The heat has been weighing heavily on us. That said, we've given ourselves permission not to accomplish much, other than ADLs. Groceries, laundry, dishes, household chores. At our age, we still feel the pressure of having to accomplish something in order to value ourselves.
I have an interview for a new volunteer position. I've been reviewing all the clients I've had over the years, and remembering the good work I have done. It has really helped my mindset.
I remember my first assignment. The client had 5 adult children, all with their own ideas of what should/could be done. I noticed that the client while not entirely awake all the time. The son who lived with her thought that if only I could get some scrambled eggs into her she would be fine. He had the night shift.
A daughter had made up a schedule for caregivers. I was there for a few hours in the afternoon. Said daughter was very busy, with a job that was way more than 9 - 5. A daughter-in-law was there for another shift. It was teamwork.
It was May, 2009. I put pansies in her planters. It's a nice sight on a front step. Mostly she slept.
I took a mandatory 6-week course Fundamentals in Palliative Care in 2008 with PSWs, nurses, and it was the full deal. Six weeks, three hours a week. Many are things volunteers need not know, and should not do. As I watched my client laying in her hospital bed in her living room, I could see she was agitated. I knew the non-verbal signs of pain and the PPS. My late father showed this as he was dying. No one would believe me when I said he was in pain. Vets are better at identifying pain, as their patients are always non-verbal.
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| Palliative Performance Scale |
I also learned about disease trajectory. It is well-documented for many diseases.
They had a wonderful communication book, in which I would write comments. Volunteers can't give meds. We don't do treatments. There is a very different Scope of Practice for volunteers, PSWs or nurses.
I got myself into good trouble! I talked to the DIL, and told her my suspicions, that there was unmitigated pain. Back in those days, doctors were afraid of medicating patients. There were these myths of pain management. How terrible it would be if someone dying became addicted to morphine??!! It took me 3 days to get the proper pain management for my late father. I know how tough is is. The myths abound. (See below.)
The daughter talked to the nurse, who wasn't her regular nurse, just an on-call. The nurse thought I was full of shit. She asked the client, and the client was unable to articulate her pain. Said nurse phoned my supervisor, Sandra Winspear (now retired), and I got into good trouble. I explained what I'd seen and heard: the plucking of the clothes, the irritation, discomfort on her face. She was put on pain meds. She had a good death. In peace.
I found myself an advocate for families navigating the journey.
Hospice Muskoka was working on creating a physical hospice. Finally, in 2020, they found the money to build and sustain such a building. With hospital crowding, they don't like to designate a room for this.
I volunteer virtually with Canadian Virtual Hospice. They write of the 10 Myths about Palliative Care.
10 Myths about Palliative Care_2024.pdf <= if you are interested.
14 comments:
Good for you for volunteering in such needed places. It was good that you knew signs of someone’s discomfort in order to help them. This month of July was the birthdays of two of my friends who have died in the last 10 years. of course I still miss them and think I’m about frequently.
You have done and are doing good things.
Back when my dad died in '93, pallative care and hospice weren't something done. They might give pain meds but that was about it. I so wish he'd had the Hospice experience or Hospice at home. It would have been so much better for him. The same for my mom in '77. She was in the hospital -- the real hospital -- six weeks because they didn't really have that kind of care elsewhere. We could have all benefitted from the support and respite that Hospice and health volunteers provide. I think you are the most remarkable woman for being such a wonderful support and advocate during someone's final journey.
We're the same generation (I'm 66) and I don't think I have to accomplish something every day to be okay about anything. But there is always the satisfaction of a clean kitchen, isn't there? A pleasant place to be, as opposed to a task yet to be tackled. Is it all about the shot of dopamine we get when we check something off our list?
Just caught up on your posts, Jenn. I took a volunteer palliative care course when I first came here to On thinking I would enjoy that. I helped one 88 year old lady taking her to get groceries once a week and for a coffee. She was not sick but very feeble and needed help getting around. She really enjoyed the outings as did I for almost two years till she died suddenly. Then my other things in life took over...so it goes. How kind you are to care like this and give your time. I admire you! Btw, thanks so much for mentioning the Merlin Bird Sound ap. I put it on my phone, the first and only one on it, and I tried it in the backyard near the phoebe nest where there were lots of bird sounds. It immediately told me Eastern Phoebe. I love it!
Is a great and so important work, to help other people, staying ill inside hospitals, on helping people in his last days.
This kind of voluntary work is hard, I think, for all that one person see, but is great, and is completly necessary.
You did a good work. !!!
Greetings from Mallorca.
I certainly admire you for volunteering for a position like this. Positions like this are not for everyone, but I can see that you are such a great and caring person who is great working with patients.
Caring and reassuring, most important as any patient will say.And to be a volunteer is a massive testimony to you and your heart.To be an advocate, to listen, to care, and so much more.
I can kind of understand seeing someone in pain and realizing what you're seeing in their face. My late husband was on home hospice for 9 months with stage 4 lung cancer. It spread to his brain so at times he wasn't as coherent as he should have been. The nurse came once a week for an hour, other than that it was me and my daughter who took care of him. Thankfully I was able to get him the pain meds he needed pretty easily. Thank you for all that you do for them and advocating for them.
Hari OM
It's valuable and rewarding work... not everyone is cut out for it, but if it is within one's scope, then it's a worthy pursuit indeed. YAM xx
You should feel proud of yourself for doing important work that not everyone is suited for.
Thank goodness for volunteers like you!
Thank you for being a patient advocate. As a former hospice RN, it's hard to work with families, but agitating when the hospice staff doesn't do their job. You're an angel for helping a fellow human. Linda in Kansas
You have such a wealth of knowledge. I can thankfully say that our Hospice team is top notch and really on the ball. They are so incredible. We don't just have a nurse, we have a social worker, Home Health Aide for washing up, and a Chaplain who visits once every few weeks.
I do believe that I may become a volunteer for them after my time with hubby is done.
Plus, SO many people are afraid of Palliative Care. We were in Palliative care from 2018 until 2025. Best thing ever. We had not given up, hubby just wanted comfort care.
This is a very important post that should be seen by many folks.
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