Volunteering Death/Dying Support and Talk

[Heather]

Hey, everyone.

So, I've been mostly quiet about it, but I've recently started training as a death doula/non-medical end of life helper. I'm happy to talk more about all of what that kind of care can entail or my training program if anyone is curious.

But what I came in today to do was to volunteer myself to anyone who comes through here who wants/needs to talk about death and dying, to process grief or loss -- whether that's from or about an actual death or dying process, or is about, for instance, the death of a relationship or loss of an old self -- or to get any support if a loved one or you has died or is in the process of dying. Volunteering this to people is part of my training program, so making that offer for folks here felt right. As a child and a young person, I dealt with a lot of grief and loss, so I know what it can be like to try and talk to people about it.

Hit me up if you want any of that here, and I am also happy to use our live chat function to schedule time with anyone to do this more one-on-one if that feels better. <3

[Andy]

Hi, I hope it's not a problem that this thread has been made some time ago and I'm not asking exactly for what you offered, if this or anything else is a problem, I absolutely understand.

Firstly, I have a few questions mostly out of curiosity. I've recently seen two people when they were dying i (in a long-term care hospital when visiting my grandmother) and it left me thinking quite a lot. I can't especially get over the fact how the nurses and other staff were dealing with the situation, of course I'm in no position to judge them, but the atmosphere and their attitude seemed really unpleasant and disrespectful to me.
So I'm wondering how should it be done right? Are there any simple principles how should care and communication with a dying person and their close one's look in their last hours? Is a care facility obliged to provide that kind of care and approach?

And I'm also asking because I've been researching care facilities where my grandma could move to soon and out of those tens I've checked out just few provide information about their plans of palliative care/accompanying of patients and just two claim to have a trained non-medical member of staff who specialise in that. And even though my grandma might not need that kind of care anytime soon I'd like her to have a choice of a good care in all the upcoming stages of her life. So I'd like to ask what could be some questions that we could ask the care facilities about the care they provide? And even though it is probably highly individual, is someone with a professional training guarantee of a good care? Anything else I should know?

And also last question, what can be some gentle way to initiate a conversation with someone about their death (in order to find out how they would like their last moments to look, sort out property, ask about their preferred way of burial...)? And is it okay to initiate this conversation when the person doesn't bring it up by themselves?

[Heather]

Not a problem at all! Consider it ever-open. After all, it's not like we're going to stop dying.

I love these questions, they're so rich! Thanks for asking them. Give me a bit to finish some other things with deadlines I need to today, and mull some of this over a little, and I'll circle back.

[Heather]

I'm so sorry it took me so long to circle back to this for you! These are really great questions.

I've recently seen two people when they were dying i (in a long-term care hospital when visiting my grandmother) and it left me thinking quite a lot. I can't especially get over the fact how the nurses and other staff were dealing with the situation, of course I'm in no position to judge them, but the atmosphere and their attitude seemed really unpleasant and disrespectful to me.
So I'm wondering how should it be done right? Are there any simple principles how should care and communication with a dying person and their close one's look in their last hours? Is a care facility obliged to provide that kind of care and approach?

I do think it's okay for you to have whatever thoughts and feelings you have about what you've seen. While nothing is universal in this regard, I do think that for sure there are ways of treating the dead and dying that are respectful and that aren't, and long-term care facilities very much differ in quality just like any other kind of service. When my mother was recently in one, there were for sure a few times she was so clearly treated like a body and not a person, and she wasn't even dying!

What's "right" is going to depend a lot from person to person, but for sure, if you want to find out what a dying person wants, so long as they are not in the process of actively dying (when it's often too late to get a lot of detail or response), that's who I'd start by asking.

But you also get to have your own wants for the treatment of your loved one! So, it's always okay to talk to a staff person or to find a supervisor when you have concerns. I like to remember that not everyone has family or other advocacy, so when we see something that troubles us with our own loved one and follow up, we're probably helping other people who need advocacy, too, you know?

And I'm also asking because I've been researching care facilities where my grandma could move to soon and out of those tens I've checked out just few provide information about their plans of palliative care/accompanying of patients and just two claim to have a trained non-medical member of staff who specialise in that. And even though my grandma might not need that kind of care anytime soon I'd like her to have a choice of a good care in all the upcoming stages of her life. So I'd like to ask what could be some questions that we could ask the care facilities about the care they provide? And even though it is probably highly individual, is someone with a professional training guarantee of a good care? Anything else I should know?

First up, know that death doulas are all across the globe, and many are available as volunteers, for low-cost or barter. So, if you want help seeing if we can't find someone for your grandmother so that person is there for her and you regardless, just let me know. I can absolutely start by asking my training facility if they know of anyone working in your area.

I would not say many facilities have non-medical or non-clinical staff for patients, but I think that having some is a definite vote in favor of a place. I'd also see if you can't talk to others who have or have had family members at a facility: they will often be more honest about the reality of a place than anyone whose job is on the line.

I would also suggest asking them to just talk you through the whole process of their care, from intake to death. What is provided? Who decides that? What kind of care is available: how about things like a therapist or counselor, religious or spiritual services if that matters to your grandma, flexibility in diet/food, music, etc?

And also last question, what can be some gentle way to initiate a conversation with someone about their death (in order to find out how they would like their last moments to look, sort out property, ask about their preferred way of burial...)? And is it okay to initiate this conversation when the person doesn't bring it up by themselves?

I think you need to use what you know about that person and their relationship with them when it comes to the how, but I absolutely think it is fine -- and good! -- to initiate the conversation with someone about their own death who hasn't brought it up themselves. Sometimes people just don't know how, or are afraid of causing those who will survive pain, of being a burden, and so forth.

What feels like a way to start a conversation about that with your grandmother to you?

[Andy]

Thank you so much for those answers! And there is no need to apologise.
I'm sorry I didn't let you know in time that it was not urgent at all anymore because I don't get a say in anything regarding my grandma anymore nor am allowed to talk with her about 'serious topics'. As my mum came to terms with the situation and settled into the new routine she has more bandwidth and energy to deal with everything, communicate with providers and facilities and doesn't need and want me to engage in any part of the process. I understand it but it sure felt way better to be able to help at least a little. I miss it especially now that I can't visit my grandmother because there is a lot of covid at our shcool and there are no restrictions...

I also wanted to quickly say that what you said about your mother being treated just like an body body is so painfully accurate and I'm so sorry it happened to her... It often seems to me like all those patients are just items in their tables and their body functions boxes that they are absentmindedly trying to check and there is no space in those tables for emotional or social needs or even basic respect. Just because those patients are old and sick doesn't mean they can't give consent or don't need privacy.

Anyway, thanks again for bringing this topic up here. I won't ask any other questions because they would be just hypothetical and
don't want to take up too much space here so I'll leave this thread for it's original purpose for those who need it.

[Heather]

You're welcome to keep talking here about any part of this you like. <3

I'm really sorry that you haven't been able to visit with your grandmother. If you want an alternative, you might try asking the hospice/skilled nursing facility if they can help facilitate a video call?

I'm afraid that this arena of care is one which in some ways asks a great deal of people while often those doing most of the labor are very poorly compensated and not particularly supported in delivering quality care. That's not to excuse poor care at all, it's instead to say that these systems in much of the world often aren't set up or run in ways that really enable quality care so much as profit. It's a big part of why there are more and more of us out there getting involved to try and change these systems, offer alternatives, or at least pitch in to work within existing systems and settings so that people dying can have better deaths, and people who love someone dying or dead are better supported.

[Andy]

Thank you so much, especially for the offer to talk about it more <3
I'll refrain from talking about my grandmother for now because it's a bit complicated and it doesn't seem right to discuss it in such public space.
But I have a few more general thoughts/questions if that's okay

What you say about care systems makes so much sense and thank you for reminding me of that. It's so easy to forget how hard it must be to work in those fields possible also because we never hear stories of those people in media, it's always about those who make a lot of money and I believe there is so much to learn from them. And the general approach towards people working in all helping professions or in nonprofits is so awful here, I genuinely admire everyone doing it, not to even mention things like low wages. Even though there's a big difference in our and US healtcare systems, I think it's universal that it's easier for people with not-so-good intentions, like putting profit before good care or getting a place of power, to hide in those robust systems.
Why I'm saying all this is mainly to express how grateful I am to all those people you talked about working instead of or alongside those systems in this and other fields as well. I hope one day I'll be able to support organisations and people materially and in other ways but for now this shotout is all I can give.

I also really want to thank you, thanks to you I learned that something like death doulas exist and then after some research I realised how profoundly important part this kind of care can play in people's life. And I'm a little ashamed that I never thought about all this before. Probably because the process of dying has been moved mostly behind closed door to hospitals or hospices it has become just an abstract thing in my mind. I realized how little I know about death and dying, not only in terms of factual knowledge but also I find it hard to grasp and understand the whole concept of it. And I find this so ridiculous considering that death is something we all experience once first-hand and many other times when losing our loved ones throughout our life.
I first started typing some questions but then I realised there would be probably overwhelmingly too much of them, it's like I want to know so much but don't know where to even start So instead I wanted to ask if you know some resources in the form of books/websites/anything that could help me fill those gaps in knowledge and satisfy my curiosity

[Heather]

I also really want to thank you, thanks to you I learned that something like death doulas exist and then after some research I realised how profoundly important part this kind of care can play in people's life. And I'm a little ashamed that I never thought about all this before. Probably because the process of dying has been moved mostly behind closed door to hospitals or hospices it has become just an abstract thing in my mind. I realized how little I know about death and dying, not only in terms of factual knowledge but also I find it hard to grasp and understand the whole concept of it. And I find this so ridiculous considering that death is something we all experience once first-hand and many other times when losing our loved ones throughout our life.

Right?!? I can't tell you how many of us -- probably the vast majority of everyone -- experience this this way. It's so common, especially in Western cultures, for death and dying to be avoided, hidden, unspoken, sanitized, and made mysterious and abstract, like you say. It's not just you, I swear. I've been pretty surrounded by death since I was so little, and I'm probably more than half way through my own life by now, and yet I am learning so, so much in my course and my reading.

Which leads us to your asks about reading! Happy to suggest a couple things. My favorite thing I heave been reading in my course is a book called "Die Wise: A Manifesto for Sanity and Soul" by Stephen Jenkinson, a longtime palliative care provider. He's a beautifully lyrical storyteller, and he just treats all of this with such reverence, love and insight. I think it's so great.

In an equally educational but lighter treatment, if you haven't ever read any of Caitlin Doughty's books -- or seen her videos: https://caitlindoughty.com/videos/ -- I strongly suggest them. She's charming and smart and knows so much.

I haven't read this one yet, but a bunch of people have spoken very highly of the book "Being Mortal" by Atul Gawande, too. You can also find a whole bunch of book suggestions at The Order of the Good Death's website: https://www.orderofthegooddeath.com/res ... eral-death

[Andy]

Thanks a lot! I surprisingly found several of those books (unfortunately not the first one) in our local library so I'm excited to start reading

And I wish you all the best in your course!

[Heather]

Thanks so much!

Which did you find? I'm curious!

[Andy]

Of course
There was the one by Atul Gawande, one by Caitlin Doughty and out of those recommended in the link you shared I've so far found two by Kathryn Mannix and one by Megan Devine (but I have to wait some time before I can borrow those). So I'll start with Being mortal and see where it'll lead me and how challenging read it'll be

[Heather]

I'd love to hear what you think about the Gawande. I hope to read it soon, too!

[Andy]

I don't know if you'd prefer just a few words or a detailed review so I'll keep it short but if you want to, I'll be happy to talk about it more

So, in short, I really liked the book. I loved that it told many real stories, I really appreciated the way these stories were connected with a lot of research and data, I'm grateful for the insight into some things that some family members have been going through or even into some of my own experiences (even though I'm afraid a lot of the options discussed there are available only to those who have loving families and a lot of money).
But what left the strongest impression on me was solely seeing that someone wants to tell these stories about end of life and by that sends the message that they aren't something we should be afraid of but rather something that there is so much to learn from and most importantly that even though these stories are emotional and often can be sad and full of pain, they don't have to be devastating and purely negative, if you know what I mean.

So thank you so much for the recommendation! I've already started reading another book from the list

[Whispermae]

Hi Heather,
If it's okay, could we have a chat about death and dying? I need to talk to someone.
Thanks a lot

[Nicole]

Hi Whispermae,

We've reached out to Heather to let them know that you want to talk! Please take care.

[Heather]

Hey, whispermae. I’m happy to talk with you.

When you’re next here, fill me in and we can get started. <3

[Whispermae]

Hi Heather, would it be okay to talk one on one?

[Heather]

Sure. I am mostly not at work this week save with office work because I'm trying to get some rest, but if this is time-sensitive, I can schedule a time in the next few days. When is good for you?

[Whispermae]

Hi Heather,
Next week is cool too. Please tell me when you're free.
Thanks