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!

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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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Respite in the woods

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Sunset in Ellijay, Georgia.

I just returned from a 5-day trip to the north Georgia mountains. It was a nice getaway, with a mix of rainy days to crystal clear nights with the sky full of stars. In the past, I haven’t been able to enjoy these trips as much because I  was worried about my parents as their health declined.

Back then, cell phone service was very iffy in the woods, and being able to reach them required some effort. Calls would drop often and my mother always thought I was hanging up on her, haha. (While there were many times I wanted to, I only hung up on her a couple of times in my life.)

I am always in awe of the majesty of the mountains, from the beauty of the sunsets, to the way the rains strikes the roof of the cabin to the blanket of stars overhead on a clear night. But life cycles are also on display in the mountains. The hawks swooping and soaring effortlessly overhead were seeking their next kill. I took a short hike and came across so many fallen trees. Taken out by severe weather or just old age, they will decay until they return to earth or are removed by developers looking to build a new cabin.

Sometimes it helps to watch nature do its thing, and know that many of the same rules apply to us. I think especially for those grieving the loss of a loved one, there is comfort in observing the cycle of life and how there is always something new to take the place of what is lost. A dogwood tree was just beginning to bloom near the cabin, a sign of the rapidly approaching spring; a tree stump became home to abundant fungi.

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It’s these moments that I get to fully enjoy now that makes me realize how difficult it is for caregivers to truly unplug. Caregivers are always on edge, awaiting the next calamity. Even if you know your loved one is receiving good care while you are away, you never know when a medical crisis might arise. After awhile, it becomes your new normal.

I hope that my fellow caregivers will get a chance to enjoy a real respite soon.

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A gun on the farm

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With gun rights and gun control being the hot topics of discussion after yet another mass shooting, it reminded me of a story from my mother’s childhood that fortunately did not end in tragedy.

My mother was raised on a farm, and it was not unusual for farm families to own a gun. Typically a rifle or shotgun was kept, sometimes to put down sick animals, or to kill rabid animals or scare off a bobcat. Hunting also was a popular pastime and source of food for the family. While human prowlers weren’t as much of a threat back then, in a remote farmland area, you best be prepared to defend your family. Having a gun was a practical decision in my mother’s family.

One night when my mother was a young girl, she must have gotten up in the middle of the night, or perhaps was sleepwalking, and ended up in a rocking chair in the living room. Family members heard a noise and the gun was retrieved as a precaution. When my mother was discovered, everyone heaved a sigh of relief and had a good chuckle the next morning.

My mother told me that my grandmother was not as amused, as having weapons in the house made her nervous. She worried about what could’ve happened to “little Janie” if my mother had been mistaken for an intruder. But as the matriarch of a large farming family, she understood the purpose for such a weapon and reluctantly accepted its presence in the home.

I’m just as grateful as my grandmother that the story had a happy ending.

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How can we prevent deadly encounters between those with dementia and law enforcement?

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As the nation grapples with another school shooting by another person with mental illness, I can’t help but think about those with dementia who exhibit violent behavior.

It’s not something a lot of people want to think about or discuss. But the truth is that those with Alzheimer’s and other dementias can become violent. My own father became physically violent towards my mother as he sank into the middle stages of Alzheimer’s.

I can only imagine what would have transpired if my mother had called the police the night that my father struck her in the jaw. His flashes of anger and paranoia were at the peak at this time. I can see him lashing out at authority. I can see him ending up like Stanley Downen.

Downen was 77 and was in the latter stages of Alzheimer’s, Reuters reported. Police were called to the nursing home he resided at because of a wandering resident. Downen had slipped outside of the facility’s gate, and staff members were trying to encourage him back in.

Downen, a former iron worker who had served in the Navy, was angry and cursing.  He said he wanted to go home. He grabbed rocks from the ground, and threatened to throw them. As the officers approached, one was concerned enough about the threat that he decided to use his Taser on Downen. The older man went down quickly,  his head striking the pavement. He was taken to the hospital and never left. He died three weeks later.

There have been warnings about using Tasers and similar products on the elder population, as they are associated with a higher risk of injury and death, but the officer involved in this case claimed he never heard about the warnings. A lawsuit filed by family against the city and state was settled in the family’s favor.

It’s situations like these that are so difficult to manage. Mental illness by its vary nature is unpredictable and can unleash violent behavior. How do we show compassion for those with mental illness while protecting innocent lives? At what point is force necessary? And perhaps most importantly, how do we prevent these situations from occurring?

In the case of Mr. Downen, better security protocols and perhaps more staffing could have prevented his escape from the nursing home. Better training and established protocols could have determined a different course of action once the police were involved.

One thing seems clear to me: whether you are 18 or 80, we have to figure out a better was to manage mental illness in this country. We either bury our heads in the sand in denial or we overmedicate people into zombies. We need to open an honest dialogue on the subject and then take concrete actions based upon those discussions.

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