Completely Scary Topic: How Do We Die?

In addition to Atul Gawande's articles, book and film on Being Mortal, I found these two articles illuminating:

How Doctors Die

It's Not Like the Rest of Us, But It Should Be

By Ken Murray

November 30, 2011

http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die/ideas/nexus/

Doctors Really Do Die Differently

Research Says That More Physicians Plan Ahead, Reject CPR, and Die In Peace

By Ken Murray

July 23, 2012

http://www.zocalopublicsquare.org/2012/07/23/doctors-really-do-die-differently/ideas/nexus/

Learning more all the time, Stephanie

Okay, I wonder if I shut this topic down when I wrote last week.

About the time our conversation stopped flowing, yogi was sitting with her dying mother and Noni was wondering about when to stop ineffective treatments.

Since then, Nancy died and A Guy's girlfriend went home on hospice.

Many others have experienced progression, disease response to treatment or disease stability.

But, though disease may come and go or stay the same, life continues to flow and those we care about continue to sicken and die. Sometimes we're the ones going through that crash course in life and death.

I wonder how others feel while witnessing the decline and deaths of loved ones?

I experience awe. This is so much bigger than me. It's similar to how I feel in nature or prayer. Humbled. Sometimes the awe is awesome, sometimes it's terrible. It's certainly awe-inspiring.

When I realize that I too will die, that I'm going to lose everyone and everything I love, I tremble. Death is certain. What's optional is whether we turn to face it or try to hide from the inevitable.

Here's a poem:

Self Portrait

It doesn't interest me if there is one God
or many gods.
I want to know if you belong or feel
abandoned.
If you know despair or can see it in others.
I want to know
if you are prepared to live in the world
with its harsh need
to change you. If you can look back
with firm eyes
saying this is where I stand. I want to know
if you know
how to melt into that fierce heat of living
falling toward
the center of your longing. I want to know
if you are willing
to live, day by day, with the consequence of love
and the bitter
unwanted passion of your sure defeat.

I have heard, in that fierce embrace, even
the gods speak of God.

-- David Whyte
from Fire in the Earth
©1992 Many Rivers Press

Sending much love and hopefulness that this topic will experience new life being breathed into it. And, if it gets too intense here, come on over to the Dying and Death topic. It's a scary topic, but we really aren't scary people.

more loving kindness this morning, Stephanie

Hi Barbe,

I do believe that the dead live on in the hearts and memories of the living (they sure do in mine).

I'm also willing to believe (having personal experience) that the so-called dead remain aware and connected to us, but that they must journey on, so it's not fair to hold them back with my personal, earthly needs.

And, having had a NDE (near-death experience), I believe death is a beautiful and happy place where I will reconnect with Love. I hope to connect with my deceased loved ones too. That's why I've done so much forgiveness work with those who loved me but harmed me while they were alive...I just want to feel our shared love, not old hurts rehashed.

I was using the word lose and lost as in a physical, material way for when I can no longer take someone's hand, hear their living voice, feel their physical presence at significant life/family events. First holidays without loved ones in physical attendance are challenging. They are so missed!

Being able to touch, speak, feel, hear is why I continue to make memories for/with those I love. Knowing I am mortal, I am sure to embrace them, say their names, tell them how much I love and appreciate them. These artifacts may live on in their hearts and memories, even if they have no sense of connection with the dead or life after death.

When I am dead, I won't have those physical/material ways to stay connected. But I believe our connection spans the life/death threshold.

Just my personal experience.

Sending much love, Stephanie

Good morning,

(Hi Barb )

I'd seen that article on how doctors die several years ago, it confirmed my suspicions and strengthened my resolve in the choices I'd made. (non-assisted suicide is my choice - we'll see what I can get away with)

My family had 5 deaths in 2 years and each one was different from another. Some of the people chose, some had others choose for them and one was unexpected.

For me, being in a hospital is just like being in jail, in that your freedom is taken away from you. Simple freedoms, like breathing. If you're in a hospital they make you breathe through a tube. After my double mast, a nurse literally tied my feet to the bed and set the alarm on the bed to make sure I wouldn't try to get up on my own. I could barely raise my head let alone try to move my whole body. It never occurred to this nurse to have the opioid pain medication adjusted so that I could stand up on my own. Just tied my feet to the bed!

Hospitals, doctors and nurses are far too extreme for me. I'm much more laid back and carefree and willing to accept the consequences of my actions. For me, QOL means not having to breathe through a tube as I die.

I have a horror story about hospitals and my younger sister's death that I'm not sharing on purpose. Please don't think lightly of the examples I gave, they're "polite" examples.

I think we're very fortunate to be able to choose.

cb

PS

Stephanie, Thank you for sharing the video for Being Mortal. I hadn't had a chance to read the book. I know the story and book were very popular and I'm so glad. I don't think enough people realize the limitations of modern medicine and because of that, they fail to plan. For me, being goal oriented, the death I have planned is just another goal to achieve. Some goals in life I've achieved, some not. My goal in dying is a peaceful death in solitude. Fingers crossed that I do it right and that nobody steps in to muck it up.

cb

Barbe,

I never thought of hospice care as being in a hospital, I've always pictured home hospice. Hmmm? I wonder what that's like here? I'll have to go have a look. Thanks for the info.

That nurse thing wasn't as bad as it sounds, I was so out of it on drugs that I didn't even notice she'd tied me down for many hours - like 12. Fortunately my doc was the next one in the room and took care of things for me. I just need more control and freedom than a hospital setting has ever offered me.

cb

UPDATE: There is a non-profit hospital in my area that offers several Hospice Houses. They also say that

As (name deleted) Hospice is a nonprofit, no one is denied care because of inability to pay.

cb

hello all

50's girl, I would assume Nancy was on a regular oncology floor but under hospice care. I am guessing she would have been admitted for pain management. I do not believe hospitals require a designated area for that. I agree with you that it would appear the last couple of days appeared peaceful with the pain being managed with Iv pain medication.

Take care

Mary Anne

As always, I learn when I read this excellent site. Thank you to all the wise ladies. In the last month I made it to Remission. You know I was looking for NED for 2.5 years. Strangely enough it was told to me 6 days before the meeting with the Estate Planning attorney. I now have all legal instruments necessary signed sealed and delivered to my Executrix. There are more things to do.

I just wanted to add my philosophy. Live each day with joy and love for your family and friends. People recognize authenticity. So whether you do or don't get all the letters written and certain songs recorded, they will know the love you have for them. You cannot hide the truth. Go hug them anytime you see them. All we have is today. I cannot answer all the questions about death...I just know that my religion encourages one to "Fear Not". I am at peace and wish for all of you the same. Carolyn from Music City

Blainejennifer, you want to know, how does it go? For the family and friends that I've been with in hospice, after all possible therapies failed them, it has been a gradual decline of the body, managed pain, and passing in their sleep.

For our beloved Nana (hubby's grandmother), she was slowly dying of Congestive Heart Failure, and her kidneys were failing because of it. She started hospice late January and they helped with her medications and supplies. She became more tired each week. She was moderately alert on Easter Sunday. By Tuesday, she wanted to go back to bed early. On Wednesday, she didn't want to get out of bed. She slept most of Thursday, Friday, and Saturday. Saturday early evening her breathing became irregular, and she stopped breathing Saturday around 9:00 pm.

For my friend Ann Marie, the pain from mouth/throat cancer was more severe. She was doing well in August, holding court in her home. She started hospice in September. Many medications were tried, but the pain could not be controlled. She decided on palliative sedation. She slept through the last week of her life. (Edited to add: She died October 5.) Palliative sedation is a controversial choice in some circles. I am not recommending it for anyone unless they have severe, uncontrolled pain.

For my friend Lori, she is nearing the end of mbc. She has extensive mets to brain and spine. She has lost her sight and her speech. She no longer actively eats or drinks. She had been given food and water by others, but that is declining as well. (Edited to add: last Tuesday I helped her drink two cups of water, but Wednesday she didn't want any water. I don't know if hubby is still able to feed her this week.) She has lost a lot of weight. She doesn't seem to be in pain unless her Husband tries to move her. Today she opened her eyes several times while I was with her. I'm not sure if she understood when I spoke or sang to her. Once her lips seem to move, but no words came.

For you, Blainejennifer, hospice will guide you through the process, helping you with pain, and managing your symptoms. It sounds like you want to be more prepared than your parents were. An excellent blog is that of Sherri Fillipo, (thank you Stephanie for introducing her to me) who recently passed http://www.sherrifillipo.com/  A former nurse, Sherri describes "living and dying with metastatic breast cancer" with elegance, and she describes the many services of her hospice.

I wish you the very best on your journey. I will provide updates on Lori if you wish, or you may look over my threads on my friend: https://community.breastcancer.org/forum/144/topics/842954 

Mominator 

I was with each of my parents when they drew their last breath.

Dad had prostate and bladder cancer. He was never really in pain. He stopped being able to walk. He went to his bed, in the assisted living facility, and hospice came in. He wore a diaper and had nurse's aides in throughout the day. He ate less and less, and finally refused food and water. He never wanted pain meds. He was pretty aware and lucid up until the last few days when he slept more and more. He just faded away. His breathing got shallower and shallower. Occasionally a few days before he died, he would have some kind of startle reflex, and would try to put his arms out like he wanted to get up, but that subsided, and he just slept more and more and finally just stopped breathing. He was 93.

Mom lived with me for 8 years after dad died. She was an invalid who had a stroke, but she was mentally alert right up until almost the end. About 3 months before she died, she stopped being able to walk. She had used a walker, and was able to basically stand, turn around, and sit - to be able to use a commode or wheelchair. When this stopped, we got hospice in and a hospital bed. She wasn't on any medications or in any pain. She too just got sleepier and sleepier. She still had an appetite right up until the last few days. She had congestion in her lungs and ended up gasping for breath the last day or so. She was pretty unconscious, and didn't seem to be suffering. She was 95.

The most wonderful and amazing thing happened the day before she died. She was pretty much in a coma, and I went in to check on her. She opened her eyes, had the most beautiful smile, and said "George!" - which was my dad's name. It seemed that she was with him and wanted to let me know.

I love these stories...my best friend told me a story about her sister who died of cancer (not BC). She said she was given 6 months and in the final hours...she was heard saying "not yet John". John was her husband that died 1 year prior to her death. All of her children had not made it by the house to see her in those final hours. After the last child had visited she passed.

DivineMrsM, thank you for your kind words. It's nice to meet you officially. I've seen you on some other threads, but we've not had a chance to talk to each other. I like your most recent photo, really lovely.

Although the funeral or memorial service is for the family, you may want to plan it with your family now. Nana did not pre-plan her funeral mass, and we were scrambling to get the details that would honor her choices and favorites. We wracked our brains trying to remember favorite songs and passages from the scriptures. Fortunately, the rest (casket, plot, engraving on the headstone, etc.) were already done.

Ann Marie did pre-plan her funeral right down to the songs and scriptures. She was a cantor and choir member. I played flute for her funeral.

Barbe, your experiences of less than a week in hospice are similar to many others. Most people wait until the very end before they use hospice. Hospice is available for those whose conditions are expected to be terminal in six months or less.

Blainejennifer, I suggest you ask your doctor to let you know when to call hospice. "Hospice is special because it concentrates on care, not cure. It enables people with a terminal illness to make decisions about how and where they want to spend the rest of their lives. Hospice Care treats the whole patient. The family is viewed as part of the unit of care. It emphasizes pain control and living life fully." from https://hospicecarecorp.org/frequently-asked-quest...

Still, I hope you have a while before you need hospice.

Mominator

DivineMrsM, I just realized that I was so focused on the funeral service (which means a lot to me as a musician but of course not to you), I didn't fully appreciate how much you've done. Please forgive me.

Wow, cemetery plot, cremation, a will, living will and health care power of attorney, even your obituary, that is a lot of planning! That planning is such a blessing to your family.

My parents are both in their 80's, in poor health, and are not planning. They have wills, and are each other's medical and financial POA's. That's all.

We the children have tried to get them to add a back up person(s) to the financial and health POA's, and our parents refuse to discuss it. They have not done cemetery plots, casket, certainly not their own obituaries. My father "doesn't want to talk about that stuff" and my mother doesn't want to argue with dad, nor make a decision without him.

I tried to point out that after one of them becomes incapacitated, the other will be making all the decisions alone, and most likely in a very stressful situation. And if both of them become incapacitated, such as a car accident, we will be making decisions without their guidance. My siblings and I are very frustrated.

Thank you for sharing.

I have started the planning process for the details for me. I have a rough playlist, should there be a memorial service (I am not going to dictate that, I will just make some suggestions). I am very much opposed to making everyone look at my dead body so that isn't going to happen. I want my daughter, husband and my mother to see me after I have passed (at home, I hope) to make the reality real for them, and that is all. I don't want to be embalmed and I do want to be cremated. I am planning to visit the cremation facility soon, to see how they do business and to ensure that they allow witnesses (I would like *someone* to be sure that my body is not just stuffed in a closet somewhere!). I am considering commissioning a potter friend to make me an urn. I have a draft obituary but it needs a lot of work. I have some memorabilia here at the house that needs some work. I am in the process of consolidating and cleaning up my "digital" mess as I have a couple of computers and a handfulll of external drives with stuff all over them that I either want saved or i specifically don't want saved but it is a mess.

One particular topic has been on my mind lately -- my DH and having him near me in my final days. He has been such a comfort to me. I want him by my side every moment. And then again, I DON'T. I don't want his sweet memories of us to be forever tainted by watching me die. I suppose almost every couple's relationship ends by watching the relationship die (in case of divorce) or one person suffering from the partner's death. I worry that my final days will be lonely, no one wanting to see me, sick and frail, in bed.

Anyone have thoughts about your spouse/SO and time spent together at the end? Who gets to decide? I try to giggle when I think of me calling out to my husband, "I'm almost dead -- hurry up and come hold my hand."

But I'm seriously thinking about it as well.

Ronda, I also wonder about the same and feel like I hate to mar the memories of us by having my DH watch me die. It eats me up but I am also terrified of being alone.....