I woke up really early this morning wanting to go to the bathroom - the light in the hallway was on, which meant that D was up. I stayed put and decided to go back to sleep. When I got up 2 hours later, guess where I found her - you guessed it. Asleep on the toilet. I hauled her up and she put her back to bed. I wrote up an action plan for her which included the choices available to her. I barely got her up in time before the nurse and a palliative care coordinator came this morning to have a meeting with her. They recommended she go to the hospital immediately because they were concerned her lungs were filling with fluid. She refused. I sent them out of the room and had a private chat with her. I asked her what she wanted. She made it clear that if she went to the hospital or anywhere else she couldn't take her herbs because they would put medicine in her. She was done with western medicine. But every day she says she's going to make the herbs and every day she is unable to and she won't let me do it.
I hung my head, drew a deep breath and went to tell them she wasn't going and what could be done for her at home. There was a whirlwind of phonecalls and questions and now I have a few hours to put a put a plan in place and then pass the info on to a point person before I leave. I could wring her little scrawny neck. Yeah, I yelled at her a bit - I had her the phone and tell her to call her point person and she says she wants to think, she needs five minutes. Yeah, I said, why don't the rest of us sit around and wait on her. It's not like we mind being inconvenienced. I warned her that the minute she becomes incoherent (and she's had her moments) or becomes unconscious, she will no longer have any more control as to what happens. I know she is not ready to die, but she's waiting for the divine and I hope she answers her call. As much as I understand, I am frustrated! I have to make these phonecalls that I don't want to make. I have to hear her relatives pain in their voices as they try to understand what can and cannot be done for her at this point. She should have had a plan in place, a power of attorney done, but she has not done so. There is a profound reason for this. And I have to just let it go because I cannot control this situation and it's not my responsibility. But as one who has gone down this road before with my mother, those that are left to caretake and do all the grunt work, are the ones who pay the price when critically ill people don't prepare for the worst ahead of time. I love her but I'm a bit pissed.
I will get to go home and others will fill my place. There will be a schedule of professional caretakers, family, volunteers and friends to fill in the gaps. They have a limited amount of hours they can provide personal care to her. It will be depleted in about a week, unless another relatives can show up from out of town which apparently is supposed to happen Monday. I hope that woman realizes what she's getting into.
Ah, I need a drink.
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6 comments:
so very hard. you are such a good friend. I hope she finds some strength to do whatever it is she needs to.
yes, time for your drink now.
That's called "Tough Love" I do believe. I am afraid I would probably be just as stubborn as your friend and would need someeone to kick my butt too. I hope she is well taken care of after you leave.
(this is Portraits in Sepia by the way...changed my signature.)
You're doing a very good (but very tough) thing. I give you total credit.
I so relate to what you are saying. I was the one explaining (even back in college) that, no, my parents and uncles could not take care of my grandfather with Alzheimer's.
Or, that my DH's husband's grandparents can no longer live without assistance in a row-style house!
I'm lucky in that my parents have made provisions. I know this because, well, we are a maudlin group of Celts. I thought all families talked about death and dying the same way. It was rather shocking to find that most folks find it verboten.
I wish that our society was better at admitting that there are times we need help - no matter how strong we think we are. And, secondly, that we did not have a stigma of shame on being ill.
Oh Deathstar,
What a kick-ass friend you are lady -- and I mean that --you have such a good sense of the balance between honesty and compassion -- gentleness and firmness -- I am in awe of your resevoir of strength and wisdom. She is blessed to have you as a friend -- and I hope you're finding places to replenish yourself as a caregiver too --
You are a wonderful friend - thank you too for being mine, your comments always, always resound in me.
Love,
Pam
Sending you a hug and a triple of whatever your favorite drink is today. I'll join you in a nice, big cognac.
It all sounds so hard. Thinking of you, and abiding with you.
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