Dying Well

@edsutton: As an End-of-Life doula, and as a person who has been diagnosed with Stage 4 metastatic melanoma, you ask some very important questions. These are topics that many people tend to avoid yet are vital to consider when faced with terminal illness, to help ease the transition not only for the individual involved but for their loved ones. It's important to makepersonal wishes known and respected, while being as prepared as possible for understanding the dying process. To that end, I highly recommend the book Nothing to Fear: Demystifying Death to Live More Fully by Julie McFadden, RN ("Hospice Nurse Julie").

I'm open and interested in hearing more about the personal things you've mentioned in your post and hope the responses here remain respectful. One thing that I feel needs to be underscored in terms of religious or spiritual beliefs, is that it is essential to honor the spiritual practices of the individual(s) involved when it comes to end of life decisions and to refrain from offering ones own beliefs upon others.

Are you ready to share or would you like more time?

I will add i took a death and dying course as i completed a certificate in Gerontology. It covered many religions and personal beliefs on the end-of-life questions. Most of us sign forms before surgeries to ask who we want to speak for us if we become unable to speak for ourselves. I was required to write my own obituary in my class. It was matter of fact in its context and realistic as to planning is good as once you heal and abilities lessen. If any family rituals are present, your family is free to make choices if nothing is written down and notarized.

@grammato3
Susan-
Thank you for your response.
I intentionally am not mentioning my own questions right away because I hope this will be a rather broad discussion, and I want to hear a range of concerns, not just mine.

In general, I believe if we die unexpectedly in our sleep, or of a fatal accident, the problems of dying are fairly simple.
If we die of an illness that kills us in a few weeks or months, it's still fairly manageable at home or in a nursing facility.
If, however, we go through a long period of disability, sudden or gradual, management and cost can be very difficult both for the person dying and their companions.

So, given these three possibilities, I'd like to hear about how folks have planned for them and what workable solutions can be shared. A few folks have unlimited resources, so they may not fully understand the questions, but for most of us finances play an important role, requiring creative responses to limited situations. I'd like to hear about them.

I don't wish to deny people their beliefs, but my concern here is more about the technical, physical, managerial, biological, financial and real estate questions, which presumably must be attended to to allow space for the spiritual practices of choice.

@edsutton In 2015 I received a diagnosis of an ultra-rare kidney disease, with fewer that 50 people in the world having this condition. At that point, I chose to preplan my end-of-life decisions, including prepaid funeral, writing my obituary, taking care of legal matters [example, durable power of attorney, medical power of attorney, etc.] Being a very logical and straightforward person, there was no emotion involved, just the great desire to have everything down, in writing. Have I modified things since then? Yes. No longer a single person, I have included my husband on all pertinent decisions.

The peace of mind that "dying well" has given me, is immeasurable. While my health situation is tenuous, knowing that all plans are in place is a great source of comfort.
Ginger

@edsutton This is certainly something I've given a great deal of thought to, even before my diagnosis. When my dad died, shortly after I became an EOLD (End of Life Doula), I realized how helpful it is to have premade funeral plans in place as I felt it would spare the family the additional grief and burden of having to make those plans during an already heavy emotional time; not the least of which was outlay of money as funeral costs can be prohibitive. It was not something my husband felt comfortable exploring, so I set about investigating options and associated costs. I discussed my findings with my husband and family before settling on the decision and have set up a monthly payment plan that will be paid in full a year from this month; the arrangements are for my husband and myself and honor each of our wishes. We had previously gotten all of our documents in order: wills, medical proxies, finances, etc.

When I got my diagnosis, I gave myself time to absorb the information, do research and get my mind, body, and spirit aligned - including speaking to a rabbi with whom I have maintained dialogue for my spiritual needs. I have a document I've shared with one of my daughters-in-law on some specifics for end of life, memorial preferances including songs I like. I am myself a hospice volunteer and am fortunate that their service includes in-patient care so have discussed that option as well. As I was quite ill over the winter I had also raised some concerns with my husband about not wanting to prolong agony - for myself or loved ones - if I become aware there is no further medical hope and I provided what those options might be and how I strongly I felt about them. Medical situations change and I realize a death plan cannot be strictly adhered to far in advance; there is always room for flexibilty and decision making while I have the capacity make my own choices. In the event I do not, there is documentation in place to have my wishes be known....and respected.

I have kept up a journal of sorts, mostly fond memories and photos, for my grandchildren, to serve as an ongoing legacy of life and love, happy moments we have and continue to share. I've already written letters and given keepsakes to each of my three grandchildren to be opened at a various milestones in their lives, whether I'm here to share that time with them or not, because I want them to know I will always be part of their lives.

@grammato3
Susan-
This is beautifully expressed.
It communicates the feeling of looking clearly at reality when it is not easy.
Thank you.
Ed