Alzheimer’s Disease is insidious, not a respecter of intelligence, income, skills or abilities, or even age. It tends to strike those in their later years but has been diagnosed in people in their thirties. While we don’t yet understand exactly who will develop it, or how the process will look for each person, we’ve learned that this journey is best done in community. Facing the diagnosis is frightening for both the person and those who love them, and there’s no way to predict how it will go. The best thing we can do is love and support each other whether they are the afflicted or the caregiver.
I’m so pleased to share Mary K. Doyle’s ongoing story of living the Alzheimer’s journey with her husband. A woman of strong faith, Mary had to learn her limitations when it came to caregiving, and where to find joy in the everyday moments of this life.
Mary, please tell us a bit about yourself. I’ve been writing professionally since 1972 including radio copywriting, marketing, newspaper reporting and feature writing, copywriting and producing for cable TV, advertising with an agency, online web content, blogging, and writing books. I have 8 books and a booklet in print, one under contract for publishing, a manuscript out, and another in the very early stages of being written. I also speak on topics related to my books which center predominately on faith and Alzheimer’s disease.
You are currently walking the Alzheimer’s journey with your husband, Marshall. Tell us how it started. My husband, Marshall, was forgetful since I met him, which may have been signs of the disease long before anyone noticed. What alarmed me was a change in his personality. My gentle, easy-going, happy husband became increasingly irritable, depressed, and angry. His forgetfulness increased beyond missing appointments and losing items to not finding his way home or remembering recent events.
Share what your experiences as a caregiver have been like. How did you adapt to the switch in roles (from being the wife to being the caregiver)? How did that go for your husband? The first years were difficult because I didn’t understand what I was dealing with. Once we had a diagnosis, I conducted extensive research – because that is what I do. I learned behavior modification that helped us considerably. For example, I avoided arguing with Marshall or trying to make him understand situations he no longer had the ability to do so.
The role from spouse to caregiver went fairly well. I’d assisted Marshall on stage (he’s a magician) and with his office work prior to his illness, so he was used to me working with him. He didn’t notice how the workload shifted to me increasingly over time.
Did you have others involved in caregiving, and decision-making? If so, how did that process work? If not, how did you make decisions? I relied on our family practitioner and neurologist for decision-making. They offered excellent guidance, but there were times I thought I knew better than the doctors. I waited too long to follow their advice on most things. For example, the doctors wanted me to move Marshall to managed care several years prior to when I did.
What have been the hardest parts of walking the Alzheimer’s journey with your husband? All of it! For different reasons, the entire journey has had challenges in different ways.
Have you been able to find joy in this life with Alzheimer’s? My joy comes from my visits with Marshall which are often very sweet, my family, friends, and faith. I also have resumed activities, such as quilting and lunches with friends, which I hadn’t done for years.
Where/how have you found help and/or resources? Which have been the most useful? My go-to resources are staff members at my husband’s managed care facility, the Alzheimer’s Association, and our physicians.
What is one of the best pieces of advice you’ve received? One of the worst?
Marshall’s neurologist told me at the beginning of this journey not to worry about things that may never happen. It is a waste of energy. When I begin to worry about the future, I remember these words.
The worst advice comes from people who’ve never cared for a loved one with Alzheimer’s disease for any length of time. They don’t/can’t understand the reality of the situation.
What advice can you share with others currently on this journey with their spouse?
The best advice I can offer is what I didn’t do for so many years, and that is to care for yourself. It seems impossible to step away when we’re in the trenches but doing so is our means to our survival.
Marshall’s shown symptoms of Alzheimer’s disease since at least 2004. By the time I moved him to managed care, I’d cared for him at home for 10 years. I’d developed a number of debilitating illnesses and lost considerable weight. The doctor warned me I was near death and would then not be available to help Marshall in any way. It took years for me to recover, and I continue to suffer due to the damage caused during that period. Family caregivers must be on high-alert 24/7 for many years. The relentless and intense level of caregiving burns us out quickly. Had I listened to our doctors and taken a few hours off every week and a two-week respite break every six months, I wouldn’t have put my own health at such great risk.
Anything else you’d like to share? Even after moving our loved one to managed care, we remain involved, and no one can replace our presence and our love. This certainly isn’t the way we chose to live as a married couple but there continues to be cherished moments reserved entirely for us throughout the journey.
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Mary shares parts of her journey, along with encouragement and wisdom, on her blog (see link below) and on her website. She’s also a prolific author with books on personal reflection (including small group materials), navigating Alzheimer’s, Scripture pared with beloved fairy tales, nurturing faith as we age, amazing women heroes, and facing and living with grief, Mary offers insight, help, encouragement, and healing to her readers.
You can find her books on the ACTA website HERE.