Sunday, March 10, 2013

All about me, me, me...

I remember back, almost a year ago now, I sat at my dining room table with three hospice workers from the home health care agency. It was our first meeting and we were setting things up for Riley to be treated as a hospice patient rather than just a stubborn old drunk. I had to sign a paper stating that I understood that no measures would be taken to keep Riley alive. For me, I felt I was signing his death warrant. I hovered over the place where the signature was to be, but had difficulty actually putting the pen to paper.
The hospice worker was very patient. She asked me what was holding me back. We talked about my feelings of failure because I had not been able to get Riley to desire a better life. I told her of my need to see things through to the end. And I told her how tired I was in general.
As we talked I came to understand that my hesitation in signing the paper was really not about Riley, but instead it was about ME – my feelings, my needs, my desires, my failures, my anger, my everything. I also began to understand that I was experiencing a form of de-Je-vu from signing papers for removing life support from my son.

I had heard Riley say over and over that he would rather be dead than sober. I asked him if he was sure that this was what he wanted. The answers he gave were vague and reminded me that he was not being realistic. He said alcohol would not kill him. He said he was not dying and wouldn’t die for another 30 years. It was almost as though he was daring me like a challenge in an Olympic match.
I signed the papers and an overwhelming sense of relief came over me. I broke down in the arms of the hospice worker and cried. I didn’t cry because Riley was dying. I cried because whether he died or it was a relift to know it was no longer my responsibility. I cried for my son. I cried for a life that would never know the true potential of living in sanity. Neither my son, nor my husband would die as the people that I knew they could have been, but rather as an empty shell of what was once so very good.

The next day I set about getting Riley moved to the more convenient bedroom down the hall. It would be an easier access for the workers and EMTs. A hospital bed, cabinets and supply storage, a comfy recliner with a side table and reading light, a bedside potty, these were all the necessities of allowing him to die.
A hot pink notice was placed on my refrigerator door and on the door of Riley’s new bedroom. It stated that if the EMTs were called, they were not to take any heroic measures to preserve Riley’s life. Instead they were to call the hospice hotline and they would immediately send out a worker. The hospice nurses would make Riley comfortable and let him pass to another place.
It was less than 24 hours later when I was told that he was a half point off on his albumin panel and therefore, Medicare would not pay for his hospice treatment. I was on my own again. And only hours after that notification, Riley was calling me from his new bedroom because he wanted me to call the EMT’s. He was having a heart attack.
As I held the phone in my hand, I hesitated. I had a little debate inside my head. Call. Don’t call. Who would know if I didn’t call or if I waited too long to call. There was no one in the house but us. Our nearest neighbor was a ways down the road. No one would know.
There was just one little hitch. I would know. I would not only know but I would have to live with that decision for the rest of my life. I dialed 9-1-1 and went to Riley’s bedside. I would know. My conscious would be haunted. It was all about me and not about Riley at all. I wasn’t as interested in saving Riley as much as I wanted to save myself.
When they loaded him onto the helicopter for his ride to Greenville, I was told he would be there in about 15 minutes. It would take me 2 hours to get there by car. I was tired. I wanted to sleep. The sun was starting to come up and I had only slept for a couple of hours. But, I went home, packed a bag and headed off to the hospital.
In the back of my mind I was thinking, “Someone else is watching over him and caring for him. There’s nothing I can do. Nothing will change by me being at the hospital.” I thought about turning the car around and heading home. The peacefulness of a Riley-free country life was calling to me.
Then I started getting phone calls from the hospital. They needed his history, papers signed, information, etc. and needed to know when I would be there. It was a jolt back to reality. As much as I wanted to only think about myself, I knew that this was really about Riley and not me.
My day would come when I could be self-centered and only consider what was best for me. This was not the day. On this day in May, I would do what Riley needed for me to do. After all, I was being told to call the family and let them know that Riley would never be released from the hospital. It didn’t seem like it would be long before my selfishness could begin.
As all my blog followers know, Riley did survive and is still alive today. So he has won this match of the challenge but the game is still in play.
I realize that if Medicare had not stopped the hospice, Riley would not be here today and I could revel in my self-centeredness. The reality is that there will always be something that will prevent me from being as self-involved as I think I would like to be. There are my grand and great-grand kids, blog followers and group members who will always need me in some way or another. I can’t see myself ever turning my back and saying – “Well… I’m just too busy to help you.”
As much as I would like to think this whole hospice thing was about me wanting my peace and aloneness. It really was about Riley and what he needed. Not so much about what he wanted but what he needed. He needed me to sign those papers because he only had two choices – sobriety or death. He chose death. He let me know on a daily basis that he wanted me to let him go. Let him die.
Was signing the hospice papers about me? Of course it was. Was signing the papers about Riley? Absolutely. It was about both of us. It was giving both of us not just what we wanted, but what we needed. If I had it to do again – and eventually I will have to face the situation again – I would sign on the dotted line. Watching Riley be miserable in this Linda-enforced life of sobriety makes it very clear that this is not the life he wants. He truly does mean it when he says he would rather be dead than sober.


Anonymous said...

From your previous post:
"I’ve been stomping on my soap box for a long time that rehab centers should be required to do some kind of “pro bono” rehabs."

Looks like you are the one doing the "pro bono rehab". And the complaining about it and asking for funds from others to pay for your grandiose scheme to save the world from alcoholism. What you str experiencing as a "caretaker" is what you are asking others to do. So much for pro bono work.

Maybe you could get a job as a television evangelist! They basically beg for money, seem to be living pretty high, and offer nothing in return but magical thinking. They could teach you some better techniques. Jim Baker is back in business. Maybe he would be your mentor.

You don't make any sense. Magical thinking will do that to a person. As Dr. Phil would ask...How's that working for you? Such a fantasy. Hope you find whatever it is that you are looking for. It might be imaginary.

Anonymous said...

Linda, you are doing good work. I know that you don't take everything to heart, but I want the next comment on your site to be positive. Keep up with everything you are doing for as long as you can. You help so many people.
Thank you!

poet said...

there will always be trolls. you are doing good work, both for riley, yourself, and for so many people in the group who now realize, because of you, they are not alone. that is the biggest gift from all of this, knowing that you are not alone in any of the issues you deal with.

I do not agree with the troll comment that you are trying to save the world from alcoholism. what you have been doing all along is educating, sharing, and being the change you want to see. *gentle hugs*

Anonymous said...

I believe the first comment says more about the poster than Linda. It is interesting to examine what triggers us and creates the transference and projection issues.

Linda I admire your blog for its honesty and authenticity of the challenges of your day to day life - at the end of the day my question is " can I sleep tonight with the choices and actions I have taken?" Yes it's also about me and my ability to live with myself and my conscience. And we must all honour our unique circumstances and how we respond to them individually and in a way that is congruent with our values.

jo said...

i hear ya on this post. let me tell what someone said to me once. it was about my dog..but its relevant to any situation.

"sometimes there is no right choice".

he was right . there is no black and exact guides. we do our best with what we have.

ignore the troll. they have anger and are not directing it at the right place. dont feed them.

great post, linda. very spot on. if you havent been can not imagine how it feels.

mine has no living will. wont sign. i have no idea what i will do and i know God will show me what He wants.

mine also wants to die and not sober. he is proud of it.

Andrea said...

Linda- you are a very insightful woman with experiences that many of us hope to never have to go through. Although I may not always agree with your choices- they are yours to make with your circumstances in mind. Rather than "complaining' I see your honesty as a way of helping others who are facing the same choices. You lead by example as someone who has not let life make her a victim. You are devoting energy into helping others, whether it be awareness, or confidants or a place to go seek help. There will always be people who disagree with your choices and feel they need to give you a reality check. But at the end of the day YOU have to live with your choices. It sounds as though you are at peace with how you are facing the daily struggles of someone who cares for an end stage alcoholic.
Glad to have found you and this wonderful community for support.

Furtheron said...

"Rather be dead than sober"...

Sad I know I was at a point where I'd rather be dead than drinking and I'd tried to stop but couldn't so didn't know where to turn. It is all "the jumping off point" in the AA big book - ironic as I'd stood on a cliff staring at the English Channel willing myself to jump but couldn't. I went back to the bar, ordered another drink and inwardly was torn to pieces.

Luckily I did reach out for help and am a few weeks away from 9 years sober. I'd rather be sober than dead any day now that I've experienced it - I'd rather be dead than drunk again I think.

I was looking out some stats recently in the UK in 2011 over 8,700 people died from alcoholism. That is only those where on the death certificate a cause of death is attributed directly to alcohol, so how many is just heart attack, stroke etc. put down you could probably double that number to those where alcoholism has played a significant role in the death but not reported as such I'd wager.

I admire Riley's strength and note in it that sadly that strength can't be directed to sobriety

Anonymous said...

Never try to educate pigs, it wastes your time and upsets the hog.....