By Seema Abassi, MD
(speaking in photo above)
My father was a retired air force officer. He was in excellent health until one day, when he was 80 years old, he suffered a heart attack and needed an emergency bypass surgery. The surgery was a success, but after his discharge from the hospital, we noticed significant memory changes and thence began his seven-year journey with dementia. He passed away about three years ago.
My parents lived next door to us and I became his primary caregiver with help from my brothers, both of whom lived out of state.
Being a physician, I had some knowledge of the disease, but I quickly learned that it is so much more than just memory loss. It affected every aspect of my father’s life. Simple tasks like showering and self care became a huge challenge. Providing care to a person with dementia is made more difficult by the fact that they often refuse help, since they do not understand why they need it.
In later years of his life, my father did not remember our names or even how we were related to him; but honestly, that was the less distressing aspect of the ordeal. Many people with dementia undergo a personality change. People may go from being soft spoken and gentle to being paranoid — and that is one of the hardest things for a lot of families to deal with.
My father’s physician was a geriatric specialist, a doctor who treats older individuals. In spite of that, he was not of much help with the dementia- related issues.
My father was able to stay at home until the end. When we were not at home, we made sure there were paid caregivers present day and night.
In the end, my father passed away from congestive heart failure. He was still able to walk and still able to feed himself, but I know people with dementia who forget to even do that.
If I had to pick one word for our experience with this disease, I would say it was “overwhelming.”
I know that my family’s experience is not unique. Over 100,000 people in the state of Washington suffer from some form of dementia and over 5 million people in the United States do. This number is projected to go up several folds over the next few years. The ultimate goal is to find a cure for this disease, but until that happens, we need public policy changes and improved physician training so that we can provide better care to individuals with this disease and better support to their families.
Tools like the Dementia Road Map, which was created by the Dementia Action Collaborative, are very helpful. They give guidelines of what to expect and how to navigate some of the issues. I wish my family had access to something like that a few years ago.
I am really thrilled that funding for Alzheimer’s research at NIH has increased several folds over the last few years and I am hopeful that like many other diseases Alzheimer’s will become a treatable disease and hopefully soon.
What’s your connection to Alzheimer’s disease or dementia? Join us for Advocacy Day in Olympia, WA on Feb. 18, 2020 and share your story with Washington State legislators, encouraging them to fund better care and support programs and priority recommendations from the Alzheimer’s State Plan. Your voice matters. Learn more here!