Lively Blog, Now a Book, The Dementia Chronicles
I started blogging about my Mom, Amie, after she moved in with us―after the Alzheimer’s, the congestive obstructive pulmonary disease (COPD), and the schizophrenia nearly killed her living alone. I wrote close to twenty-five posts, after which, I compiled them into my book, The Dementia Chronicles. I hoped our story would help others who found themselves as a caregiver for someone they loved.
During a visit from Phoenix with my sister and grandmother, Mom fell down the last step of our stairs and broke her hip. Within two years of that visit, Mom had moved from Phoenix to Friday Harbor, Washington to live in a separate home on our island property.
Back in May 2003, on our wedding day, Bob had to assist my Mom to walk a mere five-hundred feet from her house to our backyard where we held the ceremony. A month later, Mom was in the ER experiencing her first respiratory attack after having smoked for fifty years.
For a spell, Mom kept at bay what doctors later diagnosed as COPD. In 2010, during another visit to the ER, x-rays showed scarring within and around her bronchial tubes, invading her lungs. Mom declined steadily after that with cognition red flags frequently appearing.
By 2013, she complained of electricians stealing her checks, hackers breaking into her old college records and stealing her social security number―two of the many stand-out issues she insisted were true. By September 2014, she could no longer drive so we disabled the car engine and lied to her, telling her the car was broken and that I would drive her anywhere she wanted to go.
Mom was furious. Her anger became exacerbated, exhibited by bouts of paranoia and more detailed hallucinations. As she grew physically weaker, we knew we had to move her into our home. So, in November 2014 we set out to revamp our garage into a studio apartment. It turned out beautifully―complete with an enormous stone fireplace to keep her warm. It was so wonderful, my husband, Bob, threatened to move down there himself.
Mom fought against the move, but the only other choice was putting her into a memory care facility. With few choices on the island where we live, she would have gone to a facility on the mainland―a four-hour ferry ride or costly thirty-minute flight away – not viable options.
After transitioning her to the studio apartment, Mom tried to escape. I found her huddled by our front door gasping for air, holding her cane and, sitting dutifully next to her dog, Teddy, his own leash in-hand.
But, the hallucinations grew stronger.
Within a month of the move, the big hallucination occurred. She believed someone had snuck into her apartment, shimmied across the floor on his back over to her fireplace and had stuffed crumpled newspaper into the chimney flue causing smoke to billow. It was a cold October but she opened all her windows to air out the room anyway. There was no smoke. There was no man stuffing newspaper. What there were, were sounds―tinny “plunks” whenever the gas fireplace kicked on and off.
After a month of fighting the hallucinations and failing, I started Mom on anti-psychotics and anti-anxiety meds. Within a few days, the visions calmed.
When she normalized, I learned many things, like, how much Mom loved grilled cheese sandwiches and chocolate shakes. The in-home nurses told me I had earned an unofficial OTJ nursing degree.
One month later, after I finally figured out how to manage our lives with Mom’s, she died. I didn’t go out or to church for four months.
I still have moments when I hear Mom call for me―that’s how PTSD is. I remember screaming, anger flaring about anything and everything for six months after she died―fortunately, it was short-lived. But this is the thing, if I had a choice to do it again, I’d do it all over, the same way, but with more chocolate shakes and grilled cheese sandwiches for Mom.
Susan Wingate is a #1 Amazon bestselling author of over fifteen novels, many of which are award-winners. She writes across both fiction and nonfiction genres and typically sets her stories in the Pacific Northwest where she is the president of a local authors association. She writes full-time and lives in Washington State with her husband, Bob.
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Meet Sue Anne W. Kirkham, author of Loving Zelda – A Stepdaughter’s Caregiving Journal
by Sue Anne W. Kirkham
How it all began:
It was late October when my husband, Jack, and I showed up at my father and stepmother’s townhouse to walk their two dogs—a duty we’d taken on several months earlier, after they announced they no longer felt up to the task. At 84, my father suffered from respiratory and circulatory problems; at 81, my stepmother showed early signs of dementia, with some Parkinson’s-like tremors erupting, just to keep things interesting. I was determined that they not be forced by these circumstances to give up their pets. On this day, Dad greeted us at the door with another shocker. “We have to move into assisted living.” No hello. No how ya doin? Just this stark declaration.
Dad and Zelda had always been younger than their years in every respect. He continued his career as a psychologist into his late 70s, and the warm, witty, delightful woman he married in 1972 had always been active and ready for a new adventure. Each enjoyed absorbing hobbies, and they eagerly traveled the globe together for most of their 32-year marriage.
As Jack and I herded the pups that chilly autumn day, I remained troubled by the prospect of a radical change in lifestyle for my beloved father and stepmother. So I hatched a plan: leave my dreary clerical position and devote myself to lightening their load and injecting some sparkle back into their lives. I would carve out a new weekday vocation as companion/housekeeper/social director/exercise coach/assistant cook.
I kept a journal from Day One as, over the next 18 months, Zelda suffered incremental losses of mental acuity. Less noticeably, my father’s COPD was cranking toward a dramatic climax that none of us anticipated. While I focused on finding enough fingers to plug the ever-multiplying holes in the home-front dike, Dad’s staunch self-sufficiency propelled him through his own physical deterioration. Meanwhile, I watched Zelda—former organizer of Fourth of July kitchen band marches—fade into confusion. To be at her side through the slow, agonizing loss of her Self would prove to be the most affecting experience of my life. It soon became clear that the course I was chronicling was strewn with striking contrasts: moments of high hilarity and wrenching despair; snapshots of the struggle for dignity in the face of decline; arcs of mood between fear and optimism, gratitude and resentment. Hobbling my efforts to navigate these troubled waters was the crushing blow of friends and family members challenging my motives, questioning my trustworthiness.
This enterprise had much to teach me about life and death, human limitations, faith, and endurance. The struggle, as they say, was real. But the joys and rewards were every bit as genuine.
Why I wrote about it:
As my time with Dad and Zelda ended, a fresh commitment shaped my mission: I had been seeking a book topic I felt passionate about. This was that subject. I would share our experiences, unique amidst all the universal similarities, to promote understanding and support others confronting the challenge of caring for those who once cared for us. I chose the memoir format because, as dementia robbed Zelda of her voice, my journal became the story; it painted a complete and authentic picture for readers. Memoir also allowed for the interweaving of family history, a fleshing out of characters, and a means of affirming through narration the individual’s continuing worth, untainted by the loss of physical and cognitive abilities.
ABOUT THE AUTHOR
Sue Anne Kirkham is a freelance writer who blogs atwww.yourrecipesforlife.com. She has published print articles on aging and family relations as well as online profiles of inspiring everyday heroes, and essays on health-conscious living and the peculiarities of contemporary culture.
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FOLLOW THE AUTHOR:
Author website: www.lovingzelda.com
Author Facebook page: @LovingZeldaCaregiving/
LinkedIn: Sue Anne Kirkham