Friday, May 16, 2008


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.


kj said...

debra kay, i hope and believe that the angels from hospice will help you through all this. my father died with hospice and it was actually so loving and peaceful i find that i am no longer afraid of death and saying goodbye in the same way. let the hospice nurse know how you feel and ask for support when you need it. they understand. and i think your uncle john will find that he may pass in full peace, still himself, still loved and loving.

i hope this helps.

Fern said...

Hospice does wonderfully heroic work..and don't forget they are there for you and your other family members too

Amazing Deb; you are.

Debra Kay said...

The visit with John today was not bad at all-he dranks some Butter Pecan, laughed at some of my stories. He is pretty much unable to walk now.

I went to tell Mom about the visit thinking it would cheer her, but there is no cheering her these days-Daddy was a bit ill too, so it was just a downer on top of a downer. I am reminded of the little girl in KJ's post today-the one looking for comfort from her abusive mother. It's not the same thing, but it is-there is no comfort from my parents for me any longer-they are to wrapped up in their own fading world.

The key to coping (I guess) is to understand that without judging and quit frustrating us both by looking for it.

studio lolo said...

Uncle John is so lucky to have you by his side. You're getting a gift from this experience as well, although it may not be apparant yet. Trust in the process and find comfort in your wise compassion. I know Uncle John does.

sukipoet said...

I agree. Your uncle is lucky to have you there to care about him. It sounds like you are doing an excellent job of taking care of what needs to be done. Be sure to take care of you too. i see you surrounded by angels and love. Suki

Honour said...

I like what Studio Lolo said - trust in the process and find comfort in your compassion. Death is a process very few in our western world respect or even acknowledge any more. Long time ago in university, I took a course called "Death and Dying" and my prof said, "this is the only course you'll ever remember from your undergrad years." He was right ... the things i learned about in the class - the importance of the process, of what this means -- it all came back everytime there was a death in my family. And it was a lifesaver when my mom had a very serious illness a couple years back. Peace to you and your Uncle in this journey ...

Mim said...

Hmmm - I left you a long comment last night which appears to have disappeared. I'll email you, mim

Debra Kay said...

No e-mail yet Mim-are you Ok?

The awkward part of this is Uncle John is a practice run of sorts, and we all know it. And I have known for a very long time what my part would be, because I have chosen it-my choice not to look away or run away was very deliberate.

This is the biggest childhood boogy man of all-being the only one left and it's bizarre to balance their needs of my presence with my own need to run away and not be left behind.

Some people don't know they can walk away, so they stay. It's harder to know absolutely that you could walk and yet you don't.

human being said...

Debra you are an angle! No... more than that... so kind and so daring...
Read this please:

Lynn said...

My heart goes out to you in this difficult time. I remember having to clutch the paperwork my mother had signed saying do not resusicate when we took her to the hospital at some ungodly hour of the early morning/night/dark out still...having to say those the staff at the case this was the end...and it was...and I said them...and they were the hardest words I have ever had to say.
the hardest before those was "Mom, you can't drive your car anymore."

I hope you and John were able to enjoy your Butter Rum Boost and holding hands many more days.

orgasmik said...

Death is'nt something that comes to us at the end of life.It accompanies us daily -- to take us to our last step, before we melt in the winds of time.
Thankyou for the sharing Debra!