Wrinkles in time, smoothed.

Peter has been sleeping much later in the mornings, sometimes until ten or after. On the one hand, that gives me time to write or go for my morning walk, but on the other hand, I wait for him to get up so I can do laundry, tidy the bedroom, or maybe run an errand. While I’m glad to have extra time to myself, I’m also testy with him because he sleeps undisturbed while I wait to get my chores done.

Ironing, for instance.

Peter wears long-sleeved dress shirts every day and they need, if not ironing, then at least touch-ups. True, I’m the one who nags him to put his shirts into the hamper, while he insists they’re clean even when they’re so stiff they could walk to the laundry room. If he hasn’t spilled soup on the front, he says they’re fine.

I seldom have time, or more correctly, seldom have the inclination, to iron his shirts, or anything else, anymore. Recently, when he asked if he could help me, as he does several times a day, I suggested he iron shirts. And he did! He does a better job than I do, although he thought eight shirts were too many to do in one afternoon. Humph.

The next time he asked if he could help, I again suggested he iron shirts. Those shirts still hang, wrinkled, in the guest room closet. He doesn’t want to do them and I’ve decided to go on strike. He can no longer do most things around the house, but he can still use an iron and, well, he’s the one who wears the shirts. If he chooses not to iron them, then wrinkled they’ll be.

It isn’t really about the ironing, of course, it’s about all the other tasks that pile up like unmated socks. Another iceberg lurking.

If it were possible to smooth the “wrinkles in time” to squeeze more hours into a day, I’d get the iron out…or ask my husband to do it.

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

Don’t kick the buckets, fill ’em!

There are bucket lists and then there are bucket lists. The former includes trips to take, Screen Shot 2016-03-30 at 10.13.32 AMbooks to read, movies, to see. The latter, “buckets of information,” are different entirely.

Sandy Markwood, chief executive of the National Association of Areas of Agencies on Aging, describes three buckets of information that caregivers must organize — Health, Financial, Legal.

Used to be, I was Org-An-Ized. I had a master list of my lists. But then, as my caregiving responsibilities escalated, daily crises took precedence and my organization crumbled. I had at least managed to fill the Health Bucket with the things Markwood suggested: list of doctors, medications, medical history, health and long term care insurance paperwork, and emergency contacts. The medications’ information is in the kitchen drawer with all our prescriptions. And I make copies for us to carry in our wallets. Peter never remembers he has his own list, and doesn’t understand why he has to carry a list of mine. Both daughters know where pertinent information is, though responsibility rests heavily on Leslie’s shoulders because she lives nearby.

The Legal Bucket contains wills, financial power of attorney, medical power of attorney, living will, and caregiving plan. The latter should be shared with family and anyone else connected to the loved one to help avoid a frantic search for a critical legal, health, or financial document during a crisis.

The Financial Bucket contains birth certificate, mortgage/rental documents, bills, bank records, passwords for online accounts and contact information of financial advisors. I’ve corralled all that at last.

Passwords, necessary to access nearly everything in every bucket for everyone, are maddening to keep up with. Seems every few days I have to change an old one or concoct another for a new purpose. I love the line, I changed my password to “incorrect” so whenever I forget it the computer will say, “Your password is incorrect.”

Except for the time, years ago when I was a single mom, I hadn’t had to do the taxes or pay the bills during our marriage. For most of our thirty-five years, I was in charge of spending, not keeping track.  Anything to do with numbers makes my stomach turn inside out, yet now I’m in charge of the things Peter once could do easily. The best thing I ever did was find an excellent financial adviser. I don’t know how he puts up with me, but somehow he keeps me straight. I strongly advise anyone who walks in caretaker shoes, to find a good financial adviser.

Time was, Peter got cash from the bank every week or so. If I said I needed money he’d hold out some bills for me. But when I tried to pull out a couple he’d tighten his grip so I couldn’t take hold. He was always too quick for me, and we always laughed. I called him affectionately inappropriate names. Now I take care of having cash on hand. When I hold money towards him and grasp it the way he used to do, he still laughs, but I’m not sure he remembers why.

Header photo: Isles of Scilly, England, June 2010.

‘I can’t go back to yesterday because I was a different person then.’

Losing car keys doesn’t mean Alzheimer’s disease is lurking, but forgetting what the keys are for might. That’s a simplistic example of the difference between simple forgetfulness, and a more serious problem.

I asked Peter to put some towels into the washer. He went to the laundry room and stood in front of the washer and dryer, muttering. After a few minutes he said, “Which one do you want me to use?”  Since he hasn’t done his own laundry in forty years or more, the question wasn’t too surprising.

On the other hand, I’ve been doing weekly laundry for more than fifty years, but lately I simply forget it until I realize I’m out of underwear! I do know which appliance is the washer, which, the dryer.

Once upon a time I was so organized that my brain was a calendar, neatly compartmented with to-do lists. I never left work without clearing my desk and writing a chronological list of the next day’s projects. When Peter left work, papers were an avalanche waiting to happen. Pens and pencils were strewn like trees in the Midwest after a tornado. Dust bunnies raised families in the crevices of his desk chair.

Now, both his desks look like a military parade: pencils and pens aligned at right angles to the front edge, calendars hung at studied levels — turned to the wrong months however — and stacks of coins in ranks as if on review. His other desk, the one dedicated to model ship building, is arrayed similarly: special brushes and tiny tools in rows, regimented.

My desk looks as if the recycling truck backed up and dumped a load of papers, boxes, sticky notes and Mentos wrappers. Every few weeks I attempt to organize my desktop and files. The mess is viral.

Household chores? While Peter attends to his self-assigned tasks, I seldom even clean the coffee maker anymore. For many years I had a rigid first-Friday-of-the-month routine: run vinegar through the coffeemaker, use baking soda and vinegar in all the drains, and turn the mattress, end-to-end one month, side-to-side the next.

pea_princessBack then, flipping the mattress made us laugh so much we couldn’t lift the thing. Neither of us remembered, one time to next, how to do it, end-to-end or side-to-side, without demolishing the ceiling fan. Last week, I realized we hadn’t turned the mattress in months. I called Peter to help.

We’ve never agreed how to do it. In the past we laughed at our contortions, but this time we barely managed to heft it, much less laugh.

Time was, I vacuumed and dusted obsessively. Now I have Carri who does it for me, and if she’s away, I don’t bother. Peter likes to “Hoover,” as he calls it, but insists on parallel lines across the rugs. He combs their fringed edges with a fork. I wish his hair looked as good.

We’ve reversed habits. His new obsessiveness stems from a need to have control. My escalating lack of organization says I have more chores than I can manage, so I let everything slide. Peter can’t help himself, but I really must revive my routines.

A magic wand might help!

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Quote at top: Lewis Carroll, Alice in Wonderland

There’s always hope.

The Longest Day™ is a team event to raise funds and awareness for the Alzheimer’s Association. Held annually on the summer solstice, [June 21, 2015] the duration of this sunrise-to-sunset event symbolizes the challenging journey of those living with the disease and their caregivers. Carolynn Lyman of the Cancer Program is leading the ‘Poppy’s Hope’ team.
— Announcement in Faxton-St.Lukes Hospital newsletter, Utica, NY

I’d planned to organize an event for The Longest Day ™ this year, which coincidentally, is Father’s Day…tomorrow. But a couple of nasty bugbears, Stress and Anxiety, got in my way and totally discombobulated me for a time. It’s been said that the caregiver’s days are 36-hours long, and I believe it, even though Peter and I are “lucky” because he’s not in as bad a shape as some are…yet.

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‘Poppy,’ Carolynn, me, May 2015.

Carolynn picked up on the thread I’d dropped and started “Poppy’s Hope.” As it turned out, she didn’t have time to organize the golf tournament she’d dreamed up, so she went for a simple Facebook announcement and got a write-up in the hospital newsletter where she’s the Radiation Oncology Charge Nurse.  Though only up for a short time, her site has raised more than 535 dollars.

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Purple streak.

Then, Leslie got in on the act too by posting a photo and a plea — “Wear purple for Peter” — to her Facebook page. I’m not an enthusiastic Facebooker, but I changed my profile and header photos to show the purple streak in my hair and my purple sage. Purple is the Alzheimer Association’s color.

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Martin, left, Peter, me, Leslie, April 2014.


Every day is the longest day for Dementia sufferers. 
In the inaugeral year, 2012, The Longest Day™ events raised 236 thousand dollars and attracted more than 635 partcipants on 200 teams. Now in its third year, teams are as varied as the participants. Activities range widely, from playing contract bridge, quilting, and gardening, to golf, volleyball, walking, cycling, dancing, and fishing, to name a few.

Yesterday, I received a thank-you letter for the check I sent to the Alzheimer’s Association in lieu of organizing a team activity as I’d intended. A paragraph at the bottom reminded me of something I already knew: Alzheimer’s is the sixth leading cause of death in America and the only one among the top ten that can’t be prevented, cured or even slowed significantly. In Virginia alone, 130 thousand people, aged 65 and older have the disease. Worldwide, the number of Alzheimer’s and related dementia sufferers is a staggering 44 million!

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The desire of sage is to render man immortal, according to a late medieval treatise. The sage plant has been praised highly throughout history for its power of longevity. Sage, L. salvia,  means to be in good health, to cure, to save.

If I thought it would help, I’d roll Peter in sage, sprinkle it on his pillow, and rub it behind his ears!

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My sage is a huge plant that I moved to Virginia from our garden in upstate New York 17 years ago.

 

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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Which end up?

Former NBC “Today” anchor Katie Couric had a colonoscopy on live t.v. fifteen years ago, remember? Surely I could write about the subject, if delicately put.

It was my husband’s turn a few weeks ago, not on t.v. of course, though a situation comedy came to mind — Jackie Gleason’s, perhaps.

“Why do I have to have one?” Peter demanded as I handed him four little pills to start the cleansing process.

“Because you had polyps five years ago,” I said.

“Does everyone have colonoscopies?”

“They save lives,” I preached, “and they’re recommended for everyone 0ver fifty.”

He grumbled.

No one likes to prep for a colonoscopy, but a patient with dementia is “lucky.” He won’t remember from one minute to the next why he has to drink quarts of gritty stuff dissolved in an electrolyte-filled sports drink, why he can’t eat for twenty-four hours, nor why he shouldn’t take the dog for a long walk lest he get caught short!

Peter is not a morning person so his early appointment wasn’t to his liking either. We waited just minutes before the nurse called him. “I’ll come too,” I said.

“No, I’ll get you when he’s ready.”

I knew she’d be back quickly. “Mrs. Clarke, come with me, please.” She chuckled as we walked. “When I asked Mr. Clarke why he was here, he didn’t know.”

“He can’t remember,” I said.

“He thought endoscopy?”

I laughed. “Um, no, wrong end. Colonoscopy.”

After she’d taken his BP, asked more questions (which I answered), and started an IV, she left so he could undress and put on a hospital gown. He didn’t understand why he had to take all his clothes off — he’d keep his knickers on, he said. “Nope, those too,” I insisted, as I tied him into a gown obviously designed for someone three times larger than my skinny husband.

Soon, our jolly, effervescent gastroenterologist popped in, offered a few reassuring words, and away they went.

Peter was back within thirty minutes, accompanied by a giggling nurse and chortling anesthesiologist. “Your husband is a riot,” he said. “When Dr. R finished, I asked Peter to open his eyes, but he opened his mouth like he was at the dentist!” Yup, he still had the wrong end!

The doctor came in to deliver good news and bad. “You had four tiny polyps,” he explained, “and they looked ‘fine,’ but we will send them off for biopsy.” Peter’s blank look told me he didn’t understand a word. “But the good news is, it takes about seven years for any new polyps to become cancerous, if they’re going to, so no further colonoscopies will be required.  In other words, age will probably claim him before an attacking polyp. “Sounds terrible, that option,” the doctor whispered to me.

I shook my head. “He’d rather that than another prep.” Peter waggled his eyebrows in agreement.

The doctor showed off the “beautiful pictures” of Peter’s colon as if they were photos of his grandchildren. I raised my left eyebrow to say that only a gastroenterologist would think they were pretty! That prompted him to trot out a joke from his vast repertoire, this one about Yankees. I reminded him, a Southern gentleman, that I’m a Yankee.

He was undeterred. “Yankees are like hemorrhoids. When they come south, they’re a pain in the ass, and the pain doesn’t go away until they head back up north.”

 

Caregiver needed. Flexible hours.

This caregiver needed a caregiver this month after I let myself get sucked into a computer scam that flattened me. The backstory is posted here.

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I needed my husband’s shoulder to cry on, but although physically present, he just couldn’t grasp the enormity of what happened. And, yes, I blame myself for not taking better care of me. If I’d been at full throttle I don’t think I would have fallen for the scam.

During this time, a new report arrived from the  Alzheimer’s Association. Two sentences stood out:

Alzheimer’s takes a devastating toll on caregivers. Nearly sixty percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; about forty percent suffer from depression. …

I knew the scam and resulting mess were the tip of the iceberg, but it was my husband’s quickening decline that had caused me to sink. No place to go but up.

Up was blue sky after a snow squall, warm spring breezes after frigid weather, a temporary leveling out of Peter’s downward spiral — a few days of normal.

Against advice from experts and people who’ve walked in my shoes, I’ve dropped a lot of my outside activities, choosing instead to stay close to home with my husband. One thing I haven’t dropped is the Writers’ Group I’ve belonged to for six years. We meet one evening a month. When I came home after this month’s meeting, Peter was watching t.v. as always, but, curiously, he’d closed all the interior doors and had taken three loaves of frozen bread from the freezer, thrown the wrappers away, and left them to thaw in the bread drawer. Nothing terribly significant, but my alarm button tripped. I knew that was the last time I could leave him on his own for an evening.

My stress level peaked again. There was still more work to be sure all the scam-caused problems were resolved, and I had to accept that I needed more help at home.

A few nights later, when I tapped Peter’s leg with my foot to stop his snoring, he growled, jumped out of bed and plodded downstairs. He was gone nearly ten minutes. When he came back, he rolled under the covers was asleep instantly.

Last night he talked in his sleep. He started doing that occasionally several months ago. “Hello,” he said. He sounded wide awake. “Oh…I’m OK…I’m just trying to remember…yes…I know….” Abruptly, he was asleep again.

Were these episodes signals that night terrors and sundowners had crept in? I didn’t know, but there was no doubt we needed another caregiver in addition to Bill, Peter’s occasional companion of nearly four years.

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This morning, when I told Peter about his “phone” conversation in the night, he said, “Not me!  I don’t talk on the phone.” True, he’s hates phones. But it was funny to hear him doing in his sleep what he never does awake.

We caregivers take our laughs where we find them, even if it’s a dreamtime call in the middle of the night.

 

What watch?

Today is Peter’s seventy-seventh birthday. We don’t do “hoopla” anymore, primarily because he doesn’t like fuss, and also because he forgets not only his own day, but mine and every other family member’s too.

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March 1, 2008, the day Peter picked his puppy, Nobby.

Seven years ago was the last time he agreed to a family dinner. I remember because I’d fumed and worried about the present I’d decided to give him: the option of going to the Humane Society to rescue a dog or to a kennel to pick out a GoldenDoodle puppy.

Was I crazy for even thinking of another puppy? Yep! Was I surprised when he picked that option? Nope.

It was a milestone birthday, his seventieth. Even though I favored a rescue, I knew he’d had his heart set on having a GoldenDoodle since we’d first seen one the year before.

This year I went downscale. I found an inexpensive — make that cheap — watch that lights up at the press of a button. Over the years I’d given him a Mickey Mouse watch to feed his big-eared rodent fixation, plus at least three expensive watches. Somehow he managed to break them all beyond repair.

Now, though, he is obsessed with knowing the time even though he can’t remember it for more than a few seconds. He is now, and has always been, late for everything. He can’t remember that the “new” cable box we’ve had for a year doesn’t have a digital clock on it like the old one did. When he looks at the little window showing the channel, he thinks it shows the time, even if it’s a bright, sunny high noon outside and the channel number reads 838.

This new watch was made in China. I scratched that off the box, as I did the $14.99 price sticker. I “wrapped” it in a bright green envelope, put a years out-of-date birthday stamp on it, and hid it under the newspaper. When he came downstairs I heard him say Oh! when he uncovered the present. He came to me here at my desk and said, “I didn’t even know it was my birthday.”

“Really?” I said, though I was already pretty sure he hadn’t remembered. He shook his head. “Not even with my message on your dry erase board and the reminder on your calendar that’s been there all month?” I said.

“What calendar?” he asked.

“The giant white one on the kitchen counter.”

“No, I’ve never seen it.”

“Well, Happy Birthday!” I said.

“Now I have no excuse to be late, do I?” he asked, looking at his wrist.

“Yes, you do,” I said, “because you’ll forget to look at your watch.”

Later Peter came to tell me he and Nobby were going for a walk. “Won’t be long,” he said.

“I hope not, you need to help shovel snow. Do you have your watch on?”

“What watch?” he said. When I sputtered he laughed and pulled up his sleeve to show me that he did have his new watch on and hadn’t forgotten about it…yet.

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Peter didn’t want me to bake a cake for him, so I froze one in the fresh snow outside.

 

 

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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Two good days in a row.

Sometimes I think of my  husband’s dementia as a scrim painted to look like a lowering storm. Occasionally, a break in the clouds appears — a rip in the backdrop – to let brilliant light stream through.

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Sometimes a ripped scrim is a good thing.

We had two brilliant days this past week.

When Peter is happy and busy he whistles a tuneless few notes over and over. Those two days he bustled around the house, tidying here, straightening there, always whistling. He cleaned the fireplace, laid a fire, made lists, and never once, did he stand in the middle of the kitchen trying to remember where the coffee mugs were. He hasn’t bustled in months!

Two whole days!

He instigated conversation about our grandchildren, Sam and Miah, asked if Carolynn and Bill were snowed-in up north, remembered the recent visit by friends Shelia and Jerry, and willingly watched two Netflix movies in one evening.

Of course it didn’t last, but it was good while it did.

This morning around nine o’clock he was watching football, Manchester United vs Chelsea, when I told him was going for my walk. I went up the hill to the golf course and meandered around enjoying the bright day and the brisk wind. When I got back after nearly an hour, Peter met me at the door. “Martin was just here,” he said, “but I missed him. I left because I thought you were here.”

“I went for my walk, remember? But if you missed him, how do you know he was here?”

“I saw him when I was taking Nobby out.”

“You didn’t stay to talk to him?”

“No, I was going out. He seemed to know what he was doing.”

Then I saw a scribbled note from Mart: Judy, soup & ham in fridge.

I called Leslie to thank her for the soup and asked for the rest of the story. She’d needed to borrow my blender, Martin knew where it was, so it didn’t matter that Peter left the house as he arrived. I apologized. “An hour is a long time for Peter to remember something, Mom,” she said.

Later, Peter came and stood beside me as I was writing this. His head drooped, his arms hung limp at his sides. “What’s wrong?” I asked.

“I don’t know. There’s ‘stuff’ in the fridge, and I don’t know why Martin was here.”

“It’s all sorted, don’t worry. He brought soup and borrowed the blender. It’s OK.” He allowed me to hug him.

“It is Saturday, isn’t it?” he asked. I shook my head. “But football’s on…Sunday then?” I nodded.

He sighed. “I can’t remember things for ten minutes!” he mumbled into my shoulder.

“Hm-m, ten minutes might be stretching it,” I said.

He laughed, gave me a little hug, and went back to the telly. By this time ManU had whomped Liverpool, 3-nil, and Swansea and Tottenham were playing.

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Tottenham 2, Swansea 1.