The caregiver's vigil, thoughts at the end
The caregiver's role for most is a date with the inevitable. This is a special burden that anyone who has not done it cannot really wrap their minds around. There is an odd relationship that develops between a person who knows that death is nearby and a loved one who accepts the role of helper in the vigil. Even if unspoken or acknowledged there is a link quite unlike any that one has in everyday life. Regardless of the circumstances there is a unique relationship between the main character and the watcher in this very human drama.
Most of the time we think little about our own death. For most of our lives we see it as being some far future which we don't dwell upon. Being a player in the drama forces an awareness of our own mortality upon us which I suspect never really goes away.
My mother passed away a few days ago and I find that my mind seems to have a mind of its own as memories of happier times rise unbidden and somehow get stuck in my eyes making them blurry.
We live with change every day and we hear of the death of people we know and love throughout our lives but the act of participating changes you. For the better I am hoping as I don't wish to go through the rest of my life with a rogue mind but if you ever are faced with the decision of whether to be a caregiver or not, do it if you can. As hard as it is you will be better for it.
To be or not to be, that is the question -- would you help your loved one die?
I never thought much about terminal illness and the morality of assisted suicide in the first 70 plus years of my life but aging brings with it the unbidden concerns of end of life care. Modern medicine has given us the ability to extend life far beyond what our ancestors of even a handful of generations ago imagined was even possible. That medical miracle exposes a deeper question of the difference between life and living.
I’m old enough and I also do have cirrhosis, a frequently terminal illness, so time and tides force me to consider the end of life as a real thing. I remember well as a young person the feeling that old age was so far away as to be only a curiosity. I’m reminded of thinking that 60 years old was ancient and not comprehensible to me. I looked with some discomfort on old people. I remember thinking that my grandmother was impossibly old and though I loved her truly she seemed like an odd creature with her wrinkles and infirmities. There was a moment of clarity in my adult life when I realized that my Grandmother was in her 50’s when I had those feelings as a child.
Read moreReflections on a Pale Horse – the caregiver dilemma
I find myself recalling the New Testament imagery of death as the rider of the pale horse. Those thoughts have come recently when I reflect on being a caregiver for a terminal patient. I’ve seen others, my mother in particular, do it for loved ones without really understanding the price they paid. I never internalized what it actually means to stand as the last guardian of a valued life as the pale horse of death comes ever closer.
With modern medicine dying may be less painful than in ages past but it is much longer. The results of our technology have outpaced our ability to bear the burden of end stage disease in a humane way. The result is that we have a crisis of care for terminally ill patients.
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