Fourteen years ago, my mother was diagnosed with an aggressive form of breast cancer. She was a brilliant woman who’d spent the majority of her career in the legal field as a very sought-after court reporter. But as her disease progressed to her brain, her physical and mental health slowly declined. The woman I knew, the one who could add columns of numbers in her head and spell medical terms longer than her arm, slowly lost the ability to balance her checkbook and manage her meds.
It soon became evident that someone would have to step in and help my father manage her care.
Unlike a lot of caregivers, I was fortunate. I have two sisters and a brother. All of us agreed to give one week a month to come “take care of Mom.” But I lived 8 hours away and had to make the long drive alone. Added to the strain of doing my part for Mom, I had a husband, a drama business, and two teenagers still living at home.
For two years, I juggled Mom’s care and my family. It was the most wonderful thing I’ve had the privilege of doing. It was also the most stressful, exhausting, and one of the saddest times in my life. When Mom’s thoughts were clear, we’d reminisce about old times, or I’d ask questions about her childhood. I did my best to collect her knowledge of our family tree. But as cancer progressed in her brain, the good days became fewer and her thinking became more like that of someone suffering from Alzheimer’s disease.
Mom had little notebooks everywhere with jottings that made no sense and her actions became dangerous. One day she drove her motorized wheelchair to the curb, slid into her old Lincoln, left her scooter on the side of the road, and drove herself to Walmart. When she got to the store, she realized that without help, she couldn’t get to the motorized cart she needed to navigate Walmart. She sat in the Walmart parking lot for thirty minutes, had a good cry, then turned around and drove home. Fortunately, she didn’t wreck the car, she found her way home, and her scooter was right where she left it.
To keep from crying about Mom’s deterioration, I learned to laugh. Humor became my key to surviving the horrible process of watching pieces chip off of this person I’d always thought was invincible. Watching Mom deal with her impending death taught me a lot about how I wanted to die. There were things I wanted to do and so many things I wanted to say while I still could. Most importantly, I gained a deeper appreciation for each day and the importance of faith, friends, and family.
But I wasn’t sure what to do with the stress I felt for how much time taking care of Mom was taking away from caring for my family. We’d just moved to a new city. My teenage children were adjusting to a new home, new school, and trying to make new friends. The burden of taxiing them to all of their activities fell to my husband. Every time I missed one of their activities, I was swamped with guilt. When I was with Mom, I felt like I was failing my kids. And when I was with my family, I worried that Mom’s care would fall through the cracks.
While this fictional story does not depict the exact journey I had with my mother, many of the feelings portrayed in the three-book series come from the ups and downs I experienced during the caregiving process. When I did the research into the different types of dementia, I realized the dilemmas that arose during my intense period of caregiving were not unique to me. Millions of you are currently sacrificing your time, money, and efforts to care for an aging parent. Your struggle is real.
My prayer is that this three-book series will give you permission to laugh, rest, and to ask for help when you feel pulled in a thousand different directions. That you will experience love on the deepest level when you give love to another—whether or not they give love to you. That by your loving actions you will teach your children what it means to love, even when it’s difficult. That you’ll find something to laugh about every day. And that, in the end, you’ll forgive yourself for feeling like you failed everyone who had you sandwiched between two impossible choices.
Lynne Gentry Author Bio
Lynne Gentry is an actor/director turned award-nominated fiction author who loves using her crazy imagination to entertain audiences with her books. Her varied works range from the highly-praised time travel series (Carthage Chronicles) to two laugh-out-loud romantic comedy series (Mt. Hope Southern Adventures and the Women of Fossil Ridge). She recently released a co-written medical thriller (Ghost Heart) with author friend Lisa Harris. RT Reviews calls Lynne Gentry a Top Pick author and one to watch. Readers say her writing is extraordinary and her stories exceptional. When Lynne is not creating enchanting new worlds, she’s laughing with her family or working the cancer wards with her medical therapy dog. Find out more about Lynne and her books at www.lynnegentry.com.
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.