Prompt. Hint. Jog. Nag.

Bill, my husband’s kindly helper, arrived a bit early. We sat at the kitchen table chatting, while waiting for Peter and Nobby to get ready for their weekly therapy dog visit to a nursing home. Finally, Peter clomped through the kitchen.

“How ya’ doin’, Pete?” Bill asked.

Peter stopped, turned, and said, “You’ll have to ask her.” He nodded towards me. “She knows how I am.” He was laughing.

Bill laughed too. “Maybe you don’t want to know what she thinks,” he said.

Screen Shot 2016-06-15 at 11.56.06 AM

Peter carries Nobby’s leash.

“Oh, he knows what I think,” I said. “I tell him all the time.” I didn’t know what had prompted Peter’s remark, but perhaps it was because I’d had to remind him several times that he needed to put on a clean shirt and brush Nobby before Bill arrived.

There are lots of caregiver hints on-line. I’ve tried to lay out clothes for him to wear or attach a note to clean pants and shirt. I set the stove’s timer to remind him he needs to get ready. Nothing works. He will not wear what I’ve selected and he crumples my notes. When the timer goes, he calls to me saying something’s beeping in the kitchen.

Bill and I continued chatting, while Peter tried to put Nobby’s harness on. He doesn’t like me to help and yanks it away from me — his dog, he’ll do it!  Actually, Nobby is so smart I think he could buckle himself up better than Peter can these days. Not so long ago he tried to harness the tail end of the dog, and another time he fastened it in place without getting Nobby’s head through the apparatus.

All relatively little things, but frustrating to both of us —me for having to prompt, hint, jog, nag, and him for having to be…reminded.

Laugh, you just have to laugh.

Header photo: Nobby waits patiently for his walk.

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Try to remember and if you remember then follow.’

Peter held up handful of baby carrots. “These are cold,” he said.

“You just took them out of the fridge.”

“Yes…but…feel them.”

Uh oh, the fridge was playing tricks again. Sometimes the crisper drawer turns its contents into veggie popsicles. “Here, I’ll put them in the sun on the windowsill,” I said.

Peter carried on making his lunch which never varies: beef or pastrami sandwich with splotches of Coleman’s mustard and margarine, plus a few carrots, a pile of crisps, and any fruit I sneak onto his plate. He reached into the bag of carrots. “These are cold,” he said.

“Yes, look, some are thawing.” I pointed to the cup sitting in the sun.

“What would I do without you to keep me straight?” he said, shaking his head and laughing.

“I guess you’d be eating a lot of frozen carrots,” I said.

As a learn-by-doing caregiver, I try to make my husband continue to do whatever he can. If I were to let him slide, his downward progression would be much faster I believe. Friends are amazed that he still walks the dog — “Nobby walks me twice a day,” he says — and that he  mows the grass, also twice a day sometimes. And he continue to pick up sticks and comb the rugs’ fringe with whatever implement he can find.

Yesterday I caught him using an antique silver meat fork for the job. Not only was it too hefty for the aging fringe, I didn’t like the idea of using a pretty old fork on a rug. I yelped. He stormed off. I immediately felt guilty. He was back within minutes to ask if I needed any help.

“Why don’t you walk Nobby?”

“He walks me twice a day.”

“I know. He’s ready to take you right now.” The dog flopped his tail hopefully.

“Oh, wait, you could get fish while you’re out,” I said. I’d written down what I wanted from the fish ladies.

“Where are they now?” he asked.

“Across from the rugby field…”

“Right, I remember. What do you want again?

“It’s on that paper. Take it with you.”

“Don’t worry, I will. Where are…?”

“Across from the rugby field.”

“Right.” Nobby led Peter out of the house. The door slammed.

I sat down in front of the computer. I had a few minutes to write! The door slammed again. I heard Peter behind me. “Across from the rugby field,” I said without waiting to hear the question. He chuckled. The door slammed.

Keeping my cool is nearly impossible sometimes, but when I think how frustrating it must be for him to try to remember simple instructions, I simmer down.

IMG_3685

Carrots thaw, Peter mows, and in his right hand, he holds a bunch of sticks.

Header photo: Carrots in the sunshine.

2016 National Society of Newspaper Columnists’ contest finalist. 

‘So far, so good.’

The insurance company nurse comes twice a year to assess my husband. One of her questions is, Can he bathe himself, brush his teeth, toilet himself? She asks Peter, but looks to me for answers.

I know he scoffs silently at the mere mention of the topic.  My answer is always an enthusiastic yes. On that point I am — we are — way luckier than many who live with any form of dementia.

Peter has been taking multiple showers a day for the past year or so. This wasn’t always the case. I used to have to remind him he needed a shower, but now, if he sweats even a tiny bit, he reacts as if he’s been dipped in pond scum. “I’m all sweaty,” he’ll say as he races through the house and up the stairs.

He almost never puts on clean clothes afterwards. I don’t understand, but I don’t question, glad that I don’t have to help him bathe nor wash piles of clothes…yet. For some reason, wearing a shirt that is damp and stinky doesn’t bother him. It’s the sweat itself that is his bugaboo.

The rest of the personal hygiene issues aren’t issues yet. From the articles I’ve read, I know what’s coming.

Peter always says, if asked how he is, “So far, so good.”

“It could be worse,” is what I say if anyone asks me.

Screen Shot 2016-07-23 at 1.41.41 PM

 

2016 National Society of Newspaper Columnists’ contest finalist. 

Mow and mow and mow the grass.

Keep him doing chores that he can still do is my motto. Gives him a sense of purpose and helps me. My husband can still empty the dishwasher, clear up after dinner, sweep the terrace, mow the grass. He no longer hauls the garbage bins out to the street because he forgets which way they face. Easier for me to do it than to explain.

Each  of his chores has become problematic for both of us. When he empties the dishwasher I put away the odd things he doesn’t recognize — juicer, salad spinner, flour sifter — and after we eat I must put leftovers away or he’ll throw them out.

Version 2

Cotton-tailed trimmer.

Mowing the yard has become an all-day event. If I remind him that the grass needs cutting, and if he’s in the mood to do it, he’ll mow front and back, come in complaining how hot he is, take a shower, then go back outside and start to mow all over again. When I catch him to tell him he already mowed, he argues. I point out the freshly manicured lawn, but he doesn’t believe me. He is hot though, so he showers again, and tries to mow a third time.

Or not.

A week ago I couldn’t get him to cut the lawn at all. When the grass was nearly at mid-calf, I threatened. He mowed the outer edges of each section, but left the middles. He put the mower away. I asked him to finish mowing. He would not. Suddenly, he went out and started the mower. He was going round and round the front when it started raining. Blinding sheets of rain. He would not stop. He kept going and going and going, an Energizer bunny. He was drenched. “No reason to quit once I got so wet,” he said with a silly smile when he came in the back door.

He headed upstairs to take another shower.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

A last hurrah?

“Where have you been?” Peter asked. It was the wee hours of Monday morning and he was just getting into bed.

“Los Angeles…I just got back,” I said. “The plane was late.”

“Why were you there?”

“Columnists’ conference, remember? I marked it on the big calendar downstairs.”

“Hm-m,” he muttered and, lights out, he was asleep. So much for a welcome home hurrah.

Leslie had been in charge my four days away. She (and Carolynn, too) can handle Peter, often more easily than I can. She’d been asleep on the couch and went home as soon as I came in.

When Peter came downstairs next morning, I said, “Gooood morning,” as I do every day.

He affected his fake startled look, as he always does, and said, “Oh, hello…I thought you were away.”

“I came back…two o’clock this morning,”

“Where were you?”

“L.A.” I said, pointing to the calendar on the kitchen counter.

“Mm-m, that was a long time ago. I don’t remember.” The previous Thursday was ancient history in Peter’s mind

I didn’t expect him to remember, but still it rankled. “It was one of the most exciting things I’ve ever done,” I said. I wanted to tell him about it, but showed him photos on my phone instead.

“I’m sorry, there’s just nothing in my head anymore.” He sighed and knocked on his forehead with his fist.

“But it doesn’t sound hollow,” I said and we laughed.

I didn’t even try to tell him that I’d won the number two spot in my category. Or that the award came with two hundred dollars or that I sat next to my idol Leonard Pitts at dinner.

IMG_3374When I showed him this photo of Los Angeles’ infamous rush hour traffic, he asked, “Who would want to face that every day?”

“Not me,” I said. “Coming downstairs is as far as I want to travel to go to work.”

 

 

Header photo: Mid-night rose.

2016 National Society of Newspaper Columnists’ contest finalist. 

‘Consider yourself reminded.’

He stood at the kitchen table and puzzled over the red envelope I’d tucked inside the morning paper. “Is it my birthday?” he asked as he opened the card. It showed two goldfish smiling at each other from their side-by-side bowls. When he jumps into her bowl they live happily ever after, presumably.

Right month, wrong date. “No, Valentine’s Day,” I said.

“Oh, I didn’t know. Why didn’t you remind me?”

happy-dancing-red-heart-cartoon-isolated-on-white-background-valentine-s-day-greeting-three-dimensional-character-render_123656113I pointed to his message board where I’d put frolicking red hearts every day this past week. He shook his head and shrugged his apology. In fairness, the card isn’t a Valentine, strictly speaking. It’s teal and gold, not red and pink, and it’s a general purpose card about happiness. It could be a birthday card.

I picked it because of the goldfish. They’re known to have exceptionally short attention spans. Peter is my goldfish.

Leslie, on the other hand, delivered a red and pink, glitter-encrusted card that said, “Happy Valentine’s Day…consider yourself reminded.” She often reminds me to be as direct as possible with my husband, no complicated explanations, no double meanings. He had no trouble remembering  she’d brought a shiny red, heart-shaped box of chocolates. We each had one with our breakfast porridge.

I said it was OK that he didn’t remember the day. “You gave me the best present Wednesday…”

“I did? What was it?” He looked pleased with himself.

“…extra-special hugs after our dinner at India Garden.”

“Why’d I do that?”

“We hadn’t been there in a while. You cleaned your plate and mine, it tasted that good to you.”

“I don’t remember.”

“We’ll go again before too long. Maybe I’ll get more hugs…?” I batted my eyes.

He took the hint and hugged me. “Don’t get used to this,” he said, as I knew he would.

Maybe there’s something to be said for predictability.

IMG_2369

Chocolates for breakfast. What a way to start the day.

2016 National Society of Newspaper Columnists’ contest finalist. 

Tail of a dog.

Almost every Wednesday for the past four years, Peter and Nobby have visited area nursing homes with Bill, Peter’s faithful companion.  Nobby is the star of the weekly events, of course, and he luxuriates in the cuddles.

Last week, Bill arrived on time, as he always does, and Peter was ready, though he usually is not. As they headed out the door, I yelled, “Haven’t you forgotten something?”

Peter turned. “I don’t think so…,” he said.

I pointed to Nobby. “What about him?”

“Oh, is he going?” he asked, as if this were something new.

Well, yes,” I said. “It’s Wednesday.” Peter shook his head, disgusted with his drifting memory. Bill and I couldn’t help but laugh at the thought of Peter walking into the nursing home, red leash in hand and no dog attached.

DSC00223

More and more often these days I have to remind Peter — make that nag — that it’s time for Nobby’s walk. This morning, Nobby waited patiently by the basement door. When I called to Peter, he said, “Yes, yes, I’m coming.” Nobby flip-flopped his tail hopefully.

Finally Peter came up from the basement. I heard him fiddling with the leash. After a spate of muttering from Peter and a few yelps from Nobby, I went to investigate. They were in the laundry room. Peter was laughing so hard tears were streaming down his face. “Helped when I put the leash on the right end,” he said, sputtering.

“What, you mean you put it on his back end?”

“Yes, and he didn’t like it.”

“Poor dog! I’m sure he didn’t!” I said. “How would you like a harness around your nether region?”

Peter grimaced. Nobby got two treats.DSC00224_2

Header photo: Nobby at Pandapas Pond.

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

Screen Shot 2015-09-08 at 10.12.51 AM

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

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. 

 

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©

2016 National Society of Newspaper Columnists’ contest finalist.