I met with a social worker from hospice, Ann, two weeks ago, and I've been meaning to blog about it ever since, but something has gotten in the way. (Something emotional. I can't define it any better than that.) But I want to get this onto my blog, so I'm just going to read through my notes from the meeting and post everything that seems relevant.
Laurie and Monica were part of the meeting, and, although they didn't say much, it was a help to have them there. I was not feeling all that great on that Monday morning, and at the time I thought it was because of stress from the meeting itself, but I had also gotten up during the night, needing to throw up.
When I got out of bed to go to the bathroom, I blacked out briefly and fell, hitting my head. (I've done this before.) Older Son heard me fall and came downstairs. He got me to the bathroom--but the urge to vomit had passed--and then back to bed. I threw up later in a wastebasket that we had placed next to the bed. Ugh!
When I saw Dr. Lee a couple of days later, he said I should have come in on Monday for IV fluids, and he gave me a bag that day with my treatment.
Back to hospice, after that long digression.
Ann and I talked about the family meeting with Dr. Lee, and she agreed that most people have this meeting during the last few weeks of life, which explains Dr. Lee's focus on pain control. Ann said family members are usually worried about pain.
But, she said, she thinks it is a good thing to have the family meeting early, as we did, so that it is not crisis-driven.
I told her that one benefit of the meeting was that it gave me an opening to talk to both of my sons, separately, about what's going on. Younger Son, who may well be in Japan when I am dying, talked to me about coming home for my death and my funeral, in order to be here for his brother.
Ann listened to me talk for a long time--she asked leading questions about my life and my sons--and we didn't get to the subject of hospice care until I brought it up. This was almost an hour into the meeting.
When we talked about caretakers, one thing Ann said was that people in hospice care sometimes say that they wish their caretakers would just sit down and talk, or just be with them, but the caretakers are often too busy with all the work to do this. She suggested that my friends take the time to be friends, not only caretakers, and that we make a division between visitors and caretakers.
This was similar to what my therapist had said. Good idea, but it also means I am going to have to have a lot of people helping to care for me.
Ann said that Cancer Lifeline, a local organization, has a program or service where they organize a meeting with potential caretakers to discuss my needs and the kinds of help various people are willing to give, and then coordinate a schedule.
Once I'm on hospice care, I will need someone here all the time, at night as well, which I suppose means three people a day for eight hours each. These people will be primary caretakers, who will do my physical care with the help of hospice nurses and other staff, and then we will need other helpers to do things like laundry, housework, shopping, walking the dog, and watering the garden (if it's summer).
Ann suggested that we make a list of tasks that need to be done and also a list of people who would probably be willing to help. I asked her how many primary caretakers I would need, and at first she said three, but when I told her that Monica--who has done this before--thought that six was a better number, she agreed that six was reasonable.
One of my friends will call Cancer Lifeline and organize one of these meetings when I am closer to the end.
Yesterday, I made a list of friends' names and e-mail addresses and sent it to Laurie and Monica. I am not sure if I have six people willing to do hands-on care, and of course these also need to be people I am comfortable having care for me in intimate ways.
I think--I hope--I have a dozen or more friends who can be asked to help with other tasks and also just come to visit.
Ann gave me copies of an advanced directive that hospice uses. It's a list of wishes--things that I want, and things that I don't want. In all honesty, these are still lying on the coffee table, unread.
Yes, I'll get to it. Before too long.
Then we talked about the nitty-gritty details on getting signed up for hospice, and my notes on this part of the conversation are not too clear, but I know Monica was taking notes as well. I was starting to fade from stress during this part of the conversation, and I had trouble getting all the info. Plus, it's a little confusing.
Basically, we call Ann to sign up once I have stopped treatment for my cancer, and Dr. Lee needs to call her as well. I'm not sure if he has to do paperwork, but he will know.
Once I'm on hospice, they handle things like refills on my meds, and I can call to talk to a nurse at any time. Or my friends can call.
A nurse, an RN, will come to see me once or twice a week, and I can also see a social worker (not Ann, one who will be part of my care team), an occupational therapist (I asked if we could walk Connie for OT--the answer was "probably yes"), a health aide for shower help and the like, and probably another person or two whom I've forgotten.
One thing that I didn't realize until this point--I KNEW it but I hadn't thought about it, really--was that all these people will be coming to me, and I won't have to be going out multiple times a week for medical appts. as I do now. That seems great. My prescriptions will arrive on the front porch--no more trips to the drug store.
We also discussed my going in and out of the hospital when I need to, and signing on and off of hospice during these hospitalizations. I lost the thread on this one, so I'm going to count on my friends and social worker to manage this.
What else? I'm sure there was more, but it's not coming to me now.
Oh, we did discuss pain meds, and IV pain meds, which I thought my friends wouldn't be comfortable handling, but Laurie and Monica both surprised me and said they would do it. (This doesn't involve placing a needle, the nurse will do that, just changing the IV bags.)
My overall impression was very positive. Ann said she didn't see any problem with my dying at home, despite my lack of a partner or spouse to be my primary caregiver, and that was reassuring.
We discussed the topics that my therapist had raised, including my behavior toward my caregivers when I'm dying, and Ann was more positive about this. She said most people die the way they have lived, so I didn't need to worry too much about a lot of anger coming out at the end.
I hope not, because one thing I have never felt is anger over having cancer. I've been angry about other things--as readers of this blog will know very well--but I have never been one to shake my fist at the sky and demand, "Why me?"
OK, let's end on a funny note here.
One thing that I had always heard about hospice is that they will send you violinists if you want them, and for some reason--with apologies to the musicians--this had always struck me as funny. I could see the classic, and unrealistic, deathbed scene, with the dying person, me, in a white nightgown with lace and embroidery, violins playing, and angels overhead.
So I asked Ann about the violinists, and she said that her hospice organization doesn't have violins, but--get this--they can send me a harpist!
Again with apologies to the musician, I find that incredibly funny, and the four of us joked about me having a harp playing at my deathbed. (OK, maybe you had to be there. I thought it was exquisitely funny, but maybe I was just punchy from the two-hour conversation.)
@ Jeanne Sather 2010.
