total, my husband has never done schmaltzy cards except for Christmas, our anniversary, and occasionally, my birthday. Now he has to be reminded several times over that those dates are coming up.

I, knowing he doesn’t like “sappy” sentimentality foisted on him, always buy a silly, jokey card. This year the cashier and I hiccuped with giggles at my choice: “Sometimes when we’re lying in bed, I look over at you and think, ‘I am so lucky…’ then you start snoring in that snorty way, and I think, ‘Well, that’s annoying, but I’m still lucky.'”

And I am.

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2016 National Society of Newspaper Columnists’ contest finalist. 

Yesterday was not a good day.

Peter could not remember how to do the simplest of jobs, he was grumpy because I was “telling him what to do,” and I was grumpier because I had to repeat myself endlessly. Meanwhile nothing got done.

Besides, it was an ugly windy day, completely unlike what the weather forecaster predicted.

Late in the afternoon, Peter came to me and asked, “Is there anything else I can do wrong?”

He had a plaintive smile, and of course I melted. “I’m sorry I’ve been so grouchy,” I said.

“No, you haven’t, don’t even say that,” he said. He wrapped me in one of his increasingly rare hugs.

“But you didn’t do anything ‘wrong,'” I said, “you just didn’t do anything.” He loves it when I jab him.

He laughed and danced around the kitchen like an elf. “Ya got me!” he said, and everything was alright again.

Header photo: Wildfire damage in Wyoming, 2011.

2016 National Society of Newspaper Columnists’ contest finalist. 

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

 

Header photo: Cobwebs envelope our beriberi.

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

Header photo: Nobby ready for therapy dog duty.

2016 National Society of Newspaper Columnists’ contest finalist. 

License to ride.

As Peter’s seventy-fifth birthday approached in 2013, he kept the DMV reminder to renew his driver’s license beside his chair. The family had been nagging me to convince him to stop driving, and I knew I had to do it. He’d gotten lost several times, and was no longer confident behind the wheel. The man who used to drive thousands of miles a year for work could no longer back out of our driveway.

His birthday arrived and he’d done nothing. As gently as I could —I tend to be too blunt — I reminded him his license expired that day and asked why he hadn’t renewed it. “I don’t know,” he said sadly. And it was as easy as that. He gave up. I think I was as sad as he was.

Laughter is a gift.

The driver’s license issue upset me so, that I hadn’t even thought to bake his annual carrot birthday cake. “I’m sorry,” I said.

Peter, 70, Nobby, 3 months.

Peter, 70, Nobby, 3 months.

“If you hadn’t reminded me I wouldn’t have known it was my birthday!” he said. I asked if he knew how old he was?

“How old is Nobby?”

“Five,” I told him.

“Then I’m seventy-five.” He remembered the dog was his seventieth birthday present and he did the math.

For a time I hid our car keys in case he forgot he wasn’t licensed to drive anymore, but then that need vanished. Now I hide them because if he sees them he picks them up, then loses them somewhere in the house.

Next I needed to sell his little sports car, a car he’d bought without considering my views, a car he really was never able to drive well, a car that, as long as he was driving it, he kept washed and waxed so that it glimmered, jewel-like, in British Racing Green splendor. He was not happy about selling it, of course, but he knew it was foolish to keep, though he would never admit it.

The car sat at the end of our driveway, its brilliant shimmer dulled by grime. I’d never driven the car — always a bone of contention — so I certainly wouldn’t drive it to the carwash. Since Peter no longer cared if it was clean or not, I finally replaced the usual FOR SALE sign with one of my own:

FREE! FREE! FREE!
Pollen! Dust! Bird droppings!
With purchase of …

After several months’ trying, with son-in-law Martin’s help, I had a buyer who didn’t mind the dirt. And I cried, not because the car was gone, but because Peter could no longer drive and he seemed not to care.  The buyer handed me his check, then gave me a hug before he left.

The next weekend, I was weeding in the front yard when Peter ran out of the house. “Where’s my car? What’s happened to it?” He yelled, wild-eyed.

Oh no! I’d tried to be so circumspect about selling his car so that it wouldn’t come to this. “Remember, I sold it this week…?”

“No, no, I don’t mean that one,” he said, still panicked, “I mean the other one.”

“Right there!” I pointed to his battered red PT Cruiser in the driveway.

“Oh! Whew!” He went back inside and that was that.

Now I do all the driving, and although I gritted my teeth at first because I had to take him everywhere, it quickly became part of my routine. In a way, I get the last laugh because now it’s Peter who sits in the passenger seat, pumping the brakes. He doesn’t give directions though — I always was the navigator — because he never had a sense of direction, and now he doesn’t know which way to go at all.

Header photo: Nobby, six months old, June, 2008.

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

 

 

Header photo: Rainbow on the eastern shore, Virginia, 2013

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

Header photo: Peter,  North Rim, Grand Canyon, September, 2011

2016 National Society of Newspaper Columnists’ contest finalist.