I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.
I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.
As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?
I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.
When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.
When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.
Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.
The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.
Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.
There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.