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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Say a lot in few words.

When our friends Jerry and Shelia visited, Shelia took me aside to  ask, “Does Pete worry about anything?”

“No,” I said.

She smiled. “He doesn’t have to, you take care of everything. He has no worries.”

I nodded and she gave me a hug. There was nothing more to say, and for effervescent, talkative Shelia, that in itself was saying a lot.

 

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

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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.

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“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.

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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.

 

Left? Right. Left. Wrong!

We were having lunch at Lefty’s. As always, Peter looked at the menu, then at me and asked, “What do I usually have?”

imagesAs always, I said, “You can have something different.” It does absolutely no good to encourage him to try other things on Lefty’s or any other restaurant’s menu. I looked up at the large blackboard where daily specials are posted. “Oh, look, pork BBQ burger, yum! I’ll bet that’s good.”

Peter looked at the board. “No, I’ll have what I usually have…” His eyes asked the question again.

“A Lefty’s burger with fries then?” I’d already settled on a turkey reuben, my favorite, or I would have had the special myself. So much for branching out from “the usual.”

Later, while waiting for the check, Peter looked at the blackboard again. “Pork BBQ burger,” he said. “That sounds good. I should have ordered that.”

I sputtered. “I tried to get you to have it, but you wouldn’t.”

“Pfff, never saw the sign.”

I raised my left eyebrow at him. “It’s just like when we traveled in England,” I said. “You drove and I navigated. Every time we came to an intersection or a roundabout you’d ask which way. If I said ‘left,’ you’d turn ‘right.’ I’d insist, ‘left,’ and you’d say ‘wrong.'” Peter was confused. “In other words, no matter what direction I said, you thought I was wrong, so you’d turn the opposite way. I never did learn that I should have said ‘right’ when I mean ‘left.’ We’d have gotten where we were going a lot quicker, and with less fuss.”

A smile tempted his lips. He didn’t remember specifically the time lost on tiny English lanes, but down deep, he knew what I meant.

Continuing my argument, I said, “So my point is, an hour ago, if I’d looked at the list of specials and said, ‘Ew-w, yuck, pork BBQ burger’ sounds awful,’ you would have ordered it.

“No-o, I didn’t see it,” he insisted.

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

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.

Keep on the sunny side of life.

For years and years, long before dementia took control of our lives, if I asked Peter to take the garbage images-3out Thursday evening he nearly always refused. His argument was, no one else had theirs out. Only one other house on our block has front curb pick-up, so it isn’t a contest. Finally, I started doing it . It certainly isn’t difficult, and my nagging was nagging at me.

images-2Before daylight one Friday I noticed the blue bin was in the carport. I was positive I’d taken it out. Did the truck go by already? Did our neighbor bring it back? I went out and peeked inside  — full. Blast!

Peter must’ve rolled it back the evening before thinking it was empty. He didn’t notice that “empty” was very heavy — the week before we’d had a lot of snow so there’d been no garbage collection at all.

Whether garbage is in or out isn’t a big problem, but it’s a worrisome symptom.

A few days later I was in the pantry when I heard Peter and Nobby come back from their walk. “Knock, knock?” he said, peeking around the door. “Oh! I didn’t think you were here.”

I’d been pouring kibble into Nobby’s metal bowl. “Didn’t you hear the racket?” I asked.

Peter shook his head and pointed toward the carport. “Your car isn’t there.”

This was a Sunday. My car had been gone since Thursday evening. Leslie traded cars IMG_0461with me so she and Martin could take mine to a family ski weekend in West Virginia. “You haven’t noticed my car was gone? We ran errands today in Leslie’s car, remember?”

Of course he didn’t remember. But he’d laughed at me trying to adjust her seat and mirrors while complaining I felt like I was sitting on the road in her much lower car. Even after all this time I can’t seem to remember that he really can’t remember.

Peter no longer fixes meals. He used to make Indian dinners, bubble and squeak, and he always cooked fish. He still makes the best fried eggs. He does them, with supervision. I get out the skillet, eggs, oil, spatula, and put the frozen chips in the oven. I tell him when to start the eggs.

I watched him a few nights ago so “I could see how he did it,” I said. When they were just right, he slid the skillet off the burner, then reached through the grate. “NO-O,” I yelled when I realized what he was doing. He singed his fingers before my yell penetrated. He said he  thought he had to twist the “thing” (burner cap) to put out the flame. He wasn’t burned badly, thankfully.

Days like these, “Keep your sunny side up” are words to live by.

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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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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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