May 31, 2018 · 7:30 am

A brief visit to one of Dad’s favorite cities

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On Tuesday, I traveled to New York City for a whirlwind day to attend the IPPY Awards ceremony and accept the gold medal I won for The Reluctant Caregiver.

I didn’t have time to visit Dad’s former residences in the Big Apple, but walking along the many famous streets, viewing the mix of historic and modern architecture, and absorbing the global mix of sights, sounds and flavors, I can see why New York City held a special place in my father’s heart.

Of  course the city has changed dramatically in the many decades since my Dad made his way to America and first called NYC his home, but there is a unique energy flowing through the streets that can’t be replicated elsewhere. That energy is very loud and boisterous and can be overwhelming for an introvert like myself but it certainly is full of life.

I thought of Dad a lot during my brief visit to New York, and know both of my parents would be proud of my writing accomplishments. (Though like I said before, they might not be fond of all of the material about them!)

I’m glad I made the trip and hopefully I’ll be able to return for a longer stay.

 

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May 21, 2018 · 8:00 am

Mom, the funny lady

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Mom with “Polly” the talking bird toy.

Today is the three-year anniversary of my mother’s death. While the immediate suffocating phase of grief has mainly dissipated, it’s still a day that I reflect upon my mother’s passing from this world, and the memories that remain.

If Mom had her way, she’d want me to remember her as a funny lady.

Mom loved to laugh and make other people laugh. As one can tell by reading my book, I also try to have a sense of humor, though Mom and I couldn’t be more opposite in our forms of humor. Mom loved to tell corny jokes and I’m far more sarcastic with a dry wit.

I was going through some paperwork that I had set aside at the time of her death, and discovered a manila envelope labeled, “Jokes.” Inside were a lot of jokes I remember from my childhood, such as the infamous “Rose Bowl” ticket.

rose bowl tix

I also found one of Mom’s final jokes, the “web” joke. Here’s how Mom wrote down that one:

I’m not a “hi-tech” person. I do have a cell phone, which is handy to use. But I have never been on the “web.” I take that back. I was on  the “web” one time. I stepped on a spider web. Very sticky and I was unhappy about that. After losing 4 legs, the spider was very unhappy. I never returned to the web and neither did the spider.

Mom wrote a note underneath the joke: “I wrote this 3 years ago and is printable (?) right venue!!”

I think this blog is just the right venue.

 

 

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May 16, 2018 · 9:16 pm

Win a FREE trip to the National Caregiving Conference in Chicago

Please share this with any current family caregivers in your life. It is so inspiring to be in a room with fellow caregivers, sharing the ups and downs of the caregiving experience.

The Imperfect Caregiver is honored to be among those who will be presenting at the Third Annual Caregiving Conference in Chicago, November 9th and 10th. For a sneak preview of the presenters Caregiving.com is having a virtual summit May 14 – May 24. Virtual Caregiving Summit Our virtual summit, featuring conversations with our National Caregiving […]

via Win a FREE trip to the National Caregiving Conference in Chicago — The Imperfect Caregiver

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May 8, 2018 · 3:53 pm

Mom’s love of horses

mom horse

Mom loved many things, but she had a special fondness for horses. She had been around them as a child, growing up on a farm. Surprisingly, she never learned to ride.

Mom also loved horse racing. As I’ve mentioned before, it’s how my parents met, with Mom asking Dad at the diner for the sports section so she could see the horse racing results.

I know there is a lot of controversy surrounding the world of horse racing, and those concerns should be addressed. But for me, there is a sentimental factor involved. My parents brought me to horse racing outings throughout my childhood, and I remember those days with fondness.

While going through a pile of paperwork I’d set aside after Mom died, I came across a box marked, “Tax Returns.” ZZZZ, I thought. Still, I flipped through the neatly organized tax return envelopes, some going back to the early 1990s. And I was rewarded when I got to the end, when I came across a pile of personal belongings.

One of the pieces buried in the tax box was a Hollywood Park racing program. As I flipped through it, I realized it was a memento from one of Mom’s favorite memories.

Hollwyood Park program cvr

Many of my parents’ early dates revolved around going to the races. They both shared a love of horse racing, so it was a natural destination. There was one outing my mother remembered fondly, maybe my father, not so much. Mom recounted a day where the two of them had basically broke even with their bets until the last two races of the day. Dad struck first, winning $13.20 in the eighth race. But Mom had the last laugh, winning $53 in the ninth race. She never forgot the name of the winning horse, and neither have I: Hail to Garr. And now there it was in print for me to see for the first time.

HP Program interior

Mom made notes in the program to highlight their winnings. She said Dad was quiet on the way back, and seemed to be fuming that Mom trumped him in winnings, haha.

I’m so glad that I finally went through that “boring” box of tax returns. I found it on Saturday, just after the Kentucky Derby race. That’s now a bittersweet event for me, because it was one of the last happy moments Mom and I had together. She was too weak to get out of bed, but we watched the race via livestream on my computer.

The year she died, there was a Triple Crown winner, but she didn’t live long enough to see history being made.

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May 1, 2018 · 9:05 pm

Sharing the voices of Alzheimer’s caregivers

being patient

I’m always open to sharing my caregiving story with individuals and organizations who are championing causes near and dear to my heart. Alzheimer’s is, of course, one of those causes. My father’s brutal experience with the disease prompted me to create The Memories Project blog.

Being Patient is an independent news site dedicated to sharing the latest and most accurate developments in Alzheimer’s and brain health research. It was founded by Deborah Kan, who was an executive producer at the Wall Street Journal before creating the site after her mother’s Alzheimer’s disease diagnosis. I love the idea of serious journalists covering the important developments going on in the world of Alzheimer’s research, so I was happy to help the cause when asked.

I contributed an article about the challenges of rural caregiving for the site’s Voices section, which puts the spotlight on family caregivers. I saw many familiar faces in that section, as the online world of Alzheimer’s caregivers is a tight-knit group. It was good to see my fellow caregivers sharing their unique perspectives. It’s so important for people who are past and present caregivers to tell their story. There are so many areas where caregivers need greater support, and there’s nothing like a heartfelt story to prompt people to take action.

What are your favorite websites for news about Alzheimer’s and caregiver support?

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April 24, 2018 · 8:00 am

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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April 17, 2018 · 8:46 am

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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April 9, 2018 · 1:16 pm

Dementia communication tips

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Pixabay

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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April 2, 2018 · 3:00 pm

Finding the rainbow as a caregiver

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Pixabay

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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March 26, 2018 · 8:00 am

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.

mom eyeglasses

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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