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.
at 7:43 AM