I feel like one of those cartoon characters walking around with a signboard on the front and one on the back saying something like The End Is Near or Eat At Joe's. Something like what I call missionary zeal takes hold of me when I think about Hospice. I went to the meeting several years ago where people interested could get involved. The talk was about setting up a bureaucracy, which I didn't want to be a part of. I knew it was necessary as working structure, but there was so little about what they do, a woman asked at the end, "I just want to help people. Is there anything here for somebody like me?" I thought, 'Amen, sister,' and was the first out the door when set free. I paid Hospice no more mind after that.
I figured it was a good thing they were doing. Hospice worked with Jr's and my friend Jean in her last months. Jean was very happy with what they did for her. She went on at home in peace, a radiant light. I didn't know what all Hospice did. What I thought was somebody goes by periodically to be a friend and talk about spiritual stuff before somebody dies. I've had several conversations with Hospice people over the last few days and found the reasons I was so dissatisfied with agencies and bureaucracies. I took it for granted they would regard patient with basic respect, would want to hear about his ways, what works with him, what doesn't, what food he likes and doesn't like. They didn't want to know anything. They 'd listen to me yap if I persisted, but you catch on right away when your input isn't welcome.
Listening to the women who came here to the house from Hospice tell me about what Hospice does, I understood why the agencies didn't perform as I'd expected. There's that word. It was because I assumed service agencies were there to help and would take a personal interest in the patient. Turns out I was "expecting" was radical. First thing I was told was Hospice is about the patient's comfort, keeping patient comfortable as possible. Knocked me over backwards. 5 to 7 years ago when I saw Jr was fading and so lonesome sitting in the house all day, I was assessing for myself how best to help Jr going into the hopeless and helpless time in his life, I came to comfort, the one thing I can help him with that is not controlling in any way.
I wanted to help him, not control him. I wanted him to be able to make his own decisions as long as he was able. My ideal was that he could die at home, in his own integrity of who he is. He had the life of Job that would wring a rhino to its knees. As I knew Jr better, we became friends. He has seen by now he can trust me to do what I say I'll do, that I'm not here to take from him in any way. By today, he's comfortable when I'm around. I don't want anything that's his. I've got enough of my own, too much. I want him to have someone with him in his time when he can't look after himself, someone he can trust on every level.
It's a very high privilege / opportunity for me to have the trust of a man of these mountains. He knows when I talk about him with other people, I only speak of him in respect and say nothing he wouldn't want me to say if he heard it. I want to allow his privacy. And that is another Hospice principle, to allow the patient his privacy as an autonomous individual. Respect is very important. When he was regarded without respect, like a load of lumber, this old dog would start paying close attention and a growl would start forming in the throat. A lot of the Rights that Hospice allows the patient start with the right to be informed of everything that involves them and their care. No more lies. The first one is the best one, "the right to be informed and participate in your own plan of care." I'd not experienced with the facilities and agencies involved with Jr's care anything like a right to be informed. They might have had it in writing somewhere for looking good, but in practice it was just a bunch of words.
I was not willing to allow anything short of respectful behavior with him. Every place we dealt with was unsatisfactory in my way of seeing. I knew I could keep him more comfortable than a nursing home / prison could. None of them came up to my principles that I then regarded self-evident. Evidently they were not. Then the women from Hospice lined out everything I was unwilling to allow Jr to live without. Them telling what they provided was like my own list that I will not allow anything short of for Jr. I felt like we fit like a plug and a socket. It was funny hearing them tell me the Hospice philosophy and it, word for word, my own. They are here to keep him out of a nursing home, so he can pass his last days in the comfort of his own home.