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What Experience Taught Me About Chronic Disease
Chronic disease is on the rise worldwide. According to the World Health Organization, the proportion of the burden of chronic conditions is expected to increase to 57% in 2020 compared to 46% in 2001.
Dementia is a chronic disease. It is the umbrella under which a series of other diseases like Alzheimer’s, vascular dementia, Lewy Body, frontotemporal dementia and mixed dementia live.
While there is no erasing the pain that comes with watching someone you hold dear struggle with a debilitating illness—understanding the dynamics of chronic disease can help.
Living with a Chronic Disease is Lonely
Chronic disease separates one from all the ‘normal’ people. In the case of dementia, the feeling of being different can be particularly isolating. Almost all chronic diseases come with this dynamic. The uninformed might unintentionally make assumptions that ‘it can’t be that bad’, ‘you don’t look sick’, or ‘just be positive.’
While most people are only well-meaning, not many know what it is like to live with a chronic illness, and the inevitable feeling that results from this is isolation and a degree of loneliness.
Dementia and Alzheimer’s is a Family Disease
Mom had Lewy Body, a form of dementia that presents features near Parkinson, such as tremors and stiffness. It comes with sleeping disorders, visual hallucinations and paranoia. Robin Williams committed suicide while struggling with Lewy Body and Casey Casum, the longtime host of the syndicated radio show “American Top 40” died of it.
Mom’s diagnosis triggered a range of emotions for everyone in the family — including anger, denial, fear, frustration and sadness. And, while we were all learning to live with the new normal, we were also confronted with the many decisions to make about treatment, care, living arrangements, finances and end-of-life care.
The confluence of those events made family conflicts nearly inevitable. Like all families, we have a history of relationships and roles that affected how we each reacted to the diagnosis and how we each perceived our roles in providing care and support.
Chronic Disease Has a Stigma
Even though 1 in 3 adults worldwide suffer from chronic disease, there’s still a stigma around chronic illnesses. Research has shown that people living with chronic diseases experience “anticipated stigma”, a belief that they will face discrimination and stereotyping in the future.
Put simply, this means that the dread of discrimination can account for a very significant amount of suffering in those with chronic ailments.
Alzheimer’s, in particular, comes with its own stigma – that of being crazy, losing your mind, being unbalanced, etc. As Mom’s disease progressed, I watched people ostracize her. She told me, “People don’t want to eat with me anymore.”
There is Hope
Coming to terms with the fact that the disease is incurable had a tremendous emotional impact on Mom and all of us. But as the Milken Institute notes “With no cure in sight, we must double down on efforts to reduce risk, maintain cognitive function, and preserve brain health.”
That’s why I chose to bring ten-year old, Canadian-based Fit Minds’ cognitive stimulation program to the US in 2017. Mom was one of Fit Minds’ first US clients to receive one-on-one cognitive stimulation. The neurology practice that treated Mom now regularly refers clients and nearly 50 senior living communities in the US for the first time offer Fit Minds’ cognitive stimulation programming.
There Can Still Be Happy Times
Mom was happy nearly all the time. She had dinner with my family and me every Sunday. Always concerned that I was working too hard, Mom would insist on helping me set the table or wash clothes. As these chores became increasingly hard for her, my children learned to “follow and fix” what she had done incorrectly, preserving her dignity. She laughed with us, sang with us, sometimes danced with us and always felt joy with us.
Grace Is a Powerful Tool
One of the hardest and most beautiful lessons I learned from Mom was that grace is transcendent. It is a powerful tool, and even on the toughest of days, grace can ease the pain.
Mom’s last months were filled with ceaseless doctor appointments, emergency room visits, and hospitalizations. Her disease taught me to pray for things I had never prayed for. My prayers changed as the disease progressed. I prayed for her to have a good quality of life, to never forget who her family was, and ultimately to pass peacefully. I also found myself praying that I would have the patience and courage she needed from me. Dementia changed our relationship. It did not end it.