“I was physically, mentally and emotionally exhausted. I’m now rebuilding my health and life from the ground up.”
Julie Fleming lost her father to Alzheimer’s this year after being his caregiver for many years. She is the founder of The Purple Sherpa, a support group for caregivers.
I noticed that my father wasn’t quite himself three years before he was diagnosed with Alzheimer’s Disease. Daddy was a corporate litigator, so he was always on top of every detail, but in 2008, I noticed that he was confusing some basic legal principles, and making financial mistakes that he never would have before. No one else close to us had noticed any problems, so I convinced myself that I was overreacting.
Three years later, after a trip to the ICU, Daddy’s doctor gave us the diagnosis, a prescription for Aricept, and a request to return in six months. I started reading books and articles about Alzheimer’s right away. I was horrified as I read about the things my dad might experience as the Alzheimer’s progressed, and I quickly decided not to read too much about problems that might never happen. My motto became, “Look forward, look back, but LIVE NOW.” As it turned out, Daddy did encounter most of the problems I’d read about.
The most important of the many lessons I learned through caring for my dad is the power of the present moment. Remembering what Daddy had been able to do in the past would have broken my heart in comparison with what he was able to do once Alzheimer’s took hold. I learned to accept and love him in whatever state he might be in the present moment. I learned to appreciate the friends who stayed in touch with us both and to forgive and release the people who had been an important part of my dad’s or my life and then disappeared when times got hard. As the disease progressed, I learned to look for moments of joy and connection and to celebrate every good thing.
Caring for my dad is the hardest thing I have ever done. Even though we were fortunate to have help from professional caregivers, I learned to be on watch at all times. After my dad’s death last July, I was surprised to discover that I’d been living on adrenaline and that despite my efforts to care for myself, I was physically, mentally and emotionally exhausted. I’m now rebuilding my health and life from the ground up. I am grateful for the memories we made and the photos and journal entries documenting them. Alzheimer’s took my dad’s life, but it could not take the love we shared.
Julie is CEO of The Purple Sherpa, a nonprofit organization dedicated to the support, education and encouragement of dementia family care-partners and caregivers. Find The Purple Sherpa on Facebook and on the web at www.thepurplesherpa.org.