Sort and organize, part two.

Several days ago I posted a list of ideas that could help dementia patients feel as if they had some control in their lives. In the post, I used Peter’s adaptations as examples.

Today, I have a new item to add. This one aimed at those for whom reorganizing the silverware drawer or separating buttons by color aren’t challenging enough.

  • Wrangle grocery carts into types—large, small, ‘kiddy cars’—in the cart corral at the grocery store!

After our shopping trip the other day, Peter unloaded our groceries into the back of the car, then walked off to return the cart. I started the engine, adjusted the mirrors, lowered the radio’s volume, checked my hair, and waited and waited and waited. Where was he?  The cart corral was only three spaces away.

I reversed slowly out of my slot and, whoa, there he was, sorting carts and fitting them together as if they were the high school band waiting to parade.

I tapped the horn. He looked up and waved to let me know he knew I was waiting. Really, the only thing I could do was laugh.

This is Peter’s idea of Organization. Photo, Eroha trollies, 26/6/11

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

Header photo: Kroger’s on a Sunday morning

 

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.

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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.

Hung out to dry.

“Do you really hang clothes out to dry?” friends ask when they see my clothesline in the backyard.

“Nothing like sleeping on sheets that have dried in the sun,” I say. A clothesline was a must-have when we were looking at houses.

I did the laundry early so I could hang it out before the temperature reached the weatherman’s predicted, blistering 92°.  But I forgot about the wet things, and didn’t take anything out until 11:30. Then I rushed to “peg it out,” as Peter’s old granny would’ve said, so I could retreat to the cool of the house.

Half an hour later, upstairs tidying our bedroom and bathroom, I glanced out the window and saw my husband taking everything off the clothesline. Oh no, I thought, the laundry can’t be dry yet. I opened the window and yelled, “Leave all that there, please.”

“But it’s dry,” he yelled back. He continued folding the sheets.

Screen Shot 2016-07-26 at 4.43.06 PMI ran downstairs to try to short circuit the process, but he was already inside. The sheets, dish towels, and tablecloth were all folded neatly. He had left tee-shirts and a few other things on the line. “I wanted this stuff to hang out in the sun,” I explained. “It makes everything smell so good and bleaches the whites too.”

He plonked the basket down and stomped off. The sheets were still quite damp, so back out I went to hang them out again.

I walk a fine line trying not to hurt my husband’s feelings when he tries to help, but in this case, I really needed the sun-dried sheets to promote my sense of well-being.

I decided all husbands, not just mine, have trouble with Laundry 101. And most wives don’t understand why they must heed the oil warning light in their cars. In the end, it all comes out in the wash.

Screen Shot 2016-07-26 at 2.05.30 PM©Mark Anderson, WWW.Andertoons.com

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

The little things are getting bigger.

It’s him asking over and over “why they’re digging up our driveway?” It’s not understanding that the plumber’s crew aren’t “looking for” anything. They’re replacing our sewer line, collapsed and choked by roots, after 60 years.

It’s knowing that telling him something will make no impression, as if I never said anything at all. It’s knowing that he won’t even see my note, underlined in red, that I’ve left to remind  him of an event, a date, a task.

It’s putting a shovel in the ground exactly where I want a hole dug for the azalea that was yanked out last week, knowing the shovel will be put away before the task is even started. It’s knowing he’ll ask why the azalea, jammed in a big flower pot, was sitting next to the shovel.

It’s me YELLING because once again he managed to confuse our so-called “smart” tv by pushing the wrong buttons on the remote. I’m not smart enough to know what’s wrong, so I can’t fix it.

IMG_3266I thought I’d come up with a brilliant way to avoid telling him things he’d forget, or writing notes he wouldn’t understand: I suggested he write a note to himself about how to turn the tv on and off, for example. He liked that and labored over the words. His own message worked for 24 hours. We’re lost without the tv, Peter because he watches anything, anytime, and me because he’s content and calm when it’s on.

It’s me begging him not to move the plumber’s drainpipe extension because it helps direct rainwater away from our not-yet-resurfaced driveway. I growl when I see that he’s moved it to where he wants it again. I had him insert metal garden stakes along the pipe to hold it where it’s supposed to rest, thus reminding him that it shouldn’t be moved. Worked so far.

It’s me, arguing when he said he did not fill in the hole he’d just dug or “plant” the weeds I’d just pulled. I know better than to argue.

Yes, I look for laughs every day, but days like this, there aren’t any.

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This is where the azalea once lived.

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

Why ask, ‘What if?’

Thirty-five years ago — April 1980 — Peter, who hadn’t yet to been persuaded to marry me, participated in a bike race in Norfolk, Virginia. It was raining lightly and roads were slick. He slid out on a curve and crashed, hitting his head. Not many riders wore helmets back then, though nearly all wore rigid leather “skid lids” that offered little protection except to the scalp. A doctor on the scene diagnosed a concussion, but after resting a bit, Peter drove the three hours home.

I was at a social do elsewhere, one that I’d begged Peter to attend with me. He’d refused. I was upset that his devotion to biking took precedence over his devotion to me.

Forward to about seven years ago and Peter’s initial diagnosis by a neurologist. She said his increasing symptoms “could be” early Alzheimer’s, while an in depth study in 2011 at the Psychological Services and Adult Assessment Center suggested Vascular Dementia, likely caused by the concussion in 1980.

What if I’d insisted he go with me on that April day? What if I’d been at the race with him and had insisted he stay in the hospital overnight? But what if Peter’s dementia is genetic? His grandfather had some form of dementia, and his father had Parkinson’s disease and dementia in his later years.

No matter what the diagnosis, the symptoms and the outcome are the same. There is still no definitive way to diagnose Alzheimer’s until post-mortem. And there is still no cure.

images-1So, my husband who once rode several thousand miles a year for fun, can no longer ride at all because 1.) his balance is shot, and 2.) he’s afraid he’d get lost if he were try a ride. His two custom bikes still live in our basement, and the “clunker” he used to ride around town gathers dust in the shed. I’ve suggested we ride together on our local trail, but he won’t. Although I wasn’t a bad cyclist myself, I was never in his class and he didn’t like to “watch the grass grow” when he rode with me. I’d looked forward to our golden years when he might not mind going at my pace. Not gonna happen.

A friend called recently to catch up. “How’s Peter doing?” he asked. I gave him the short story, then he wanted to know if Peter still biked. When I said no and told him why, he interrupted. “What about a tandem?”

I roared. The thought of Peter allowing me to ride in front while he rode stoker was, well, the laugh I look for every day.

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Short-term memory long gone.

Years ago, when I was a single mom, my tools for household repairs were glue gun, duct tape, and WD-40. If those didn’t do the job, whatever needed fixing remained broken.

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Where’s the glue gun?

Then I met Peter. After our first date forty years ago, I brought him home to meet my young daughters. He made an impression on them, as he had on me, but when he looked beyond usat our house, he shook his head and rolled his eyes. He brought his tool box to our second date.

From then until five or six years ago, he fixed all sorts of things with ease, built and refinished furniture, made games and toys, painted and wall-papered, took care of the cars, grocery-shopped, and occasionally cooked meals.

He can no longer do any of those things, nor does he notice they need doing. For a while he was mad at himself because even simple tasks were beyond him. Now he doesn’t seem to care.

I care.

I care that he doesn’t notice, that he can’t do little jobs, that he can’t care. It frustrates each of us in different ways, though there’s a common denominator — dementia.

Household repairs piled up undone, but I long since surrendered my glue gun. Then I realized that a member our writers’ group writes in his spare time, but is a handyman by day! Several members of the group have used him and all speak highly of his work.

John! He studies the problem, figures out what should be done, what parts he’ll need, and arrives on time — often with bounty from his garden — to do the work.

And Peter likes him, he really likes him. Usually, if someone he doesn’t know comes to the house he hides upstairs to work on his Cutty Sark model. But from the first, he laughed with John as if they were old buddies.

Last week, John asked Peter if he’d like to go to Lowe’s with him to get supplies for my most recent to-do list. Peter was out the door before the question mark arrived at the end of the sentence. He returned laughing and John was amazed he’d talked about such a variety of subjects — WWII, soccer, cars, “Generous” Electric— common topics for my husband who had a new audience in John. Peter’s short-term memory is long gone, but he remembers the good old days.

That evening I told him I was surprised he’d been willing to go to Lowe’s spur-of-moment. “I don’t get to go everyday like I used to,” he said, a nod to when he could still drive himself wherever he wanted to go.

My to-do list for John grows daily, and I’m thrilled he’s “on call.” I think I’ll pass these fixes on to him. Might come in handy sometime!

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Great pumpkin drop.

Q. How do you fix a broken mallard?
A. Duct tape.

Q. How do you fix broken dentures?        
A. Toothpaste.

Q. How do you fix a stolen rifle?
A. Hot glue gun.

Q. How do you fix a broken pumpkin?        
A. Pumpkin patch.

“How do you fix…?” glue jokes. Trevor, the Games Man.
 

Gone bananas.

Recently, I’ve had to resort to writing our names on some foods in the pantry and fridge the way I did when Carolynn and Leslie were young.

Bananas, for instance.

Last week I bought seven green bananas at the grocery — we like them green-tinged rather than brown. The next morning I saw that five ofScreen shot 2014-09-24 at 10.57.31 AM them were gone. Oh, I knew what had happened: Peter had eaten them one-by-one, but each time he pulled off another one, he forgot he’d already eaten one, or two, or three, or four.

He caught me printing my name on the remaining two. “What did I do?” he asked, wary.

“You ate five bananas since I went to the store yesterday. They are good for you, but I like them too, y’know,” I said. As  expected he denied eating them.

“I couldn’t eat five bananas!” he argued.

“OK, maybe you put them on your desk,” I said, “or hid them.”

“If I did, I forget,” he said.

And we laughed.

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Thinking for two.

He doesn’t worry about things; he just…seems to accept he can just do what he can do and can’t do everything. He’s always been the sort of person who doesn’t think too deeply about things.

I seem to be the one who’s finding it hard because everything as it was in our lives is finished. I’m 58 and I think if I was 70 I’d be more accepting of the situation, but I’m always thinking for two people and I’m exhausted most of the time.

The paragraphs above express my feelings, but I didn’t write them. The writer, Penny, is the caregiver for her husband Harold. They live in Lincolnshire, England, and her article, “Coping strategies,” was on the Alzheimer Society’s UK website several years ago.

I search the web often for ideas that could help us, so when I came across Penny’s piece I felt a certain kinship — Peter is English and I always wanted to be. Besides, Penny understands the therapeutic effects of a cup of tea. 

 

Tea in a china cup and a McVitie's biscuit.

Tea and a McVitie’s chocolate biscuit.

 

It feels like there’s always a next step; something else to think about…going to the day centre, …getting used to the day centre, … going more often, and now…trying an overnight stay and…respite.

For us, it was getting used to the idea of Bill who started taking Peter and Nobby to nursing homes three years ago. Now Bill drives Peter to physical therapy too. Soon, I’ll add more in-home care so that I can have some respite.

There are things I miss, like having someone to discuss things with. We’re having some decorating done at the moment and I might ask Harold what he thinks, but it’s not the same.

Oh yes! In the past year a number of small house repairs needed attention, plus some major things to deal with. Even though I knew Peter couldn’t manage any of them, I wanted him to listen and lend an encouraging word at least. But if I were to say anything he’d be upset because he no longer understands the problems, nor can he help anymore.

So I whine to my daughters and to a few good friends.

I don’t look forward too far, as I would just be worried all the time. 

Penny mentions missing the things they used to do together…caravaning and dancing…but she believes things could be worse.

One day at a time, is the motto I try to adhere to.

There has been more deterioration latterly and Harold relies on me more. But I have to learn to let go each time something is lost.

Harold was only 64 when he was diagnosed, Peter, 71. I think Peter is losing ground more slowly than Harold. What keeps Peter somewhat steady, I think, is that he is now, and always has been, so bloody single-minded, the effects of a separate issue. I never thought I’d be glad that was the case.

I have wondered about giving up work, although [it] gives me a bit of respite. But that would lead to another form of stress as it would affect us financially.

We’ve been retired a long time, and we’re OK financially, but stress related to finances plagues me almost daily. But that’s another post.

Penny and I have such similar concerns — I wish we were on the same side of the pond so we could share a cuppa.

 

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©Nikki McWilliams digital print; original painted in tea.

 

Note: There will be more from Penny in another post.

Sources: Living with dementia magazine, The magazine of Alzheimer’s Society UK, and www.alzheimers.org.uk/magazine