The cruel progression of Alzheimer’s

While the progression of Alzheimer’s is different for each person, there is a progression, and it’s a heartbreaking one.

On Sunday, 60 Minutes aired its latest installment following the life of Carol Daly and her journey with Alzheimer’s. This year marks 10 years since the show first made contact with Carol and her husband Mike, a former NYPD officer.

It’s gut-wrenching to watch the mental and physical decline of Carol over the years, and how much Mike suffers as a caregiver. But Carol’s story is  important to tell, to help raise awareness of this devastating disease to a mass audience. I am grateful for Mike and Carol for allowing cameras to document the cruelest aspects of Alzheimer’s.

Watch the full 60 Minutes segment

The segment touches upon important topics, such as the high cost of Alzheimer’s caregiving and the lack of financial support, along with the physical and emotional toll dementia caregivers takes on loved ones. You know Alzheimer’s is a beast when the former cop tells the CBS correspondent that caregiving is the toughest job he’s ever had.

The sad truth of course is that there are many Mikes and Carols out there, fighting their own battles with dementia. And that’s why we must do better, as a government and as a society, to help families caring for a loved one with dementia.

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The Reluctant Caregiver wins a gold medal

 

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It may  not be a Pulitzer, but The Reluctant Caregiver earned a gold medal at the 2018 Independent Publisher Awards.

I know my parents would be proud of me, though maybe not so thrilled about what I wrote about them.

The award was a pleasant surprise. I entered a handful of book contests after the publication of The Reluctant Caregiver last year. The Independent Publisher Awards, better knows as the IPPY’s, is well-known, having been around 22 years. The award ceremony will take place on May 29 in New York City and I’m going to fly up for the day to attend the ceremony and hopefully track down a few of my dad’s old haunts.

There are some people who feel these contests are a waste of time and money. I understand the concerns and some are valid, but I choose contests to enter where I would appreciate the prize, even if it isn’t money. For self-published authors like myself, every bit of promotion is worth, ahem, gold.

If you want to learn more about The Reluctant Caregiver, you can visit my website, joyjohnston.com.

 

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Dementia communication tips

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I love the approach to this list, written by Dr. Elaine Eshbaugh who runs the blog, “Welcome to Dementialand.” It’s not necessarily for those of us who have been through the challenges of being a caregiver for someone with dementia. These simple, smart tips are for “everyone else.” Relatives, friends, nursing home staff and just about everyone could benefit from learning how to better communicate with those with dementia.

Read the list: Tips on Communicating in Dementialand

One of my favorite tips is: “Minimize competing stimuli.” Those with Alzheimer’s and other forms of dementia can be easily overwhelmed. It made me think back to my father visiting me at the casino resort, and how I instantly realized what a poor choice that was, as I explain in my book, The Reluctant Caregiver.

“Sensory-friendly” is a concept that I see being implemented for those with autism. I think similar steps can be taken to make things “dementia-friendly.”

via Tips on Communicating in Dementialand

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Finding the rainbow as a caregiver

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It can be hard for some caregivers to find moments of joy in their daily lives. Optimism can be in short supply when one is coping with loved ones in declining health. Mental, emotional and physical exhaustion leave little time for self-reflection or appreciation of the world around us. For those like myself who naturally lean on the pessimistic side, it’s easy to allow the clouds of despair to smother us like a blanket.

What I discovered is that even after one’s caregiving days are behind them, those clouds can linger. Having experienced such moments of despair, we live in fear of those days returning in one form or another. But by doing that, we may fail to recognize the beauty and the wonder that has always existed, even in our darkest days.

I was reminded of this while listening to “Golden Hour,” the new album by the critically-acclaimed country music artist Kacey Musgraves. The closing song of the album is titled, “Rainbow,” and its heartfelt message is for anyone who has gone through troubled times. I think many caregivers could relate. The chorus goes:

Well the sky is finally open, the rain and wind stopped blowin’
But you’re stuck out in the same old storm again
You hold tight to your umbrella, darlin’ I’m just tryin’ to tell ya
That there’s always been a rainbow hangin’ over your head

I know springtime has yet to reach some parts of the country, but here in Atlanta, everything is blooming and the birds are singing. My mother died during the spring so the season is now tinged with sadness. But I’m going to work on loosening my grip on the umbrella, so I don’t miss out on what the present has to offer.

If you’ve been a caregiver, have you dealt with the “waiting for the other shoe to drop” mentality? How did you learn to live in the present more?

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The eyeglass whisperer

One of the toughest moments during the frenetic cleanup of my parents’ condo just after my mother’s death was what to do with her eyeglass collection.

My mother’s many eyeglasses were laid out neatly atop the dresser, where she always kept them. Each pair of glasses had its purpose.

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A routine trip to the grocery store required three pairs: sunglasses, a pair for walking and a pair for reading coupons and expiration dates. Whenever I was with her, I was expected to know which pair she needed at any given time. I became her eyeglass whisperer, though to be honest, I never did figure out what all of the pairs were for.

She did try bifocals at one point, but hated them. “I feel like a chicken trying to pick up corn,” Mom complained.

So as I moved around the condo in a whirlwind, using the activity to temporarily blunt the grief, my mom’s eyeglass collection brought me to a halt. She had not worn any of the glasses for weeks, since she had become bedridden. While I was purging the condo of many items, I wasn’t ready to part with her glasses. Instead, I put them each in a case and then into a box, which I mailed back home to Atlanta.

I had some hazy notion of turning them into a sort of tribute piece. The glasses sat in the box in a closet for almost three years, when I finally decided it was time to do something with them. I found an appropriate shadowbox and created a simple display of the glasses my mother used most.

The display is now on my bedroom wall, and I’m pleased with the results.

Have you come up with any unusual memorials for loved ones? I would love to hear about them.

 

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Welcome back, Joy Johnston, author of “The Reluctant Caregiver”

It was an honor to be featured on the AlzAuthors blog this past week. I encourage you to check out the other authors writing about Alzheimer’s and other dementias that are a part of this group. Sharing our experiences is so important!

AlzAuthors

Pageflex Persona [document: PRS0000038_00069]By Joy Johnston

Not everyone is born a natural caregiver.

Unlike some caregivers who can draw upon their experience as a parent or time spent taking care of siblings when they were younger, I had no such reservoir of caregiving knowledge when my parents fell ill. An only child who lived 1,300 miles away from my parents, my father began showing signs of dementia while I was in my mid-thirties. Assuming the role of long-distance caregiver, I helped my mother by paying bills, sending supplies, and researching care options.

It was not until six months after my father’s death, when my mother suddenly fell ill and was diagnosed with colon cancer, that I became a primary caregiver. I was woefully unprepared and frankly, reluctant to step into the role. My mother required emergency surgery and faced a lengthy recovery. I ended up quitting my job and temporarily moving to New…

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A new caregiving podcast

I love to promote those helping to spread awareness of the triumphs and challenges of family caregiving.

A new podcast, engAGING Conversations, launched this month. Sheryl Smith, RN, BSN, M.Ed Certified Health Coach, has created this podcast to cover a wide variety of caregiving topics. I recently had a conversation with Sheryl, in which we discuss my book, The Reluctant Caregiver. The episode is scheduled to air March 20.

On Google Play (requires login)

On iTunes (requires free iTunes software)

engaging conversations

Smith has the experience of being a professional caregiver as a nurse and caring for her parents as they aged. Her insight is so valuable to family caregivers. Smith also hopes to carry forward the conversation about end-of-life planning, which is a topic near and dear to my heart.

The first three episodes are posted on Sheryl’s website, and you can subscribe to the podcast via your favorite provider.

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