I want to write that I'm scared. Yesterday I signed Uncle J into hospice care, literally at least 10 forms giving him permission to die if he wants to and revoking this permission if he changes his mind.
I do understand fully why we have to go through this-we must protect our elders wishes to stay or to go. But this body and mind are more wired toward granting life, not granting death. My heart knows I did the appropriate thing, but my mind is going "this just really doesn't make sense does it?"
I started a series of writings and poems called "down the rabbit hole" because I knew that John's dementia was going to lead to some strange things. What I didn't realize was that it would lead me to the dementia we have created within our own society-where I have to grant an elder the right to exit with dignity.
I don't want to tell you these things because they are so bizarre and I'd rather frolic with the dogs. But, maybe if I tell them, someone else won't be quite so shocked.
I used to not understand why people wouldn't sign a DNR (do not resuscitate) order. Yet I kept putting it off. Now I know why. It's not an abstract order or idea. It's pretty specific. Without one, if the staff comes upon an elder who has died in their sleep, they are required by law to intubate, administer CPR and IV's until a doctor comes in and pronounces them dead.
I immediately thought of my Grandmothers, who died within 24 hours of each other, in their sleep. And yes, it was in their sleep and what happened after I didn't know about (till now) and it really didn't make any difference to them, but I was crushed to contemplate it.
In Oklahoma a DNR doesn't preclude oxygen or pain pills, deemed "comfort support", it just means when the heart stops, there will be no tubes or pounding. We have to legalize common sense, and worse, there has to be a responsible party-someone must sign on 12 dotted lines saying no tubes, no I won't sue if you don't use tubes and if some strange relative comes out of the woodwork, send them to me.
I've signed lots of papers in my life, made decisions for me and all kinds of people, some good, some not so good, but this one seems to be the hardest. I've explained it to the family, calmly and quietly, but I wanted to scream at them "I DID THAT...ME....DO YOU UNDERSTAND? I SIGNED THE PAPER" and in the same thought I feel just awful for making this about me.
No man is an island. Who said that? But it's true. John is not, and neither am I. We are both affected by what is happening.
But that was Thursday and today is Friday. Today I will visit Uncle John, take him some Butter Pecan Boost cause it's his favorite. If he has questions, I will answer them as best I can. Because I am not like the Pilot person-I don't sign things and wash my hands of them. I sign things, then I go hold his hand and wait with him.
This really is the part of the journey that no one speaks of, but if no one does, how will anyone else know what to expect?
I know what I'm going to do with regards to funeral arrangements, but hospice has suggested that I get prelims set up with vendors. And I do see the wisdom in that because I can easily see how people end up with ticker tape parade funerals. But vendors will have to wait till Monday-I'm going for some Butter Pecan Boost and a visit-and right now that is the hardest thing I've ever had to do.