Dying is so much more than “a medical event”.

Dying is a life event that we all will experience at some time. Each death is as unique as each birth. For all involved, it is a time for exchanging love, for reconciliations, and for transformation. The dying person’s loved ones can become compassionate companions during the experience and can help the dying person through this remarkable journey.

In the last month I have experienced the deaths of two loved ones. One suffered a brain aneurism and was placed on life support for several days while family struggled with organ donation protocol and “making sure” there was no hope for recovery. This “making sure” consisted of very long days, nights, lots of medical intervention, tests and finally the organ donation team being called in. This was an incredible time for me. I, of course, had lots of questions and concerns that never were addressed adequately enough in my mind. After all was said and done I had struggled with “What was really going on in the ICU? What does donating your organs mean?” I once again updated my last wishes after thoroughly examining this situation, learning more about what I do and do not want should this become my demise.

Also, my sweet client passed away this last week. He was an 88-year old man living in a “memory care” facility that I soon labeled “the little shop of horrors”. For the several months I observed the goings on in this “skilled living community”. I felt helpless to intervene and became scared to death should I ever find myself placed in one. Reiterating again to my husband and children “Never ever do this to me or put me in a place like this”, and again promising, “Don’t worry mom, we won’t”. I’m still haunted by the imagery. Don’t get me wrong, I am not naive about these places and have volunteered in many over the years, but what in the world are we doing with our elderly? Who is really in charge of what goes on in these places? To be fair, I was only present during dinner hour, but some of what I saw and experienced was unacceptable.  Each time I saw a family leaving behind their loved one I wanted to cry out, “You really don’t want to leave them here”. Call me sensitive? I was beginning to believe I was the only one that still was.

If not for this man’s daughter’s constant vigilance regarding his care, he was ignored and forgotten, probably because his ability to communicate was very limited and frankly he didn’t complain…he didn’t need much interaction with the overworked and underpaid caregivers. It was too easy to tuck him in a corner somewhere. I listened on a regular basis to some very unhappy “Please get me out of here. I just want to go home!” Most of the residents seemed unheard even with the smallest request and truly felt forgotten by family and friends.

I was not present when my client took his last breath. I was there just a few days before, watching his daughter’s vane attempts to communicate with the powers that be. Just to get answers, help with simple things like turning him or removing mucus from his throat, anything to make her father comfortable. The effort it took her was shocking.  Suddenly it seemed he became an untouchable. Most just stared at him, shaking their heads it is as if the staff became zombies. There was one caregiver on staff that showed us how to keep his lips moist in attempt to keep him hydrated. Wasn’t this what the nurse on staff was there for? The first hospice that showed up was there to bathe him. I asked her how she was going to do this with him curled in a fetal position and in pain. Was she aware of the changes being made regarding his care in general? She said no and that she would be back. She didn’t return. Another hospice representative came to determine if he qualified for 24-hour care. She said she would be back tomorrow. Really? Hospice totally failed this man and his family in my eyes. The period of waiting for intervention and help from hospice took too long. If it were me, way too long. The lines of communication were broken. Hello! Anyone else see how crazy this is?

As I write this blog, I’m reminded of how pitiful the care is for the elderly population in our country. The last stage of our lives should be one filled with dignity, respect and honor. Nothing less accepted. I am certain that only by establishing control through written directives, planning ahead and making your wishes known can you be assured that you will experience a peaceful ending to your last chapters and perhaps in your active dying process. As my client slowly became incapacitated, he could not longer express what he was wanting or needing. He was at the mercy of “the system”. I’m struggling to understand it all. What I can do to make a difference? Can I? Will it ever change? I am on a quest to find a facility that runs well. Is there such a thing? Something is missing, a link in the chain. This is part of my calling and desire to advocate on the behalf of the dying and their loved ones. End of life guides are needed to assist and support hospice and any others that may be part of a dying persons team. This should be made available to all of us.  Working to fill in the gaps that can no doubt happen.

I will close with an excerpt from the book written by Daniel R. Tobin, M.D.  “The process of peaceful dying begins with your decision to take responsibility for your care and for how the rest of your life will play out. You can start to master your fears and your sense of powerlessness by insisting that all important decisions governing the rest of your life be made by you. Everyone dies, but your dying process is unique to you.  You have your own physical, psychological, and spiritual needs. Only you can determine what will provide you with peace of mind.You not only have that right, but you must also take responsibility for creating the events of your dying.”



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