Right now is the right time.

My Peter, now more than ten years along dementia’s downward slope, is slipping faster. I try to ease the skid by finding activities to occupy him, to give him a sense of accomplishment. Many things he once did easily aren’t possible now. It has been a long time since he could cook anything, not even fried eggs or bubble and squeak. Sometimes he even forgets how to make a cup of tea.

I waited too long for the right time to introduce these “sort or organize” ideas I found online. But on his own, perhaps prompted by some brain tweak that Alzheimer’s patients experience, he’s been doing many of them for months, maybe years. I offer them here, for readers looking for in-home occupational therapy.


Sort or organize…

  • …nails, screws, and other hardware. Peter has long since sorted, by size and age, his collection of antique hammers and other old tools.
  • …nail polish and lipsticks, sorting by color, brand or on a scale of 1-10 by preference. Not bloody likely, he’d say to this one, but I might push him to tackle it.
  • …buttons, using muffin tins to sort by color, size or style. Not even the antique buttons my mother collected piqued his interest.
  • …coins, according to date, value or place of origin. Ah yes, he stacks coins, wraps others, and bands paper currency he brought home from our travels and his business trips to Europe and Japan.
  • …the pantry, arranging cans and jars by size, brand or contents. Unfortunately for me, he does this often. I want my pantry to be organized the way want it organized — tomato products together, vinegars and oils, all condiments, and so on. He likes everything lined up like soldiers, no matter their culinary purpose. (I’ve declared the pantry off limits, for all the good that does.)
  • …the silverware drawer, rearranging the order of the forks, spoons, and knives. Peter often reorganizes our two sets of everyday cutlery. He likes the two sets separate from each other, and I don’t give a hoot about that. I prefer all dinner forks in one compartment, all salad forks in another, likewise all soup spoons, all dessert spoons, and so on.
  • …playing cards into decks that match, or into suits within a deck, or by numbers. He’s been doing this for months, endlessly. He hates that my canasta decks are the same on the backs and tosses them aside because they don’t suit his orderly sensibilities.
  • M&Ms, using muffin tins to sort by color. Choose one color to eat. Haven’t tried this yet, but I have a feeling he’d eat all of them before they made it from bag to tin, all except the green ones, that is. “Green candy isn’t good,” he’d say.

Just a few years ago, Peter would’ve laughed at the thought of doing such silly activities. Now, they calm him, and give him a sense of purpose, in his increasingly purposeless world.

Header photo: Stacked coins in his closet.

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

Trouble with a capital T rhymes with me!

My friend Bette made it a point to tell me she’d seen Peter at the grocery store recently. She figured I must be in the store somewhere, although she didn’t see me. Bette introduced herself to him because she knew he wouldn’t remember her name. His response was quick and so typical of him. “Don’t tell ‘anyone’ I’m here. I’ll be in trouble.”

Anyone meant me, of course.

She didn’t remember what day it was, but I figured it was probably the Tuesday he snuck out without telling me he was leaving, nor where he was going. When I realized he wasn’t here and that he had probably been gone well over an hour, I went looking. By the time I got home, he was back. “Where’ve you been?” he asked, greeting me at the door as if he’d been out looking for me.

“You didn’t tell you were going out,” I said. “I’ve been looking for you.”

“I didn’t know where I was going,” he said. “I just went for a walk.”

“Where?”

DSC01592He shook his head. “Can’t remember.…that was a long time ago.” He uses the “long time ago” line a lot in attempt to joke his way out of Trouble. His only Trouble would’ve been if he had gotten lost for real!

That evening I found a Hershey bar wrapper and deduced that he’d gone to Kroger’s.

Several days later someone else told me she’d seen Peter at Kroger’s and he seemed confused. She saw him leave and decided to call me — it was that same Tuesday. I didn’t see her voice mail until after he’d “found himself,” but it is comforting to know we have friends to help me keep track.

Screen Shot 2016-06-15 at 11.56.06 AMI am researching personal tracking devices. There are several types on the market, but he wouldn’t use any of them willingly, and I know he would find ways to “lose” them. He’s crafty that way.  I wish someone would come up with a microchip like veterinarians implant in dogs. The idea would make Peter laugh…I think that will be my little secret.

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Breadcrumbs?

 

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

Fish story.

A rank smell had permeated our basement for weeks. I couldn’t find the source so chalked it up to our muggy summer and a husband who refuses to let the dehumidifier run.

When we got back from ten days away, the odor, now thick as mud, impregnated my nose. I asked Peter to help track it down, but his sense of smell only extends to candles and perfume, both of which he dislikes intensely. I was on my own.

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“Welcome to Dementialand: Living, Loving and Laughing through Alzheimers and Related Dementias” is an informative blog by Elaine Eshbaugh, PhD. A gerontologist at University of Northern Iowa, her expertise centers on many things we caregivers need to know. She has written a series on how dementia changes the way individuals experience the world, one post about each of the five senses. “Smell” couldn’t have been more timely for me.

“Many people…notice that as they get older, they no longer detect smells like they [did] in the past. However, the change…for individuals with dementia is more severe and can even be dangerous.” Burning food and smoke, for example. “Smell has an important function for us,” she says. “…People with dementia may lose the ability to interpret certain smells as signs of danger.… Smoke alerts us to fire…that connection is eventually lost for people with dementia.”

Eshbaugh’s words reminded me that my husband’s grandfather, over ninety then, had nearly set his house on fire because he forgot he’d put the kettle on for tea. Not long after, Peter’s dad had to move the old fellow to a nursing  home, because of his own Parkinson’s. He could no longer look after his father. Peter burned up our electric kettle several months ago when he put it on the gas stove to boil. He didn’t smell it smoldering, and I, upstairs reading, didn’t either. The next morning when Peter picked up the kettle, chunks of plastic fell off the bottom. I realized what happened, but he didn’t. He had no memory of it and wondered why the kettle wouldn’t work.

“Smell also alerts us to spoiled food. … It doesn’t work that way for people as dementia progresses,”  Eshbaugh writes. “Keep in mind that our actions are based on how we experience the world. Dementia alters [that] by changing sensory perceptions. … And those experiences are based on what they do and do not taste, see, hear, touch, and smell.”

And that brings me back to our stinking basement.

screen-shot-2016-10-05-at-4-03-12-pm

screen-shot-2016-10-05-at-12-19-25-pmThe mystery wasn’t solved by Friday evening and I was tired. I decided to fall back on a frozen pizza from the basement refrigerator. When I  opened the freezer a stench rolled out like a London fog, yet everything inside was solid. I opened the fridge door and gagged. Hm, something suspicious in the crisper drawer.

Ah-h, two formerly frozen packages of trout my friend John had brought us months ago. I’d planned to fix them one night, then changed my mind. I asked Peter to put them back in the freezer, but obviously, he’d put them in the fridge instead. I never thought to check, then or while I sleuthed.

Since he can’t smell anything, he got the task of triple-bagging the reeking fish, dousing them with baking soda, and trashing them.

Nancy Drew would have laughed at my noticeably lacking skills.


The National Society of Newspaper Columnists contest winner, 2016 —

online, blog, & monthly under 100,000 unique visitors category.

Caregivers’ resource: “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and other Dementias,” Elaine Eshbaugh, Phd.

 

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

Ten more years.

We set off for Charleston, West Virginia just before 9:00 a.m. Our destination was the US Customs and Immigration Office (USCIS). My English husband had to be photographed and fingerprinted so he’d be a legal permanent resident for another ten years.

Our little corner of Virginia is tucked into an indent in West Virginia’s border. The drive is a beautiful one that hugs the New River as it flows north, continuing to carve away at the Allegheny Mountains as it has done for millennia.

As happens so often these days, a thought lodged in Peter’s mind. Over and over, like a needle stuck on one of his 78 rpm records, he said, “I can’t imagine how they moved all these rocks and trees to make this road, can you?” I always try to answer his questions until I realize he’s in repeat — in my mind it’s “rePete” — mode. After about the fifth rePete I murmer the noncommittal and very useful British “mmm.”

Even with a stop for coffee, we arrived in Charleston two hours early. “Arriving at your destination. Turn left. Turn left here!” the GPS nagged frantically.  Silly thing failed acknowledge the median down the middle of the street. I had to drive another two blocks to make a U-turn in order to truly arrive.

The name on the building wasn’t the same as the information USCIS had furnished, so I parked and went inside to make sure we were in the right place. We wanted to have lunch before Peter’s two o’clock appointment.

Not only was it the right place, but the young man in charge offered to process Peter right then. He began to sign in and, as I often do, I tried to help. I was told politely that Peter was to do it himself. I whispered to the fellow that my husband has dementia and would need some prompting. He whispered back that he understood. “We’ll take care of him,” he said.

He handed Peter additional papers and a pencil. It was the very same form I’d completed on-line several weeks earlier to expedite the process! Peter worried about using a pencil instead of a pen, but I assured him that’s what they wanted.

“Hm, do you think his eyes are hazel,” the young man asked when Peter completed the paperwork. “I think they’re blue,” he said as he studied my husband’s eyes. Difficult for Peter to hold eye contact for so long, but he managed.

“Well, he’s always said ‘hazel.’ But he did start to write ‘gray’ for eyes and ‘hazel’ for hair color,” I said.

He laughed. “OK, hazel they are.”

Peter was processed quickly — no messy ink these days, nor film either — and we were on our way to lunch within minutes. At his scheduled appointment hour, we were almost halfway home.

The drive was punctuated with another question that had snagged in his brain. “How long before I have to do this again?”

“Ten years. They probably won’t even care by then,” I said. “And I certainly wouldn’t drive you to Charleston anyway!”

“Why not?” he asked.

“Can’t drive a wheelchair on the interstate,” I said, and we laughed.

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National Park Service photo.

 

Header photo: New River, Virginia, Eric T.Gunther, Creative Commons Attribution.

Always something new to remind him.

A bubble flood in our kitchen several years ago started a sticky note tide in our house. That sudsy event showed me that I needed to be more vigilant. It was time, past time really, to attach little reminders around the house for Peter. First were the under-kitchen-sink soaps. Then came notes on certain light switches, followed by color-coding to match keys to doors — red for one set, purple for another.

Soon, tv remote, wastebaskets, dog food bag, garbage disposal switch, bottle of hand soap, toothbrushes all had instructions stuck on or  near them.

A small dry erase board propped near the coffee maker each morning announces the day, DSC00769_2date, and year with reminders about activities and appointments for that day. Several years ago I tried an extra large calendar for Peter to fill in, but he couldn’t, or wouldn’t, do it.  Calendars were useless, he complained. In truth, in years past when he wanted to keep track of things or plan a trip for instance, he did an engineering timeline. Fair enough, I never understood his timelines anymore than he understood calendar squares.

Now, once again, a large calendar resides on the kitchen counter. Difference is, I fill in the spaces and I outline significant dates in red — birthdays, Valentine’s day, Christmas, our anniversary. Waste of red ink, that idea.

Every few days Peter asks if I need something from Kroger’s. He’s always Screen shot 2015-01-17 at 4.03.05 PMliked grocery shopping and he can walk there with purpose and, more importantly, he doesn’t get lost. I give him a little sticky note, even if there’s only one thing on it. Three items are his limit, but even so, most of the time he doesn’t remember he’s got a list and will come home with an odd assortment he thinks we might need — yogurt, a few bananas, a Hershey bar. He always insists the latter must have fallen into his bag because he certainly didn’t buy it. I laugh at the thought of all those Hershey bars jumping onto the check-out conveyor and sliding into his bag.

Now, I’ve started putting bright notes inside some of the kitchen cupboards to remind him where certain things go. The salad spinner for instance. I use it several times a week. It lives conveniently in the cabinet toDSC00756_2 the left of the sink. Peter always empties the dishwasher, but lately he’s started stashing the spinner wherever he sees an empty space — in the cupboard where seldom used things reside, or maybe in the laundry room pantry. When I’m fixing dinner I do not want to look all over to find this essential tool. One day I’ll break something with all the door- and drawer-banging that accompanies my search!

I do know that washing lettuces for a tossed salad is significantly less of a problem for me than trying to cope with his tossed mind is for Peter. I try to keep that thought in my mind when I get frustrated with him over something so silly as a salad spinner.

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Bubble troubles suck.

Ever since he retired, Peter has cleaned up the kitchen after dinner, no small job when I cook. He’s always been rigid about loading the dishwasher, as an engineer would be, but now he stacks and restacks, never sure he’s done it right.

These days he doesn’t actually  wash the pots and pans, but he dries them meticulously. I grit my teeth and remind myself to wash them before I use them. Recently, I got a pan out and realized it had gone directly from stovetop to pot drawer — mashed potato bits were still inside.

It has become my job to put the detergent in the dishwasher and either turn the machine on right away or set the timer. My husband has a history of putting liquid Dawn in the dishwasher because he forgets it’s only for use in the sink. We’ve had bubble floods several times. If that happens, and I’m not close by, he panics and can’t remember how to turn the dishwasher off, nor that the wet/dry shop vac lives right at the bottom of the basement stairs.

At least, by the time the mess is mopped up the kitchen floor is cleaner that it has been in weeks! Both the liquid Dawn and Cascade powder are labeled so he’ll know which to use, but he doesn’t always read them.

Over one Christmas holiday, the guys — Peter, Martin and Bill — were to have day out. Before they left, I noticed suds oozing up in the sink. “I hope you didn’t put washing-up liquid in the dishwasher…” I said to Peter. He was positive he hadn’t and it was already cycling with no apparent problems.

Screen shot 2014-10-05 at 11.53.13 AMBut a few minutes after they left, I noticed a dribble of water on the floor in front of the dishwasher, then a frothy stream. I peeked inside. Betty Grable needed those bubbles for her bathtub scene in “My Heart Tells Me” (1943).

Carolynn was here helping fix dinner. She ran to get the shop vac, I grabbed old towels to soak up what I could, and together we attacked the bubbles and water, proud that we were coping so brilliantly!

“Mom, turn it off!” she yelped suddenly.

Water was shooting out the vac’s exhaust and spewing across the kitchen. The vac was more than half full of soapy water, so we dragged it outside — that much water is heavy — and managed to dump it down the carport steps.

Then she suggested that she hold a big leaf bag over the exhaust’s opening, a prophylactic of sorts, while I finished clearing the dishwasher. The bubbles were nearly all sucked up when she yelled again, this time while laughing hysterically. “Turn it off! MOM, TURN IT OFF!

The bag, inflated from the powerful exhaust, was pulling the vacuum cleaner into the laundry room. My daughter was skidding along behind it, while I slid to the floor laughing.

We were Lucy and Ethel in a scene even they never imagined.

 

 

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.