The other day I was talking with a friend who is struggling with making decision about care for his aging mother. His mom is no longer capable of living alone nor is she able to make financial decision for herself. I causally mentioned how difficult it is to walk the end of life journey with an aging parent. Later as I thought about our conversation, I wondered if my friend realized this was the path he was on and if I had been too forward in using that phrase.
I use the phrase "end of life journey" differently than hospice and the medical profession. For the medical world, the end of life journey is a period of active dying and is tied to a specific physical process. I define the end of life journey as the period of time after a life altering physical or mental event that changes the trajectory of life in the elderly. I will give you two examples. My father suffered a sudden death episode that only 15% of people survive. He lived three years after this event. My mother fell and broke her right ankle and left wrist. She lived four years after this fall. In both cases, no matter how hard they tried; they never resumed life as it was lived before their health crisis. My father spent the remaining years of his life in and out of the hospital and doctor's offices believing that it was only a matter of time before he would be on the golf course again.
Frankly, our entire family believed it was going to be just a "matter of time" before my father was back to "normal". We could not imagine him any other way. Because of my mother's personality, the family wasn't quite as convinced that she would return to her "previous life" but we never saw it as the beginning of her end of life journey.
It was only after they died that it became clear when their end of life journey began and that was also when the pangs of guilt began in me. I started with the "if, only" thoughts. If only I had been more patient, available or educated about the aging process, I could have been more supportive during this time. In retrospect three or four years didn't seem to be a long time to defer my life to my aging parent. But here's the fallacy to that kind of thinking. You don't know this is the end nor would you want to know. My parent's needed their dignity and independence for as long as they could maintain it. I supplied the amount of help and support they needed at the time, no more, no less. Mom and Dad didn't need me hovering around the periphery of their life on deathwatch.
I have come to think of ones end of life journey as the same as playing jazz music. Playing jazz with a group of musician requires each musician to be willing to improvise and at times spontaneously create a new riff. At other times you may repeat cycles of cord changes or maybe end up in a whole new direction you didn't anticipate. Sometimes the music is brilliant and at others not so brilliant. To me ones end of life journey is the same. The people who walk that journey with his or her parents must be willing to improvise, spontaneously create new riffs and even repeat cycles of behaviors. But in the end, leave the guilt at the door. A musician doesn't feel guilt if he or she didn't think of a particular riff at the time of a jazz sesson and neither should we.
Week 2: The Desire for Perfection