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.
Not.
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?
Dear Pia,
No doubt the whole situation with Terri is complicated. Your experience with your father sounds very powerful, soulful, and very salient to Schiavo’s case.
Near as I can tell, the world should butt out of the case and let Terri’s family make the difficult decisions. That the courts had to sound in is bad enough. Now the whole of America’s Congress came together in a special (and expensive) Sunday session to weigh in.
In the end, a person’s opinion on the matter is personal, but not relevant to the Schiavo’s.
It is time to stop using the poor woman as a political football to get your point across and your congressional representatives reelected.
Greive if you must, but let her family decide.
P.S. I reread my last comment and want to point out I was not speaking directly to you Pia, but to the reichwingers asserting that there is only one course of action in this matter. Sorry to tangle up two comment spots here, but I wanted to be sure to let you know I am not pointing out anything negative about your post, but responding directly to the tenor of many reichwing bloggers out there.
I do believe that your post was excellent – and raw as it was, perhaps your best post yet.
thank you for posting your experience
Yes, I also just want to say thank you for posting this.
Great post. Found you via BE and was captivated by this particular post. I have been in the same situation as you. Except my father in law made it easy on us. It’s as if he sensed the torment of the family. He died on his own, before any decision on feeding tubes could have been made. He, also squeezed my hand, as well as my wife’s. We knew he was telling us it was all right to let go. And it was all right for HIM to let go of us and of everything.
This situation is not difficult–despite political efforts. It’s about humanity and dignity and soul and existence and kindness. I hope you are well.
lx
Didn’t mean to mislead, if I did in anyway. My dad died before we made the decision.
I thought he waited until we left to die so that we wouldn’t have to watch.
He was very considerate.
the doctors mentioned it early so that we would have time to think about it.
I was older than 25 then and could understand his need to learn all about death.
I put this in because it shouldn’t be a legal matter but a philosphical, spiritual, and socioligical discussion.
I do believe that the courts have arrived at the only possible answere.
good for you for sharing this. if anyone beats up on you for it – well, they aren’t much of a person.
What a terrible decision.
I posted on the same topic today, although I usually stick to paddling – I wasn’t sure about doing so, don’t like hatemail, but been thinking about it a lot…may try to figure out someplace to link to yours. I was being mostly theoretical (although using a mourning of my own as a basis for that theorizing), but the experience you share here is exactly the way I could see letting go being better for the whole family, even the ones who don’t want to.
so sad.
My condolances for your loss, and I hope this year will be better than the last.
As to Shiavo, I’m not really leaning one way or the other in the battle. What I do know is that Bush has no right to tell her husband what to do.
What ever happened to the principles of democracy where people can make their own decisions? This is just another example of the way Bush is trying to usurp power for himself – first the Patriot Act, then the war, then his bigotry against gays, and now this case.
It’s a shame.
-Steve
Games are for Children
My father took that decision away from us as well. The morning that I was going to get his statement from the safety deposit box and my power of attorney over everything including his medical care, my father passed on his own.
Terri’s case has become a sad comment on the lengths politicans will go to to further their careers. This is a case that should have been left between the family and the court system.
Pia, thanks for sharing your story. It takes a lot of courage.
You write very well! Few people write so well. I believe it is very important for people to make their wishes known IN WRITING USING LEGAL FORMS when it comes to their own decision making about feeding tubes, etc. God forbid, please, there could come a day when this document is necesary to specifically and unequivocally makes your wishes known. People need to understand the importance of a living will. The Schiavo case and many other cases have underscored my point. I also offer you my sincerest condolences about your Dad. I wish you the best and I will continue to read your blog! Take care, Matthew in NYC
Beautiful post. I have never met you, but I am a regular to your blog, and through your blog I feel like I know you.
What you have said is moving, and sheds light on a subject that is bounced around through the news. This topic is personal, and deals only with the family. That is where it belongs.
Your post should show to people how difficult, and how personal of a decision it is.
Thank you very much.
-Lord Smert (LordSmert.Blogspot.com)
Your last question is the one I will address. 15 years ago you couldn’t get a whole host of diagnostic tools, drug therapy and procedures that exist as commonplace today. Each day that goes by with your heart beating is another chance of a miracle of science or faith making a change that you could not dream of before that day.
Where there is life there is hope. In this particular case the facts were muddied enough by the main stream media that people were compelled to act so congress acted also.
The result will be the same. The only difference is that now everyone can go home and accept the hurt they feel for this poor woman and the ordeal of starvation she must face. They can go home knowing they did everything they could do, to do what they thought was right.
The only difference now is that we all get to feel her parents pain and her husband will be marked for all time as the heartless person sleeping with another woman while trying to get his wifes execution okayed by the state.
Its all very tragic…
Hi-came from BE too.
My father’s situation was similar to yours.
After he collapsed at home, my mother’s first instinct was to call 911. Of course. What we found out later was that if you do that, they are (of course) required to revive the person if possible. This, after quite some time, they were able to do.
Seven hours later, after he was ‘stabilized,’ out of the ER and up in Intensive Care, hooked up to a respirator and who knows what else, it took no time at all for us to reach the decision to unhook him. He had made his wishes well known over the years. I know we did the right thing.
I prefer to think he died at home, in his favorite chair.
By the way, we are Catholic and he died at a Catholic hospital.
Thank you for that post. Sixteen years ago this week my mother had to decide whether to let my father go. She asked the question you asked. Is existing living? Knowing my father better than anyone, she said no. We all supported her decision. I’m sure my father did as well.
For the record, we are Catholic.
I’m so sorry your family had to go through this. Your post was level-headed and beautiful.
I don’t understand why anyone would *want* to be kept alive under such circumstances…prolonging grief, draining money and resources and putting an unbelievable strain on family.
The best thing about the Schiavo case is that it opens up the discussion of living wills and DNRs. It’s so important to talk about this with your family.
Thanks for sharing your very personal story.
I guess this has brought out a lot of feelings and memories for us all. I just finished posting about my father’s death.
I can tell how close your were and are to your father. It’s still painful, eh? Me, too.
Hi Pia, I’m a very new blogger and here from Blog Explosion for the first time. Your site drew me in like a magnet, but your post with its icy chill of death and raw truth as only you, who lived it could portray, ravaged my insides.
I can barely type through my tears. I hope your powerful writing, penned with deep love and acute loss, is cathartic. It sounds like you miss him like it was yesterday.
I was told the ache abates with time. No, it changes form, but it doesn’t abate, at least not for me.
To merely exist, is not to live. It’s like an eggshell without life pulsing inside of it. I’ll be thinking of you on Sat and the following week during Passover. Intersting how both holy days use the egg to represent life, not existence. I hope you are wrapped in loving arms while your away.
Lady in R3D ~~8^)
Pia,
Thank you for your personal perspective. No one can and should judge or interject their views on this subject unless they have lived through it. I applaud your post and your conscious effort not to take a side.
God bless.
I want to join the chorus of thank yous. Obviously, this is a difficult topic on a number of levels, and perspective like this is hard to come by.
Thank you.
Hi
What a painful blog to write, thank you. I agree with you completely, if the brain is dead the person is gone, irrespective of what science can do to maintain the body.
Like many you miss the point of the big noise about the Schiavo case – the accusations and affidavits from Doctors and care nurses that Terri is not in a PVS at all, even the neurologist hired by the DCF came to that conclusion last week.
How can a family come to terms with their child’s state when one doctor is saying brain scans show hydrocephalus and alien items left in the brain, a nurse who cared for her is saying Michael was injecting his wife with insulin to induce coma and more than one nurse is sayng Terri could swallow soft foods, but Michael wouldnt allow it?
Its a horrible mess on top of a horrible mess.
A MOST EXCELLENT POST!
Thanks for posting your experience, Pia…I know it had to be painful to do it but it means a lot. I think what Schiavo’s parents are doing is misguided and selfish.
If they were REALLY religious, wouldn’t they think it better for her to “be with God”? That’s the part I really don’t get.
knowing me a bit, I bet you can guess that I agree with you.
I can sympathize with your story too. My father had a stroke at the age of 38, it was not massive but dehibilitating nonetheless. He died in his sleep at 45, the night before a planned kidney operation and he had made it clear to me that if he didn’t have control over his body he wouldn’t want to “exist” with the aid of medical technology. It’s hard for me to understand why those who don’t believe in “pulling the plug” say that it goes against God’s plan. 50 years ago Teri would have been dead already, it’s not natural that she is living like she is, it’s modern technology that’s keeping her alive now. I’m going to be blogging on this topic myself soon…
I appreciate your introspective comments on this subject. This is the first blog i have ever read, and have ever responded to. As difficult as this subjet is, it could be even worse! My step mother passed away in June of 2001. She had liver failure, and unfortunately, was not able to maintain good enough health to outlast the wait for a transplant. My families decision was made more compounded by the fact that she was NOT brain dead, but was in a vegetative state. After much soul searching, my father called for a family meeting, and we all agreed that removing her off of the respirator was the humane thing to do. she could have lingered on for several more weeks or months in a coma if we had kept her on the respirator, but she would not have wanted to be left in such pitiful shape. after our consultation with the doctor to let him know our families decision, the care personel at the hospital removed the respirator and asked us if they could inject morphine to ease any pain she felt. we all said yes and held every part of her until she passed away. in the end we were all thankful to be there with her and to know that she had dignity in her natural death.
Science has grown to the point that it can do miraculous things with the human body. The one thing i have realized is that just because you can do something with technology, doesn’t mean you should.
thanks again for your blog,
sincerely,
robert