Wednesday, February 23, 2011

Interesting Read about End of Life and Hospice

Go here to read:  Death Channels
Zombie is an interesting writer with a variety of interests.  What originally drew me to his site were photo collections of zany left wing protests on the left coast.  (He, I believe, posted the hilarious photo of two women holding a sign saying: Lesbians Against Bush.  Still cracks me up.) 
Anyway, over the last couple of years he has posted several thoughtful articles on a variety of topics and this one is his best.  I read several of the comments and was struck by their generally thoughtful tone. Clearly the article resonated with his readers.  As a result I decided to record my story.
Father had an accident at the end of June three years ago.  He and mother were delivering donated furniture to church for a mission of some sort.  Father, instead of rolling the dolly to a ramp on the sidewalk simply started pulling it up over the curb, lost his grip and fell backwards.  He struck the back of his head on the edge of a brick border.  I will skip all of the details, but a few hours later father was in the hospital with another brain injury.  Yes, this was his second brain injury within a couple of years.  The first was from a bicycle accident and the medication he was on from that injury probably contributed to the severity of the second.  In any event it was as if father had a stroke and it was serious. 
Sister called and I flew back to the Dark and Bloody Ground.  Upon arrival I learned it was very serious and it was getting worse daily.  Over the period of a month or so father communicated less and less and was losing an already limited ability to communicate.  He didn’t know where he was most of the time.  He didn’t know his family.  He, well, was going.
The doctors held out little hope and at the end July we decided to take him home.  The state provided a hospital bed, provided a little nursing support and sent the home hospice worker to visit.
Unlike Zombie I was not with my father for that whole period of time.  I went back to Colorado once or twice for a week or so and the burden of dealing with the day to day fell onto my sister.  She did a wonderful job, as is her normal standard.  While in Colorado I spoke with a priest about father, hospice care and father’s living will.  The good Father advised me to be careful and guard against undue influence by any hospice workers.  He said, “Their job is to make the person comfortable as they die and in many cases their actions speed death.  Speeding death is against Catholic teaching.”   I said to him, “Mother is adamant that she and father do not want any life supporting care including artificial feeding or hydration.  That seems so wrong to me and I can’t imagine a much worse way to die.  Even drowning is over in five minutes.”  The good Father said, “That is right and you must talk your mother and sister out of this course of action.”
So when I returned to the Dark and Bloody Ground, we talked about it. Mother remained adamant that there should be no artificial feeding or hydration.  I noted how painful that would be. I asked did she really want her husband of 50 plus years to die from dehydration in her living room. (Which is where we set up the  hospital bed.)  I don’t think mother wanted to think about that so she stuck to the position without talking about the differences between father’s current state (which had some chance of recovery) and a true vegetative state and what extraordinary measures truly means versus basic decency.  I don’t blame her.  She was facing a great deal of stress and unknowns.  Sister was, as I recall, more ambivalent about it.  She was bothered about what we talking about, but she wanted to abide by her parents’ wishes and she, unlike me, lived there.  So whatever decision was made would affect her on a day to day basis unlike me, who at some point would leave.
There are points I should make for clarity.  My parents and sister are Baptist. I am Roman Catholic.  We are all deeply religious.  Kentucky had what I thought were remarkable incentives to get a patient out of the hospital and into the home in situations like this.  Incentives which I didn’t view as any sort of “dumping” but rather sound economic decisions.  Parents had a good Medicare Plus type policy.  Sister and I have done well in life. Sister and brother in law because of their business had strong relationships with many doctors in town.  Mother and father always managed their finances soundly.  Sister and I had rather full family and professional lives.  While I did not spend enough time in the D&B during this period I spent more time there than I had in years.  If father could perform basic tasks such as sitting up for ten minutes without falling asleep he could get in home rehab and if he improved a bit from that he could get into a rehabilitation facility.
The home hospice worker terrified me.  I understand she was simply doing her job, but she could talk of withholding fluids, withholding food, death, drugs in such a matter of fact manner it was terrifying. She used terms and language that my Colorado Father had warned me against.  Though she certainly deserves a better description, I can’t help but think of her as the Angel of Death assigned to speed my father out of this life.  Again, I know that is harsh, but still it was my father she talked about.  The man who always helped others, who was always clean and tidy (even after a day working on the farm or at the plant) the man who loved my mother, loved his children, loved his grandchildren and the man who was grateful for God’s grace every single day.  Here she was, in my mother and father’s home talking about helping him die. (Though it wasn’t said that way.) 
To say I was deeply conflicted and pained by the situation is a gross understatement and  I resolved it would not end this way.  My father would not die of dehydration in his own home.  He would not be starved to death in his own home.  How I would prevent this I did not know.  I certainly did not want to hurt my mother or damage the relationship with my sister.  I certainly did not want to be his sole care taker.  I certainly did not want to transport him to Colorado, but knew I would if that is what it took.  I did not want to make any decision without the support of my family nor did I, in a legal sense, have the right to make a decision.  That right belonged to mother and my sister through her power of attorney.
I also decided that if we got to the point where he was dying of dehydration and starving I would smoother him with a pillow.  If I could bear the pain and sin of him being killed slowly, surely I could bear the pain and sin of making his death swift. 
Then I remembered that he only has to sit up in a chair and be alert for 30 minutes to qualify for           in-home rehab. Which might, and I stress might, pave the way to get him into a rehab facility which might, just might, get him back to living at home and enjoying some of life’s joys.
So one brutally hot August afternoon I was alone with father.  I sat on the bed and asked, “Do you want to get better?  Do you want to die or do you want to live?”  The only answer I got was a moan and maybe a grunt in response to the first question.  So I said, “Well, getting better starts right now.  I am going to get you up out of that bed and into that chair.” I grabbed hold of his shoulders and pulled him up. I swung his legs over the edge of the bed. I said,” I am not as strong as I once was so you must help.” Then I sort of bear hugged him and lifted him up out of the bed. As I was carrying and dragging him to the chair I looked into his eyes.  In his eyes I saw something. What I saw was terror. Against whatever sense of self and awareness  he still had, he was being carried from the bed, not gently mind you, across the room to a chair. I got him into the chair and propped him up. Almost immediately his eyes cleared a bit, his head moved up and he looked at me.  Not towards me, but at me and he smiled a bit.
Mother and sister came home and were shocked.  Father had improved a little bit ( I think of it as the fog clearing a bit) and did they make a fuse over him.  After awhile he nodded off and I half dragged and half carried him back to the bed.  During this trip he moaned and whined a bit which I took as an encouraging sign.  As he lay back in bed, I looked at him and said, “We are going to do that twice a day until you can get into rehab.”  His eyes looked at me, right at me, and again there was terror.
So we did that for two or three or four days, I forget how long and believe it or not he got better every day.  Now I don’t mean that he was coherent for any length of time or that he helped me move him, but you could see he was more alert. He was more alive.  Most importantly he was sitting in the chair for the proscribed period of time.  Third or fourth day he complained I was hurting him.  He started protesting.  He told me to stop. When that happened I knew we had a chance to get him back and eventually we did.
Father went into rehab and a few months later he came home to a new home because mother and sister sold the house and bought a small townhouse. ( And there aren’t many townhomes in that part of the state.) He wasn’t great when he got home, but he was alive and with lots of love and additional rehab he is fully alert some of the day every day.  Although he can walk a bit with support and a cane, he gets around in a chair. Getting the ongoing medication right has been troublesome. He sleeps a lot and his memory is fading, though at times he remembers everything.  He still loves his family and is kind and thoughtful and his family still loves him. He says Grace before every meal.
We are blessed that he is still with us and he is blessed to be with us. 
Maybe some of the facts are not exactly right and maybe the timeline is off a bit.  This was a hectic time after all.  Would I have done any of the things I thought about?  Yes, I would.  Would I have done all of them?  Probably not.  Which ones?  Don’t know.  He got better.

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