Anybody worked in hospice, volunteer or otherwise? Thoughts?

In My Humble Opinion
1

I’ve been volunteering at a domestic violence safe house since March or April, and it’s been a great experience. (They even offered me a job! But at $8.50 an hour, sorry, no.) I initially went through the training and orientation because they’d hoped to get a grant for sexual assault crisis counseling - which didn’t come through as expected. I’d done that previously, in another state in the ER of a city hospital, for seven years. It was challenging and difficult and the volunteers in the program made a big difference. I loved doing it. I mean, I wish there would never, ever be a need for that type of service, but since there is, I was very grateful to be able to help.

So anyway, my committment to the safe house was 6 months; as a once-per-week volunteer I don’t typically have the time to get involved as much as I’d like. A friend has talked me into doing a hospice volunteer class with her with an organization that provides hospice care both in residential facilities and in people’s homes. So, I am signed up for their orientation in mid-January.

I have, like, zero experience with hospice or hospice care so my mind is completely open. I’m OK with death (far as I know), OK with uncomfortable or stressful situations, and with bodily functions or lack thereof. Has anyone had any experience with hospice work or volunteering? Or have other experience with hospice care for a loved one?

2

I’ve voluneered in both non-profit and for-profit hospice. I’ll give the good and bad:

Good: you will be providing respite time for the primay caregiver (usually spouse or adult child) so that they and the patient have the stress release to make peace as the end arrives. If everything goes well, you’ll be around people who love and are as happy with each other more than any other experience could allow you. You’re just not going to get that going to the movies or joining a softball team.

Bad (especially with the for-profits): hospice gets paid government $ for the hours and miles you travel, after they turn in your logs. So yes, I felt burned when I discovered another volunteer had been assigned patients closer to my driveway, and I to patients closer to hers, all to boost the milage.

3

I had great experiences, with in home hospice (as a volunteer), as far as the elders were concerned.
The people I worked with had Altzheimers and so were needy in a variety of ways, yet gave much back to me–in feelings of my own development of compassion, caring, understanding, and seeing what really matters in the “do unto others as you would have them do unto you” mode.
I was trained not to take much stock in changing or “improving” the elders minds, or trying to snap them back into my reality, but rather going with their flow, and attending to their needs.
I often saw family members who could only remember the elder when they were fully aware and lucid; and sometimes they got angry trying to make them be the way they once were. It was sad to see this, and it follows that the worst part of the job was dealing with family members who were selfish, impatient and disrespectful to their vulnerable parent or grandparent.

4

According to what i’ve read:

I didn’t take that as meaning the organization got reimbursed for volunteer hours though. Really? That’s definitely something I’ll ask about at the orientation!

I don’t expect it to be easy or pleasant or fun; but from what you’ve both said it’s very rewarding and a learning experience, somewhat. The person who got me interested in doing this lost her father (I never knew him) to cancer a couple of years ago, and she was so impressed with the hospice experience that she decided to volunteer.

5

According to this 2010 report, hospices are not reimbursed for volunteer services. It appears the mandated use of volunteers is to keep overall costs down.
http://www.hospiceactionnetwork.org/LB_GeneralMessaging.pdf

6

My mom was in hospice the last few months of her life, and we had her at home, so my experience is that of someone getting hospice services rather than giving them.

As it happens, my family is pretty tame when it comes to handling death so while we used many services we didn’t use all of them available (we didn’t feel a need for bereavement counseling or support groups, for instance). Then again, my oldest living sister is a hospice director herself so we’re probably not the average family in that respect.

The biggest help for us was the respite care, and the help in taking care of a bedridden adult.

Families react all over the board to death. We were sitting quietly reminiscing about mom, occasionally breaking down into quiet tears. Other families become quiet loud, some people get hysterical. Some people are afraid of dead bodies, some aren’t. Some people are reverent towards the dead, some retreat into dark comedy and morbid jokes. You have to be able to adapt to however people react, whether or not it’s how you would, or whether or not you think it’s appropriate.

Really, in some respects it’s more about taking care of the caregivers and the family than the actual dying person. It’s all too easy to focus on the dying and forget the living have needs, too. Someone coming over so I could get away for an hour or two, whether for errands or just to have a lunch with a friend, was one of the most important helps I could get during that time. I don’t care how capable, level headed, and saintly you might be, you DO need a break now and again.

7

I have worked as a caregiver for over 10 years, much of that time taking care of hospice patients. I have a somewhat negative (actually, I have a very negative) attitude toward hospice. Shoot me a PM if you want to know a bit more.

8

I asked my mom to write about her hospice experiences, and here’s what she wrote (lightly edited):

Hospice is a wonderful program for anyone with a terminal illness. I have been “licensed” twice. First time, a small Presbyterian church sponsored the start of a hospice program in our rural southeastern Ohio county. This was probably about 20 years ago. I so enjoyed doing the work, and when questioned, can’t ever really explain why I have such an upbeat feeling about Hospice. It was so new, and at that time, something many didn’t know what it was. We always went to the home, as we had nothing else. This group functioned for 3-4 years, ran out of funding, and so folded.

About 3-4 years later (and all these numbers are from memory, and could easily be wrong) our local hospital advertised that they were going to start a hospice program, and I called, and told I had to go through the 8 weeks of training again, which I did. Eventually, this group was incorporated in a nearby bigger city, and I continued to be a volunteer.

I am no longer doing it, for a variety of reasons: I have lung disease, and told them I didn’t want to go into a home with smokers. I would be given a new patient, and always had a note saying,“The patient does not smoke” but then I would arrive and there would be a smoke cloud, created by all the other members of the patient’s family. This happened again and again, and I got smarter about asking about anyone in the home as a smoker. Got that under control, and realized I was being sent many miles from home, and being an organizational nut, I asked them to make a local map, and put red stickers where each volunteer lives. Then make a 15-mile radius from each volunteers home, and only ask us to go to patient’s homes within that circle.

That was not done in the remaining 2 years I was a volunteer with them, but the third change in our lives came about…We became “snowbirds,” going south for the first three months of each year, as my husband had retired, and I never liked taking a patient if I couldn’t stay with him or her until the end, and so I temporarily resigned, and when we returned to Ohio, I asked to see the map in place, and they didn’t think it was a good enough idea, so my time with Hospice had come to an end. The town where we go in Florida has a Hospice home, and when I went there to volunteer, they told me they had too many! This could be, as we are in a retirement-type area, and enough of us who were all trained to “give back to the community” were flocking to Florida, so now, Hospice is just a lovely memory…I really enjoyed it more than any other type of volunteer work I’ve ever done.

I would be more than willing to answer any questions you might like to ask, so send my son a PM if you like, and he’ll put you in touch with me… Good luck, you sound like you will be a wonderful addition to any Hospice program.

9

Lancia - feel free to share publically in the interest of fighting ignorance and all that. But Iwill send you a PM because I’m curious.

Elandil’s Heir, God bless your mom, thank her and I hope she’s breathing OK! I’m also in the midwest (not Florida) and from what I understand there’s quite a bit of need here yet. Right now where I’m living there’s a lot of retired GM (aka Generous Motors) employees, so those that still have their benefits are plentiful.

10

Glad to help. I’m sure she’ll be checking back on this thread.

11

I volunteered for hospice, briefly. The patients I was assigned lived in elder care facilities, so I wasn’t providing respite for caregivers or family members, but giving the patients someone to talk to, someone to tell their stories to. I didn’t provide physical care, but mostly emotional support. One patient was a bit difficult, but once we found common ground, we became very close. It was a very positive experience, and I will volunteer for hospice again, once my life circumstances permit it.
Even if you don’t end up volunteering, the training will be useful for you in helping friends and family members during times of illness.