Turning Toward the Light
Gentle Insights for Those Giving Care at the End of Life
Published By Jonathan Taylor with Lisa Rowan at smashwords.com
DISCLAIMER: While our intent in writing these books is to offer our readers ideas on improving the interactions between care givers and recipients, and while these ideas worked well for us, nothing in these books is intended to be medical or legal advice, psychotherapy of any kind or professionally rendered guidance. We leave that to licensed professionals.
Copyright 2011, All Rights Reserved
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Cover photograph by Miriam Haugen, at http://www.haugensgalleri.com/
Dedication
To Lisa's mother, Lillian Johanson, who saved Lisa's life as a baby so that I could marry her later. For her strength and courage in the face of a challenging upbringing, for her willingness to overcome her original pain and model strength of spirit for her daughter, I will be eternally grateful.
Acknowledgments
We want to thank Suzanne and Evan, children of our heart, whose support and assistance made many of our caregiving experiences better for their participation. And to their children, who have learned tolerance and patience as a result. The caregiver's mission represents a truckload of work for everyone involved, and having support from my adult children made what might have been a very difficult decade a lot easier. To see their children carry on the mission is satisfying beyond words.
Hazel and Thom Ritter, Jon's mother and step-dad, have also blessed us with support and assistance without which we would have been hard-pressed to survive. The burdens of family caregiving are managed best by sharing them with any family member who will take on the load.
To our many other family and surrogate family members, whose love and support has made our lives better in a million ways, we also offer our eternal gratitude.
Introduction
Like most people, I stumbled into the realities of family caregiving when the need arose for someone I loved. Looking back, I wonder if I'd have agreed to do it if I had known just how much work and stress was involved in the ugly end of the process.
Then again, there's the wonderful end of the process, and that has to be given its due weight as well. The 16 years I've spent with Lisa have taught me things about myself that I couldn't have learned without her. But the most surprising thing about family caregiving was the array of lessons and gifts that came my way as Lisa's mother reached the end of her life.
Most Americans are raised to love birth and hate death as if one has nothing to do with the other. Having watched my father die of cancer in 1993 and Lisa's mother in 2009, having seen the way each of them prepared themselves for the approaching transition, I learned things that changed the way I see my own death.
In these pages, I want to share with my readers some of the thoughts, insights, emotions and situations that arose around the topic of death. Protecting someone's quality of life as they lay dying seems paradoxical when viewed superficially, but it's not. And we who participate can't view this process superficially.
Anyone who can put aside their pain and deal, day after day, with the needs of a dying disabled loved one, will be forced to either harden their heart or open their heart to a new way of looking at love, care, death, pain and healing.
Chapter 1: Some lessons take a lifetime to learn
When Lisa told me about her first experience with a loved one's passing, it clarified for me many of her attitudes toward death that didn't make sense until then. Understanding her perspective helped me to get a clearer grasp of my own attitudes, so that I could offer her a less painful way of seeing the natural miracle we call death.
When Lisa was three, her maternal grandmother died, breathing her last as every living member of the family stood around and cried. For some reason, the family rushed Lisa away from the bedside at the last minute, as if to protect her from whatever damage witnessing a death might cause.
The weirdness of it all caused Lisa and her mother Lil to have their first conversation about death. "Mommy, when are you going to die?" it began. It was pretty heavy stuff for a three-year-old, but the disabled learn early to tackle their challenges head-on.
Because of a family history of premature death from neurological problems dating back for generations, death was a base worth covering. Lisa's grandmother had hung on to the bitter end, suffering endlessly until every effort to postpone her death had been exhausted. Lil promised that her own death would be quicker, quieter, cleaner and easier to deal with, since Lisa might need to help. At the time, neither of them knew what all would be involved under the heading of “help.”
Over the first five years that I dealt with these two ladies, they rarely mentioned death in my presence, but I suspected and they knew that it would serve to terminate Lil's residency with us. We were all correct about that.
As I look back now, there were signs that Lil's health was moving slowly downhill, and I couldn't say whether we were pretending it wasn't, ignoring it or in denial about it. Perhaps we were simply dealing with immediate needs first. Each day we just did whatever we could to make life the best it could be for each of us. Personally, I tried not to think about it, and I avoided mentioning her mother's mortality until Lisa brought it up.
For nine years, the three of us fought two battles; one against Lil's deteriorating mobility and another against her chronic and increasingly severe pain. Lil learned from her doctors that her condition would deteriorate to a persistent vegetative state eventually, and this she refused to endure; or for that matter, to inflict upon Lisa. Lil's condition took a notable step in 2008 when she lost the ability to stand. A pivot transfer like a thousand others ended halfway through it with Lil collapsed on the floor in frustration and pain, unable to rise.
From that day, we saw our care giving process as an end-of-life assignment. Lil drew a line at drinking coffee. She said, "When I can't hold a cup of coffee anymore, you need to find me a way to check out."
She dropped her first cup involuntarily in June of 2009.
Under Oregon's Death With Dignity law, Lil didn't qualify because the underlying cause of her pain and disability not known to be terminal in six months. After receiving a quiet tip from a local doctor, we found an obscure organization (compassionandchoices.org) that deals with people in Lil's situation. They advised us that Oregon law allows people whose life is so intolerable they wish to end it voluntarily to stop eating and drinking. This can be done under state law for the purpose of bringing about their own death. We live in Oregon. I assume the laws in other states are different.
Among the advantages, Lisa and I would not be criminally liable for allowing her to die; the crime in question is murder in the first.
We made a list of every detail we had to address to accommodate the conditions under which our situation could be brought into compliance with the law. T's were crossed, I's dotted. When Lil returned from the hospital for the last time, she was in constant intolerable pain. The only available escape came from a near-lethal dose of narcotic that produced a deep, stuporous sleep. Thirty seconds after waking, she began to cry, a minute later she was suppressing an urge to scream. And so she declared her intention to die.
We then learned of a big disadvantage. We had to provide 24-hour attendants to sit at bedside to provide food and drink if she changed her mind. Life being so precious to most of us, it seems that most people who attempt to voluntarily starve to death change their minds in mid-process. We had to pay attendants to be with her “just in case” Lil joined the majority and bailed. Lisa and I knew better, given Lil's attitude toward her constant agony and the threat of a persistent a vegetative state.
Among her many imperfections, Lil had always suffered from an inability to make, commit to and follow through on decisions promoting her own personal growth. This dysfunction drove Lisa and I to distraction over the years we supported Lil's independence, and got no better for us when we were her caregivers.
If Lil's incarnation this lifetime occurred exclusively so she could address this issue, she seems to have succeeded. After eight days of drug-suppressed agony in our family room, Lil passed away quietly in July on her own terms, surrounded by those who loved her. Lisa witnessed her passing, and is stronger for having done so.
Chapter 2: Encourage survivors to choose to live
I thank God that I knew what to expect and how to recognize Lisa's natural reaction to her mother's passing. It didn't come as a surprise, or catch me off-guard, or trip me up. Lisa bristled at me early on because she thought I was manipulating her by pointing out her suicidal urges before she had recognized them. That was just the first couple times.
When two people live together long enough, a bond forms between them. This bond can be a powerful force, and a strange thing sometimes happens when one of the people affected by this bond passes away; the other either dies within six months, or lives on for many years.
I came across this piece of trivia decades ago, finding it curious that some people give up on life when their partner dies while others pick up the pieces of their broken heart and move on. Contemplating the mechanics of that live/die decision process was an academic exercise for me until Lisa’s mother Lil passed away in July of 2009.
For six months, I found myself encouraging Lisa every day to think about the things she hasn’t done yet, her dreams-not-yet-come-true, the gestures of love she has yet to give or receive. For it is in these things that she finds reasons not to follow her mother “home.”