Dying Well

@edsutton: Thank you for bringing up the topic of VSED (Voluntary Stopping of Eating and Drinking). I just want to underscore this is a medically complex decision that needs to be explored and carried out fully by someone with a terminal or progressively chronic illness who is mentally competent and motivated to understand the implications of the decision and is willing to stand by them, have people to support them in their committment overseen by medical professional(s). Although the body can typically survive 4 days without water, people who elect VSED can occasionally survive up to 2-3 weeks.

I want to add that I see life and death as so interconnected that I don't feel that my death needs a particular religious or spiritual approach. Rather I try and treat practical things as an expression of my caring for others and overall ethics--like not wanting my family to be hit with the expense of a funeral. I'm in a great Death Cafe--four friends monthly on zoom--and we have started to really focus on the concept that how we want to die is also how we want to live.

@mir123 What a great idea! We learn so much from each other, as this forum continually proves, thanks to all the contributors in their willingness to openly share the questions and answers that have been revealed in their life stories. I do find myself wondering what it is that I will die from, but something that I personally find very comforting is, that life is changed, not taken away. That was what came to mind, Miriam, when you wrote that you see life and death as being interconnected. So true!
Peace,
Barb

@grammato3 that is a good list to consider. Just as an FYI, a Living Will does not stand up in court at least here in the State of Michigan! I just attended a seminar and the director of Hospice and Palliative Care from University of Michigan spoke s out end of life issues.

He did reiterative the importance of the POLST/MOLST. He also said do not get hung up on what specific procedures you want performed or not performed. He said what is more important is the generalities. He said 75% of the people that come through their hospital end up dying there. And it never fails when a crises comes it is at 2 am and trying to get hold of family or even your Medical POA isn’t feasible for most! So let people know I. General, I do t want to die in Intensive Care hooked up to God knows what, all alone. Let people know I want to die at home in my own bed, surrounded by family who are singing or playing music and who just sit with my as my soul leaves this earth. Or I do not want to die st hone, I fo t want my family to have that memory of me dying at home, I want to receive palliative or hospice care and I want to ge jn a nice clean and comfortable hospice facility where staff is around 24/7 to make sure I am not in any pain as I prepare to die. He said having those general directives will help inform your medical team what actions to take or not to take. He also highly advised that people have a Dementia Care Plan. You medical directive may look very different if you have progressed in dementia where you do not know it recognized any of your family members and your quality of life had significantly changed due to the dementia. He said as dementia cases will triple in the US in the next few decades more and more of us will develop dementia before a medical condition takes us. He advises being prepared for both scenarios! There are lawsuits going on when someone has a medical directive that was made before the Dementia came and now one’s wishes may be significantly different!

For those following this thread and have questions about terminology or are curious to learn more, there are national organizations dedicated to the topic, such as https://deathwithdignity.org/ and https://compassionandchoices.org/

Please note: I am providing this as reference and not as means of advocating.

I have Palliative care, Home Healthcare and Hospice care all together, combined from North Western Medicine, here in IL.

My husband doesn't want me to be in Hospice Program at all. Mainly because he doesn't know how to deal w my death, if it occurred at home.

Re: Lawsuits due to preexisting undiagnosed Dementia
Under Obama are all pre-existing conditions, whether they are diagnosed or yet to be diagnosed, cannot be denied of coverage by any Healthcare Insurance Companies anymore.
This is what my lawyer told me. Check it out for sure in your state.
VJ

Difficult subject for sure… many of us do the basics, legal/ financial, etc.. but the issue of what else is different with each person…I have seen many people benefit very much from hospice care, as few people are into ending their lives on their own… sending hugs to all who are dealing with how to sort this out.

@edsutton Thank you for initiating this discussion. It is so helpful and rewarding to interact with others who are willing to address the inevitability of death.

Quick comment that comes to mind: Most folks in healthcare say too many families wait too long before going the hospice route... and consequently miss out on the helpful benefits available for / to the patient and the caregivers.

I kept my wife at home while on hospice, with me as sole caregiver / POA. We received: routine care product deliveries periodically ; a hospice medication kit; weekly nurse visits; twice weekly CNA bathing service; related educational materials... including the end-of-life stages and care; quick responses to questions that arose on occasion; support suggestions for me and the family; etc.

Well remember how busy I was throughout my caregiving stint -- so many TASKS of daily living, other things to keep ahead of, concerns, worries, safety, my own physical / emotional health, getting rest / sleeping, appointments, etc. BY NO MEANS am I saying that hospice made all these magically "go away." NO! But it did help a little... and sometimes, a little feels like more. Also, the "sense of sharing the load" gave me a kind of therapeutic boost in spirit.

Wishing all the current caregivers the strength and will needed to remain healthy, and as positive as you can be, to do the job to the best of your ability... not PERFECT! Don't believe that's possible. We have to forgive ourselves for our mistakes, learn from them, ask others for help, find ways to get the job done easier, laugh with your loved one when something funny occurs, figure out a way to get away from the gig for a bit every week, and realize inside that if your LO was still herself / himself that they would ADORE YOU for all the work / sacrifices you've put yourself through for them... remember that.

All the best!

/LarryG

@mir123

There is a wonderful drawing by Goya, drawn when he was 80 years old. It shows an old man with two walking sticks, holding tightly to them, but taking a step forward. The caption says “Aun aprendo,” - I’m still learning -
Another drawing, possibly done the same day, shows an old man in rags on a swing, swinging vigorously, grinning from ear to ear.
I don’t know what Goya meant by these drawings, but I enjoy them very much.
They remind me how, growing old after a difficult, painful life, Goya learned new graphic techniques and painted until he had a stroke at 82.

I was very moved by what Miriam wrote:”I want to add that I see life and death as so interconnected that I don't feel that my death needs a particular religious or spiritual approach.
…I'm in a great Death Cafe--four friends monthly on zoom--and we have started to really focus on the concept that how we want to die is also how we want to live.”

In my understanding I don’t think of my personal life/self as living on after death.
I think of life as made of many interleaving layers of individual lives, sharing our many abilities, loves and needs to make our shared and individual lives possible.
This view imagines Living as Contact.

We often speak in terms of Life as Measurement….actuarial tables, for example. More years, more money, more power… Perhaps we imagine Life as Measurement a bit too often.

Thinking of Living as Contact leads me to the real people, of many generations, who have touched me every day in ways that shaped the course of my real life. Sometimes big things, sometimes little, sometimes wonderful, sometimes very difficult. Some of them I wanted so much to change, as they wanted to change me, but we could not. Sometimes it was a contact from which I still rebound, but it was very real.

Now all those layers of older generations are gone, and I’m beginning to witness the deaths of fellow members of my layer.
Watching as my layer “peels off” shows me that some day I will also peel off.

But I’m still learning.
I’m learning that the time during which I can share with others is extremely precious.
I’m realizing that I want to learn more about sharing, and perhaps be less driven to always learn more and more. Maybe I can learn to listen better.

My friend Cathy is very ill.
I want to play music for Her, not the music of my biggest ambitions.
I want to give the music I can play that is best for her.
And she will listen for me. She will help me to share.
This has always been my ambition.
It’s just taking me a while to find it.