According to the US Centers for Disease Control and Prevention, 90 per cent of people over the age of 65 will die from one of six chronic illnesses: heart failure, cancer, lung disease, stroke, dementia and diabetes. In the wake of an ongoing government shutdown over an ineffective border wall and the President’s $5 trillion tax cut for the wealthy, almost nothing has been allocated for any the six pivotal illnesses.
Over the Christmas holiday, a friend was visiting her native land. It was Christmas Eve here when I received a call. My friend exhibited strange mood swings, purposely instigated an argument with her sister on her sister’s birthday and ripped into her father on Christmas Day. Then, there was the constant worry over children, world events and a sense of dread for the future.
Many incorrectly perceived it to be jet lag. No one understood what I’ve long suspected. Dementia! That word. That ugly beast.
Unfortunately, none of her family really understood what was happening. And truth be told, there is no one in the medical community who can help guide family, friends and partners through the day-in, day-out aspects of helping to guide one through dementia. There is no one who’s willing to say, “Your relative has dementia and here’s what’s going to happen – step by step – over the next few years.”
Living constituents of life always look for the disease. Got to name that bastard. I am living proof that the name is of little comfort. In most cases, when you’re in the throes of battle, it’s fucking irrelevant. In the end, it’s about living. It’s about how to carry on a meaningful life in spite of the affliction.
Even when there is a diagnosis, like so many others, we often fall into the trap of remembering the person who was rather than the person who is. When we realize it, only then do we begin to understand we’re looking for someone who’s no longer there. When my father was in ICU, lay in a coma, all my mother wished for was that my father return home. “Be careful of what you wish for.” Miracles rarely occur. And, just as predicted, my father’s dementia increased significantly from even a year prior.
Just as the daughter of my friend’s family had known, the father my family had known is gone. There’s only the person who is.
Most never come to grips with the terminal nature of our lives. We simply believe we’ll always be the person we were. Simply put, take nothing for granted. In the end, functional limitations force one to adapt. Personally, I can no longer run. I can barely kneel on my right leg for that matter. I can’t play any contact sport. Football is relegated to Sunday television. Some days, I sport a Forcemech wheelchair.
We have to adapt. All of us, in his or her own way. Yet few understand the level of ineptness our society is at caring for patients suffering from heart failure, cancer, lung disease, stroke, dementia and diabetes. Our health care system is based upon diagnosis and treatment. However, what can be done when no medication or treatment can be performed?
We fall through the cracks.
I look at my parent’s road as well as the road of my friend and wonder, “How will I face the final phase of life?” The best answer I get is ‘unknowable.’ I certainly don’t want to be a burden, yet I want to be affirmed. I want death to be appropriate in time and place.
Unless we change how we’re going to care for the afflicted, I too, will be one of many falling through the cracks.