Caregiver Judith Clarke Looks for Laughs Every Day in “Dementia Isn’t Funny”

If nothing else in all our years, I've learned from my husband how to laugh at myself, and life, and always with him. - Judith Clarke, Blogger DementiaIsn'tFunny.com.png

By Judith Clarke, Blogger at Dementia Isn’t Funny

Laughter costs nothing and work instantly.

Take off everything but your underwear,” the nurse said. “Doctor will be in shortly.”

She handed my husband a gown and left. 

Peter looked at me. “What am I supposed to do?”

“Take everything off except your underwear.” 

He took his shirt off. “Is this enough?”

“No, everything but your underwear.”

As he stripped off his trousers he said, “Good thing I wore underwear today.”

I burst out laughing. 

When you live with someone whose medical diagnosis includes the words “mild dementia,” you learn quickly that laughter is absolutely essential for both patient and caregiver. Alzheimer’s disease may be lurking. Laughter can’t slow the disease nor cure it, but it costs nothing and works instantly.

Decades ago I learned to laugh at my husband’s lightening quick rejoinders. Ever the life of any party, he joked about everything. Even now he laughs at himself, though much of the time he forgets why before the laughs have faded.

He was diagnosed with “mild dementia” in 2003. For the next eight years I was his caregiver, a relatively easy job, though worrisome. About six years later the doctor said, “I can no longer rule out Alzheimer’s.”

By then there was no choice but to hire help. I’d come up with the idea of therapy-dog visits for Peter and his dog Nobby. I got lucky with Bill who drove them to nursing homes in our area every Wednesday for seven years.

Peter had just gotten up when Bill arrived. Not one to be rushed, Peter sipped his coffee, nibbled his toast, and wiped (and wiped and wiped) the kitchen countertop. He will not be dissuaded from that task once he starts. Bill and I smiled.

“‘Mrs. Clarke,’” I said, “are you about finished?”

Bill chuckled. “He’s a good little ‘housewife,’ isn’t he?” 

Peter muttered, “Well, someone has to do it, don’t they?” 

In 2017, he seemed to get worse by the day. He’d gotten lost on a sweltering day and was found, hours later, five miles away. With that, his easy-going temperament changed, although still quick witted, a dark side had erupted like a zit on a teenager’s chin.

Mark, an additional companion was a big help too, but by year’s end, my resolve was shredded. A temporary fix, a locater watch, gave me confidence that Peter was safe walking Nobby. But it begged problems because his engineer’s mind soon figured out how to get the thing off.

Then he fell face first into a muddy ditch while walking. A policeman notified me and took me to the ambulance a block away.

Peter was already on the gurney when I climbed in behind him. He turned his battered, muddy face toward me and said, “Uh oh, now I’m in trouble.” He kept the EMTs entertained all the way to the hospital.

With the advice of our daughters I weighed the options. I’d known for months I had to do something, but I’d played ostrich. The choices were assisted living, memory care, private-care home, or 24-hour care at home. He didn’t meet the requirements for assisted living and round-the-clock care at home was a non-starter because he would hate it, as would I.

The only real choice was memory care. The day he was admitted was one of the worst days of our lives, mine because I knew what it meant, and Peter’s because he didn’t.

Anyone who has opened a door to memory care should be prepared for the stress, guilt, and pain that lies on the other side. Peter can’t articulate his feelings, but I can speak to feeling paralyzed while watching confusion engulf him.

The first time his new neurologist visited, she introduced herself, and asked, “Would you like me to call you Peter, Mr. Clarke or Dr. Clarke?”

He grinned. “Dr. Clarke sounds good.” We laughed with her.

I know it’s easier for me than for Peter. I still live in our home while he’s in a strange new environment that will never feel like home no matter how I try to make it seem so.

When I visit, I walk in and immediately begin to tidy his room. One day, in addition to the usual mess, the comforter was turned so that the ends were dragging the floor off the sides of the bed.

“Did an aide make your bed or did you?”

“Is it right or wrong?” he asked.

“It’s the wrong way ’round.” 

“She made it,” he said.

I laughed like I hadn’t laughed in weeks.

If nothing else in all our years, I’ve learned from my husband how to laugh at myself, and life, and always with him.

About the Author

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The author and her husband, Peter

The writer’s block that stopped Judith Clarke cold was hidden behind dementia’s sweeping skirts. During the years she’d tried to write a novel about innocence, she admitted that her husband’s “mild dementia” diagnosis was actually Alzheimer’s disease. Real life. Not fiction.

Writing a novel, or writing anything at all, was no longer a priority. Peter was, and remains, her first priority.

Daughters Carolynn and Leslie urged their mother to start a blog, Dementia Isn’t Funny. Putting thoughts to paper helps anyone facing a challenge and Judith soon realized that her therapy was helping others —

“…You are my hero and you give me hope.” Ellen

“Such honest, insightful disclosures! You avoid the trite phrases that elicit pity and get to the heart of this very complex life we lead. It’s pure generosity and what’s more, you are gifted.” Mary Ann

“Thank you for some simple answers for a not-so-simple predicament.” Carol

“Thank you…so many [posts] were just what we’ve been going through. I appreciate your candor and humor! It’s a road no one wants to be on, but you are holding a light for some of us who are coming along behind.” Jabberwalky

“So love reading these…treasures and trials…. Such stories can only help us have empathy for those we meet day to day.” Carol

In 2016, Judith placed second in the National Society of Newspaper Columnists (NSNC) contest for blogs with under 100,000 unique visitors.  Her other blog, “Wherever you go, there you are”  has appeared on the Erma Bombeck Writers’ Workshop site.

Judith has written two books, Mother Tough Wrote the Book (2001) and That’s All She Wrote (2007). Both are out of print, but Mother Tough will send an autographed copy, or a boxful, upon request. Contact mothertough105@gmail.com

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For more vetted books and blogs about Alzheimer’s and dementia please visit AlzAuthors.com. Reprinted with permission of AlzAuthors.

Millenial Blogger Rachel Hiles Shares her Caregiving Journey in “Taking Care of Grandma”

By Rachel Hiles

When I became my grandma’s caregiver, I searched desperately for support.

No, not home-delivered meals or adult daycare.

Not home care agencies or government programs.

No, I was on a relentless pursuit for the others.

You see, when we are in the thick of caregiving, there are times when we feel oh so alone. Even if we have watched people taking care of their relatives while growing up, or hear about it on TV, we are never fully prepared for caregiving until it actually happens to us. And then we are islands.

When you realize for the first time your loved one might have dementia, it feels like the ocean is coming to swallow up your island.

This feeling of aloneness is a feeling I have grown quite accustomed to as an only child. As an only child caring for an only child, I realized just how small our tiny little island was and this gnawing only grew stronger.

The people I thought would come through for us never showed up. Some of these same people were the ones who were telling me I should give up and look at placing Grandma in a facility. I said, “No, she can stay at home.” In spite of it all, my primary motivation is to see this through to the very end, making sure she has a good life every step of the way.

I figured there had to be some others like us. Others not just caring for their loved ones at home, but proactively looking for ways to keep them there. Others that could find the humor in caregiving mishaps, instead of being so freaked out by them they never even try. Others that are willing to make sacrifices to help their loved one, who after all, sacrificed greatly for them. Others that are concerned with respecting their elders and values of family and community (yes, they still do exist).

Since I had my own social struggles, I didn’t know anyone personally my age, let alone someone my age who was also caring for a loved one, so I started searching.

In my search for the others, takingcareofgrandma.com was born. It was my desperate attempt to light the branches on the beach and send out smoke signals to other people like me who are caring for an aging relative. I thought that if I started blogging about my caregiving adventure, the others—granddaughters, nephews, nieces and neighbors, people searching for the same things I was searching for—would find me.

Be careful what you wish for, they say. Out of nowhere, the others started popping up left and right. In my inbox. On Twitter. At Grandma’s high school class reunion. At conferences.

Thanks to my smoke signals, the others are showing up all the time.

Ultimately, I hope that my blog is more than just an endearing story from an ephemeral point in one person’s life. I hope that my readers of TakingCareofGrandma.com find my tips and tricks, videos and silly stories helpful, and that they spark ideas of how they might be able to support a loved one they are caring for. When I told my grandma I wanted to start my blog, I convinced her by telling her we were doing the world a service—after all, it is up to us to show the world how it’s done. I never looked back.

Even though I started TakingCareofGrandma.com with the intention of finding, helping, and inspiring others, it is seriously one of the greatest gifts I ever gave to myself. Starting this blog has not only been a source of catharsis for me, it has also put opportunities in front of me and brought people into my life in a way I never thought was possible.

My advice out there to anyone who is currently caring for a loved one with Alzheimer’s or dementia: Never lose hope of finding the others. It is when you least expect it and in our darkest moments that they come into the light.

About the Author

img_3931Rachel Hiles is a 30-something aspiring local celebrity do-gooder in Kansas City. She is a proud graduate of the UMKC Bloch school, where she obtained her Masters of Public Administration with an emphasis in nonprofit management. She worked in the developmental disabilities field in a variety of roles for over 13 years. Most recently, she ventured down the path to self-employment as a graphic, web, and media designer so she could have flexibility in her role as primary caregiver to her grandma, Barbara.

Connect with Rachel Hiles

Twitter

Facebook

Instagram

YouTube

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For more vetted books and blogs about Alzheimer’s and dementia please visit AlzAuthors.com. Reprinted with permission of AlzAuthors.

 

 

Blogger Lickety Glitz Invites Us into Life with Vascular Dementia in “Stumped Town Dementia”

By Lickety Glitz

I started…

… to worry that Mom’s behavior wasn’t old age quirky-ness, but possibly a much more serious problem.

I started…

… a new career that required relocating away from family, friends, and the region I loved best.

I started…

… to consult with Dad on my visits home about how long we thought it might be before he needed me back permanently to support him in Mom’s care. Another year? Three? Five?

I stopped…

… breathing when the ER doctor announced on conference call that Dad had stage 4 pancreatic cancer. I could tell that those who were there in-person had stopped breathing too.

I started…

… sharing 24/7 care for Mom with my sister when Dad died three weeks later.

I started…

… blogging about our dementia adventures a year later as a way to keep far off friends and family engaged in Mom’s life. I’ve been writing for over a year now, and…

… I’ve started to realize it’s so much more.

It’s a lifeline for me. An umbilical cord to a not-so-distant universe of word-weaving creativity; now a tiny galaxy of curling and curving locution that tethers me to the world of my present.

It’s a permanent record of a journey I don’t want to forget. An autobiography of dementia certainties: misplaced items, misplaced poop, mismanaged emotions. A sweeping saga of dementia unknowns; tremendous courage, epic failures, colossal comedies.

It’s a connection to a massive universe of dementia caregivers who see their journey mirrored in ours. It’s a connection to a smaller cosmos of family and friends who can’t always be with their beloved Gloria but want to stay informed. It’s a connection to my sister, The Other Girl, a relationship sometimes fragile and strained, but united in a never-questioned bond of love for our mother.

And lastly, it’s a connection to myself; my devastating defeats, my soaring successes, my inherited joy of hilarity in the tragically absurd – a gift from Mom and Dad who shared the same comedic sensibilities. When I write a post, whether dire and dark or laugh-out-loud light, I have to relive my emotions, examine my responses, assess my behavior with unflinching honesty. If I shrink from that often-painful task, then I am doing everyone who follows our adventures a disservice in telling a dishonest tale.

A year ago, I sat down at my computer to inform family and friends of Mom’s dementia progression. A year later I rise in realization that I’m actually telling myself about myself.

About the Author

Stumped Town Dementia is a personal blog chronicling the dementia adventures of Girl and The Other Girl, sharing hilarious, heartbreaking, bittersweet and courageous moments of life with our Mom who has vascular dementia. We celebrate the insanity and relish the laughter of this long, strange journey. It helps us make it through the days when there are no smiles to be had.

Stumped Town Dementia has been featured on The Caregiver Space, Family Caregiver Alliance, Being Patient, and Alzheimer’s Society UK.

Lickety Glitz has been a former just about everything from non-profits arts administrator to cabaret performer to post-production professional to Crappiest Daughter of the Year award winner about 40+ years in a row. She recently broke that winning streak by stepping up to the plate, hand-in-hand with The Other Girl, to provide their dementia mom with the best end-of-life care possible.

Connect with Lickety Glitz

Website

Facebook 

Twitter

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Email: licketyglitz@stumpedtowndementia.com

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For more vetted books and blogs about Alzheimer’s and Dementia please visit AlzAuthors.com. Reprinted with permission of AlzAuthors.

With Recipes, Poetry, and Prose Author Miriam Green Shares her Alzheimer’s Story in “The Lost Kitchen”

Green, Mirian Meme

By Miriam Green

When my mom, Naomi, was first diagnosed with Alzheimer’s I felt relieved. The doctors had finally acknowledged what our family had surmised for almost a year—Mom was losing her memory. Ok, I thought, what now?

Little in our lives changed at first. Mom still rattled around in her kitchen, she was still an avid music lover, conversationalist, and sweet companion. She could maintain her household, and even stay by herself in the evenings when my dad, Jack, was busy. But the signs were everywhere.

There was the day she tried to unlock the front door to her apartment with the wrong key. It didn’t occur to her that she should try another one, or even ask for help. I was waiting patiently on the other side as she jammed that key into the door over and over, swearing in language I had never in my life heard her utter. Daddy rushed from the shower, thinking she’d hurt herself with all the screams. It took a while to calm her down.

What did change dramatically in my life was a commitment I made to visit my parents once a week. I traveled 2½ hours each way by public transportation to be with them. Mostly, I was there for Mom. Those were wonderful mornings. We would do all manner of activities together, ambling around the city, drinking coffee, and enjoying the sunshine. I used those visits to organize my parents’ kitchen and cook them food for the week.

cover 7b Top to Bottom FadeI was privy to Mom’s anxiety over her waning memory. I held her as she cried bitter tears and told me she felt confused. It was the first indication that our roles would soon be reversed, that I was losing my mom by degrees, that the only way forward was a painful decline that inevitably led to death.

It’s been more than seven years now. I’ve learned a few things along the way— to avoid questions in my conversations with Mom; how a person’s gait can define their ill health; that front-closing bras are an Alzheimer’s intimate friend; and how to judiciously use her memory loss for our gain.

I don’t think we can ever be prepared for the strange turns and curves life throws us, but I do know that it helps me to write about them. First came the poetry. Then, what was initially a project I started with my dad as a humorous initiation into the world of cooking and caring for a spouse with Alzheimer’s—we called it “The Man’s Emergency Cookbook”—eventually morphed into its current composition. Thus were born my cookbook and my weekly blog. I didn’t need to be alone in my frustrations, fears and struggles. I could connect with the community of Alzheimer’s patients, their families and caregivers who were only a short click away.

And through it all, I cooked. I took what Mom had taught me when she was still active in the kitchen and used that as a basis to experiment with easy recipes that fed my spiritual and emotional hunger. My book, The Lost Kitchen: Reflections and Recipes from an Alzheimer’s Caregiver, is a combination of recipes, poetry, and prose about my family and how we have shared the demands of Mom’s Alzheimer’s.

About the Author

Green, Miriam headshotMiriam Green writes a weekly blog, The Lost Kitchen,  featuring anecdotes about her mother’s Alzheimer’s and related recipes. Her blog also appears on the ALZ Blog from the Alzheimer’s Association.  Her poetry has been published in several journals, including Poet Lore, The Prose Poem Project, Ilanot Review, The Barefoot Review, and Poetica Magazine. Her poem, “Mercy of a Full Womb,” won the 2014 Jewish Literary Journal’s 1st anniversary competition. Her poem, “Questions My Mother Asked, Answers My Father Gave Her,” won the 2013 Reuben Rose Poetry prize. She holds an MA in Creative Writing from Bar Ilan University, and a BA from Oberlin College. Miriam is a 20-year resident of Israel, and a mother of three. You can find Miriam on Facebook and Twitter at @thelostkichen.

 

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From the AlzAuthors Blog: Meet Richard Creighton, Blogging at “Living with Alzheimer’s”

creighton, richard

By Richard Creighton

Why would a 78-year-old grandfather who doesn’t like to write become a blogger? The answer lies in my personal experience before my wife Kate was diagnosed with Alzheimer’s in 2011.

We played a major role in caring for our parents. There was a lot to learn. I felt we knew far too little about our parents’ experiences before our involvement in their lives. Kate and I were happy to have cared for them, but we wanted to make life easier for our own children. That meant keeping them knowledgeable about our lives. That, in turn, led me to start a journal the day of Kate’s diagnosis. This was a way to document our experiences for future reference.

After a year or two, I began to think that my journal might be of interest to others, especially those who are living with Alzheimer’s themselves. It was too much for a book, and I was continuing to make regular entries. A blog seemed like the way to go.

There are three things about our story that make it a little different from others. First, it is both an account of our post-diagnosis experiences, as well as a “real-time” account of what is happening every day. Second, ours is a story of optimism and joy. No couple escapes the challenges of dementia and the sadness that comes with it, but we have been able to live happily throughout our journey. Third, it is not a place to look for advice. I believe there are many other sources for that. This is simply our story. It tells what it’s been like for us to live with Alzheimer’s.

We’ve maintained an active lifestyle throughout our journey. Most of that has involved our everyday activities here in Knoxville. We attend most of the theatrical productions at three of our local theaters. In addition, we attend a variety of musical events that include opera, jazz, and Broadway. We have traveled a good bit over the course of our marriage. Since Kate’s diagnosis, we’ve enjoyed an African safari and trips to Machu Picchu, the Galapagos, and New Zealand. Our last and final international trip was to Switzerland in 2015, where we both paraglided off the mountain top overlooking Interlaken.

About a year after her diagnosis, we started eating out for all our meals except breakfast. For us, that has proven to be one of the best decisions I’ve made. The meals themselves have been secondary. The important thing is that it has helped to minimize stress and social isolation. It wouldn’t be for everyone, but it works for us.

We’ve been very fortunate. We continue to enjoy life and each other even though Kate’s memory is virtually gone. It is only now that we are reaching the hardest part of our journey. Our experiences may not be representative of others, but I am sure that almost any primary care partner will recognize the issues we have faced. If you get a chance, drop by sometime: Living with Alzheimer’s Blog.

photo 2 richard creighton jpgAbout the Author

Richard Creighton is a former college professor and business owner. He and his wife, Kate, met in college and have been married 55 years. They have a daughter and a son and five grandchildren.

Caregiving has been a central part of their lives since the Fall of 1989 when Kate’s father had a stroke. Three of their parents were cared for and died at home, his father in the hospital. Kate’s mother lived in their home for almost 5 ½ years with 24/7 care provided through an agency. Through those experiences Richard learned much about the health issues, living arrangements, and personal care for people with dementia.

Kate was diagnosed with Alzheimer’s two years before his dad died. He says that his experiences with their parents has helped him to be a better primary care partner for Kate. He is guided by his belief that there is no greater privilege than to walk with someone you love through the last chapters of her life.

Connect with Richard Creighton

Living with Alzheimer’s Blog

Twitter: @LivingWthAlz

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