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

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

 

 

Laura Mansfield Shares Her Journey into Eldercare in “Geezer Stories: The Care and Feeding of Old People”

Mansfield Canva

By Laura Mansfield

Suddenly, five years ago, my world fell apart as my parents tumbled headfirst into old age. It was a pivotal time in my life. I was remarrying after a decade of being a single parent. My son was leaving the nest, starting college, while a special-needs stepson was landing unsteadily in my new nest. I was leaving my successful career at a high-powered advertising agency to start my own consulting business, which would allow me greater flexibility to care for my parents, my new family, and to watch over my son as he spread his wings into early adulthood.

It seemed doable. I was living the life of my generation—Gen T—the Taffy Generation, because “sandwich” just doesn’t cut the mustard. My friends and I are pulled like saltwater taffy as we have children later, our parents live longer, and we blend families in non-traditional ways. We’ve long since quit believing in the myth of work-life balance.

Untitled designI started writing about my journey into eldercare on Facebook in what I called #GeezerUpdates. The Facebook posts quickly gained traction and morphed into a blog at geezerstories.com and ultimately a book—my bittersweet memoir, Geezer Stories: The Care and Feeding of Old People.

There’s no how-to manual for taking care of old folks. We’re all flying blind here as our parents slide into their second childhoods. My book has a bite to it, with a backward glance at my own childhood. It’s a survival story about how to persevere in the face of inevitable hardship. It’s about choosing to age gracefully, despite the pain and the pathos. As my father, aka DooDaddy, famously said, “Growing old is not for the faint of heart.”

Over the past five years, my second marriage failed, my business faltered, and my son lost his way, as I found myself torn apart by the seemingly endless demands of caregiving. I moved three times and changed jobs four times, ultimately ending up back with the agency I left five years ago. And I lost both my parents agonizingly to cancer, which they faced with courage and dignity. My son graduated from college and has become his own person. My life has come full circle.

One of the many blessings of this tumultuous time was my father holding court at my Geezer Stories launch party. He had read the book—which was not always kind to him—three times. He could no longer walk or stand or even sign his name. I had a stamp made of his iconic scrawling signature, which he gamely stamped on each copy as he shook hands and gregariously greeted his fans that afternoon at Union Ave Books. It was a triumph. We sold out. It was DooDaddy’s last public outing. Continue reading

Mother-Daughter Team Collaborate on Alzheimer’s Caregiving Guide “If Only You Would Ask: A Guide to Spending Quality Time with the Elderly”

Sometimes questions about ‘food’ or ‘vacations’ or ‘school days’ will ignite a memory, creating a source of comfort and delight

For five years, Joan Berger Bachman and her 92-year-old mother, Eileen Opatz Berger teamed up to write, If Only You Would Ask, A Guide to Spending Quality Conversation with the Elderly. This easy-to- use book is a conversational resource, a manual and a tool for all those who struggle to carry on meaningful, enjoyable conversations. How did this book come about?

Here’s Joan’s Story:

When my father-in-law Bill was nearing the end of his life, I would visit him quite regularly. He had made the decision to stay in his own home until the end. Winters in Minnesota are long, cold and lonely, especially for someone who is afraid and/or unable to venture out. Being the dutiful daughter-in-law that I was, I felt compelled to make the 100-mile drive from Rochester to St. Paul to visit him. We would sit at his kitchen table, and I would tell him about what the kids were up to… and what I had been doing. His major topic of conversation was the rabbits he saw as he stared for hours out the back window of his house.

During this time, I shared with my mother how difficult visits with Bill were becoming. He had so little to share, and I wondered if the visits even mattered. Continue reading

“The Story of AlzAuthors,” or “How 3 Daughters of Dementia Started a Global Community of Authors Sharing their Alzheimer’s & Dementia Caregiving Stories”

The Story of AlzAuthors

Join me as I tell the story of AlzAuthors, the global community of authors sharing their Alzheimer’s and dementia stories to light the way for others, on Friday, June 21st at 2 pm at Middletown Thrall Library, Middletown, New York. This is my fundraising and awareness effort for the Alzheimer’s Association’s The Longest Day, an annual event. You can read more about my personal Alzheimer’s story on my Longest Day Participant Page. 

eReader BHAfter publication of my novel Blue Hydrangeas, an Alzheimer’s love story,  I reached out to two other authors I met online who also published books on this deeply stigmatized subject. What happened next was totally unexpected: We created a movement that includes 200+ authors, a website, bookstore, anthologies, community outreach, and more. Our mission: To bring carefully vetted books and blogs to caregivers and others concerned about Alzheimer’s and dementia and to break through the silence that often accompanies these diseases.

Sharing our stories makes us strong, but sadly too many of those with dementia and their loved ones caring for them are isolated, as shame and stigma often prevent them from disclosing their diagnosis. My  presentation will include a discussion on the power of telling our stories to make change – personally, globally, and legislatively – and how those overcoming or facing dementia and its caregiving can tell their own stories. Continue reading

Suzanne Bottum-Jones Explains Dementia to Kids in “Nice to Meet You… Again”

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By Suzanne Bottum-Jones, RN

Nice To Meet You… Again is the representation of years of sitting with families as a Registered Nurse, holding their hands, witnessing their frustrations, and sharing in their journeys through dementia. After fifteen years of wishing for a tool to help families learn strategies and see hope for their interactions, my father developed dementia, and I decided I needed to move my teaching outside of myself as the deliverer and multiply the effects that I, alone, could not make.  As I prepped for this, I remembered the countless families that made their final decision to stop visiting their loved ones because it was so upsetting to see the changes in their loved one and because of their fear of how these visits were affecting their children. This became my mission: to develop a tool that would help families change these moments of frustration by giving them the tools to help “see” a different expectation and journey, and change the flavor of their interactions.

bottum jones coverIn the short time the book has been available I have been blessed with  many responses from families of how they wished they would have had this resource when they were in this journey, or how it is currently changing their journeys and giving them back their joy with their loved one.  Professionals and family caregivers have stated they carry the book with them because hardly a day goes by in which someone they know or meet shares their journey of dementia. By offering this book, they state that they feel like they can finally do more then just say, “I understand;” in addition they can offer hope. Continue reading

AlzAuthor Daniel Kenner Shares How He Used an Oral History Project to Preserve His Parents’ Life Stories & Legacies

Kenner, Daniel

By Daniel Kenner

After many long months of exhaustive family struggles, cognitive and behavior changes, and a lengthy process of medical evaluations and tests, my dad, Buddy, received the devastating diagnosis of Frontotemporal Lobe Dementia (FTD). It was Valentine’s Day, 2013. FTD is a rare neurological disease that affects personality and social behavior, speech and language comprehension, and executive functions involved in reasoning, decision-making, and planning. Never to be outdone, my mom, Maureen, always the fierce competitor, was diagnosed with Stage 4 colon cancer only four months later.

That year, my best friend’s parents died in a terrible plane crash and that sudden tragedy struck me in such a profound way. “I am going to lose my mother and my father,” I remember thinking, “but I still have time.” I don’t know which is worse: losing parents instantly or watching them slowly deteriorate, but I knew I wouldn’t squander the chance to say goodbye.

Dad was a natural storyteller, and through that he became my favorite story to tell. He was my hero. The highest compliment I can give of my dad was he had a son that idolized him. Everything he loved I was determined to love just as much or more: Bob Dylan, Lenny Bruce, Marlon Brando, absurdist theater, and the San Francisco 49ers. But dementia made him quiet and apathetic; he no longer expressed an interest in the things we used to do together. Continue reading