‘I’m still here, but yet I’m gone…’*

At Leslie’s birthday celebration, one conversation centered on movies that induce tears. Granddaughter Samantha, a real ham when she wants to be, told us about a “romantic comedy” she’d seen that had a horrific ending.  She was indignant. She sobbed. When Leslie’s friend Kenna added her observations and her tears to the story, the rest of us howled.  I seldom cry, and “Lassie come home” and “The Fighting Sullivans” are the only movies that moved me to tears, ever.

Screen Shot 2015-10-23 at 3.02.42 PM“I’ll be me” is the 2014 film about country singer Glen Campbell and his Alzheimer’s-inspired farewell tour. It has been in theaters, but I found it on Netflix.

I watched it secretly. I didn’t want Peter to watch me watching it, even though I don’t think he would recognize himself in Campbell. I’ve slowly come around to admitting to myself that my husband has Alzheimer’s, though I say “dementia” to him if he questions why he can’t remember things. Dementia is an umbrella, Alzheimer’s, a hurricane that turns the umbrella inside out.

When Campbell was diagnosed in 2011, he chose, with wife Kim’s encouragement, to have his farewell tour filmed. He wanted people to know he had the disease, but could still sing and play guitar. “Hell, I’m not done yet,” he said.

A camera was there to follow him as his brain was scanned using the newest and most definitive diagnostic techniques. The camera was in the doctor’s office when he and Kim heard the dreaded words: “Highly probable that you have Alzheimer’s Disease.” Cameras followed him on his final tour that was to be three to five weeks, but turned into 151 performances worldwide. As long as the singer could keep going without too many hiccups his wife, children, and musicians thought he should continue doing what he loved.

My husband can’t sing, though he thinks he can, and he doesn’t have an entourage to bolster him. But his sense of humor — wacky, corny — is like Campbell’s.  Peter is handling his downward spiral the way Campbell does: hiding behind stoicism, silliness, and wild excuses. Bluffing, in other words.

Campbell is 78, a year older than Peter. The singer can no longer put words together intelligibly — aphasia — though he still plays his guitar. Peter has a hard time finding words and seldom says much, especially in a group. He’s never been a talker, so his lack of conversation is nothing new to those of us who know him.

The film was a Bandaid to my soul. Seeing that Campbell continues to clown around the way he always has, using goofiness to camouflage his fading memory, was like watching my husband. Peter’s clowning not only saves us — it’s impossible not to laugh — but it lets him think he’s fooling me and anyone else who’s around. Occasionally, a look crosses his face that says, I know I’m being silly, but it’s all I have left.

Some of Kim Campbell’s asides resonate. In two scenes, there are shots of the singer holding up plates and licking them clean. In a cutaway, she says, “I get so mad at him when he does that…I tell him it’s bad manners…I go into the pantry with my plate and sit on a stool to eat.” Later, she says tearfully, “I know he can’t help it, but I don’t like to see him that way.” Her words helped me feel better about my own reactions to  my daily triggers.

The singer now calls his wife of 32 years Mrs. Campbell. Her laugh is sad.

“I guess my message to caregivers is, stop to look on the bright side …. Make the best of a bad situation.…” When asked about the message, she said, “This film is funny…uplifting. Yes, it deals with Alzheimer’s, but it’s not a downer…not depressing. You learn a lot and it’s very educational. … We want people to know that it’s just full of laughter. Because people might go ‘Oh, it’s about Alzheimer’s. I don’t want to go see this film.'”

“I’ll be me” is funny, yes, but I confess, it’s now on my list of movies that make me cry. It is a must-see.

Screen Shot 2015-10-23 at 2.54.27 PM

*First line of “I’m not gonna miss you,” the last song Glen Campbell recorded.
Songwriters: Julian Raymond and Glen Campbell.
Lyrics © Warner/Chappell Music, Inc., BMG Rights Management US, LLC
“I’ll be me” directed by James Keach; produced by Trevor Albert and James Keach

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

 

 

 

 

Is someone here?

My longtime friend Bonnie and her husband Paul visited us for a couple of days last week. They were on their way from Florida to his high school reunion in Ohio.

Bonnie had emailed several times the weeks before. She wanted to make sure it was OK for them to stay with us. “Will it upset Peter?” she wondered. “Please tell us. We understand completely. We could get a hotel room.”

I reassured her that Peter remembered they were coming, though he wasn’t sure he remembered them. They were here two years ago and he’d met them at several of our class reunions, but as he says, he can’t remember what he had for breakfast.

During the days leading up to their visit Peter was extra helpful. We’d had workmen here for a week fixing our sagging carport. Sawdust and grime had drifted into the house, crusting everything. I vacuumed and dusted while Peter scrubbed the bathtub and tidied the flower beds. He mowed the yard almost willingly.

They arrived on time, well, a minute late actually. She texted an hour earlier that their GPS said they’d arrive at 12:11. They rolled in at 12:12. But what’s a minute between old friends?

It was a pleasant, sunny day, so we ate lunch on the terrace. Then Bonnie and I chattered and reminisced the whole afternoon like two women of a certain age who have known each other for all but the first two years of their lives. Paul chimed in now and then because he knew some of the people we talked about, and Peter listened, smiling. We carried on through dinner and sat outside until the lightning bugs’ glow wasn’t bright enough for us to clear the table.

Back inside, Bonnie pulled out the eight millimeter movie film she’d brought along. She had never seen it, but she’d checked beforehand to make sure I still had my dad’s old projector. The film showed her learning to walk and on through Christmases and birthdays to the age of six or seven.

Peter laughed at us laughing with tears in our eyes.

The next morning I was having my second cup of coffee when Peter came downstairs. He looked puzzled. “What’s going on upstairs?” he asked. “Is someone in the bathroom?”

I chuckled. “Well, it’s either Bonnie or Paul,” I said.

He was still confused.

“Bonnie and Paul…they got here yesterday!” No matter how enjoyable the day and evening had been, he could not remember that we had overnight guests.

He slathered his usual two slices of toast with Keillor & Sons orange marmalade, poured coffee into his big green mug, and sat down to read the paper. He reads the paper again every afternoon because he forgets the news he’s read hours earlier. And he truly can’t remember what he has for breakfast, even though he has the same thing day after day after day.

DSC01065

Gold Coreopsis brightens shady spots, while Black-Eyed Susan vine (at top) seems to glow in the dark.

Header photo: climbing Susans.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Is it over easy?

Here’s a laugh without tears as per my New Year’s resolution. It’s a memory from a hot sunny day to counteract the miserable, icy January scene outside my window.

DSC09657

DSC09936Vacations on North Carolina’s Outer Banks, or other spots along the Atlantic coast, have been family favorites for years. Well, favorites for all except my husband. Peter doesn’t really enjoy the beach, but he can be lured with a good breakfast first — part of our tradition. One diner we stopped at had a long, varied menu. Peter, as usual, didn’t have his glasses, though he insisted he could read the fine print. Nonetheless he kept asking the table at large, “What do I want?” as he so often does anymore.

“Order your usual,” I said. He nodded and continued squinting at the menu.

When the young waiter returned, the rest of us ordered quickly, but Peter looked at me and asked again, “What do I want?”

Leslie and I grinned at each other and, in unison, recited, “Two eggs over easy, sausage, home fries, whole wheat toast.”

The waiter was startled. After a pause he asked, “What, is this guy mute?”

It probably wasn’t all that funny, but even Peter laughed with the rest of us. The only tears were caused by laughter.

The young man got a nice tip.

DSC096562016 National Society of Newspaper Columnists’ contest finalist. 

Debit or credit?

About a year after my husband was officially diagnosed I discovered a big error in our checking account. Since I almost never wrote checks it was a double whammy — I hadn’t made the mistake, but I knew who had. Quicker than I could subtract what had been added, the bill-paying and taxes-doing landed in my lap.

I’d always relied on Peter, so good with numbers and so logical, to take care of everything involving money matters, never my forte by any stretch. Until that day I had no inkling that he’d lost those skills. Taking over those tasks was no laughing matter for me, a words person. People laugh when I say, “I don’t do numbers,” but I don’t…didn’t.

Now I do.

I found a CPA to help with the taxes, and son-in-law Martin set up automatic bill paying to ease things for me. This created suspicion, a common dementia symptom, in Peter’s mind. He did not like that I had commandeered the checkbook. He didn’t trust “automatic” and,Screen shot 2014-09-21 at 4.32.55 PM worse, he didn’t trust me, with good reason — my own bookkeeping history before we were married was abysmal. It was months before he was even moderately comfortable with the idea that I had taken over his job and that the checkbook was no longer his domain. He still doesn’t understand that the need for anyone to write checks is all but gone.

I’d write a check for any amount if I could reverse Peter’s mental decline.

He had always been in charge and suddenly he wasn’t. Not easy to deal with. Now he’s forgotten there are even any bills to pay, taxes to file, or investments to manage. And I’d never been in charge of such matters, but now I am. Not easy to deal with either. I wanted to scream and sometimes, oftentimes, I do. Or I go to the basement and throw sneakers at the wall.

Screen shot 2014-09-21 at 4.39.24 PMThen one day, I told Peter to cut-up his bank debit card because I thought it was his old, expired credit card. When I realized my mistake, I said, “I owe you an apology,”

He didn’t miss a beat. “That’ll be ten dollars, please,” he said.

 

 

Header photo: Graceful anemones, Montreal Botanical Gardens, 2010

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Bubble troubles suck.

Ever since he retired, Peter has cleaned up the kitchen after dinner, no small job when I cook. He’s always been rigid about loading the dishwasher, as an engineer would be, but now he stacks and restacks, never sure he’s done it right.

These days he doesn’t actually  wash the pots and pans, but he dries them meticulously. I grit my teeth and remind myself to wash them before I use them. Recently, I got a pan out and realized it had gone directly from stovetop to pot drawer — mashed potato bits were still inside.

It has become my job to put the detergent in the dishwasher and either turn the machine on right away or set the timer. My husband has a history of putting liquid Dawn in the dishwasher because he forgets it’s only for use in the sink. We’ve had bubble floods several times. If that happens, and I’m not close by, he panics and can’t remember how to turn the dishwasher off, nor that the wet/dry shop vac lives right at the bottom of the basement stairs.

At least, by the time the mess is mopped up the kitchen floor is cleaner that it has been in weeks! Both the liquid Dawn and Cascade powder are labeled so he’ll know which to use, but he doesn’t always read them.

Over one Christmas holiday, the guys — Peter, Martin and Bill — were to have day out. Before they left, I noticed suds oozing up in the sink. “I hope you didn’t put washing-up liquid in the dishwasher…” I said to Peter. He was positive he hadn’t and it was already cycling with no apparent problems.

Screen shot 2014-10-05 at 11.53.13 AMBut a few minutes after they left, I noticed a dribble of water on the floor in front of the dishwasher, then a frothy stream. I peeked inside. Betty Grable needed those bubbles for her bathtub scene in “My Heart Tells Me” (1943).

Carolynn was here helping fix dinner. She ran to get the shop vac, I grabbed old towels to soak up what I could, and together we attacked the bubbles and water, proud that we were coping so brilliantly!

“Mom, turn it off!” she yelped suddenly.

Water was shooting out the vac’s exhaust and spewing across the kitchen. The vac was more than half full of soapy water, so we dragged it outside — that much water is heavy — and managed to dump it down the carport steps.

Then she suggested that she hold a big leaf bag over the exhaust’s opening, a prophylactic of sorts, while I finished clearing the dishwasher. The bubbles were nearly all sucked up when she yelled again, this time while laughing hysterically. “Turn it off! MOM, TURN IT OFF!

The bag, inflated from the powerful exhaust, was pulling the vacuum cleaner into the laundry room. My daughter was skidding along behind it, while I slid to the floor laughing.

We were Lucy and Ethel in a scene even they never imagined.

 

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

IMG_0753_2

 

 

 

 

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. 

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.

DSC00541_2

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.

DSC07001_2

Nobby and his favorite squeaky toy.

Header photo: Nobby ready for therapy dog duty.

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.

Screen shot 2014-08-09 at 12.17.21 PM_3

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.