Mar
12
I had a nice afternoon doing a different sort of volunteer work yesterday. I thought I’d take a little time before accepting a new hospice patient, and offered to help with office tasks for a while. I came in one day last week to sort of get the gist of what was needed, and yesterday was the first day of doing any official sort of work.
Confession, I was NOT looking forward to this! On the day I’d been there before I felt like the environment was too … low energy, maybe. It’s a big nice building with a corporate setup — offices and meeting rooms that line an interior maze of cubicles. Not a ton of people working in there, the usual fluorescent vibe, maybe a lingering feeling of not-great-Bob because the parent company, a large multi-state healthcare system that’s gone though a lot of layoffs and has become kind of largely disliked locally, has really impacted the hospice team with cuts. Also, the work I’d done that day mostly consisted of struggling to master the computer setup and laboriously typing up a self-eval form for fellow volunteers.
So I wasn’t going in there thinking it would be a rewarding sort of day, you know? But it was! First of all, the more time I spent in there, the more it felt alive. I was there for a longer stint so I’m sure I just saw more people coming and going. I also could appreciate how even in this extremely corporate feeling place there are all these touches specific to hospice that make it feel homier when you take notice of them.
I also got to work with another volunteer for a lot of the time, a very nice older woman who got me up to speed and also made me very envious of her hair: thick, snow-white, and cut into a chic bob. (How do some women keep such great hair all through life, me and my four strands of Minoxidil-resistant hair would like to know.) It was just nice to have an IRL co-worker type of experience! It’s been a very very long time.
The work we were doing was transferring a bunch of information about patients from the computer database to a paper form (this part drove me nuts, so much room for human error, but that’s the system) which would then be used for calling the patiet’s person of contact and offering volunteer visitor services. She made a couple calls with me there so I could see how it goes, and then I took over when she left.
I made a LOT of phone calls, so first of all, let’s hear it for the phone phobic weirdo. Now it’s true that many of them went to voicemail, but I did get through to quite a few people. I felt a little stumbly at first but it was immediately apparent that these were special conversations that felt a little … gosh. Sacred, is the word I want to use.
I was calling people who had someone beloved in their life that is actively dying. Some people weren’t sure what a volunteer visitor does, so I could explain that, and most were pleased to say yes. A couple people said no thanks, their person was far enough along in the process they felt it might just be confusing/upsetting. If they do say yes the next task is to try and get some basic personal info about their person, what they liked in life, their hobbies or what they did for work. One lady said her husband loved the arts, and gardening, and he absolutely wanted nothing to do with sports, and we laughed about that. I said, “You had me at no sports!” and she was kind of delighted to talk about him a bit.
Everyone who says yes gets put on a waiting list, so there’s an additional step before they get someone assigned to them. This part has me strongly reconsidering my choice to take a break on patients: I see the need firsthand.
Marty would have been so happy to have me come visit him every single day. I know not everyone is in his position, being a fairly lucid person in a memory care unit, but he had almost no one to talk with aside from staff. I feel such an ache for older people who have lost so much about how they used to live, who have lonely existences, tucked away and seemingly forgotten by the world. Being a sick person on hospice does not automatically mean being lonely, but for the people on these lists, it very often does.
There was a group activity we did back when I was in hospice training. (Side note, this was a weeklong in-person thing at the time, but I believe it’s all online modules now. A bummer, but probably more accessible for people who can’t devote a full week to that.) I am of course hazy on the details, because my brain is basically a small crumbling piece of menopausal swiss cheese, but it involved writing things that were important to us on pieces of paper. Going to the movies, visiting family, reading books, climbing mountains, going to coffee with a friend, and so on.
We went through several rounds where we were asked to give up one of the pieces of paper, until we were left with just one, and then we had to give that one up. And listen, I’m not describing this well, but it was surprisingly emotional — imagine having to choose between reading and walking, etc. This exercise was intended to show how it can be for a dying person. Bit by bit, you lose your life. You stop being able to do the things you loved. You don’t see the people you loved. Eventually you may be just in a wheelchair, a bed. So many of the people I have visited have this one small spot that they’re in, and they cannot leave.
Someone asked me once if doing this work has made me less afraid of death, and I said yes and no. Yes in the sense that I truly see it as natural, and that what the body goes through is not gross or creepy. No in the sense that it remains the biggest mystery none of us can understand, and no in the sense that I know we often can’t control how the end of life stage goes and sometimes it just fucking sucks.
It’s scary to think about end of life for all of us, really. For those who don’t have the resources for care, and that will be SO MANY OF US, how’s it going to be? I personally hope it doesn’t come to that for me. Like, don’t take me too soon, Universe, but don’t keep me around too long either.
(We don’t get to pick. I remember sweet Olive, the first lady I saw, and how gently, sadly baffled she was that she was still alive. Everyone around her had died, and she could not understand why God kept her.)
Wow has this depressed anyone yet? Okay, all to say I really did have a lovely day yesterday, a little intense but it felt good to feel useful. Today I get to see Little Joe, and tomorrow I’m helping a different organization that works with kids. Life continues, at least for now.
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Life continues, at least for now. I really admire your hospice work, and appreciated this post.
Linda, how have you found the organizations you’re volunteering with? I find myself with a little extra time now that my daughter is in college, and your descriptions of working with the elderly make me want to help too. My mom did that before she got dementia and I’d like to honor her as well.
Also, as a long time reader, I’m so delighted to see where you are now!!
If you’re interested in hospice, search ‘hospice volunteer opportunities near me’ and local places should pop up! But I would also think any care facility would be very happy for visitors.
The thought of manually transferring patient data from a database to a paper form is making my right eye twitch. I know that’s the system, but… why is that the system? Is it a HIPAA/PHI thing or do they not know how to use their database?
Sorry, I manage databases for a living and inefficiency drives me a little cuckoo for cocoa-puffs, that and my menopausal swiss cheese brain can’t do repetitive mind-numbing tasks anymore.
Yes and I’m not sure why, at least not yet. The worst is there is an 8-digit number associated with their info that you have to write down and that is the part I feel is most bork-worthy.
Oooo, yeah. That number might be the patient identifier in the database. One fat fingered moment and someone’s info doesn’t match up anymore. :( Interesting. I wonder if instead of going through the process of verifying their sensitive data is protected properly they used a loop-hole/poop-hole instead and came up with ‘our volunteers will do it manually!’ method.
I am lucky to have Good Hair. It is thick and wavy, and I let it go gray in my late thirties after my mom died. In perimenopause, it started getting a lot thinner and straggly and wiry and dry. However, since I’ve been on hormone therapy, it’s regrown and gone back to most of its former glory. It took about six months on estrogen to notice the difference in my hair. There are SO many benefits to hormone therapy, and I don’t specifically use HT for my hair, but it’s been a very nice side effect.
People who volunteer in hospice care are angels on earth IMO. When I was nursing my mother through a brutal terminal illness in her ill-equipped for care apartment, I could never have gotten through it w/o wonderful volunteers who helped w/ everything from changing adult diapers to running out to get supplies and just being there for her to talk to and me to talk to. I would have had a nervous breakdown w/o that help. When we finally got her transferred into a hospice care centre where she had five pain specialists and nursing around the clock, I could finally just be with her. So thank you, Linda. You’re a sterling human being.
My mother died last week in the hospital, in hospice. It was brutal but the hospice staff was exceptional and made an unbearable situation less terrible. Truly the best people in the world. The hospice chaplain was a nun who gave me the most comforting care. I am a non religious introvert who hates talking to strangers but she saw that I needed her (my mom was beyond needing anything beside morphine at that point) and it was such a blessing to have her with us. Your work is so important. Thank you for being there for people in their last days.
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