Ninety-eight days and counting…

Ninety-eight days have passed since my husband was admitted to memory care, first for a month’s respite then, sadly, as a permanent resident.

Ninety-eight days with ups and downs as stomach-twisting as a rickety rollercoaster ride.

Ninety-eight days of uncertainty, confusion, frustration, anxiety and sadness. And that’s just my list. For Peter, I’d add to those anger, fear, anguish and longing.

Since those first heart-breaking mid-April days — I remember them as very cold, though they were not — the succeeding weeks have glommed together like cheap paper towels. There’ve been bad days and good, more lows than highs, a few baby steps forward, but more giant steps back. Silly me, I thought when someone else took responsibility for my husband’s safety, feeding and care, I would be able to catch up with myself. Not so. But it’s not about me anyway.

Within hours of his admission Peter had a meltdown that prompted a call from the evening charge nurse. Would I talk to him on the phone to see if that would help? Yes, I would. When that didn’t work, would I come to try to calm him? Yes, I did. It took several hours, but he was laughing by the time I left. Oh, I’m no hero, but I generally know which buttons to push. The staff had yet to learn.

Within seventy-two hours he’d gotten out of the facility, even as his ankle bracelet screeched while he walked through the main door. A maintenance man found him behind the building near an area surrounded by woods.

By the third, maybe fourth, week he started to acclimate a tiny bit.

The food, though nutritious, does not appeal to my picky husband. And showering with a female aide hovering nearby is not gonna happen. Without me to nag him about changing his clothes, he doesn’t. Instead of putting his things in the laundry, he hides them in the waste baskets and they’re gone forever. His slippers, leather scuffs, have vanished several times. Once I found the left one in a wheelchair parked outside another resident’s door. A few days ago I found the right one under a table in the shower room. But the left one had disappeared again. Peter isn’t necessarily to blame. Residents in memory care units are notorious for “stealing” from other residents.

Houdini could be his middle name.

Peter advises the cat on how to escape.

No, I really can’t blame him for any of this. No one can know what it’s like to be so confused and disoriented all the time. During his first 12 days there, he’d had relative freedom. But he was quickly moved to the “lock-down” wing after he busted out a second time. He left for an outing with Mark in the morning, but returned to a different room that afternoon. He didn’t even realize he’d been moved. And a few weeks later when we were finally able to move our furniture in to replace the borrowed stuff, he never noticed the change.

So, he’s safe under lock and key…touchpad and code.

Except he isn’t. My husband is an escape artist. He snuck out in my care, and when he wants to get out, he continues to walk out right past the nurses. For years Peter took Nobby to visit the residents where he himself now lives. He knew the code to get into the locked areas and how to get out. Served him well when he was the one on the inside. Frankly, I laughed when I heard that he remembered the code. He can’t remember names or places or much of anything at all, but numbers? His engineer’s brain still computes with reasonable ease. Then, too, he can read. There’s a sign on each locked door that says: Press for 15 seconds and door will open—fire code requirement.

It’s all about control.

From the first days he looked for ways to maintain control. Leslie and I set up his first room and made it as homey as we could. It was a large attractive room with a pleasant outlook. He very quickly rearranged things to suit himself—he hid the family photos, stacked books and puzzles in a corner, and put his tooth and hairbrushes in the little refrigerator that was left behind by the previous occupant.

Less than two weeks after he was moved to the more secure area, he started conjuring more creative ways to dominate his surroundings. He folds his clothes and conceals them in pillow cases, then secures them with his belts or wrapped in his shirts. Lately he’s wrapped everything, gift-like, in towels or sheets. He stashes handkerchiefs in the travel toothbrush holder he requested, not for his toothbrush, but to conceal whatever he could stuff into that little green cylinder. He hid family photos underneath a framed picture of his dad.

In more recent weeks he started taking the screens out of his windows. Almost every evening he disconnects his television, but two days ago he hid it. From himself or from me? I found it and hooked it up again, even though I always say I won’t.

Days 94-98 have been more troublesome. No matter howfrustrated I get, I know Peter is a hundred times more frustrated—he isn’t to blame for his shenanigans. I tell myself that while I bang my head against a brick wall.

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

The worst weeks of my life so far.

I still remember how wrenching it was to drop eleven-year-old Carolynn at her first sleep-away camp. And I still remember taking Leslie to college, moving her in, and then watching her walk away from me without looking back. Those days still grip my heart.

If you’ve experienced similar days, similar pain, I can tell you they were nothing, nothing, compared to the day you deliver your spouse to a memory care unit for what is supposed to be a month’s respite for both of you.

My husband’s long, long journey from “mild dementia” to “can’t rule out Alzheimer’s” to “probably Parkinson’s, too, with Lewy Body disease” has lasted 15 years. Fourteen-and-a-half of them relatively easy, I now realise. My panicked uncertainty during the time since February when he had a bad fall, followed by weeks of rapid decline have been exhausting, wearing, and sad for me and the rest of the family.

Not so for Peter! The one good thing about dementia — any of the dementias, I suspect – is that the afflicted doesn’t remember anything from one minute, one second, to the next.

After those bleak early February days, I decided to try respite care because I could not carry on without a break from the constant crises. No matter how many times I explained to Peter that he’d be in respite care for a few weeks — a therapeutic lie meaning “at least a month” — he never grasped it. I based my explanation on the number of times he’d fallen since February. He had no memory of that, even with photos as proof, nor of any of his recent falls. “I can’t lift you,” I said, “can’t take care of you when you’re like this.”

Leslie and I had already checked local respite care. The best choice was obvious. Even so, Peter and I coasted along for another few weeks or maybe a month. Push came to shove in April. Peter fell again while we walked Nobby one evening. I’d convinced him to hold my hand and use his cane with his other hand when, suddenly, he smashed face first onto the street. He didn’t have the strength to get himself up and I didn’t have the strength to lift him. I’d been so diligent about keeping my cell phone with me, but we’d just come home from a nice dinner out, and my phone was still in my purse…on the kitchen counter.  Luckily, a young woman came by and helped lift him, then offered to get her car to take Peter home.

Not even seconds after it happened, nor at anytime since, did he remember falling. It was time.The hours, days, weeks, months whipped by so quickly since February while I struggled to keep things “normal.” Yet, the same period oozed too. Years could have passed while I was stuck in a molasses swamp.

I wouldn’t wish any of this on anyone.

The awful April day when Peter, Leslie and I met with the facilities’ director of nursing, the administrator and others is a blur. Though my husband didn’t understand what was going on, he did know he was the center of discussion and he hates that. He understood just enough to know he didn’t like what was happening. His Mt. Rushmore persona was apparent. I reached for his hand, but he pulled away angrily.

Between then and five days later when he was admitted, I prepared for his move as if I were taking him to college or to camp. I bought him new underwear, new socks, tubes of toothpaste, cheery yellow sheets, and bright blue towels. I packed favorite picture books about England, pictures to hang on the walls, photos to put in a drawer, his special tea and coffee mugs, jigsaw and crossword puzzles, pencils, pens and paper, Sudoko books. I washed and ironed his shirts and trousers and polished his shoes.

Leslie and Martin helped with the move-in. Stoney silence from Peter as Leslie and I gabbled and tried to lighten the mood. Martin took Peter to lunch while Leslie and I finished making the room as homey as possible. We added finishing touches the next day. Peter was almost jovial. He managed a few silly jokes and we breathed sighs of relief.

By the time all the paperwork was completed two more days had passed and the meter was running. A private room in the best facility around doesn’t come cheap. Thank goodness for long term care insurance. When I finally took my husband to be admitted, he was practically mellow. Whew.

Ah, but that was only day one. A Tuesday.

Header: Peter in the garden surrounding his new home-away-from-home. The fence, he has since explained with a twinkle in his eyes, is climbable!

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

 

 

Laughs every day are harder to find.

Maybe it’s the shorter days, the longer nights, the unseasonable cold eight weeks ago, the unseasonable heat this month, or maybe the light at the end of the tunnel burned out, but I’ve really had to search for laughs to drag me, us, along recently.

One evening.

Leslie, Martin, Peter and I had a Friday night dinner and movie date, but there was a line out the door of the restaurant we’d chosen. We had little time to spare, so we ended up at the one place I’d said no to: Red Robin. Not that there’s anything wrong with it, but Peter had been there twice that week.

We’d no sooner ordered than another waitress came by and skidded to a stop beside our table. “You didn’t come say hello to me,” she said, grinning at Peter. “What’s up with that?”

Peter laughed. “I didn’t know I was coming here.”

“I’ll let you off,” she said, “I wasn’t supposed to be here tonight, but someone called in.” She looked at the rest of us. “He makes us laugh ordering ‘cish and fips’ when he comes for lunch.” Peter grinned. They make such a fuss over him at Red Robin. The bonhomie reminds him of an English pub.

Later that evening.

We were about one hour, thirty minutes into a one hour thirty-seven minute mildly entertaining movie. Peter fidgeted and twisted in his seat. Bored, I wondered? Hm, no. “Do you need the loo?” I whispered.

He was annoyed that I asked. But suddenly he got up, felt his way along the row, down the few steps, and he was gone. “He won’t know how to get back,” Leslie said, as if I didn’t know. I groped my way out and followed.

In the hallway Peter fumbled at a door marked with the international symbol for family restroom. “Can I go in here?” he asked. I nodded. He dashed inside.

Even though the movie was a bit of a ho-hummer, I wanted to see the ending. I paced outside the theater door, then noticed the sign above said “Blade Runner.” I looked around. None of the doors’ signs said “Home Again.” Ack! Was I lost? By the time Peter emerged, I’d realized our film only ran at 7:30. “Blade Runner” would be shown at 10:00 in the same theater.

Back inside, just before the closing credits, I told Leslie I’d gotten confused. Of course she laughed as she does, but I didn’t try to explain to Peter. He would’ve cracked up knowing I’d been lost…momentarily.

The next morning.

Peter was in the kitchen clattering around. I pictured dishes suffering new chips and silverware headed for the waste bin instead of the dishwasher. I went to check. Ah-h!

“Peter, those haven’t washed yet,” I yelped when I realized he’d taken dirty plates, glasses and silverware from the dishwasher and put them into cupboards and drawers. He growled and stomped away. I reclaimed the dirty unwashed.

That evening I took a couple salad bowls off the shelf. Both were encrusted with bits of tomato and lettuce. Ready made salad, right out of the cupboard! What a concept.

Peter had the last laugh, because his mistake was my fault. I hadn’t switched the color-coded sign I stick on the dishwasher from  yellow/clean  to pink/dirty. How was he supposed to know the things he’d removed were dirty?

 

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

‘What do I want?’

Peter and I spent the morning of June 6 at the Commemoration of the Normandy Invasion at the National D-Day Memorial in Bedford, Virginia. We’ve visited many times in the sixteen years since it opened. We go because we remember D-Day. Well, I do. Peter doesn’t remember much anymore, but I’d hoped the grandeur of the place would spark a memory.

A soft breeze wafted around us as we walked up the alleé and through the immense granite Overlord Arch. Above us, Allied flags flapped in the wind. As we gazed out at the awe-inspiring depiction of a Normandy beach, a soldier fighting to gain the cliff, another sprawled in the sea, Peter said, “We’ve never been here before, have we?”

* * *

After the ceremony we went to Roanoke for lunch. When I drove into Montano’s parking lot, his eyes lit up. “I know where I am now,” he said. We were seated quickly at one of Theresa’s tables. After so many Montano’s lunches, she knows us.

She patted Peter on the shoulder. “You remember, we don’t have Guinness on tap anymore,” she said, apologizing.

He shook his head, and finally settled on another choice. When she returned with his beer, she said, “Ready to order? Too many decisions, I know.”

He looked at me. “What do I want?”

“Fish and chips.”

“Yes, that’s what I want.”

When Theresa brought our food, he asked me about the contents of the three little cups on his plate.

“Tartar sauce. Horseradish sauce. Malt vinegar,” I said, pointing to each. “You use malt vinegar. It goes on the fish and chips.”

He dipped his spoon into the tartar sauce. “Oh, that’s good,” he said. Once upon a time, he wouldn’t even have tasted tartar sauce. “Too sweet,” he would’ve said. He dipped his spoon in again. “I could eat it all.”

He wrinkled his nose at the horseradish sauce, but then, he picked up the container of vinegar, put it to his lips…and…

NO-O! Don’t drink the vinegar!” I yelped. Too late.

He shuddered. His eyes watered. “Bl-l-l-ech! Wasn’t supposed to drink it, was I?”  He laughed and choked at the same time.

I couldn’t help but laugh at the look on his face. “You’re supposed to sprinkle it on the fish and chips.”

He did “sprinkle” the remaining vinegar, but then, to add to my shock, he plastered the fish with tartar sauce. By that point, I guess I wouldn’t have been surprised if he’d licked the container clean.

We’re reflected in the granite Overlord Arch in Bedford.

 

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

 

Header: Monument at front of National D-Day Memorial, Bedford, Virginia

Sweet talk.

Valentine’s Day crept on me, but I decided not to rush out to buy a card for my husband. Instead we’d go to our favorite spot for coffee. Oh, yes, I did cut a big heart out of newspaper and put it in his chair this morning and, yes, I did leave a message on his little white board. He didn’t notice either of them.

When I suggested we go to Our Daily Bread, his eyes lit up. We walked so I could justify one of their beautifully decorated heart-shaped sugar cookies. The place was bustling, as always, and even at 9:30 we were too late to get Valentine cookies. Peter eyed a strawberry-studded chocolate gateau, but in the end, we settled on our favorite apple turnovers.

After repeating his usual questions several times — “any news from upstate? ” and “how’s the big guy?” — he wanted to know what he could say that wasn’t the same old thing.

“How about ‘Happy Valentine’s Day?'” I said.

“When is it?”

“Today.”

“I didn’t know,” he said. He patted my hand and shook his head.

“Oh well, this is better than a card anyway. Two apple turnovers and two coffees for only eight dollars and forty-six cents.”

“Cheaper than a card,” he said.

“You’re a cheap date,” I told him.

images-1

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

screen-shot-2016-12-07-at-10-14-53-am


‘…my brain was a jumbled mess and I couldn’t remember what number comes after potato!’

My husband is —was — a math whiz. Dementia overloaded his brain more than ten years ago, but every now and then, it reboots.

screen-shot-2017-02-06-at-11-47-05-amThis puzzle showed up on-line a few days ago.  If you can solve this, you are a genius, it read. I showed it to Peter. “I’ll bet you can do it,” I said, “and you know I can’t!” I added. He laughed. He knows how absolutely hopeless I am at math. I left him to it, pencil in hand.

Within minutes he was done. When he tried to explain how he’d arrived at the correct answer, he lost me, not only because numbers muddle my brain as if it’s being whirled in a blender, but also because he can barely put sentences together any more.

I’d copied the two possible ways to solve it, but I didn’t even understand how to apply either solution. Here’s what Peter did:

img_4779

You are a genius!

Interestingly, he keeps a scrap of paper by his chair that shows the way he figures out how old he is. I’m not smart enough to understand that either. First, he looks at the newspaper to see what year it is: next to 2017 he writes 17 and underneath, 62; to the left, 1938. Simple subtraction, 2017 minus 1938 should tell him he’ll be 79 this month. (Even I can manage that!) But then he adds 17 and 62 to get 79, too. See, I don’t get that at all, but he does and that’s all that matters.

There are probably several geniuses among my followers who can solve the “genius” problem. I am in awe of you. But I’m more in awe of my husband who did it so quickly, yet he can’t remember where the dog’s leash is kept, where the salt and pepper live, nor how old he is.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

screen-shot-2016-12-07-at-10-14-53-am

 

 

Headline quote: Tara Sivec, USA Today best-selling author, Seduction and Snacks.
Header photo: Performance  Brain Training

Morning walks clear the head.

For the past week a bad cold gripped my head, a cold I caught from my husband who still insists he didn’t have one. For once, I took my own advice and lay low, resting and drinking lots of tea, force-feeding Vitamin C in various forms. I was a real grump because I couldn’t go out and play in the first snow of the season. I even forfeited my daily walks, until this morning.

img_4730Mid-morning, I heard Peter tell Nobby it was time time for a walk. The dog has adopted his master’s ways, he is not a morning dog; he needs coaxing. “Will you wait for me to get dressed so I can go with you?” I yelled. I was still in snowflake pj’s and mommy robe.

Peter smiled. “Yes! Thank  you,” he said. As I dashed upstairs I heard him tell Nobby “she” is going with us so we don’t get lost. He sounded happy. I had to hurry or he’d forget and leave without me.

We walked for nearly an hour, not so far in distance, but slowed by the dog’s need to figure out who else had walked that way.

The fresh air — mild after last weekend’s snow and near zero temperatures — revived me. Ideas began to gel, solutions to problems began to surface. By the time we came in the door, I felt better than I had in more than a week.

While I poured coffee, Peter studied the dry erase board beside me. “Today is Sunday, isn’t it?” he asked.  I nodded, then noticed he was wiping “Saturday” and “14” off the board. I’d been so wrapped up in my thoughts earlier that I hadn’t updated the message first thing, something I always do.

“Yay, you know what day it is!” I said. He smiled proudly while I updated the day and date.

Leslie called a little later. Did we want to go to a matinee and then to eat after? Yes we did. I added that information and showed the message board to Peter. Slowly, he read the words out loud, then smiled. “Something to do on Sunday,” he said.

Smiles are hard to find some days, but they are always worth looking for.

img_4742

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

screen-shot-2016-12-07-at-10-14-53-am

 

Forever — is composed of nows —

For my husband to give me a meaningful card for our anniversary was present enough. But coupled with heart-shaped earrings in a beautiful little box, WOW!  With Leslie’s help — she offered him three choices — he picked the earrings and the handcrafted box to put them in. He doesn’t remember our Boxing Day anniversary, nor how many years we’ve been married, but some glimmer helped him choose perfectly.

When I opened the Leslie-wrapped present, he hung over my shoulder to see what he’d given me and why. “Our anniversary? Did I forget?” I said he hadn’t, and that the box and earrings were what he’d given me.

“I did a good job, didn’t I?” he said. “Did you give me something?”

“I did. That card on the mantle…and shoes.”

“Shoes? You gave me shoes?”

I laughed. “Two pair yesterday,” I said.

“Why?”

“Why did I give you shoes, or why did I give you two pair?

“Yes.”

“”Well, shoes because you’ve been complaining you don’t have any, and one pair because it was Christmas and the other pair as an early anniversary present…”

“Anniversary? Did I miss it?”

“No, it’s today, it’s ‘now,'” I said. I held the box up to show him Emily Dickinson’s line.

He shook his head. “I don’t know what that means.”

Hm, Dickinson is sometimes hard to explain. “It means ‘now’ should be treasured and celebrated, our anniversary, for instance. ‘Now’ means the present…right now…’forever’ is made of all our ‘nows.'”

I don’t think my stumbling explanation made sense to him, but he was pleased that I was pleased with “the present” he chose.

img_4588

Birdseye maple box, Mike Mikutowski Wood-working. Lapis lazuli earrings above, Cathy Guss

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

screen-shot-2016-12-07-at-10-14-53-am

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.”

 

UnknownNational Society of Newspaper Columnists 2016 contest winner —
online, blog, & monthly under 100,000 unique visitors category

Perfect do-nothing day.

“Do you want tea or coffee for ‘second breakfast’?” I asked my husband. “I’m fixing waffles.”

“What? Tea or coffee? What are you having? What are we having?”

“I’m having tea, we’re having waffles…and fruit, lots of fruit,” I told him.

“OK, tea then. What’s the occasion?” Peter asked.

“It’s Father’s Day.”

“You’re making me waffles?”

“Mmm-m,” I said, “it’s Father’s Day.”

“What can I do to help?”

“Nothing. It’s Father’s Day, do nothing until I tell you it’s ready.”

“I’m good at doing nothing,” he said.

“Yes, you are,” I said.

This day is perfect — a Crayola box of colors, balmy air, bright sun. I set the table outside, made a pot of tea, washed raspberries, blueberries and a peach, got out real butter and real maple syrup, and popped a whole package of frozen waffles into the toaster.

Peter ate as if he hadn’t had a meal in days. “I would like to have two birthdays every year…” he said, smacking his lips.

“This isn’t your birthday, it’s Father’s Day.”

“Not February? What is it then?

“June. It’s never warm like this in February,” I said.

“Well, I’d like two birthdays like this. This is good.”

“It’s still Father’s Day.”

“Are we doing anything special later?” He made a silly, little boy face.

“Yes, Leslie is taking you…and me…to a movie and dinner.”

“Wow, I’d like another birthday like this.”

IMG_3297

UnknownA card arrived from Carolynn yesterday. On the front, the unmistakeable silhouette of Mickey Mouse, Peter’s hero, and a “Hooray for Dad” message. He looked at it again and again, then put it next to his chair. When I looked at it this morning, I realized why he’s confused about today. The message says:

As far as dads go,
there’s not a more classic
character than you.
Hope your birthday’s
as special as you are.

Beneath that she wrote, I know you can’t remember all the cool things you did with Leslie and me…but we do! Happy Father’s Day!

Birthday? Father’s Day? Doesn’t matter. He’s loved by “his girls” and he’s happy.

DSC01438

 

Mickey Mouse webgrab/Pinterest