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. 

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

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

2016 National Society of Newspaper Columnists’ contest finalist. 

Memory loss associated with Alzheimer’s reversed for first time

I found this  post on Mark Wheeler’s “Seven Spheres” blog. I’m forever reading about all the facets of this huge umbrella under which we live — dementia. I grasp at any straw. The fact is that Peter is nearly 77, set as solidly in his ways as if he were cast in cement, and stubborn to boot. I’d love to try the methods described in this article, but I don’t think he’d go along with it, nor would I have the strength or patience to keep prodding. But by reblogging Wheeler’s post here, I hope at least some of my caregiving followers can glean help from his words and the research behind them.

Alzheimer’s: the elephant in the room.

In 1906, Dr. Alois Alzheimer identified the disease that came to bear his name. In 1979, Alzheimer’s Disease (AD) caused 875 deaths in this country. That was the first year AD was identified as a separate cause of death. By 1993, more than 18 thousand people in the U.S. died from AD.

• Approximately 5.3 million Americans currently live with AD.
• Some 200 thousand of that number have early-onset AD — people in their forties and fifties.
• Every sixty-eight seconds another American is diagnosed.
• AD has been listed as the sixth leading cause of death after heart disease, cancer, chronic lower respiratory disease, and accidents. However, in March, 2014, the American Academy of Neurology reported AD is now the third leading cause of death.

Warning signs of AD:
• Profound memory loss
• Inappropriate behavior or behavior swings
• Apparent confusion and agitation
• Difficulty with spoken or written language
• Difficulty with routine tasks, such as bills
• Problems with vision and understanding spatial relationships
• Signs of impaired judgment and reasoning

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Whenever I walk into a room, everyone ignores me. (Coldell cartoon)

 

Dementia is a symptom.  AD is one cause of the symptom. Dementia is considered the general term for decline in mental ability severe enough to interfere with daily life, memory loss for example. Experts agree that AD is the most common and accounts for as many as 70 to 80 percent of all cases.

Among dementia’s many other causes are Lewy Body disease, Parkinson’s disease, Vascular or multi-infarct dementia, fronto-temporal, and thyroid disease. Most are not reversible, rather they are degenerative diseases of the brain that get worse over time.

Too often, a doctor will tell the patient that he or she has “a little dementia” or in my husband’s case, “mild dementia.” Patient and family leave the office feeling relieved that it’s only dementia and not Alzheimer’s. I know I did. When we got into the car to come home I started bawling. Peter wondered what was wrong with me. I almost never cry.

“I thought she was going to say you have Alzheimer’s,” I told him.

“You mean I don’t?”

“No! It’s just dementia.” We even went to our favorite place for coffee and pastries to celebrate.

“Dementia” isn’t funny, but laughter in large doses does help. I can no longer ignore the elephant.

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Sipress cartoon.

 [Facts and figures taken from on-line sources which show varying, but similar, statistics.]

Header photo: Rain on my sunroof.

2016 National Society of Newspaper Columnists’ contest finalist. 

Keep calm and (try) to carry on.

My husband was diagnosed with dementia five years ago. He still knows the family, he remembers friends’ faces but not their names necessarily, he no longer knows what the garbage disposal is for, and although fiercely independent when we met forty years ago, he couldn’t live on his own now. As long as I can carry on caregiving, he won’t end up in a nursing home, in spite of his occasional jokes that he’s picked one he likes.

I’ve done a lot of research on-line to find helpful tips.  Here are some:

1. Be complimentary. Especially in the early stages individuals may realize something is wrong. Compliments make them feel better. Peter can be helpful around the house, and one thing he’ll do willingly is run the vacuum cleaner for me. It’s hard for me to do the stairs, but he does that well. Just a few days ago I told him what a good job he’d done.

“What did I do wrong?”
“Nothing! You did a very good job,” I said.
“Oh, I thought you were going to make me do it over.”
“No-o, you did an excellent job. I’ve been letting my jobs slide,” I said.

2. Focus on abilities the person still has, rather than the ones he’s lost. This one has been so difficult for me. He used to do so many little tasks, fix big things, work on the cars, sort out my computer, unravel problems, logically think things through. I was lost without that support. Slowly I’ve built my own ways to cope, and have found people to help out.

3. Help the memory-challenged person communicate. He may have trouble finding the right words. Fill in the blanks. For the longest time, if Peter was stuck trying to say something I tried to will him to think of the word. I figured it would help him.  But filling in the blanks is the way to go. If he’s lost the word, it’s gone, erased from his lexicon. But he, like most people with these kinds of memory issues, comes up with other words that work.  I recently found a scrap of paper with his writing on it: Face shaver, it said. I figured he needed a new razor so I bought one my next trip out.  If he wondered how I knew, he didn’t ask.

4. Establish a daily routine but be flexible, allow plenty of time to get ready, have something to do if you have extra time, never argue, enter their reality. This has been darn near impossible for me. Peter has always been late getting ready for anything, and I’m always ready way ahead of time.  His reality has always been, I’ll get ready when I’m bloody well ready to get ready. Over the years, I’ve yelled, stomped, raged, even left without him. But now that he truly can’t manage — he often forgets why he went upstairs and ends up working on his model ship instead of getting showered and dressed — I’m trying extra hard to be patient. I grit my teeth ’til they hurt and seethe until my ears are inflamed.

5. Nip agitated behavior in the bud. Divert and redirect. His agitated behavior used to cause me to storm like a child, but now I make him a cup of tea — divert and redirect. Works nearly every the time. The English and their cuppas!

6. Use “therapeutic fiblets” as needed. I am not a fibber, and lying to my husband really upsets me. I always expect a big ugly wart to appear on the end of my nose. Still, sometimes, the only way around a problem is to pad it with fiblets.

7. Ask the person to smile. Smiles are contagious. Give a smile, get one. Simple.

8. Ditto laughs. Remember, “Laugh and the world laughs with you, cry and you cry alone.”

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Header photo: Peter, on the beach, Tybee Island, Georgia.

2016 National Society of Newspaper Columnists’ contest finalist. 

Sticky matter isn’t the stickum on a sticky note.

We elder folk will soon be the largest demographic. So it follows that as our population ages, discussions about dementia and Alzheimer’s will increase too. There have long been a number of tests that can show the progression of dementia in its many forms. And MRIs are used to show  the nefarious beta-amyloid plaques in the brain. I recently read this in an eye-opening report by Loren Grush, Fox News (3/11/14):

For decades, conducting an autopsy was the only way for doctors to determine if an Alzheimer’s patient had an accumulation of [so-called “sticky”] beta-amyloid plaques in the brain – a major hallmark of cognitive decline. But over the past few years, brain imaging using an experimental radioactive dye has helped physicians confirm the presence of these plaques while patients are still alive. Now, a new multi-center study has confirmed that this type of scanning can detect early evidence of Alzheimer’s disease, predicting future impairment among patients with little to no symptoms. The radioactive dye, florbetapir (AMYViD), works like a chemical stain in the brain.  Once injected into the body, florbetapir binds and sticks to the brain’s beta-amyloid plaques, helping to estimate the extent of plaque buildup throughout the brain’s regions. Then, through positron emission tomography (PET) scanning, a radioactive tracer looks for chemicals in the dye and produces an image highlighting the positioning of the plaques in the brain. …

My question is, if I were thirty years younger, or if Peter was, would either of us want to know if we were likely to get Alzheimer’s?  Hm, maybe, but I’d want to know there was a total cure or some preventative care that could really slow the disease. Otherwise, if we were still in our forties, I don’t think either of us would choose to live with the specter of Alzheimer’s hanging over our heads!

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Zahn – faadooindia web clip

After all, a little forgetfulness is expected when one reaches a certain age. Sadly, it’s when “a little” forgetfulness turns into “a lot” of forgetfulness that problems arise.

But there’s always time for a laugh.

Header photo: Predictable tiger lilies.

2016 National Society of Newspaper Columnists’ contest finalist. 

Remember to remember.

Way back in 2003 I scheduled Peter for a baseline neurological exam because he’d exhibited a number of angry flare-ups, so very unlike him. During the visit the doctor gave him three things to remember: fire truck, airplane, tree. He remembered all of them, and did well on all elements of the exam which included knowing the day of week, the date, and drawing a clock with a specific time.

A subsequent MRI showed only tiny amounts of the amyloid strands that “clog” thinking. A good sign, the doctor said.

At follow-up eighteen months later, same standard tests, but when the doctor gave him three things to remember — fire truck, airplane and house — he told her she’d changed her list from the year before. She was pleased he remembered and confessed she’d forgotten what words she usually said. He got good marks that day too, though I knew he wasn’t quite as sharp with answers to her questions, plus his usual teasing repartee was missing.

He didn’t say, but he was worried.  So was I.

Every now and then I’d ask him to remember three things I’d list, tell me the day of the week, or draw a clock.  Remembering three things became more and more difficult, he guessed at the day of the week, but he could always draw a clock.

One evening I asked him to draw a clock that showed 6:24.  I tore a page out of my little datebook for him to draw on. “A.M. or P.M.?” he asked.

“A regular old fashioned clock, silly,” I said.

His drawing is below. My scribbles at the top were to show him how a lot of people with dementia draw a clock.  At the bottom is Peter’s clock.  I complimented him on his preciseness, especially the big hand showing twenty-four minutes past the hour. “The little hand isn’t quite right,” I said.  “Close, but no cigar.” Screen shot 2014-08-09 at 12.17.21 PM_2

Nunh unh, no-o,” he said. “When the big hand is coming down, the little hand is moving ’round too. This is right!’

Why did I question an engineer? He was right, of course. The old line, Never ask an engineer the time or he’ll tell you how to build a clock, still applies.

Another year passed and it was apparent Peter wasn’t his old self. Increased memory loss, inability to come up with the words for common items, and confusion about time and place occurred daily. Worse, he was having trouble writing checks to pay bills, and doing routine chores.

Back to the neurologist we went.

She performed those same standard tests. He could no longer remember the three things, nor did he know the day, date, or year. She prescribed commonly used Alzheimer’s drugs: Namenda, to slow dementia’s progression, and Aricept to ease confusion.

Another MRI showed an increase of the “sticky stuff.” Damned plaque! I thought that was only found on teeth.

I scheduled yearly visits.

This past spring the doctor said he was “mid-stage,” though his ability to count backwards rapidly by sevens, another standard test, continues to astonish the doctor and me. I can barely count forward by sevens! But then he is an engineer, numbers and calculations are still easy for him. And he continues to do soduko and crosswords every day, though I’ve noticed a decline in both interest and accuracy.

Though the doctor said “mid stage” I’ve read ahead — he’s exhibiting some “late stage” symptoms. A month ago he couldn’t remember our granddaughter’s name when he saw her picture, he didn’t know what the garbage disposal was for, and simple one-on-one conversations are almost impossible.

Recently, he started working on his 1/78th scale Cutty Sark model ship again — he built the hull and did all the “easy” stuff years ago.  He hadn’t touched it for five years or more. I mentioned this to the doctor because it was encouraging, even though I know there’s no hope for true improvement or cure. She suggested getting him a set of Legos “after he finished the boat.” Peter didn’t react, but I was insulted for him. This isn’t a bathtub toy he’s building after all!

During the visit she asked if he noticed changes in his memory. He said he knew he was “having a hard time,” but he could never forget me. Ah, he can still layer on that olde English charm when he wants to. And the doctor laughed.

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Laugh anytime.

The next day I happened to come home from a luncheon with my name tag still in place. “Oh, I remember your name,” he said.

“You’d better!” I said.

He pointed to my tag and laughed. I didn’t see that one coming.

 

 

Header photo: Rainbow on the eastern shore, Virginia, 2013

2016 National Society of Newspaper Columnists’ contest finalist.