There were thirteen from our group of  twenty-seven at lunch last week. We usually cause quite a ruckus, chattering and laughing the way ladies who lunch do. Wednesday was no different.

At one end of the table, four of the six of us talked about dementia, more specifically the dreaded “A” word, Alzheimer’s Disease.  What I’m experiencing with my husband now is only one view of what others have experienced with their loved ones.

After I got home I tried to remember how many of the thirteen had been, or still are, on the same one-way road I’m on. Seven! Seven out of those thirteen women have cared for, suffered with, and lost or are losing mothers, sisters, aunts, brothers, husbands. Three more in our larger group are affected in one way or another, too.

There’s no laugh in this post today nor in any of the grim statistics that fall under the umbrella of dementia. But there are these thoughts about the importance of laughter from the Central California Chapter Alzheimer’s Association newsletter:

“There is nothing humorous about dementia. However, laughter can help dementia caregivers and improve the quality of life for those afflicted by the disease. Studies show that laughter boosts the immune system and triggers the release of pleasure-inducing neurochemicals in the brain. In terms of dementia-specific benefits, the greatest advantage of humor is that it provides sufferers with much needed mental stimulation. Humor challenges our loved ones to engage their minds as fully as possible [and] it’s also an effective tool for keeping social links active and reducing…paranoia and agitation that many […dementia patients struggle with.]

— Marcy Oswald, MFTI, Education & Care Specialist

 

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

 

 

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.

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

“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.

 

You don’t forget how to ride a bicycle.

Snow was on the ground when friends Shelia and Jerry first mentioned organizing a day’s cycling adventure once the weather was nicer. We tried to coordinate a date for May or June, but bad weather and household emergencies got in the way. On a brutally hot day this month they brought up the idea again. “Let’s try the Virginia Creeper Trail in September or October, Pete,” Jerry said. “It’ll be cooler then.”

“And the fall colors will be beautiful,” Shelia added.

“Where is that?” my husband asked.

“Southwest, near Abingdon,” Jerry said. “It’s an easy trail. They take you to the top and you coast down, almost never have to pedal.”

Peter wore his worried face. “I don’t think I can ride a bike anymore.”

Jerry winked at me and Shelia said, “Just think about it, Pete. We’ll set a date later.”

My husband knocked off thousands of cycling miles a year, even while he was still working, more after he retired. He has a custom bike that is the envy of anyone who knows bicycles, but he hasn’t ridden, not even his “junker,” in at least five years. “I’ll get lost,” he always says.

He’s forgotten so much, but he remembers the concussion he got in a bike race years ago. He slid out on wet pavement — no helmet — and hit his head. He blames that on his memory loss, and maybe that’s why he won’t commit to a ride, even on a local trail.

elephant_can_t_remember_how_to_ride_a_bike_postcard-r3ee9a2446d324d96b954577223d41f58_vgbaq_8byvr_512

After our friends left, I said I thought he’d be able to ride the Creeper trail. “Why don’t we take our bikes out and ride around the block to see how you — how we — do,” I said.

“I might fall off.”

“Riding a bike is like riding a horse,” I said, twisting the old catchphrase. “You don’t forget, and if you fall off, you get right back on again.”

“You remember the last time I rode a horse, don’t you? The horse died the next day!” His face turned red and his eyes watered, he was laughing so hard. Dementia hasn’t erased that memory.

That poor horse died more than forty years ago. We hadn’t even met when it happened, but we’ve laughed about it for years.

Header: Huckleberry Trail, 2014.

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

On canyon’s edge!

Three years ago I published my first post, “We’ve arrived, and to prove it we’re here,” on my new blog, “Wherever you go, there you are.”  A year later, August 6, 2014, I published my first post for this, my second blog.

I often think about how the subject matter of this blog has affected what I intended to write about in “Wherever you go, there you are.” As my husband’s dementia has worsened, traveling anywhere, even to the mall, can be a problem. His wardrobe needs to be replenished but he won’t go willingly to look for new shirts,pants, or shoes. If I try to buy things and take them to him, he won’t wear them. He didn’t even like the socks I bought.

I knew our last big trip in 2011 was our final trip — Peter got lost, at night, at Bryce Canyon, Utah. He wanted to hear a talk in the main lodge, within sight of our room. It was daylight when he left, and would be daylight when he returned. He went by himself.

Dusk fell. He wasn’t back. I raced to the main lodge, panicked because I’d let him, urged him, to go alone. 

When I got to the desk, terrified and gasping, I could hardly speak. The staff jumped to action. Grounds crew sped out in golf carts, while I stayed behind and paced. It wasn’t long before the desk clerk beckoned. Peter had called! My husband, who never uses a phone, had the presence of mind to go into a dorm, knock on someone’s door and ask to use their phone.

“Stay right there, we’re coming,” I said. I hopped in with a groundskeeper and we rocketed through the dark.

Peter was inside a lighted entryway. He grabbed me and apologized over and over for getting lost. He was shaking. He’d never go off on his own again, he promised. “But it was my fault,” I said. “I should’ve gone with you.”

Neither of us slept well thinking what could have happened. I knew that trip was our last. No way could I cope with the escalating need to keep closer tabs on Peter, and keep track of travel details too. When we got home I tucked our luggage away and made a photo book of our travels to remind us where we’d been.

Now, the smallest outing is an event. We don’t go far, but we have mini-adventures. “Others deal with far worse,” my mother would’ve said, and I know it’s true. Besides, in the end, there’s no place like home.

Header: Queen’s Garden, Bryce Canyon, Utah (2011)

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

 

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.

Screen Shot 2015-09-22 at 5.18.02 PM

 

Don’t dwell on the disease…

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

 

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

Celebrate ‘Poppy’s hope!’

The Parade magazine in today’s newspaper features a cover that shouts: People Power: how caregivers and advocates are piecing together a better world for people with Alzheimer’s.

DSC09461

Poppy hopes.

Yesterday I posted about the Alzheimer’s Association’s fund raising event, The Longest Day™,  that’s taking place today. Though a small effort among the hundreds of teams and tens of thousands of dollars that will be raised, Carolynn’s “Poppy’s Hope” challenge has now reached a very respectable one thousand dollars.

 

Screen shot 2015-06-20 at 10.30.20 AM

 

DSC09331

The art of losing isn’t hard to master;
so many things seem filled with the intent
to be lost that their loss is no disaster.

Lose something every day. Accept the fluster
of lost door keys, the hour badly spent,
the art of losing isn’t hard to master.
Elizabeth Bishop (1911-1979) Geography III [1976]. One Art.

 

DSC01013_2

Even memory is not necessary for love. There is a land of the living and a land of the dead and the bridge is love, the only survival, the only meaning.
— Thornton Wilder (1897-1975) The Bridge of San Luis Rey [1927], last lines.

 

DSC01003

It’s a poor sort of memory that only works backwards,” the Queen remarked.
— Lewis Carroll (1832-1898) Alice’s Adventures in Wonderland [1868].

 

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment.
— Buddha.

 

DSC01061

We don’t know how strong we are until being strong is the only choice we have.
— Alzheimer’s Disease Awareness.

 

 

There’s always hope.

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

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

11160623_10205473130926745_8702219380988922005_o_3

‘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.

Screen shot 2015-01-20 at 4.22.16 PM

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.

Screen shot 2015-06-19 at 1.46.40 PM

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!

Screen shot 2015-06-20 at 10.30.20 AM

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.

 

Caregiver needed. Flexible hours.

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

DSC00576_2

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.

DSC07510_3

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.

 

Magic pills? Wonder drugs? Snake oil?

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, Screen shot 2015-01-31 at 5.05.22 PM_2vomiting, 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.

Screen shot 2014-09-13 at 11.08.38 AM