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.
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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.
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.
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?
Now solidly middle-age and reflecting more upon my own mortality after the deaths of my parents, aging well is a top concern of mine.
Aging well means something different to everyone, but living independently with as little assistance as possible is a priority for me. I read an article about “elder orphans,” a term used to describe older people who live alone without a support network. As our society has moved away from the nuclear family model, and more people are deciding not to have children, the number of elder orphans will likely grow dramatically over the next several decades. The author of the article believes that baby boomers will also experience an uptick of elder orphans.
Not only are modern families smaller, but members are more likely to be spread out geographically, which can complicate caregiving situations. Women, traditionally the caregivers in the family unit, have demanding careers that limit their ability to be caregivers. (Though we know there are plenty of family caregivers who work full-time and care for a loved one, which can lead to burnout.)
Some people, like my mother, become an unwilling elder orphan after their spouse dies. My mother was able to take care of herself until the last few months of her life, but she did not enjoy living alone. She missed the daily companionship and experienced loneliness living in a rural community without friends or family nearby. Yet even when she was still in good health, I couldn’t convince her to visit the community senior center.
So how can we better take care of our elder orphans? I’ve written before about aging in place and how some communities are being proactive in addressing the needs of their aging population. Infrastructure needs like housing and transportation is integral, but so are communities with residents who have an awareness and dedication to helping their elders age safely. Programs like Meals on Wheels isn’t just about receiving food, but serves as the only regular safety check that many older people living alone receive. The frigid winter weather has encouraged people to check in on their elder neighbors, and that’s something we should be doing all year long.
While we can’t predict how our own health issues will impact our hopes of aging well, we can plant the seeds now to create a safe and welcoming environment for elder orphans.
I just got back from a visit to what was my parents’ condo in New Mexico. It will be called that for the foreseeable future because calling it my “second home” or “mountain getaway” makes me sound wealthy and pretentious, which I’m definitely not.
I made some progress, finally donating my parents clothes and a good chunk of my father’s books. I finally cleaned out the pots and pans cupboard and brought a few more mementos home with me. The numerous repairs the unit needs will have to wait a little longer. There were plenty of deer around, and it snowed just a bit. All in all, it was a refreshing getaway.
I had just gotten out of the shower when I glanced over at the decorative fan that has been hanging above the towel rack since Mom placed it there 12-plus years ago. I was thinking about my mother’s final weeks of life, and how much time we spent in that tiny bathroom, where I helped her with toileting and sponge bathed her until she became bedridden. There was a delicate balance of trying to preserve her dignity and privacy but increasingly recognizing that my mother needed assistance. There was a lot of forced optimism on my part, trying to make the daily tasks as distress-free as possible.
How often I must have glanced at that fan during those difficult times, but never really seeing it. It was only this past week that I realized the fan is hanging upside down.
It’s so obviously upside down, I can’t believe I never noticed!
I couldn’t help but think wryly, “Leave it to Mom to turn paradise on its head.” But when I turned it around to depict the tropical scene as it was intended, it didn’t look right. What momentarily struck me as “paradise lost” was just paradise from a different perspective.
Lesson learned: Never question Mom!
As National Caregiver Appreciation Month winds down, I came across this touching video from a women with Alzheimer’s. Pam Montana is in the early stages of Alzheimer’s, and knows what lies ahead. But she is not as concerned about herself as she is about her husband. Watch below as she explains her wish to family and friends.
Pam’s heartfelt message is a touching reminder for all of us to not forget about the caregivers of those with Alzheimer’s and dementia. As Pam says, Alzheimer’s caregivers often feel isolation and suffer from depression. Don’t abandon them. Offer a sympathetic ear, check in on them to see how they’re doing, or offer to stay with their loved one so they can escape the house for a bit.
As Pam poignantly states, there will come a time when she will likely forget who her husband is. She doesn’t want their family and friends to do the same.
How do you stay in touch with caregivers in your life?