By Angela Taylor
My father was a retired engineer with a love of family, golf, and buddies from his Air Force squadron. I became his caregiver when he developed LBD, a disease unfamiliar to us at the start. Gaining knowledge of LBD was the first step of many that ultimately led to my current role with LBDA. However long before that, I learned (the hard way, of course) about maintaining balance as a caregiver. This is a story about a daughter’s love, dementia, caregiving, and finding balance in the midst of the storm.
LIFE BEFORE LBD
Dad took an early retirement after 30+ years with a Fortune 500 company. He golfed frequently and traveled several times a year on vacations, including visits to see my two brothers and me. The only daughter of an Italian father, as a child I was the “apple of his eye” and that closeness remained into adulthood.
Dad’s sharp mind started to change subtly in his early 60s. At that time, a neurologist diagnosed his condition as mild cognitive impairment. My father lived alone, in our childhood home, with no family nearby. He began calling me for advice or assistance. At that time, I was a full-time, stay at home mom with two young children. My husband and I were both fielding calls regularly from Dad, mostly related to computer issues, assistance with travel plans, and other things he used to handle with ease.
JOINING THE SANDWICH GENERATION
Twice over the next year or two, he stayed with us for a few months at a time to recover from back surgeries. The addition of my sometimes confused, but easy-going Dad to the household was harder than I thought. Suddenly, I was part of the “Sandwich Generation,” caring not just for my own children, but for an ailing parent. His checkbook started to baffle him, so I started “helping” with his finances. Looking back, it was only the tip of the iceberg, as he was soon to be diagnosed with LBD.
After the second surgery, Dad needed support on a daily basis. He couldn’t manage his own medications and had trouble with routine household chores. His cognition waning considerably, Dad was in denial about his condition. My husband and I faced reality that my father would never again be safe to drive or live alone in his home of 30 years. We gently broke the news and together, we discussed his options. Dad decided to move into a long-term care residence, as soon as his house could be sold.
Just like caring for my young children whom I kept safe from harm, this effort now extended to my father. Throughout the time he lived with us, I focused on anticipating Dad’s needs, trying to smooth his transition from independence to dependency. We both felt the grief and anger over LBD stealing away the life he had built over the years, and because I loved him, I tried to spare him as much pain and disappointment as I could. So, I carried the burden for both of us. However, when I’d try to relax at the end of the day, my brain was still working on over-drive.
I admit that I cried often, leaning heavily on my stalwart husband. Interestingly, despite one of my most sacred personal values being balance and moderation, somehow, that value seemed a luxury I couldn’t afford when I was Dad’s caregiver. I made little time for social get-togethers with my friends, stopped exercising, and did little to recharge my emotional batteries. Richard A. Swenson explains it well in his book, Margin: Restoring Emotional, Physical, Financial, and Time Reserves to Overloaded Lives. Paraphrasing him, just as the page in a book has a margin of space around the edges, I had used up my own margin. There was nothing left in me to handle life’s little surprises. We know LBD to be full of surprises.
Through counseling I learned to focus my attention more on the present moment than the unknown future. From there, I grew to understand that by trying to shield my father from the unavoidable emotional impact of LBD, I was mistrusting his ability to handle his own emotions. When I stopped over-protecting Dad, I grew to appreciate how strong and resilient he was. I stopped carrying a load that wasn’t mine.
I finally acknowledged we were no longer a short term or crisis situation. This pace I sustained for months at a time, I certainly wouldn’t be able to endure for the long term. So my husband and I established new routines we could maintain for years. I started to make decisions balancing what was essential for both my Dad’s care with my own family’s well-being. As hard as it was, I awkwardly practiced setting healthier boundaries, even when it meant disappointing my father.
Here’s a good example of a small change that made a big difference. When living with us, Dad often followed me like my shadow. Later, I realized that he felt more safe and secure when I was around than when he was alone. Looking back, that feels really good but at the time, it was pretty annoying. My husband and I needed some private time to talk about Dad, our children, and our marriage. Unfortunately, my father wasn’t picking up on any subtle social cues any longer. So, we adapted our routine, going to bed an hour earlier some days just to talk, which meant that Dad also went to bed earlier. We also woke up an hour earlier than Dad every day and used that time to have coffee together. These little changes gave us more time as a couple.
When he moved into an assisted living facility, we set up a visitation routine that we kept for the next 5 years. In addition to taking him to all of his medical appointments, I took Dad out once a week for lunch and brought him over every Sunday for a family dinner. There were other times we got together for outings and activities too. No matter what, Dad knew he’d see me in just a few days. He counted on those visits, and they provided me with the space to take care of myself and the rest of my family too.
As caregivers, we all must be honest with ourselves and others in order to remain healthy and well-balanced. That may require requesting or accepting caregiving help from family members or outside professionals. It may mean finding time for a hobby that has no practical purpose in your life other than it makes you happy. Take it from me.
Angela Taylor is the Director of Programs for the Lewy Body Dementia Association. In 2004, Angela joined LBDA as a member of LBDA’s Board of Directors when she was a caregiver for her father who had Lewy Body dementia. Angela now oversees all of LBDA’s programs and services, advocates to federal agencies on behalf of LBD families, and serves as the liaison to the Scientific Advisory Council.
Used with permission, Lewy Body Dementia Association, www.lbda.org, © 2014.
There is clear evidence of caregiver burden and grief associated with LBD disease manifestations. It is very important to comprehensively address the needs of patients with LBD and their caregivers, and the Lewy Body Dementia Association is here to help. To learn more, please visit www.lbda.org. To view Angela’s story on the LBDA Web site, please click here.