Completely Scary Topic: How Do We Die?

I watched both my parents die in a hospice ward in a hospital and that's how I want to go. There are bodily functions (ie. suctioning of throat fluids) that were done to ease discomfort that I don't think my DH could handle at home. Changing of catheter bags and diapers as well. I want my kids to remember me alive. My Mom took a week to die in hospice and it felt like forever. My Dad took 4 days and that felt about right. I asked my Dad if he was scared of dying and he said only of the pain and I was able to assure him that we would make sure he was pain-free. They both were kept pain-free. No IV's feeding nourishment, just morphine for comfort. They both died peacefully.

I told my DH I don't want a "death-watch" around my bed when I'm unconscious. If the kids want to see me then they can while I'm still "me". I don't want my grands (5) to see me in a bed either. I might feel differently on that as the time gets closer.

A friend here on bco went into hospice and watched them put in the IV that would keep her pain-free as she died. That kind of freaks me out. She had asked about pain and they told her that yes, it is painful as your organs start to shut down. They let her x-DH bring in her dog for a visit.

The disposal of my body if I died at home is another matter. Would I want my DH to die in our bed and then watch him be zipped up and taken away? Not really......

This last Christmas I spent the second time as close to death as ever. I still have moments of wondering why am I here and how is it I didn't die? The first time was 2014 when my bone marrow got eaten and my hemoglobin was 5. I had no energy and a very high heart rate. Hard to do anything when you have no hemoglobin to attach oxygen to! It would have been a peaceful death though very tired and sleepy. I had a fair amount of bone pain and that was relieved by meds. Then the turn around with afinitor and 20 transfusions. Back to life. This last Christmas herceptin and doxil failed and the cancer caused a bowel obstruction that backed up all my fluids and caused abdominal pain, nausea and vomiting. The N/V was relentless and MISERABLE. Honestly it's a horrible way to die. I ended up in the ER twice with intractable nausea and dehydration just heaving. I cried. I was besides myself with misery my kidneys had started to shut down. Zofran and pain patches barely worked, constipation and explosive vomiting scared me. They finally allowed me to give myself fluids at home, then added faslodex and I started to turn around. It took weeks to turn the corner.. weeks of muscle weakness, shaky unable to eat much, feeling full and barely able to write a sentence my hands would shake. The faslodex is working and now I can eat more, drink, walk, write legibly and feel more alive then dying.

I used to be a nurse so I have seen people die. I am not scared of death. The dying process can be scary. Dying of liver failure and kidney failure is mostly peaceful. You get more and more toxic from organ failure and your labs get wonky and you fall asleep. There is pain associated with some systems/ organ shut downs and that can be controlled with fentyl patches and other meds. Stopping eating and drinking is also an option. Dying of a bowel obstruction is miserable because everything backs up and vomiting bile and secretions daily sucks. Brain mets is no picnic either. I have seen a few brain mets patients with no pain. I opted for death with dignity meds and paid 3, 068.00 for the script. My Catholic health insurance wouldn't cover it. I can not revisit another 2 months of puking and 24/7 nausea. My PCP has graciously offered to come to the house when it is time to take the med and be there to help me and my DH. I won't have the kids there. When faslodex and Ibrance fail I will take the DWD meds and die a peaceful death. My DH is fine with me taking the meds and he know the cancer will return and the puking and nausea. He doesn't want me to go through that again. Our will is done and papers are in order. Now we wait for the last of the options to fail. Trying to live in the mean time is the hardest part.

Thank you for bringing up this topic. My family won't talk about it. We live with a dinosaur in the room! Here with others facing the same we can explore and hash out what living with cancer and preparing for death is really like.

Forgot to mention - I have a pacemaker. I just had it checked after I finished my rads treatment to make sure the settings stayed the same. The tech said "Oh, you have 7 more years of battery life left." I said it would live longer than me. Another reason I want to be cremated. I can't stand the thought of my pacemaker ticking away in my dead body.... I asked my cardiologist years ago what would happen when I died - would the pacemaker keep my heart beating? He crumbled up some paper and said he couldn't make the paper have a heart beat and it would be the same with my heart. Huh? If my heart is ALREADY beating (unlike the ball of paper), how would the pacemaker allow it to stop.

My 2 cents (without reading any of this chain so apologies if it's been shared)

When my mother died in 2009 of metastatic breast cancer mets to the liver, my sister immediatly ran to the library to learn about life after death. She stumbled upon Echo Bodine's book Echos of the Soul and that book has been read by both of us now, over 3 times each. As I'm living almost 3 years with MBC, I've sorted out my living will, last will and testament, cemetery arrangements as well as my husband's who is the most handsome, picture of health. It's always so taboo to talk about death and the dying process. I've watched both of our parents take their last breathe and in hospice, Barbara Karnes "Gone from my sight" is an incredible resource to help take the fear out of dying. My goodness, we start the dying process the second we're born so why is it so hard to discuss? We know that ultimately we are all going to die. I learned all of this from my grandmother, Aunt and mother who all died of MBC. I'm the youngest in our family with MBC at 51 (I was 41 when originally diagnosed) and hopefully the last. Although with 4 of us having tested positive for the TP53 (Li-Fraumeni Syndrome) and some of us CHECK2 gene mutations. This puts my 24 yr old daughter, my sister, and her 15 yr old son at a 93% lifetime risk of several primary cancers, not just breast cancer.

Hi Tracy,

Just a note - I too have one of those rare cancer-causing genetic syndromes with a 93% risk of cancer. It's been life-changing to say the least!

I'm the first and only one in my family to have it and I chose not to have children, so I've had to find my way alone - better now that I'm connected with others also affected by it.

It still blazes through my life like a wildfire and I find beauty in the charred remains, the rising of the phoenix, the beauty of dawn.

And, like you, I've learned first-hand that we're all going to die. Each day, each moment, each breath is so precious and is a gift, not a given.

Sending a warm hug from California, Stephanie

I think as our disease progresses and we are bed-ridden and in pain, we will consider DWD. While we're still working and "living" it may feel like a far away option, but I've seen friends here on bco that have turned to death within a couple of weeks. One week they're posting Thanksgiving pictures and the next thing we know they have passed. We might not even get to have the choice of DWD.

barbe, you are so right on all points

Great article by Atule! I just read the whole thing on my computer at work. Very down-to-earth and how we dealt with both my parents dying in hospice and how I hope to die. I don't want my family to see my body leave the house in a body bag or stretcher. I don't want my grandchildren to remember seeing NaNa dead in our house. A hospital/hospice ward is the place for someone else to take care of my bodily fluids and functions. People forget that all your muscles release upon death and that includes bladder and bowels. It's not pretty. All I want is hand-holding and the aura of love. I don't want to burden my family with being responsible for my well-being at the worst possible time. How the heck would they deal with it after I'm gone? We have the technology and the procedures to keep good memories flowing in a hospice room as I've experience with both my parents. I'm glad I did.

Maybe my protracted dying experience would be helpful here?

Four years ago when it looked like I might die soon of pleural mets, I formed a "circle of care", a group of close friends and family members, to care for me. I don't have a partner or offspring who might assume primary caregiver roles and I was concerned about burning out my carers or suffering disjointed care. Share the Care and LotsaHelpingHands are good models for establishing caring groups.

I chose circle members, mostly women, familiar with caring for the ill and dying and also with dead bodies.

My hope is to die at home under hospice care, then to have my body prepared for a home vigil before a funeral.

Where I live, this is very common!

There are several long-running hospices, Final Passages originated here and The Threshold Choir began nearby too.

Final Passages trains people to care for the bodies of their dead loved ones and The Threshold Choir sends small groups to sing at bedsides of the dying.

Members of our group have dealt with the deaths of parents, partners, siblings and friends. I've worked with eight different members to care for the bodies of our dead friends, so I have a deep trust about their abilities to work well and work together to hold a calm and loving space.

My own home is a lovely, healing place with lots of green views out the windows, peace and quiet. It's a great place to live and will be a great place to die. It's even a good-enough place for a home after-death vigil, though it's out in the country.

The local Threshold Choir has come weekly for the past four years and their songs have become my refrains...Here's one song, My Grateful Heart. If you'd like to find one in your region, be sure to check the link above.

Bodily functions and fluids don't disturb me or these women. My sister and I were well aware of the dying process when we accompanied our mother as she transitioned and were able to advocate for good pain control, but didn't treat her death rattle breath.

Dying is a labor similar to birth. It is work - physically, spiritually and emotionally. It isn't dignified, if you expect no mess, no fuss or muss. But it is incredibly beautiful and awe-inspiring to accompany the dying, especially those we love. I am grateful my loved ones continue to care for me as my body slowly fails and I trust them as I move toward a beautiful, mysterious birth into a new state of being.

A good death will differ for each of us. Yet it is our final act of life and love on earth. May it be one of healing for others and ourselves, whatever our dreams, needs or situations.

well wishing, Stephanie

From what I have observed, everyone approaches death from illness their own way. Some have acceptance of it. Some are angry or sad because they aren't ready to be done with this life. Some will be in pain. Others will have effective pain management. There are quick exits and lingering ones. There are those who prefer to die at home with no qualms, and those that want to be in a hospital setting. Some women will be surrounded by loved ones and some women want to pass without everyone at their bedside.

For myself, I will try to have a say so in what I can, realizing that some of it may just not be within my control. My father had hospice at his home and they were wonderful. A friend's mother in law recently passed, and the friend said there was such a difference when they moved her MIL from the hospital floor to hospice floor, the MIL was no longer getting unnecessary invasive treatments and was made so much more comfortable in hospice. It allowed the family to see the MIL in a calm state prior to her passing rather than hospital employees making continuous futile attempts at trying to bring this woman back around, making it nerve wracking for the family. Rather than their last memories be of the MIL in an agitated state, they saw her at peace after living a long, full life

Longterm, I read Being Mortal but didn't know it had been made into a film. Thanks so much for providing the link, I'll watch it soon.

Wow, that article, though. (Atul). A must read for anyone dealing with this sh*t-show. I have been very interested in this thread - thanks for posting. I think about this a lot. Not just about if I will know when to say when, but about what happens during and after death. I so appreciate everything you all have said. I think I approach it along the same lines as Lynne (50sgirl).

As of now, just shy of 5 years from the metastatic diagnosis, I am doing well and am currently NED, but I know this can change on a dime. Last summer I experienced my first real progression/scare and honestly thought I was headed to the end, but alas, that was not so. I think that is what keeps me from dwelling too much on this - I could barely eat a year ago, had bowel obstruction from the cancer in my intestines. As we hadn't tried any IV chemo yet, we went to Abraxane and 6 months later, scans were clean and markers are at an all time low of 5.4. I am now back on a hormonal therapy (Faslodex) and three months from chemo, still clear.

As I said before, I know that could change at any time, but for some reason, I just don't "feel it" yet. I don't think it is my time and even though I know this is incurable, I haven't given up on having a future which makes it hard for me to think about these things. I like to think that when the time comes that treatment is really causing QOL issues, that I will be okay with saying enough is enough and have had that discussion with my oncologist making him promise me to be honest with me. I don't want to just treat to treat, if that makes any sense. As far as talking about this with my husband or family - they don't want to talk about it. I have made a few things clear to my husband and my sisters about funeral expectations and such, but haven't been able to broach the time leading up to that. Wow - long ramble to say thank you for posting this - it has given me an idea of things I could be doing to maybe make it all easier down the road.

I hope that I am brave enough not to do the hail mary chemos until the end. That quality of life is what I strive for and hope to get for as long as possible. I just hope everyone else around me supports that decision.

Everyone here has shared such amazing resources. I've found each and every article here incredibly interesting.

Tonight as I sit with my mother who has limited time on this Earth, I started re-reading a chapter from Autobiography of a Yogi. It discusses the after life and transitions to the different plains of existence. While my spiritual views are a conglomerate of Christian, Hindu, and Buddhist beliefs,
I found peace in hearing about the next plane of existence when Nirvana is reached here. To me, it sounds like what I've always imagined Heaven to be: a beautiful oasis.

While it is the hardest thing on earth to watch my mother transition into the spiritual realm, I know that she will no longer suffer, and that she will be in a beautiful place, a peaceful place, and find the peace and happiness that she struggled to find here.

(But it still hasn't stopped me from crying uncontrollably, praying to God, Jesus, my dead best friend, and anyone else who will listen for guidance and being afraid to sleep at night).

Wow!

This is a well-named topic - Completely Scary Topic: How Do We Die?

We are getting a ever more complete overview, as more members contribute their/our unique perspectives and experiences.

Scary - oh, yes! We have touched some deep nerves around cancer, treatment, dying, choices at end of life, our perceptions about death. And I've read stories that have brought sadness, fear, tenderness, concern and anger (on behalf of others, not against anyone). Part of me wants to "fix it" - to provide loving kindness, words of wisdom and resources to ease suffering. Part of me knows it's better to breathe and be with the fear than to fix it.

Cancer sure pushes us up against the wall of mortality and treatment is one way to back off from the hard, head-battering fact that we all die.

For me now, the distress of my mortality is better eased by support than treatment. It's reassuring to know I'm not alone, that people care, that my dying might serve others - intimates and those who read what I write now and later.

There's a certain immortality in knowing I've touched others deeply.

Because I'm neither partnered nor a parent, I wonder if this is the how well-partnered and parents feel - belonging to a greater whole; contributing to others' lives in meaningful ways; finding it impossible to imagine not being there for loved ones at their significant life events...and for the daily connections.

Perhaps the more integrated we are into life, others' lives, the harder it is to imagine our deaths.

And, even when we can imagine our own not being alive, our loved ones often can't. Or it takes them a very long time to come around and wish us well on our journey. Or to see death as our release from suffering.

Yes, Jennifer, you chose a great title for this topic - it's completely scary!

And we're helping each other to breathe and be with scariness, so our lives are better lived in love than locked down in fear.

Sending much loving kindness for all, Stephanie