I am sitting outside this morning at our medical lab waiting in line to have tests done this a.m., after visits with my doctor yesterday. He wants them done right away, and apologizing to me for what it entails now to access and get any tests done, a true sign of our failing health care system. The pressure on the whole system is palpable. My doctor will track me down before the weekend and then I will also see him for a double time appointment Monday, with the following week being a day with my specialist at the hospital for a series of heart tests, it’s working too hard again.
This brings me to the point of the title of this blog. Dementia in and of itself is a difficult and challenging illness to live with and navigate, so many different types, so many variations of symptoms. Yet still after so many years the focus is always about memory loss. Memory loss for sure can play havoc, it usually sees a progression as time ticks on. However it is the many other aspects that are the more difficult to live with, navigate and understand and even more do to get others to understand.
A good example is my own dementia, vascular dementia, early onset set vascular dementia. The biggest piece of my dementia is not my dementia but the vascular component which effects my dementia. Blood flow issues, TIA’s, my whole vascular system rains havoc, impacts all my major organs, my heart is and has been taken a big hit. Why is this important, because all of these things combined effect my dementia, it’s different each day, sometimes I get a really good stretch where I can almost snd I say that in a light heart manner, convince myself that maybe I don’t have dementia…. Hahaha, but then there it is, forgotten words, names, places. The forgotten medications, meals, where I am going or why. I have become good if not great at using alternate words or phrases or sentences when word finding is difficult, most would not even be aware that I am doing it. Actually many with dementia are good at make things work, it means less stress on ourselves, better quality of life for ourselves.
My vascular and other complex health challenges and by the way did those cause the dementia or the dementia play a role in them? Does any of it really matter?
What really matter is that people start to understand that every person with dementia needs to be treated individually, because everyone of us comes with our own complex issues that require different elements of care, understanding . It requires people from Doctors to health care professionals to the general public to be open to learning each individuals needs and be willing to learn from the person with the lived experience. Too have an understanding or at least the willingness to learn about the people living with dementia who are in their care, or in their circle. I am blessed with a great team in a failing system, I am grateful for their willingness to listen, to help me continue to have the best quality of life as possible.
They are also helping me through a difficult time that leaves me physically, mentally and emotionally fatigued and fragile, all of which impact all aspects of my health, including my dementia.
So speak about your good days and bad days, don’t be afraid to tell your story, it’s all part of helping others gain a better understanding.