What Alzheimer’s 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% by 2020 compared with 46% in 2001.
Alzheimer’s is a chronic disease that many seniors dread, and one which can be particularly challenging and heartbreaking for family members and loved ones to deal with.
While there is no erasing of the pain that can come with watching someone you hold dear struggle with a debilitating illness—understanding the dynamics of chronic disease can help you and your loved one.
When my mother had Lewy Body, a form of dementia, the cost of the disease impacted all of us financially and emotionally. Synonyms for chronic include words like “ceaseless and incurable”. To me, those words more accurately describe the journey Mom and all of our family traveled with her. I miss her daily, and there is a lot I would have changed in my understanding of her situation as a victim of chronic disease—if only I had known these lessons from the start.
If you would like to know what I wished I had, keep reading.
Living with a Chronic Disease Can Be Lonely
Chronic disease separates one from all the ‘normal’ people. In the case of Alzheimer’s, the feeling of being seen as crazy can be particularly isolating.
However, 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 maintaining a positive mindset is certainly helpful, these kinds of comments can feel alienating.
The bottom line is that 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.
Grieving Is Healthy
Losing one’s health—and in the case of Alzheimer’s, your memory and cognitive function—is something that will at some level inspire a feeling of grief. This will understandably occur in both the sufferer and those close to them.
While it might feel necessary to fight feelings of grief, suppressing it can merely lead to delayed and distorted forms of grief that are even tougher to deal with.
If you have a loved one that has been diagnosed with Alzheimer’s or another form of chronic disease, try to look for ways to grieve together. This can ease the loneliness of the grief for both of you and work to establish a feeling of bonding over the difficult time.
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.
Living with a Chronic Disease Is Expensive
Not only is living with chronic disease lonely, isolating, and scary, but it is also expensive. Almost all chronic diseases come with large medical bills.
Alzheimer’s is no exception. It has topped both heart disease and cancer as the most ‘expensive’ chronic illness, with some of the highest costs associated.
The Milken Institute estimates the total cumulative economic impact on treating people with dementia will reach $368 billion by 2040. More than 70% of these costs are attributed to the treatment of women.
Simple Joys Are Everything
Although chronic disease comes with a lot of very heavy facts to handle, there are also some heart-lifting lessons to be learned.
One of these is that simple pleasures are everything for those with Alzheimer’s and other forms of chronic illness. When life becomes weighted with large amounts of struggle, often it is the smallest things that can bring moments of joy and pleasure.
Grace Is a Powerful Tool
One of the hardest and most beautiful lessons I learned from my 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.
Years later, I now find out that studies have proved this. For one, the American Cancer Society published a paper stating that spiritual fortitude can measurably reduce pain, loneliness, and anxiety.
There’s Always Something You Can Do
Another lesson that Alzheimer’s can teach us is that no matter how bad a chronic illness may get, there is always something you can do.
If Alzheimer’s has progressed to the later stages, and your loved one is not able to speak anymore, you can still converse with them by acknowledging the sounds they are saying, and responding by directing and carrying the conversation.
On the other hand, if someone close to you is in the earlier stages of Alzheimer’s you can support them with cognitive coaching or stimulation classes.
There Can Still Be Happy Times with Alzheimer’s
Although Alzheimer’s is a ravaging illness, and chronic disease in all forms can bring hardship and emotional pain for all involved, do not forget that there can still be happy times.
These can come as the least expected moments, so stay open to them, and celebrate them when they do happen. These happy times amid adversity can be incredible heart-lifting, more so because they come out of the blue.
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 launch Fit Minds in the US in late 2016. Mom was one of Fit Mind’s first US clients to receive one-on-one cognitive stimulation.
If you are looking for support for your loved one who might be worried about Alzheimer’s, or has been diagnosed with it or its symptoms, please feel free to browse our programs, learn more about what we do, or contact us if you have any questions.