Caregiver’s worst nightmare.

Five weeks have passed since Peter went for a walk without Nobby, without my knowing, and without realizing he was on his way to lost.

Five weeks that I’ve been on alert setting door alarms, walking with him when he takes the dog out, researching a tracking device he would tolerate.

Hounding, watching, nattering.

Five weeks trying to make him understand that he can no longer walk out with or without the dog. Five weeks of him slamming doors and stomping to the basement. No, he doesn’t want to be “locked in,” tracked, or told what to do. Who would?

Other caregivers have a much worse go than I do. Others aren’t as fortunate to have outside help and helpful daughters, plus the wherewithal to cover expenses. But that doesn’t stop me fuming over our situation, or trying to make things right when they can go so wrong, so quickly, with no warning.

My caregiving ways reflect my general “fly in the face of convention” attitude. I’ve never done things the easy way. “My way or no way,” Peter would say say. Oh, I do read articles, blogs, and books about dementia and I’ve learned. I’ve listened to advice from the doctor, our daughters, and friends, and I’ve acted upon much of it.

But, I do ignore some of the basic no-no’s for dementia caregivers including don’t argue, don’t ask if they remember this or that, and don’t point out that they’ve forgotten again.

Peter is “luckier” than many. Although his dementia is markedly worse than just a few months ago, he does understand what is happening to him, not because I’ve used the dreaded A-word, but because he just seems to “get it.” He’s an engineer, a problem-solver, who still has a determined stick-to-it-iveness that helps. I’m sure of it.

So, I do point out things that are arguable, I do ask if he remembers then tell him a story about the memory I’ve mentioned, and he does laugh with me and the family when we point out, jokingly, that he’s forgotten something.

Wrong? Perhaps, but for us, for him, it seems to work, seems to keep him in the moment, the now, however fleetingly.

A few days after his long walk, I drove him from our house along the route I think he took to end up five miles away. He was amazed. “Why’d I do that,” he kept asking. “How did I get there?” I did it to impress upon him, as much as possible, that his “escape” was daring and scary, for him and for all of us who searched.

Ignoring the wisdom, until a month ago I did let him walk the dog on his own, and I looked for tracking options only for future reference. Even having experienced that worst nightmare, I think I’d do the same again. He had his freedom as long as possible and now it isn’t possible anymore.

Would I recommend my approach to others? I would not. Every situation is different and what works for one likely wouldn’t work for another.

Oh, yes, it could have been a lot worse. The ending could have been tragic, but it wasn’t. Peter’s still here to growl at me every time I say he must wait to walk until I put my shoes on. He still has to listen while I explain why it’s necessary.

And he’s still here to make me laugh.

Header: Rainstorm over Alaskan waters, 9/7/06

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

Dementia: tragedy, comedy and love story.

“You know I’m not about rainbows and unicorns,” Elaine Eshbaugh, PhD writes in her first blog post of this new year. I’ve been following her “Welcome to Dementialand: Living, Loving, and Laughing through Alzheimer’s and Related Dementias” for some months. She has a “tell it like it is” style that resonates with me.

“If you are one of my regular blog readers,,” she says, “you likely have dementia or love someone with dementia. I am not going to feed you some bullcrap about becoming a better version of yourself or making 2017 the best year ever. For those of you in the trenches of Alzheimer’s or a related dementia, it may seem laughable for me to wish you a smooth path, so I won’t. My wish…is that you have the strength to endure the journey and…know when to ask for help. My hope is that you have a sense of humor to carry you through and a keen enough eye to spot [even subtle joy….”

Wise, but blunt, honest. I like that.

“I wish you hope even if hope has changed,” she says, citing couples who have planned post-retirement adventures that will never happen. Before dementia engulfed us, Peter and I were lucky enough to complete all but one trip on each of our bucket lists. Antarctica was mine, and the Terra Cotta soldiers in China was his. That worked out just fine because he insists he did go to see them, even though it was on t.v.

“Dementia is a tragedy, a comedy and a love story all at once,” Eshbaugh writes in her 12/26/16 post, “Lessons  learned…” She is amazed that families whose lives are impacted by dementia can still find humor in their situations, yet apologize for laughing.  “…They need to stop apologizing for that. No, dementia isn’t funny, but the more moments of humor you can discover on this journey, the better off you will be.”

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Tricky Nobby.

The other morning I laughed at a new trick Nobby, Peter’s dog, managed. Lately, we’ve started blaming him — “Nobby did it” — for the strange things that happen around here. For instance, Nobby often takes his Invisible Fence collar off and hides it; he went to Kroger’s and paid for a Hershey bar with his VISA card; he puts food needing refrigeration in a cupboard and leaves things that should be in the freezer on the basement floor. The most recent trick is the most amazing yet. Somehow he managed to unplug a lamp, take its shade off, remove the bulb and hide it!

Yesterday was his ninth birthday, old in “dog years. ” I chuckled at the twist on the old saying You can’t teach an old dog new tricks. I’m here to tell you, an old dog can teach himself new tricks!

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Thanks to Elaine Eshbaugh, PhD, Associate Professor of Gerontology and Family Studies, University of North Iowa for permission to quote.
Header photo: Lisa Frank, 2013 Facebook.

2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Be gentle with yourself, you’re doing the best you can.

Notices for books by, for and about caregivers show up in my email every day. I follow blogs by women  who are caregivers, and by experts who advise them…advise us. The common thread is, be kind to yourself and remember, you’re doing the best you can at a very hard job.

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Monday, Leslie collected Peter at ten for Christmas shopping and lunch. She volunteered for the job. She, and Carolynn too, always lift his spirits and make him laugh with their teasing. I’m sure he enjoyed the day, even though he didn’t remember where they’d been.

After they’d gone, I spent a long hour on the phone straightening out a niggling problem, the sort of thing I despise doing. After that, I thought, I should go to the grocery. But, no, dammit, I would get coffee at Our Daily Bread, a favorite haunt. I’m so glad I did. While I dawdled over coffee and cranberry/orange scone, I read two excellent story drafts by writer friends. Un-in-ter-rupt-ed. I felt a bit guilty that I enjoyed being there without Peter, but I confess, I savored it.

As I was about to leave, a young woman waved from across the room. Stephanie, a gardener friend, worked her way to my table and gave me a hug. “So nice to see you out like this,” she said. “I know how hard things must be, but obviously, you have ‘time off’ today.” She’d just been to Florida visiting her father who has Alzheimer’s too. “I understand what you’re going through,” she added.

Stephanie, with her million-dollar smile and twinkling eyes, helped make my day.

After that, I did get a few things at Kroger’s. While in the card aisle, looking for an anniversary card for my husband, a wheelchair-bound, sweet elderly lady asked me to help her find a Christmas card for a dear friend. I picked out several, but cost was an issue. She really liked an eight dollar one, but wanted something in the five dollar range. I found one with a message she loved. She thanked me over and over.

I hope I helped make her day.

Leslie stayed for a cup of tea after she brought Peter home even though I knew she had lots to do at her house.

She made my day all over again.

This morning, both daughters texted, Today is the shortest day of the year. Won’t be long until time to cut the grass, as my dad always said on the Winter Solstice.

Their reminders made me chuckle and made this day.

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2016 National Society of Newspaper Columnists’ contest, second place, blog category.

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Call a spade a spade.

From Sally Hepworth’s touching, witty, insightful, heartbreaking novel, The things we keep, these two paragraphs jumped off page 21 and imprinted themselves on my brain and on my heart:

Dr. Brain once told me that an Alzheimer’s brain was like the snow on a mountain peak—slowly melting. There are days when the sun is bright and chunks drop off all over the place, and there are days when the sun stays tucked behind clouds and everything remains largely intact. Then there are days — spectacular days (his words) — when you stumble across a trail you thought was gone forever.

“I get the feeling that since the analogy involved the words “mountain peak” and “spectacular,” Dr. Brain thought this news wouldn’t be depressing to hear, when in fact, the opposite was true.  I think I’d have felt better about my prognosis [Anna is 38 and has early-onset Alzheimer’s] if he’d reworded a little. Something like, The brain is like a filthy, stinking pile of crap. When the sun comes out, it stinks worse than you can imagine, and when it’s cold or cloudy, you can barely smell it at all. Then there are the days that, if the wind is coming from a certain way, you might catch the cold scent of a spruce for a few hours and forget the crap is even there. With that analogy, at least we’d have been calling a spade a spade. Because the truth is, if you have dementia, your brain is crap. And even if you can’t smell it right this minute, it still stinks.”

Graeme Simsion, The New York Times bestselling author of The Rosie Project, praised The Things We Keep, with these words: “A compelling read that touches on important themes, not least the different forms that love may take.”

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The things we keep is a book to read and read again. Both funny and sad, it’s a page-turner I raced through, but a book that I didn’t want to end. I don’t know if Hepworth has first-hand knowledge of Alzheimer’s or if she just has a brilliant imagination. Whatever, she has captured what I think I see happening in my husband as the disease increases its grip.  And, yes, it stinks.

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The things we keep, Sally Hepworth, pp. 21, St. Martin’s Press ©2015

 

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.

Who’s the granddad?

The doctor asked Peter if he had grandchildren. Peter shook his head slightly, but looked at me. “I don’t, do I?” he said. I raised my left eyebrow and nodded. “Sam and Miah?” he asked, obviously still puzzled.

Doctor T is our family’s doctor. He’s taken care of our grandson since he was born twenty-two years ago, and Leslie, Martin and Samantha even longer. “Who’s your grandchildren’s grandfather,” he asked next with a twinkle in his eyes.

Peter thought a long time. “It’s not me, is it?”

“You’re the only grandfather they’ve ever known,” I told him.

“But they’re your grandchildren,” he said, “they’re not really mine are they?” (Their paternal grandfather died before they were born, and they met my ex-husband just once when they were in their teens.)

“You’ve known them and loved them all their lives, haven’t you?” The doctor smiled.

“Yes, oh yes!” Peter, aka Dad-Dad, answered. When Sam was about two we tried to teach her to say “Granddad” but she could only manage “Dad-Dad.” That’s who he’s been for more than twenty-seven years now.

The questioning took place at our semi-annual prescription/follow-up check. I schedule them back-to-back to save time. When Dr. T asked Peter how he was doing, he said, “I’m fine, no problems. The dog walks me twice a day.” That’s one of his standard conversational phrases.

“How do you think he’s doing?” the doctor asked me.

I sighed, I’m sure. “He’s more forgetful…and he’s having nightmares, kicking a lot. He kicked himself out of bed two weeks ago…” I could tell my husband didn’t believe me even though I’d told him it had happened. “And he carries on coherent conversations in his sleep sometimes…”

“Pffft, that’s not me talking,” he said, “I’m not a talker!”

“Not when you’re awake, but you are when you’re asleep.”

Doctor T laughed at us. “Actually the kicking isn’t really caused by nightmares,” he said, telling us the unpronounceable name for the condition. “I can ‘up’ your Aricept prescription slightly and that should take care of it. We don’t want you hurting yourself or your wife with ‘soccer ball’ kicks!” Peter laughed at that.

During my separate follow-up session, the doctor asked if I was doing OK. I waggled my hand and gave my standard, can’t complain too much answer. “There are caregivers who have much worse to contend with,” I said.

“I wish I could prescribe a pill that would help your situation,” he said. And I knew he understood.

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This happy fellow on an Amsterdam windowsill made me laugh. (2007)

 

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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Where the laughs come from.

“Take off everything but your underwear,” the nurse said, handing Peter a gown. We were at the dermatologist’s office and she’d just finished asking him a list of questions. The only one he could answer was his birthdate. “Oh, I get it, you brought your wife so she could answer the questions for you, didn’t you?” she laughed. “Doctor J will be in shortly,” she said as she left the room.

Peter looked at me. “What am I supposed to do?”
“Take everything off except your underwear,” I told him.
He took his shirt off. “Is this enough?”
“No, everything but your underwear.”
As he stripped off his trousers he said, “Good thing I wore underwear today.”
I burst out laughing. I never know where the laughs will come from, only that they’ll come.

Next he took his shoes and socks off. As he bent down to put them under the chair where he’d draped his clothes he caught a glimpse of himself in the mirror on the door. “What the heck?” he said, grabbing his shirt to hide behind. “Oh, I thought that was a window. I was going to cover myself up,” he sputtered, laughing at himself.
When I stood up to tie his gown in back, he said, “I guess that’s why you’re here, to tie this thing. What do people do if they’re by themselves?”
“They either bring me along or let it all hang out,” I told him.

Doctor J came in and examined Peter carefully. He has had several suspicious spots removed in the past several years, as well as a large squamous cell carcinoma. Peter always asks, “What causes them?”
“Sun damage mostly.”
“Pfft, I’m never in the sun,” my husband will scoff, blowing off the expert opinion.
After the doctor zapped a couple places, he pronounced Peter good to go for another six months.
“Six months? I have to come back in six months?” He couldn’t believe it. “Why?”
“Because you have precancerous spots,” the doctor explained. “We need to keep a check on them.”
“What causes them?”

After he dressed he looked down at his shoes and asked where his socks were. I looked at him and hoped for the light bulb moment. “They’re in you’re shoes,” I said finally.
“Wasn’t that clever of me to put them there?” He watched me to see if I’d laugh. I did.

Header photo: Peter walking, not in the sun.

 

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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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©