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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Header photo: Bikes parked in a commuter lot, Amsterdam, 2007.

2016 National Society of Newspaper Columnists’ contest finalist. 

Attention span of a goldfish.

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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!

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

  1. 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.
  2. Anger – Screams, like geysers ready to erupt, lurk just below the surface of my “looking for laughs” demeanor. 
  3. Social withdrawal – Sometimes it takes too much effort do anything at all, much less be sociable.
  4. 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.
  5. Depression – Big mistake to think that I didn’t need anti-depressants. Hindsight and a meltdown proved me wrong.
  6. 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)
  7. 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.
  8. 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.
  9. 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.
  10. 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.

 

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2016 National Society of Newspaper Columnists’ contest finalist. 

 

Laughter, always the best medicine.

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 medicScreen Shot 2015-08-09 at 5.49.32 PMation 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.

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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. 

 

Have I done him wrong?

This sentence from an Alzheimer’s Association website article jumped right off the screen at me:

Most people living with Alzheimer’s Disease are not aware of their diagnosis.

What?

“Despite…the benefits of clear and accurate disclosure,” the article continued, “[only about 45 percent] of seniors diagnosed with Alzheimer’s…[have been] told the diagnosis by their health care provider.” And their caregivers don’t know either. On the other hand, more than 90 percent…of cancer and cardiovascular patients do know their diagnoses.

Whoa-a!

There is still only one way to diagnose Alzheimer’s definitively and that’s through brain autopsy. If the person exhibited Alzheimer-like symptoms while alive and the brain tissue contains the microscopic physical abnormalities typical of the disease, a definitive diagnoses can be made.

Physicians can correctly diagnose Alzheimer’s disease about 90 percent of the time while the patient is alive, based on mental and behavioral symptoms, physical examinations, neuropsychological tests, and lab tests.

But there’s still no cure.

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Every 67 seconds, someone in the US develops Alzheimer’s.

Peter’s neurologist diagnosed his dementia about seven years ago. She didn’t use the “A” word, rather she said simply, “Dementia.” I breathed a sigh of relief, and when we got into the car to come home, I started crying. Peter wondered why.

“Because you don’t have Alzheimer’s,” I said, “it’s ‘only’ dementia.”

“Is that good?” he asked.

“Well, no, but it’s better than Alzheimer’s,” I said.

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By 2050, there could be as many as 16 million people with Alzheimer’s.

He asked no further questions then or since. Every now and then he’ll say his memory is getting worse, so I remind him it won’t get better. I’ve never used the dreaded “A” word, but I wonder if I should? Deep down, does he know?

Have I done my husband a disservice by not laying it out? Should I attempt to do it now? If he already knows or suspects, he would never say anything. That’s not his style. He’s always played things close to his chest.

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More than 5 million Americans have Alzheimer’s.

Experts advise telling patients and families because
of the need to:

  • Plan for the future
  • Take care of financial and legal matters
  • Address potential safety issues
  • Learn about possible future living arrangements
  • Develop support networks

Been there, done all that, without having The Conversation. Have I done him wrong, to paraphrase a line from an old Mae West movie? I don’t know.

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I really had to look hard for something to fulfill my laugh-a-day pledge. This one works for me. Hope it does for you.

The doctor says to his patient, “I have good news and bad news.”
‘Tell me the bad news first, Doc.” 
“You have Alzheimer’s disease.”
“Oh no! What’s the good news?”
“You can go home and forget about it.”


Graphics Alzheimer’s Organization©

2016 National Society of Newspaper Columnists’ contest finalist. 

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.

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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.

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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. 

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

Header photo: Flower star, London market, 2006

2016 National Society of Newspaper Columnists’ contest finalist. 

Wise words.

 

Laughter will always be
the best medicine,
Silence will always be
the best revenge,
and Love will always be
all you need.

              — Anonymous

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Still swinging!

Header photo: Basket of Gold alyssum flourishes in our garden.

2016 National Society of Newspaper Columnists’ contest finalist.