Your parent is diagnosed with Alzheimer’s disease or other dementia and as their biological child you wonder, “Will that be my fate?”
An article of mine, Me Worry? Not on your Life was recently published on the CogniHealth website, a company that in partnership with Alzheimer Scotland, developed a caregiver aid for those – especially family members – providing care for a loved one with Alzheimer’s disease or other dementia.
I chose the topic of whether or not dementia might be passed along to biological family members because as a daughter who witnessed the decline of her father as a result of dementia, I certainly had an opinion on the matter. Does one need to worry their entire life about the chance of acquiring Alzheimer’s disease?
I hope you will read my article that while transparent and painfully clear, also provides many rays of hope and encouragement for those in similar circumstances.
At the very least, I am certain you will come away with a clearer understanding of how little value worry contributes to ones’ life.
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.
FOLLOW THE AUTHOR:
FOLLOW THE AUTHOR:
Author website: www.lovingzelda.com
Author Facebook page: @LovingZeldaCaregiving/
LinkedIn: Sue Anne Kirkham
Twelve years ago today, my father died from complications of Alzheimer’s disease. That morning I had received a call from the memory care unit where Dad had lived for several years. The nursing manager of that unit said if I wanted to see my father again before he died, I should come as soon as possible. (I had spent a week with him the month before and knew that his prostate cancer would most likely hasten his death.) I first called my husband at work to let him know I would find a flight from Seattle, WA to Medford, OR and be gone…for how long? I didn’t know. Then while on the phone with my brother and sister, I booked my flight online with a tentative return, threw the very minimum of clothing in an overnight bag, and headed to SeaTac International Airport.
If you have read my novel, Requiem for the Status Quo, you’ve pretty much read the account of what transpired for me at my father’s bedside; some of the happenings that day/evening were altered, but the gist of what transpired are contained in Chapters 41 & 42.
Upon my return to Seattle, my energy level was depleted yet still on alert. When you have a loved one with a debilitating disease, a state of alertness is the norm – the status quo of constantly being in a state of emergency, if you will. You keep waiting for the phone to ring with the latest development – such as it did for the last time on October 13, 2007 – but that phone number’s appearance on my Caller ID had ceased.
What hadn’t ceased was the business of dying – all the financial and estate matters one cannot ignore – but because of my father’s diligence and organization leading up to his Alzheimer’s diagnosis, much of what I needed to do on behalf of his estate and us survivors, was readily dispatched in the months that followed my father’s death.
But the “now what?” of life post-caregiving was front and center for me. Initially, I wanted absolutely nothing to do with anything having to do with dementia. I continued to financially support my local Alzheimer’s Association and participated in one more Walk to End Alzheimer’s, but that was it. Then my heart called and I became an Alzheimer’s Association caregiver support group facilitator and shortly thereafter, I entered the world of long-term care advocacy by becoming a Washington State LTC ombudsman, both of which I did for five years.
Then my heart spoke to me again, this time it said, “How about writing about your experience as Dad’s caregiver?” I ignored that thought until I no longer could – it wouldn’t leave me alone! I dragged out all of Dad’s records and my numerous journals, sat at my dining table, and over many months’ time, outlined how I would honor my father’s journey and my family’s experience within the pages of a book that might benefit others.
That was five years after my father’s death. My book was published five years later.
Now twelve years after the end of my father’s Alzheimer’s journey,
my book still manages to make its way into the hands of those who need it.
If you, or someone you know, needs encouragement and a renewed sense of hope,
please make your way to your favorite bookstore, or find it right here.
Blessings to you today, and always.
In celebration of the many former and current family caregivers in the world, and in honor of their loved ones with Alzheimer’s or other dementia, AlzAuthors has released the eBook of Volume II of Alzheimer’s & Dementia Caregiving Stories. The introductory price is only $1.99. Be sure to get your copy now!
How often have you felt defeated because your day-to-day existence is somewhat routine and boring?
The life of a family caregiver, attending to a loved one with a disease or malady that is all-encompassing, is never Same-O Same-O. Any semblance of status quo flies out the window shortly after taking on this learn-as-you-go caregiver role. The boring life about which the family caregiver used to complain no longer exists as she or he memorializes that long-abandoned way of living. My memorial to status quo existed while attending to my father during his Alzheimer’s journey.
Requiem for the Status Quo speaks of that memorial to things that once were.