My dad had always been a big believer in talking about death, dying and other unpleasant subjects. When I was 25, in 1976, he thought that a great father/daughter activity would be taking Elizabeth Kubler-Ross’s course on death and dying at The New School.
I might have considered taking another class with my father, but that one sounded morbid to me. Also The New School was a great place to meet guys, and being seen with my dad, would have been a definite impediment. We compromised; I agreed to go out to dinner with him every week, take another class and go to one of Kubler-Ross’s with him.
My dad believed in talking about death, dying and all other unpleasant subjects. Later we would have family drills in what to do in case of his death.
Fourteen years ago this month, my father suffered a massive stroke on Tuesday March 26. My mom wanted life to go on as normal. She couldn’t accept that my dad wasn’t cognizant. I guess I couldn’t either.
She asked me not to come to the hospital that night. I worked for Social Security then, and listened to my mother. The next day I went to work and wondered why I was there.
After work, I went to the hospital on Long Island. My mom was strongly holding onto the belief that this was just a minor stroke and he would soon be cognizant.
My dad was 77. He was an athlete, a practicing CPA, and had always been in excellent health. The doctors told me that he was in a persistent vegetative state.
But he took my hand, and held it. I refused to believe that he wasn’t cognizant; this wasn’t one of the better hospitals on the Island but a HIP hospital close to my parents home.
They wouldn’t let my family bring in outside doctors. I can be very persuasive when I need to be. My father had resources as did my mom, sister and me. We would have spent anything to keep my father alive and to get him into rehab.
Every doctor agreed that he was in a persistent vegetative state. My mom, sister and I refused to give up hope.
That Friday, Good Friday, and Erev Passover, they told us that there was nothing that they could do. We were told that we had to begin thinking about putting in a permanent feeding tube. I knew almost nothing about feeding tubes then, and even less about persistent vegetative states. My mom wanted one put in immediately. For the first time I overrode her.
Yes we live in New York and have access to leading specialists. I’m not going to apologize for that. My sister and I talked to the doctors and began to make our peace with my father’s dying. My mom didn’t.
We spent the first night of Passover eating left-over diner chicken in my parents dining room table. My mom was still talking about what would happen when my father woke up. It was difficult not to want to agree with her.
On Sunday, doctors were fluttering around all day. It was Easter Sunday, Passover, a holiday week and that wasn’t a good sign. My dad’s breathing was shallow. I would later learn it was the kind of breathing that Native Americans associate with the soul leaving the body.
We stayed until late. Even my mom began to become resigned to his dying–just a little. My dad was a very proud man; somehow we felt that he wouldn’t die until we left. Within a half hour after we left, he died.
Later my mom would tell me how glad she was that she listened to me. He was in good health; he could have lived like that for a long time. 77 isn’t really that old, when a person has never smoked, kept in shape and had certain other factors that my dad had.
In my family when we don’t understand something we research it or take classes. I went one step further. Two and a half years later I went back to school to get a Masters in Social Work. I asked for my field placement to be at a certain Irish Catholic nursing home, and told everybody that it was to explore my Irish-birth roots.
Catholics are pro-life, in the anti pro-choice sense. This doesn’t mean that they want to keep people alive at any cost. Far from it. As I said this is a personal essay and I’m not going to talk about all that I learned in my two years as a student there, and when I was a paid social worker at the home.
But I know a lot about Advanced Directives, end of life procedures, why IVs filled with water and antibiotics can be dangerous–a person can drown in her own fluids.
It’s very easy to put a feeding tube in. It’s never easy to take one out, and I won’t go into all the reasons why–aside from the obvious, Terri Schiavo, who has existed because of one for the past fifteen years.
I would counsel families on end of life procedures. Even in the best of circumstances (a family in agreement, which was rare) it was never easy. I would never tell a family what to do. That decision was never mine to make. But under New York State law, I had to explain DNR’s, and Health Care Proxies. I made a package, of articles, that was then used by the other social workers on the different options available, and how each option might affect the patient.
I can’t imagine what it’s like to out live a child. Kinehora, that nobody I knows ever goes through that.
I don’t know if the courts have come to a decision yet.
I’m far from home on vacation. This is never an easy time of year for me.
I was just going to put in light little fluff type pieces in Courting, when I got around to it. But this is too important, too personal.
I can’t imagine what Terri Schiavo’s family is going through. I only know for sure what my family felt. I know what the families told me.
As much as Ms. Schiavo’s family wants to believe that she can comprehend them, its virtually impossible.
Reflex actions are a wonderful and horrible thing. They give you hope when there isn’t any.
Please, if you’ve never discussed this with your family, discuss what you want if something was to happen to you. Make your parents talk about.
DNR’s and Health Care Proxy’s are easily found on the Internet. Fill them out. Make sure that in your Health Care Proxy you write “no artificial hydration or nutrition,” if you want to die when your brain virtually stops functioning.
This is a personal essay. For more scholarly posts please go toBring it on!
I debated turning the comments off. I won’t for now. I’m not going to be moderating them or answering for awhile, probably, I am on vacation. But I couldn’t stop thinking about this. I had to write it. For me, if for nobody else.
I will add that anybody who believes that ending life by taking a feeding tube out, and not giving artificial hydration, has never been involved in a Catholic long term care facility or hospital in the New York metro area.
I’m not editing this; not rereading it. I’m putting it out there.
I’m trying hard not to keep my political feelings in this. They become intertwined, and do to anybody who has ever been in this situation or worked in any facility where people die.
For a more political view:
I will ask if you believe that existing is living?