Joy ride.

Posted on August 30, 2015 by judithclarkewrites under Alzheimer's, Caregiver, Childlike, Chores

“It’s the little things,” was another of my husband’s “old granny” sayings. Peter repeated the phrase often as a way to dissect any quarrels we had. We’ve never argued over the big stuff, but his whiskers in the just-cleaned bathroom sink sets me off, and he hates the way I coil up the garden hose.

Nowadays it’s the little things we do that he enjoys, although he doesn’t want to do anything that will mess up his routine. Our horizons have become limited.

Yesterday I forced myself to do errands, really boring stuff — buy dog food, find special batteries, get wood to replace clothesline poles. I figured Peter would want to go with me and, yes, he was ready within minutes. He misses being able to run the errands himself, and I miss that he can’t do them anymore. Even though I would’ve liked to come home after the last stop, I took us to lunch at a restaurant where he’d never been. That threw him for a loop because the menu was unfamiliar, as were the beer choices. I encouraged him to order a burger. Good thing it was excellent, because the beer I suggested was only so-so.

After lunch, I realized we were just around the corner from a car wash, so I whipped in there. Peter’s eyes were like a kid’s at Christmas. I had to laugh. I pulled the moon roof back so we could watch the giant mops swish over us. After his initial, childish delight, his engineering persona took over and he marveled how the washing system was set up. “How’d they do that?” he asked, as he always does of anything that smacks of good engineering.

For Peter, it was a perfect day out. For me, I’m glad such a little thing made him happy…I still hate to run errands though.

There are two types of people in this world, those who would take an Alzheimer’s patient on a joy ride and those who would say it was
a waste of gas.”

Header photo: My sun roof gets washed.

2016 National Society of Newspaper Columnists’ contest finalist.

Attention span of a goldfish.

Posted on August 22, 2015 by judithclarkewrites under Advice, Alzheimer's, Caregiver, Chores, Dementia, Experts say

Ten symptoms of caregiver stress were listed in an Alzheimer’s Association newsletter with this caveat: Alzheimer’s caregivers frequently experience high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.

No kidding!

In any given day I deal with several of these, and I’m sure other caregivers do the same:

Denial – Early on, I was convinced that if I kept trying to force Peter to remember things, to eat right, to get out more he’d at least maintain his status quo.
Anger – Screams, like geysers ready to erupt, lurk just below the surface of my “looking for laughs” demeanor.
Social withdrawal – Sometimes it takes too much effort do anything at all, much less be sociable.
Anxiety – I’ve finally done what I should have done sooner: hired more help for Peter and for me. What a difference to have the house cleaned and tidied by a young lady who is energy personified, the garden maintained by a woman who knows first-hand what it’s like to be a caregiver, niggling tasks done by a handyman friend.
Depression – Big mistake to think that I didn’t need anti-depressants. Hindsight and a meltdown proved me wrong.
Exhaustion – I used to keep my house to a certain standard, not the same white-glove-test standard my mother used, but I kept the dust bunnies at bay, food in the fridge, cookie tin filled, laundry done. When I realized it had been weeks since I’d cleaned the bathroom or changed our sheets, I knew I needed more help. (see #4)
Sleeplessness – Guilt wakes me in the wee hours, especially when I’ve crabbed at him for things he can’t help. Peter’s attention span is worse than a goldfish’s and he’ll ask the silliest things over and over. Within a few seconds he forgets I yelled and when I apologize he doesn’t know why.
Irritability – No one has ever called me patient. Lately Peter has started reorganizing the pantry every few days, lining up jars and moving boxes so I can’t find anything. Most wives would be thrilled if their husbands undertook that task, but I’m an angry bumble bee.
Lack of concentration – I used to be so organized, so tidy, but no more. My personal spaces are in the same sorry state as my mind.
Health problems – Many times I wonder if his dementia has rubbed off on me. Am I losing control too? Is it stress, or am I destined to be a statistic as well?
I talked to my doctor. He did the basic tests and I passed. “Stress,” he said, “it’s stress. You’re doing fine, but take time for yourself, do what you can to alleviate stress.”

My mother always said, no matter how bad things may seem, there’s always someone who is worse off than you. I’m glad I’m not a goldfish.

2016 National Society of Newspaper Columnists’ contest finalist.

Laughter, always the best medicine.

Posted on August 9, 2015 by judithclarkewrites under Advice, Alzheimer's, Caregiver, Chores, Dementia, Nag

This caregiving business is a series of lessons on the run. I have an “ah ha” moment almost every day.

Take today.

Every morning, I put our prescription meds into two shot glasses — Peter’s on the left of the coffeemaker, mine on the right. He takes an 81 mg aspirin, Losarten for blood pressure, Wellbutrin for mood, Livolo for cholesterol, and Vitamin D3 because dementia patients are thought to be lacking in the D vitamin. Oh, and Namenda, the well advertised medication thought to slow the effects of dementia-related diseases. How could I forget that one?

After dinner, I dole out Glucophage, the supposed answer to leveling his blood sugar levels since he won’t leave sweets and carbs alone no matter how often the doctor explains nor how often I nag. Just before bed, he takes Donepezil (Aricept), to treat confusion, possibly improve memory, awareness and the ability to function.

How well do these meds, particularly Nameda and Donepezil, perform? I have no idea. I do know that his taking pills from the wrong shot glass was an important lesson-in-waiting for me this morning.

I discovered the mistake when I poured my second cup of coffee. Peter was already watching West Ham beat Arsenal. “You haven’t taken your pills yet, Peter. No, wait! Mine are gone and I never take them until after my coffee!”

He had no idea what I was talking about. So much for awareness.

“Did you take my pills?” I asked, showing him the little empty glass. “Yes, you took mine.” I answered my own question.

“I don’t know…probably,” he said. “What will happen to me?”

“Hm, well, my super prescription vitamin may give you a boost. Maybe you’ll have the energy to mow the grass…” I laughed at my own joke as he made a face that said, “Not bloody likely…I’m watching soccer.”

I didn’t expect that he’d cut the grass, and he didn’t. But, lesson learned, from now on I’ll keep my medications in a secure container in my pocket.

Ah ha! A beer-on-a-stick might work.

Header photo: Morning glories keep their eyes on Peter.

2016 National Society of Newspaper Columnists’ contest finalist.

Don’t dwell on the disease…

Posted on August 1, 2015 by judithclarkewrites under Alzheimer's, Caregiver, Defined

No disease should be allowed to have as its victims both the patient and the caregiver. But that is exactly what is happening every minute of every day.”

—Meryl Comer, Slow Dancing with a Stranger:
Lost and Found in the age of Alzheimer’s (2014)

[Author Meryl Comer] argues persuasively that we can’t “age-proof our lives” and that this disease, “the dark side of longevity,” is a “looming health catastrophe” for us all. “My greatest fear,” she writes, “is that mine will be the family next door by midcentury.”

— Jane Gross, The New York Times, September 1, 2014

…Value the moments, the pearls of wisdom,
their smile and humor.”

— St. Elizabeth

Header drawing: Alzheimer, Krankheitsfälle d. spät. Alters. Verlag von Julius Springer in Berlin. Plate 5, Fig.2, “accumulation of lipoid material in a plaque near a capillary. becker.wustl.edu

2016 National Society of Newspaper Columnists’ contest finalist.

There’s always hope.

Posted on June 20, 2015 by judithclarkewrites under Alzheimer's, Caregiver, Dementia, Statistics don't lie

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.

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.

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!

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!

11165067_1122051104475978_1668361203311054294_o

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

Header photo: Clematis climbs the light post.

2016 National Society of Newspaper Columnists’ contest finalist.

A life sentence.

Posted on June 3, 2015 by judithclarkewrites under Caregiver, Dementia, Poetic thoughts

Periodically, our long term insurance company arranges for a nurse to come assess my husband — they want to make sure he still has dementia, I guess. Today was the day. We were lucky to have Caroline again. Peter clicked with her before and again today.

The questions she asks are almost exactly the same as those his neurologist asks, and we were at her office yesterday. They want to know if he has any physical limitations, dizzy spells, or loss of strength, and if he can do household chores or handle bill-paying.

No, no, no, no, and no.

The hardest questions for most dementia patients are: can you name the day of the week, the month, the year, the season?

No, no, no, and no.

“Now I’ll ask you to remember three words,” Caroline said. Peter groaned and she smiled, but went on. “You’ll get one point for repeating the words correctly right away, and then again after you’ve either counted backwards from one hundred by sevens, or spelled the word “world” backwards. OK?” Peter nodded. “Your words are table, book, tree.”

“Table. Book. Tree,” he said. One point.

“Now, would you rather count backwards by sevens or spell “world” backwards?” she asked.

No hestitation. “D-L-R-O-W.”

“Great!” Caroline said. “Now, the very last part.” She handed him her clipboard and asked him to copy the multi-sided figures shown. After that she asked him to write a simple sentence.

“Sentence about what?” Peter asked.

“Anything at all,” she said. “A short sentence, but it has to make sense.”

Peter quickly copied the three figures, and after thinking a few seconds he wrote a sentence.

She looked at the clipboard. “Oh-h, that’s so sweet,” she said. She showed me his sentence: “I still LOVE my wife.”

Even though he didn’t score as well as he did the last time she was here, my unsentimental, undemonstrative husband got an A+ from me.

Header photo: Swans at Middle Gardens, Charleston, SC, May, 2009.

2016 National Society of Newspaper Columnists’ contest finalist.

Caregiver needed. Flexible hours.

Posted on March 30, 2015 by judithclarkewrites under Advice, Caregiver

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.

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.

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.

Header photo: The British Museum, 2006

2016 National Society of Newspaper Columnists’ contest finalist.

Magic pills? Wonder drugs? Snake oil?

Posted on February 2, 2015 by judithclarkewrites under Caregiver, Dementia, Experts say, Sickness & Health

She’s his advocate, his ears, his caregiver. She’s an attractive blonde, late forties perhaps, who takes care of her father in a new tv commercial. They look alike and maybe they’re really related. Perhaps it isn’t a made-for-tv reenactment.

The spot promotes Namenda (memantine hydrochloride) XR, a medication long prescribed for people with moderate to severe Alzheimer’s. The new extended release (XR) version, with seven additional milligrams of the active ingredients, offers once-a-day convenience. Used in combination with another commonly prescribed drug, Aricept (acetylcholinesterase inhibitor, AChEl), the two may keep symptoms from worsening, at least for a while.

This is one of those commercials that urges you to ask your doctor about this drug for your loved one. An announcer gives the laundry list of side effects: nausea, vomiting, diarrhea, constipation, loss of appetite, dizziness, tiredness, weight loss, swelling in hands or feet, fast heart rate, easy bruising or bleeding, unusual weakness, joint pain, anxiety, aggression, skin rash, redness or swelling around eyes, or urinating more than usual. Makes you wonder why you’d want something that might add to your loved one’s misery. Frankly, I think all those “ask your doctor” commercials should be banned, but that’s a post for another day.

Peter has taken both drugs for more than five years with no side effects. His neurologist asked recently if I thought the meds were helping. “How would I know?” I said. She shrugged.

The commercial oozes warm fuzzies. We see the concerned, loving daughter, her young children, and her sweet-faced father who is included in their activities, but who seems vacant, absent. “All my life he’s taken care of me,” she tells us, adding that it’s her turn to take care of him.

All well and good, and we love her for her dedication. But, jeez, am I alone in wondering why we never see the caregiver’s frustration? Neither medication is a cure. The best science can do is slow the disease for a while.

And what can science do for caregivers? Is there a magic pill for us?

If a camera were mounted in a corner at our house, it would record smiles, yes, and silly laughter, but it would also record heated talk, lip-biting, teeth-gnashing, hair-pulling, and tears behind slammed doors. The camera would see me trying to read, uninterrupted, for fifteen minutes. It would see someone else cooking, cleaning, making appointments, counting out pills, and making endless cups of tea to sooth upsets, his and mine.

Oh yes, I know there is help for some of those tasks, but I can’t—won’t, not yet—delegate most of them. Our wedding vows weren’t the traditional ones, but I did, “…promise to honor and tenderly care for you…through all the changes of our lives.”

A camera would also see the occasional enveloping hug, and Peter asking, as he always does, “What would you do without me?” At my eyebrow-raised, tilted-head glance, he would change his question to, “I mean, what would I do without you?”

And, as we always do, we’d laugh at his little joke. Truth is, I often don’t know what to do without him.

Header photo: Peter and I at river’s edge, 2014.

2016 National Society of Newspaper Columnists’ contest finalist.

The day after the shortest day.

Posted on December 22, 2014 by judithclarkewrites under Caregiver, Lifelong, Seasons

It’s that time of year when even the faintest skiff of snowflakes causes visions of sleds and snowmen to dance in my head. Haul out the snow shovels, check the windshield wiper fluid, find the mittens and mate them. Baby, it’s cold outside.

Christmas is just five days away, and the weatherman has hinted that there’s a slight chance we’ll have a white one. Is that Bing Crosby crooning? Do you hear what I hear?

As always, I can hear my dad saying, “Shortest day of the year. Won’t be long until time to cut the grass.” He said that for as long as I can remember. Maybe he was onto something. Now that I’m certified elderly, the days fly by so quickly that it really won’t be long to cut the grass. Heck, son-in-law Martin just mowed his for the last time this year a week ago!

In June, Dad always remarked on the summer solstice too. He was nothing if not set in his ways.

In my email this morning came a reminder of another sort — one close to my mind and heart — about solstices.

Today is the winter solstice — the shortest day of the year. But we’re already looking ahead to the summer solstice and The Longest Day®, an event on June 21, 2015, to raise funds and awareness for the Alzheimer’s Association.”

The message goes on to say, It will be “a day of sunrise-to-sunset activity to symbolize he challenging journey of those facing Alzheimer’s disease.”

This is brand new information to me, but I’m thinking ahead, just as my dad always did, to June 21 and what I might be able to do on The Longest Day®. Read more about it here.

A sunrise mimics the Alzheimer’s Association purples.

I published this post yesterday, December 21, 2014, on my other blog, “Wherever you go, there you are.

2016 National Society of Newspaper Columnists’ contest finalist.

Double whammy in four pages and sixteen hundred words!

Posted on November 18, 2014 by judithclarkewrites under Autism, Caregiver, Dementia

Comedian Jerry Seinfeld opened the door for me — figuratively, not literally.

Brian Williams, NBC Evening News, did an interview with Seinfeld (11/6/14) to showcase his fifth season of “Comedians in cars getting coffee” web series. Seinfeld veered from the topic however, when he told Williams he’d decided he was someplace on the Autism Spectrum. He’d seen the Broadway play “The curious incident of the dog in the nightime” based on the book by Mark Haddon, and he recognized himself in lead character Christopher Boone. Young Boone, uncomfortable with eye contact, being touched, and with people in general, all common autism traits, is not labeled in the book or the play.

“I’ve always been a literal person,” Seinfeld said. “So, if someone says [their child] is the ‘apple of their eye’ I don’t know what that means. There’s no ‘apple’ in an eye.”

He went on to say he’s observed in himself behavior that makes him think he may have autism. “I think, on a very drawn-out scale, I’m on the spectrum,” he said. “Basic social engagement is really a struggle. … But I don’t see it as dysfunctional. I just think of it as an alternate mindset.”

When I watched the interview and a follow-up the next evening, I realized it gave me the opening I’d been looking for to go beyond dementia in this blog. In “Thinking for two” (9/15/14), I wrote: “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.”

The “separate issue” I hintedatwas known as Asperger syndrome (AS) until two years ago. For some years, AS was considered a less severe form of autism. Long before dementia and possible Alzheimer’s disease entered our lives, Leslie described AS to me. I’ve always loved hearing my daughters talk about their careers, Leslie’s teaching related to autism spectrum disorders,* and the drama that is inherent in Carolynn’s oncology nursing field.

[*The American Psychological Association did away with the term Asperger’s Syndrome in 2012. But it was years earlier that Leslie enlightened me about AS, so I will use the term here, and stand corrected by my daughter later.]

In our long-ago conversation Leslie explained that people with the diagnosis frequently were slow to talk as children, unable to converse as adults, couldn’t look others in the eye or show emotion, and they weren’t necessarily personable.

“That sounds like Peter!” I said. “His mother had a stack of books she’d read when he was little to try to figure out why he wouldn’t talk. He was such a loner, but always comfortable with much older people or much younger children.” That was still true. I didn’t know whether to laugh or cry.

“I didn’t know all that, Mom,” Leslie said, “but, you’re right, a lot of of the characteristics apply, and goodness knows he’s uncomfortable in social situations.”

She said she’d test him — Leslie can get Peter to agree to anything — and thus that part of our journey began.

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Dementia isn't funny.

Caregiver Judith Clarke looks for laughs every day.

Category Archives: Caregiver

Joy ride.

Attention span of a goldfish.

Laughter, always the best medicine.

Don’t dwell on the disease…

…Value the moments, the pearls of wisdom,
their smile and humor.”

There’s always hope.

A life sentence.

Caregiver needed. Flexible hours.

Magic pills? Wonder drugs? Snake oil?

The day after the shortest day.

Double whammy in four pages and sixteen hundred words!

…Value the moments, the pearls of wisdom, their smile and humor.”

…Value the moments, the pearls of wisdom,
their smile and humor.”