By Larry Sabol
My wife Mary and I have been married for 32 years, and have three children and six grandchildren between us. We have lived in Kent, WA for the last 21 years.
Mary was diagnosed with Lewy Body Dementia with Parkinsonism in May of 2015. She first manifested signs of mild cognitive impairment in 2010, but symptoms of Lewy Body did not clearly present themselves initially — or even later in 2012 when more testing was done including a brain MRI. The working diagnosis at that time was acute anxiety and depression.
Both Mary and I have been very fortunate in having a strong support system that includes family, friends, a close church group, counseling, neurologists and a caregiver support group. Still, I have found the journey with my wife to be one of twists and turns shrouded in uncertainty. Early on, I realized I was in uncharted waters. There was very little in my life experience that prepared me to be a caretaker, and the skills I had developed over the years were only of partial help.
Caretaking has been a learn-as-you-go process. To support my wife, I needed to find a new way of thinking about her condition, one that was based on the constantly changing nature of the disease. Techniques for providing support would work for a while and then become ineffective. New methods constantly had to be found. It involved a lot of trial and error and still does.
Our journey has not been uncommon, with caretaking gradually becoming more intensive. We began with only me caretaking in 2011, then we hired in-home assistance beginning in 2016. It was when my wife moved to an adult family home in 2017 that the nature of my caretaking began to noticeably change. The outward tasks of caretaking were assumed in large part by others, and I began to look at my role as a caretaker in a different light.
I did a “Virtual Dementia Tour” which simulated conditions both mentally and physically within a person living with dementia. The immediate surroundings were dark and confusing. I couldn’t remember the tasks I was asked to perform. I couldn’t even walk the same. Even more unnerving was the feeling that I was separated from myself, that there was someone else inside me doing the moving around, the seeing and the talking. I briefly experienced what people with dementia are often overwhelmed by: fear and loneliness.
Caretaking now took on a new dimension. It became less about tending to Mary’s symptoms and focusing more on her emotional and spiritual needs.
I began to look at what I could do to keep her connected with life itself — with her life, not my life. I focused on finding what hadn’t changed in my wife, instead of what had. I came to believe that at the very core of her being, she was still Mary. I began concentrating more on touching her core self, to nurture her on an emotional and spiritual basis.
I also began to see my support group in a different light. All of it was held together by a spiritual connectedness that had more importance than just me alone. Call it what you will, it was a power greater than myself. The description was less important than the spiritual expression. I also understood that to give Mary spiritual tending, I had to have a supply from a spiritual source.
I had been told that I needed to enter Mary’s world because she was not capable of entering my world. I now try to switch the emphasis for Mary as well as myself to “just being” rather than “doing.” I always felt that I must be doing something to take care of her, but I began to realize that just being with her closely in her world in many ways provided stronger innermost comfort.
I have been more mindful of “staying in the now” and I remain more in the immediacy of Mary’s view. I try to stay right smack in front of her awareness. I quit projecting.
I have begun to look at our days together as small polished stones in a big mosaic. Up close, that’s what you see in a mosaic — the individual stones. You must stand back to see the big picture. I stopped looking for the big picture, I just polish the individual stones. I think small and stay small.
I remind myself a lot that she’s still in there, that her heart and soul are still intact. I have learned to listen better and to talk to her in feeling language. I try to convey to her a feeling of understanding, not a cerebral understanding, and I ask her how she feels about things. This allows me to find moments of joy in the day — the kind of joy that gives me hope of finding joy again tomorrow.
I see myself more as an instrument of a higher purpose to keep Mary connected with life. Even if she doesn’t recognize me or acknowledge who I am at some point, it will still be important that she knows she is important. I work at self forgetting when I am with her.
My journey with Mary has taken me to aspects of life that previously I would have never considered. She has been, and continues to be, my teacher.
November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month. The Alzheimer’s Association marks these events by recognizing and honoring the more than 16 million family members and friends across the U.S. who are currently caring for a person living with Alzheimer’s. Join us by sharing a personal tribute message on our website at: http://alz.org/honor.