‘Will I see you tomorrow or the day before?’ he asked.

These days Peter often wears two shirts because he doesn’t remember he already has a shirt on. Sometimes he wears two socks on one foot, sometimes no socks at all. The other day he fished around in his pocket and finally pulled out a cracked white plastic spoon, a mechanical pencil and a tan sock with red, white and orange stripes. He studied the sock, shrugged, then used it as a handkerchief. I couldn’t help it, I laughed and laughed and he did too.

Sometimes laughter is all you’ve got.

I knew his hankies were well past their use-by date, so I bought new ones. When I took them to him he was as thrilled as if they were woven with gold threads. A day or so after that, he pulled out all eight of the new handkerchiefs, still neatly folded. Maybe now he’ll put the socks on his feet, rather than in his pocket, but I wouldn’t bet on it.

As days go by my husband loses more and more words and his voice is fading, not that he was ever very loud or even very vocal. He’s long since forgotten my name, as well as family and friends’ names. That makes me sad, but it wasn’t unexpected. Now though he doesn’t know his dog’s name—Nobby. That’s very sad. Even more surprising, he can’t remember the name of his favorite Disney character either—Mickey Mouse!

Laughter can make sad things better…sometimes.

When I walked in Sunday Peter was sitting in the lounge holding a can of Pabst Blue Ribbon. I’d brought his favorite McVitties Chocolate Digestive biscuits to have with tea. “Do you want to finish your beer and wait awhile before I make tea?” I asked.

“I don’t have a beer,” he huffed.

“What’s that in your hand then?”  He doubled over laughing. I suggested he set the dominoes up while I fixed tea.

“OK, but I don’t know where my room is, do you?” He was surprised when I said yes. We only played three hands. Generally he plays well enough with a little prompting, but he was struggling.  He seemed tired.

“Let’s finish this game next time,” I said, gathering my things. “But remember, you’re ahead by thirty points,” I told him.

“Will I see you tomorrow or the day before?” he asked.

“Today is the day before,” I said. He smacked his forehead and laughed again.

“Good thing you don’t make calendars,” I said. He shook his head and waved me off.

Sometimes laughter really is all you’ve got.

Header photo: Peter holds his beer.

 

 

 

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Two points for a pair.

Sir John Suckling invented cribbage in early 1600s England. The game, still popular in pubs, is played with one deck of cards, a cribbage board and colored pegs with which to keep score.

Cribbage is somewhat complicated, but even more than the game itself, the odd terms and conventions confuse beginners. This isn’t surprising considering that the country of origin gives its villages such whimsical names as Pucklechurch, Nether Wallop and Great Snoring. Cribbage terms—his Nob, box, the crib, right Jack and Muggins—confuse as well.  A Muggins, for example, is called when a player doesn’t calculate her score correctly— the difference in points is awarded to the opponent. Good thing for me we’ve never followed that rule.

Peter and I used to play a lot of cribbage. He teased relentlessly when I forgot whose turn it was to play after a “go” or whose turn to cut the cards or, for that matter, even to remember when to cut the cards. In my never ending attempt to keep him engaged now, I wondered if he would try to play again. He surprised me.

Without going further into the myriad details and quirks of the game—this isn’t meant to instruct after all—I’ll just say that Peter plays way better than I thought he would. He remembers to offer the dealer, me, a chance cut the deck and to cut for the “turn-up,” while I remember which direction to peg. He never remembers which color is his and often—on purpose I’m sure—moves my red peg ahead if he and his blue peg are behind.

At first he didn’t seem to remember that a hand with four ten-count cards, a five, and a five turned up was an “even ‘doz,” his words for 12 points. But when I used the phrase I saw the tiniest spark in his eyes that said, oh-h, yeseven ‘doz

Mickey M  kibitzes.

When I forget to add extra points for a hand that is all the same suit (four) or that also matches the turn up suit (five) Peter reminds me with a sly look. I never have been able to remember that when “his Nob” is turned up the dealer gets two points.

He’s remembered the custom to knock sharply on the table to signal either that he can’t play or doesn’t want to cut. Another niggly convention I seldom recall.

It has worked out that whenever we play one of us remembers what the other forgets. Peg two points for the pair we are!

One day I suggested we play Rummy for a change. Nearly every hand, Peter forgot he needed to lay down at least a run of three or three of a kind. It confuses him when I remind him that he can draw from the discard pile if he wants a certain card and is able to play it with something in his hand. I’d just discarded a queen when he asked, “Can I pick that Queen up?”

“Yes, but you have to play her with at least two other Queens, or the King and Jack of hearts.”

He studied his hand then, with a flourish, spread four Queens and three tens across the table.  “OUT!” he said.

I sputtered. “You fooled me again, you cheeky bugger.”

He loves to make me laugh and I love that he still tries.

Header: Peter and Nobby are featured on cards we use.

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Better than a dozen roses.

The weekend was perfect for so many reasons. First, Leslie orchestrated a tea party Saturday on the porch at the end of the corridor where Peter lives. Grandson Miah was the surprise guest. What a treat all ’round.

Then, on Sunday, I organized a walk in a favorite park for Peter, Nobby and me. My husband actually remembered having been there, “Once,” he said. I told him we’d been there many times over the years.  “Many times?!” he asked with raised eyebrow. He shook his head. Nobby remembered too, romping as if he were still a puppy instead of an old fellow of ten.

As we meandered back to the car, Peter lagged behind. I kept glancing over my shoulder to make sure he was following — he has a history of getting lost or hiding to scare me. When he caught up, he held up a bouquet of maple leaves. “Would you like to have these?” he asked. His eyes twinkled and he had sweetest smile.

Would I ever!” Thank you,” I said and took his hand, something he usually hates. He actually leaned in to kiss me but knocked both of our caps askew. A laugh, a kiss and a bouquet on a beautiful orange and red afternoon. Better than a dozen roses any day.

I took the scenic route back. Peter laughed when I said I thought we were lost. “You never get lost,” he said, and indeed I don’t and I wasn’t lost then. Then I told him I was more worried about being low on gas. That really made him laugh because he remembered how much I hate to pump gas.

When I opened the door to his room he looked shocked. The space was unusually tidy and the bright potted mum in the window glowed in the sunshine. “Is this where I live now?” he asked. I nodded. “Good!” he said. He took his jacket off, tossed it on his bed, and gave me a hug.

I tuned his tv to a soccer match, parked him in his chair, and headed home to put my fanciful bouquet in water and reflect on the glorious autumn weekend.

Outside looking in, Nobby seems to approve my maple syrup “vase” and fetching bouquet.

 

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New broom sweeps even better.

Peter clears the litter from the porch.

A nurse sat at the end of the hall when I approached my husband’s room yesterday. “Peter’s outside,” she said as she walked toward me. “He’s had a bad morning…very out of sorts….”

I held up the new broom I’d brought. “He was so thrilled to be able to sweep up grass the other day,” I said, “but he complained he needed a bigger broom. This ought to do it.” She nodded her head and said he’d told everyone that he got to sweep.

She added that she’d just given him his morning beer. I suggested tactfully that a cup of tea usually works better when he’s upset. “Beer with his lunch would be a better idea,” I said. She went off to change the orders—PBR with lunch, Guinness after dinner.

Outside, I saw him at the far end of the garden. When I yelled his name he looked up and laughed. “What are you doing here?” he asked, trotting in my direction. I brandished the new broom. “What’s that?” he  asked.

“You said you needed a bigger broom.” He grinned as if it were the best present ever. “This space really needs to be swept,” I said, as I nudged him toward the porch where we often sit.

Well, that’s all it took! He went right to work sweeping leaves and twigs off the cement and even whisking the seat cushions clean. He also managed to polish off his beer and the coffee I’d brought, before he tracked along the sidewalk with that bright red broom. He was in a much happier mood when I left for my dentist appointment, and so was I.

This morning I learned that Peter’s down mood had returned in the afternoon. Again he asked over and over why he was there? When I got home from the dentist, probably about the same time he had the second meltdown, I looked around at the mess “Florence” had made and wondered how I’d cope on my own without my champion sweeper and all that autumn brings. But my thoughts are selfish compared to those my husband is trying to sort out in his fractured mind.

 

Header: Bittersweet is lush this year.

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Old broom sweeps clean enough.

For several days last week Peter was in a real funk or “gray space” as Elaine Eshbaugh, PhD explains in “Sitting in the gray in dementialand.”  My husband would not be, did not want to be, soothed. Furthermore he didn’t want to be “there,” although he wasn’t sure where “there” was. “If you like it so much here you should move in and I’ll find someplace to go,” he snarled. The smiling granddad I wrote about here had vanished “into the gray.”

No caregiver who has made the heart-wrenching decision to put a loved one in a nursing home’s memory care unit ever wants to hear, I want to go home. All I could offer was, “I know you don’t want to be here. I don’t want you to be here either.” At his murderous glance I added,”But I can’t take care of you at home any more. This is the best place for you, the best place around.”

Then I made him a cup of his favorite Typhoo tea sent from England by a longtime friend.

Today was different.

When I tapped on his door about 10:30 this morning he had his winter jacket on. “I’m just leaving,” he said. When I asked where he was going, he admitted he didn’t know, but pointed out the window. “Just look at that,” he said. The sidewalk in the garden was grass-covered from recent mowing job.

“You want to sweep that up, don’t you?” I asked

He nodded. “I don’t have a broom though.”

Well, that I could fix. I asked a nurse if there was a broom I could use. She found one and out we went, Peter with the broom, me carrying his wastebasket. I fashioned a piece of cardboard into a make-do dustpan while he swept. He grumbled about needing a bigger broom and added that he should get paid. I laughed and he did too. Around the other side he pointed at the padlocked gate near the gazebo. He wanted to know if anyone used the gate. I don’t think so, I told him. As if he were a mischievous ten-year-oid, he swept a little pile of leaves and grass under the gate with a flourish. Maybe you had to be there, but we thought it was very funny.

Not so very long ago I complained about him sweeping our terrace constantly, even though I understood. He needed something to do, to be useful. Today I was overjoyed to see him so happy…doing something…being useful.

It’s the little things.

 

Elaine Eshbaugh, PhD is an associate professor of Gerontology and Family Studies at Iowa State University. Her blog, “Welcome to Dementialand, Living, Loving, and Laughing through Alzheimer’s and related Dementias” offers helpful advice laced with her own brand of humor.

Header photo: Lonely little petunia in a green tomato patch.

 

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Channeling Henry VIII.

This bit of gallows humo(u)r is, well, an interlude in our own Shakespearean tragedy.

Sunday’s visit with my husband was difficult, especially since I’d gone to see him after a pleasant few hours’ brunch with my friend Karolyn. She and I had empathized and giggled over our similar lots in life. When I left I was in a good mood, but when I arrived at the facility where Peter lives and headed toward his room a nurse coming towards me shook her head. “Peter has done even more packing up this time,” she said.  And good morning to you too, I thought. I let that slide for the moment.

Peter was in the dining area, just finishing lunch. He did his usual surprise act when he saw me. “Oh, it’s you!” he said. “Where did you come from?”

“Out there.” I pointed to the entryway. “Are you finished? Have you had dessert?” There was still food on his plate, not surprising since he doesn’t like the meals.

“Oh, yes” someone said,”he had a scone with a beer in one hand and a cup of coffee in the other.”

“A scone and a beer? What would your old granny say?” I asked. He shrugged and gave me his exaggerated fake wink.

It was a pleasant day so we went outside to the gazebo. After a few minutes of idle chat, I took a deep breath and prepared to have another Talk with him. A month ago he’d asked if he would ever get out of “this place.” Since he’d  asked directly I answered as plainly as I could hating, hating, that I must do it. I explained again that because of his falls, plus his wandering and getting lost, I couldn’t take care of him at home anymore. “I can’t lift you when you fall,” I said, “and I couldn’t always find you when you got lost.”

“But I don’t fall,” he said, “and I’ve never gotten lost.” I raised my left eyebrow. “Well, I don’t remember if I did.”

“I know you don’t remember, but that’s part of the problem. But you can’t help it.” I put my head on his shoulder and patted his knee. “I know you don’t want to be here and I don’t want you to be here either. But this is the best answer to a bad situation.” He was quiet. Tea, I thought. A cuppa cure-all. “Let’s go in and I’ll make us a cup of tea,”

I was shocked when I opened the door to his room. The nurse was right. He’d created even more mayhem than usual. This was the day same he’d gone so far as to hide his tv set. I bit my tongue to keep from saying what was on my lips. “I’ll make tea after I tidy up,” I said.

“I’ll help! What shall I do?” he asked. I nodded towards the bed where he’d stacked every single thing that that would fit. “I’ll put these clothes away, shall I?”

“Good idea,” I said. He hung up his shirts neatly, making sure they were buttoned and straight, while I put everything else away. Forty minutes passed before I fixed tea.

Peter frowned while he sipped, lost in thought. “It’s funny,” he said finally, waving his arms around, “I’m healthy all over the rest of me body. It’s just me head. I can’t remember anything.”

“We could chop off your head!” I said.

As quick as ever in his best Cockney accent, he said, “Off wif ‘is ‘ead!” And with no hesitation, he began to belt out,

I’m ‘Enery the Eighth, I am,
‘Enery the Eighth I am, I am!
I got married to the widow next door,
She’s been married seven times before
And every one was an ‘Enery
She wouldn’t have a Willie nor a Sam
I’m her eighth old man named ‘Enery
‘Enery the Eighth, I am!

We laughed and laughed and, for the moment, nothing else mattered.

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He’s still my cup of tea.

The Cambridge English Dictionary definition of kettle reads: kettle, noun, a container for boiling water, that has a lid, handle, and spout and is made from plastic or metal. put the kettle on. to start to boil water in a kettleIt had happened twice before and was only a matter of time before it happened again. Since his life-changing crash last month Peter has seldom made tea without my supervision. Monday evening I watched him, hawk-like, from the family room as he made tea without me hovering. I saw him fill the kettle, put a tea bag into his cup, and set it beneath the heat lamp above our stove. He stood in front of the stove longer…than…I…STOP. DON’T DO THAT!” I yelled. Peter had turned the gas on and set the electric kettle on the flame. By the time I got there, the kettle’s plastic bottom had melted. It resembled a reentry module from a space shuttle. He’d managed to turn the gas off, but didn’t really understand what had happened.
“This is an electric kettle,” I said, more frantically than I should have. “You ‘fried’ it,” I added, attempting a feeble joke.
“It’s fine,” he said, “still works.” I shook my head, showed him the damage and dumped the kettle into the trash.

“No tea tonight,” I said, guiding him back toward his chair.

Ten minutes later he got up and asked if I wanted a cup of tea. I reminded him the kettle was toast but he didn’t understand that little joke either. “Burned up…like burned toast,” I said.

Yesterday I shopped for a another kettle. I thought about an old-fashioned stovetop one, but bought another just like the electric one we’d had.  Then I second- guessed myself and continued shopping, this time for a regular kettle like the one he’d grown up with.

Later, after showing him the new kettle that whistled like his ol’ granny’s did, I urged him make a cuppa. When he held the kettle over the cup to pour, he forgot to pull the whistle cover back. Most of the water went onto the stove and counter top. He tried again, with similar results but with me beside him to prompt.

Then, before bed I went to prepare the coffee maker for this morning. A smell? SMELL…OMG GAS!  I hadn’t supervised his last cup of tea and although he’d turned the knob to the left as he should, he hadn’t turned it all the way to “off.”  Gas hissed, though I couldn’t hear it in the other room, and I didn’t smell it until I was in the kitchen. I think Nobby knew something was wrong. He’d been nudging us for some time as he often does in the evenings. I think he was trying to warn us that we needed to get up and fix it.

When I explained to Peter what had happened, I tried to make light of it. “Good thing we aren’t smokers!” I said. He didn’t get that either, but he was quite pale. Then I remembered what I never would’ve thought my husband  would remember. His granddad Alf, then in his mid-nineties, had started having trouble making his tea. The final shot that forced Peter’s dad, John, into finding a nursing home for Alf was when he found the kettle on the gas hob, flames shooting to the ceiling. A pot holder had caught fire. John, widowed, had Parkinson’s Disease and needed help himself. He could no longer look after his father.

The electric kettle I bought yesterday went into service today, as have cookie sheet barriers across the top of my range.

The English are known for offering calming cups of tea in crises, but last evening, when we really needed a cuppa, I’d already hidden the stovetop kettle and was too shaken up to find the electric one that I’d stashed somewhere. It seeing action today though.

Header photo: the melted bottom of our electric kettle.

2016 National Society of Newspaper Columnists’ contest finalist. 

 

Just call me Lipton and pour the hot water.

Early in Peter’s the long journey, people warned me, Take care of yourself, take it easy, don’t wear yourself out. They were right, but I didn’t take their advice.

Several months ago, I added more hours to Peter’s two helpers’ schedules to give myself some time off. With those hours I run errands without worrying about getting home to Peter who can’t be on his own for more than a few minutes at a time. Really, he can’t be on his own for any time at all. And I’ve been able to schedule massages every other week, or go to the bookstore and sit with coffee and a new book for a whole hour.

I’ve wondered, how long can I continue doing this 24/7? What would happen to Peter if something catastropic happened to me?  He couldn’t live alone and he would make life miserable for himself and a caregiver without me as a buffer. Carolynn and Leslie have always said they’d take turns taking care of one or both of us. I know they mean it, and they would do it too, but at what cost to them? These are the kinds of questions that keep me awake nights.

I’ve known for months what I must do, but I played ostrich. I should have done my research, should have put my husband’s name on lists. The multiple choice answers to my question include Assisted Living? Nursing Home? Memory Care? Private Care Home? Additional Care at Home?

When it comes down to it, assisted living is what Peter has now. I assist. In any case, he would not qualify now — he is cognitively impaired, he wanders, and he’s close to late-stage Alzheimer’s.

Nursing homes conjure thoughts of elderly residents parked at the nurse’s station in wheelchairs. No thank you. He doesn’t need nursing care, he needs loving care.

Additional in-home care would likely expand quickly to ’round-the-clock. It may yet come to that, but that would be the last resort. My husband is uncomfortable, always has been, with too many people around, and I’m a loner too.

What about a “memory care” unit at a nursing home, I wondered? Six weeks ago, when I began to scribble thoughts for this post, I wrote, …no need yet for that level of care.

That was six weeks ago.

Since then, my emotions and any rational ideas I might have had have tossed in my head like wet blankets in a malfunctioning dryer — around and around, flip and flop, toss and turn.

After Peter’s accident four weeks ago (two previous posts) I understood what my friend Lourie meant — she has faced these questions too — when she said, “You’ll just know when it’s the right time…” to put him into care. Or when Karen, owner of a caregiving service, said, “Remember, you ‘have Alzheimer’s’ too. You have to choose what is best for Pete, and for yourself.” And I took comfort from something gerontology professor Dr. Elaine Eshbaugh wrote in a blog, “You are just a person — doing the best you can under circumstances that aren’t great. And you’re not alone.”  Others I begged answers from had similar thoughts — don’t feel guilty and don’t let anyone tell you what to do unless they’ve walked in your shoes.

So, after Peter fell on his face, literally, I was smacked in the face figuratively. I had not done my homework and I was not prepared  for the awful days that followed. Somehow, in the swirl of emotions, I thought of respite care, something I hadn’t even considered before. Leslie went with me to visit likely facilities. Respite seemed like the right answer for the short term. Rescue for both of us. Peter would get good care in a more pleasant setting than I would have imagined, and I could put my crumbled self back together again.

I started the process, I talked to family and friends and all agreed it was a good idea. They knew Peter’s state was precarious after his accident, and how exhausted I was. Then, then, Peter’s awful journey changed course. He morphed into the person he was several years ago, before his brain was ravaged by rampant plaques and neuro-tangles

Again my own brain tumbled with conflicting thoughts, but after further counsel from friends, I put respite care on hold. Our life is now paused in that blissful place where romance first bloomed.

A delay was the right thing to do.

“A woman is like a tea bag — you can’t tell how strong she is
until you put her 
in hot water.”  Eleanor Roosevelt

2016 National Society of Newspaper Columnists’ contest finalist.