Care Partner – Not a Career Choice but a Labor of Love
In 2014 after careful financial planning, my wife Nancy at age 62 retired from her meticulously accurate career as a Librarian Cataloger. She frequently expressed intense frustration and disappointment at no longer meeting her expectations of precision and thoroughness in her daily work tasks. Following a lengthy battery of cognitive tests by a neuropsychologist, Nancy’s diagnosis of Mild Cognitive Impairment (MCI) shook us to the core.
Decades earlier Nancy’s mother had passed away from Alzheimer’s at age 85. Now we faced my wife’s early signs of significant cognitive decline where MCI is a precursor of Alzheimer’s – a disease with no known cure nor new marketed drugs in over a decade to slow or reverse the effects on her abilities. Realizing the immense challenges that we faced, I too determined that full retirement would provide the opportunity to address the needs of now being Nancy’s full-time Care Partner.
Attending numerous local seminars, weekly cognitive training sessions, neurologist visits, Brain Fitness Club and participating in drug trial screenings and studies became our main focus. Through the results of several drug trials that included extensive blood tests, MRIs and spinal fluid taps, Nancy’s Early Onset Alzheimer’s diagnosis was confirmed in early 2015. We continued with participating in hopeful drug trials for which she qualified only to become disappointed by pharmaceuticals either ceasing the trial or her more rapid cognitive decline suspected by side effects or placebo (never confirmed due to double-blind studies).
Throughout the five years shared with Alzheimer’s we made the best of our lives where my motto was having “Good Days and Bad Moments.” I strived to minimize the bad moments. Learning patience and reminding myself that “it’s all small stuff” really did help with the frustrations of repeated questions, frequent drills to search for misplaced items, returning to stores and businesses to reclaim her purse, sweater, sunglasses, etc.
Nancy and I joined a couple’s support group that was extremely helpful in jointly learning about the disease, sharing our journey and creating a new social circle, which after five years still has several original couples participating. Sharing our story with family, friends and public through TV interviews was initially difficult. It proved therapeutic by shattering the mystique and stigma about Alzheimer’s causing each of us to learn more about the disease and the difficult journey ahead.
With Nancy’s declining abilities to control her rapid mood swings, anxieties and growing inflexibility to deal with the changes of travel, crowds and noise, I realized that placing her in a memory care community would be best for both of us. It was apparent to myself and others that the stress of 24/7 care partnering was taking a toll on my health even with hired home care professionals, Nancy’s increased agitation and aggression was not being well handled in the home. Plans were made well in advance and without Nancy’s awareness for a January 2019 placement in memory care following numerous short family visits and a final dementia-friendly cruise that created those positive memories for me and the many who love her. This placement was the most difficult decision I had to make in my life.
Now after a full year in memory care, Nancy has adapted well though her aggression has required sedating with anti-psychotic medications. Her room is filled with stuffed animals, dolls, family pictures and hundreds of cards on her doors and walls sent by our family and friends. Workers comment to me how much they enjoy seeing Nancy’s room and wished other resident family would add such decorative touches for their Loved Ones.
My year has been quite a challenge dealing with an empty home, loss of companionship and love of my life for 50 years! Through counseling and purposeful activities, I have been able to stay focused, more positive and finding new ways to enjoy life through friends and volunteering. Though the final decision to place Nancy was certainly most difficult, it has proved to result in positive ends for both of us.
My latest passion is the creation of Dementia-friendly Dining in Central Florida with a core team. We identify, train and promote restaurants willing to open their back room on select days and times to families and Loved Ones with dementia. Our first restaurant offering this dementia-friendly service starts in January with more planned in the upcoming months.
I am proud to say that the diagnosis of Alzheimer’s has spurred me well beyond acceptance to where opportunities to create quality life experiences and making memories do not end. I am committed to staying positive throughout the journey and making a difference in the life of my Loved One, myself and others – what we as loving people need to perpetuate.