A place to talk death and dying issues

JustJean

Stephanie,

I just watched Extremis. Thank you for adding it to the knowledge you have shared with us.

On another note, my ex-sister-in-law just got the drain put in her abdomen that you have talked about. I have not talked to her directly but I sure hope it helps her. I cannot thank you enough for mentioning it. It's because of you that she had the knowledge to ask her doctors about it.

My partner and I are off on a cruise next weekend. We'll have three stops in California - San Francisco, Santa Barbara, and San Diego. I have spoken to her of you many times. I wish you were well enough that we could meet. But I'll carry you in my pocket and my heart the whole time. This weekend we are going to a music festival and I'll be drumming for you. I hope you feel it coming from Ohio.

With love,

JJ

Fitztwins

Just spent some time reading all of the recent posts. I read a lot about dying. The last piece I read was about the latest research on what they think the brain actually does when other things shut down. That gave me peace. I plan on reading the books mentioned above. Thank you.

I have often thought about talking to hospice now, just to be ready. I have my 'death box' ready with all of our financials, life insurance, wills, and I am starting to add letters to some love ones.

This summer I had what I thought was a huge progression and felt that the other shoe had indeed dropped. Everyone tells me how brave and strong I am. It's easy to be brave and strong when you are doing well on treatments and your scans are stable.

I didn't feel brave or strong this summer. I felt alone and scared. The bone pain I had (fracture in femur) was also another wakeup call. I thought is this what I have to face in the future? My empathy for those with fully involved bone mets rose to a new level. My docs were very good at getting me on pain meds. I also found out that 15 year old boys can become resentful at times when their mother was unable to walk. Little turds. One said to me "mom this is really getting old". Well Dad set him straight. I have had cancer for most of their young lives (since age 4) and have always 'pushed' through treatments, surgeries, etc.. this time it wasn't as easy.

I still struggle with home vs. a hospice facility when the time comes. I wish we could start a conversation about this.

I don't like feeling that way (alone and scared). I constantly have conversations in my head about my family and how they will be without me. I know they will be okay. I know it won't be the way I want it, but I won't be here

Longtermsurvivor

Hello Fitz Twins,

Progression and symptoms certainly give us pause and a new relationship to dying and our upcoming deaths...oh, but when?

MBC doesn't mean that we've all confronted our mortality and made peace with the universal truth that all living beings must transform/die.

Most of this MBC forum is about postponing that date with destiny in as many proven and creative ways as possible.

This topic is one of the few "safe places" to really explore the D&D reality together.

Here are two blog posts about residential hospices:

sky between branches

excerpt:

i move into hospice care on monday. i will live in a room by the lake, with my own courtyard, with a view. i will pick the little things that make me feel at home, and they will come with me. maybe i'll feel tremendously better once i am in there? maybe i will just feel safe, and ready. but it is the right place for me. it is the right next step for me, and i hope you, my lovely readers, will understand that though it might be sad, it's also a time of empowerment, strength and of letting go for me to live the final stages of my life as i would like them to be lived.

Hope and Courage

My local community doesn't offer a hospice house, but the nearby San Francisco Zen Hospice Project has a model program initiated during the AIDS crisis.

Very warmest healing wishes for you, Fitz Twins and all here, Stephanie

Longtermsurvivor

Hi Just Jean,

Wow!

I'm so touched that reports from Rosevalley and me helped your S-I-L toward improved health care. The indwelling drain for ascites is so much better than those paracentesis procedures for many, many reasons.

Wishing her well during this new phase of living with cancer.

Just Jean, happy you'll visit some beautiful spots in California and hope you can jump ship and go inland for the sheer natural and cultural beauty. The cities of SF and SB are especially awesome places to explore, but the countryside is awesome, something about the meeting of sea and cityscape. And N. California's redwoods are natural temples, even the too well-loved Muir Woods near SF.

Thank you for the powerful rhythms this weekend. Drumming camps are powerful places to be. There used to be a Taiko drumming group of women recovering from BC treatments here. Reminds me of the BC Dragon Boat team out of British Columbia - women working in rhythm together. So many beautiful initiatives have arisen from shared suffering and transcendence.

Sending special warm hugs for your partner and you, Stephanie

Longtermsurvivor

Interesting article:

7 Ways To Prepare For Death That Will Change Your Life

Get ready for some hard — but important — conversations.

09/12/2016

Anna Almendrala

http://www.huffingtonpost.com/entry/death-letter_us_57d1dfece4b06a74c9f3dc92

What's your ideal death?

For many people, a good death means having the chance to say goodbye to loved ones, making sure to let them know what they've meant to you. But, of course, no one can plan when or how they're going to die, so this communication doesn't always happen.

"There are some unexpected deaths where someone has a traffic accident, and then the family spends years looking for some sign, some message from the dead person," said Dr. VJ Periyakoil, director of the Stanford Palliative Care Education and Training Program.

To make sure that your friends and loved ones know how much they meant to you when the time comes, Periyakoil believes she has developed a solution: On September 7, she released the Friends and Family letter ― a template of seven questions meant to help prompt the kind of poignant goodbye that makes death feel a little bit easier.

Periyakoil has spent years working with critically ill and dying patients, and often finds herself acting as a go-between for spouses, or for parents and children, to communicate their most heartfelt hopes, desires and regrets. While she's happy to do it, Periyakoil realized that not all patients could rely on their doctors to carry out similar tasks.

That's why she developed and tested the Friends and Family letter, to encourage shy or reticent patients to look back on their lives and compose heartfelt messages to the people they care about the most.

The seven prompts are:

Acknowledge the important people in your life.

Remember treasured moments from your life.

Apologize to those you love if you hurt them.

Forgive those who love you if they have hurt you.

Express your gratitude for all the love and care you have received.

Tell your friends and family how much you love them.

Take a moment to say "goodbye."

She produced the letter in eight different languages to help people express their feelings in the language most comfortable for them. Periyakoil also tailors them for people currently in good health and people who have a chronic illness, which brings up another important point ― you don't have to be ill or near death to compose one.

Writing this letter is a good idea for all, not just the sick or dying

Continued at link in article title.

barbe1958

Fitzpatrick.law@rogers.com when I became stage IV and hoped my kids would show some reaction, my 35 year old son said "I don't know how to react as you've had dome thong wrong all the time!' I asked what verifies a pacemaker and Fibromyalgia he was talking about we'd he said uhhhh, headaches. No empathy there. My 3e tear old daughter doesn't seem to know concerned either. I hear you.

Here in Canada hospice is for the end days so it's a short stay compared to palliative. I want a professional wiping my butt and sucking out the crap in my throat, not family. Both my parents died with dignity in hospice.

Lita57

Hi FitzTwins, I'm going to a class in Oct about preparing for a "good" death at the Cancer Support Comm. Ctr. I'm ST IV w/bone mets in spine, pelvis, hips, and ribs; plus mets in multiple organs and muscle tissue. It ain't fun. I manage all my pain w/medical cannabis.

Everybody's saying, "Isn't it a little too soon to be doing this [going to a death class]?"

"NO!!!" I don't want to wait until I'm completely paralyzed from compression fractures (I already have 5 in my spine) and wheelchair bound to do all the planning. We have a living trust, but I will have to revise my will in terms of which brother gets what.

Right now, I want to die in my home. CA just passed the Death w/Dignity act, so when the time comes, I can sign up to swallow the barbiturate mixture (it knocks you out in about 10-20 mins and then your body shuts down w/in 2-8 hours) or I'll just have food/drink withheld and I'll go w/in a week. It's nice to have options, ha ha. My husband will have to hire a home nurse in the last days, and I've already set aside $ for that (bye bye retirement savings, but it turns out I won't live long enuf to use that anyway).

Lita57

Sorry, I didn't mean to be a total downer, but this is my reality right now. If I just had bone mets, I might last past 5-7 years, but once it's in your liver, pancreas and kidneys, and more attached to the pelvic wall, it's a whole new ballgame.

I haven't given up. I'm also going to a cancer conference in Redwood City in Nov. They will be discussing new trials for MBC and maybe I can find one. But I refuse to put my family thru hell b/c some of those trials can be brutal. And quite frankly, I'd rather just go in peace.

barbe1958

Lita this thread is about dying so nothing can be a downer. I think it's wise to prepare.

Fitztwins

You are not a downer. I would love to go to a class now. Not later. I am on my 8th year with mets, I am a realist. The glass isn't half empty or full, it has wine in it!!

steelrose

Another realist here, six and a half years at stage iv. I'm grateful for this thread and the honesty it inspires. I too just want to go in peace when it's my time. I do believe I'll know when to stop fighting.

Cheers to all...

Rose

Longtermsurvivor

Hi Lita,

I'm with Barbe!

This is our special protected place to share everything we wish about D&D...we are not trying to hold back to protect others from our reality, but rather to share what is in our hearts and minds. Sometimes light and airy, sometimes dark and dense.

Just be and we're happy to be with you.

Disclaimer, do follow the bco basic rules, but I don't think you've any snake oil to sell us.

big warm hug, Stephanie

mara51506

I completely agree Lita. I have followed this thread even pre stage IV dx. It is good to know some planning that is made. You have the space to say what you would have done without anyone saying "be positive" etc.

I am a new metster with a shitty dx and when I am ready, I will definitely look into hospice. For me, it is entirely a crapshoot how long that may take. One week, or years down the road. No one can tell me. For now, will do my rads to the brain, see what else my MO, RO and all the other people want to do. Hopefully when it is time, my province will have Dying with Dignity more ironed out as I do not want a long slow death either. Who knows what will happen. I still have my hat off to Stephanie who has been able to embrace her experiences even as they are physically painful. I certainly am not at that point yet but hope I could get there someday.

Lita57

Thanks, Ladies!

JustJean

I hope that when my time comes (may it be a long time from now) they have some Death With Dignity laws in my state of Ohio. Right now, that would be my first choice, but we do not have the laws. If not, then home hospice until it's time to go to the hospice house or perhaps sell my little house and move to a state that has DWD laws.

I don't want my son or partner doing the personal things either. I don't want them to remember doing those things. I did them for my mother, and I was happy to help her, and she preferred that I do it rather than strangers, but we all are individuals and do what we can to plan this event.

Stephanie, those drums WILL be heard all the way to the west coast. Tomorrow night. Count on it.

JJ

Longtermsurvivor

Prior to the film Extremis (new review from Slate),

there was this 2010 PBS Frontline documentary:

How far would you go to sustain the life of someone you love, or your own?

Film trailer:

xxx

Those deep into the USA medical world who wish to do more than a simple DNR document, might complete a POLST (Physician Orders for Life-Sustaining Treatment) form. Whether your wishes are for everything, nothing or something in between, this medically binding document is stronger than the DNR.

The National POLST Paradigm is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and honored. (Quote from website)

The form varies by state and is specifically for people with terminal illness and fragile elders. Learn more at the above links.

Healing regards and loving kindness for all, Stephanie

Nel

Amazing women on this thread.  I read often and have had an initial conversation with my onc about what I want as things progress. 

Fitz - you are right - it is easy to be brave when things are going well   I am 3years out from MBC dx, but knowing things will change.  It is a difficult road we travel.  Friends and family can be great, but it is the women here who are in our pockets and with whom we can truly share our thoughts and fears.

Nel

barbe1958

Mara I don't know what province you are in but I've had my Dad die in Ontario and my Mom die in B.C. In both cases we were allowed to order Morphine every time they twitched in their respective comatose states. They both had peaceful and painless deaths.

Noni

Stephanie, thanks for the Extremis tip. I watched it this evening and asked my DH to watch it as well. We've had so many discussions about everything but I want him to see exactly what I am trying to avoid.

I'm not doing the greatest. I've had one scan after another of progression. My tumors (bone, lungs, and all over my neck and throat) have grown 25% since the beginning of the year. They recently found a lesion on my liver and I'm having that checked out next week. My 1st chemo did nothing and the tamoxifen is only slowing down the growth. My damn tumors refuse to shrink.

I had 2 additional biopsies trying to get matched with a clinical trial and it was a bust. That was a long 4 month wait.

I've been feeling worse day by day and finally came to accept that today I am feeling better than I ever will again. It's just going to get more difficult but I don't want to spend the next six months or a year killing my body and spirit with chemo and hospital stays.

My DH and I have talked about me dying at home. I thought it would be easier but being we have a 10 year old it's a bit tricky. I would imagine it would be hard for her to stay in the house afterwards.

I'd love to do a residential hospice, but only if I can bring my family with me. There aren't any local ones. I guess it would depend on the time of year or length of time. Or maybe we can just rent a nice apartment for a month or so and do it there. Tho I can't imagine someone renting out their place for hospice care. Who knows.

Thanks for keeping the conversation going.

Rosevalley

Fitztwins- love that that glass has wine in it!! Hey not done with that still sipping- thank you!

Anything related to D&D is allowed.. we welcome it all. Hey even off topics too. :-) I love reading what folks have thought about or discussed. Blessings all around.

Longtermsurvivor

This turned into a long post, but I wanted to share some thoughts with you, Noni! You must follow your own heart and gut in finding what's right for you. You're entering into new-to-you territory, that has been charted by many who've come before you. Take our experience to heart and then follow your heart!

xxx Stephanie

Oh Noni,

My heart continues to shine for you as you traverse this often troublesome MBC ground.

You wrote:

I've been feeling worse day by day and finally came to accept that today I am feeling better than I ever will again. It's just going to get more difficult but I don't want to spend the next six months or a year killing my body and spirit with chemo and hospital stays.

My DH and I have talked about me dying at home. I thought it would be easier but being we have a 10 year old it's a bit tricky. I would imagine it would be hard for her to stay in the house afterwards.

I'd love to do a residential hospice, but only if I can bring my family with me. There aren't any local ones. I guess it would depend on the time of year or length of time. Or maybe we can just rent a nice apartment for a month or so and do it there. Tho I can't imagine someone renting out their place for hospice care. Who knows.

Noni, not to push you in any direction, but I think it's time for you to look into local hospice alternatives.

Here's what I've found in my own exploration:

There are four hospices in my nearby medium-sized city.

I eliminated the for-profit immediately because of scandals that I was aware of them through local and national reports. - Terminal neglect? How some hospices decline to treat the dying

The second was eliminated, because I knew staff & volunteers who reported internal conflict.

That left two non-profit hospices to choose from. Non-profit hospices seem to be better equipped with donations, volunteers and a long history of service, compared to for-profit hospices.

Have We Lost the Essence of Hospice?

by Barbara Karnes, R.N. | June 14, 2016

Several years before I was ready for hospice, I began paying attention to my cancer friends' experiences of dying in both hospices. And I fell in love with the main doctor at one of the hospices - first by reputation/observation, then because he was my palliative care physician for 4 1/2 years before I switched from palliative care to hospice care to hospice. The switch was painless and he has continued to be my fierce advocate and a fine friend for over 5 1/2 years. I am so grateful!

Noni, I do have the advantage of having time to prepare to die and also time as a volunteer hospital chaplain where I interacted with patients (recovering and dying) and their care providers. Witnessing life's natural unfolding from birth through death has given me great trust in the unfolding. And given too, insight into what care is available locally.

You don't have my advantages, but you have a good mind and a loving heart!

One thing you can talk about in conversation with your local hospice(s) is the possibility of entering a 6-person assisted living situation that may work with local hospices.

My mother was able to move to a large room with a large, north-facing window for the last two weeks of her life. Being able to be with her in her own, new living space made her dying easier on all of us. And her hospice supported the presence of my sister and me at mom's death and helped us with cleaning and dressing her body before it was picked up by the Neptune Society.

Noni, there are so many ways to prepare for the eventuality of death. I'm glad you're already approaching or rather dancing with how and where you might wish to die. Your sensitivity to your young daughter's needs is illuminating and heart-breaking.

I'm so sorry you're facing this, but admire your courage, love and inner strength.

Many healing regards and loving kindness, Stephanie

aven

Hi! I have been lurking in these topics for a while, but didn't want to do so anymore without thanking everybody for sharing their thoughts and experiences.

I am sorry that I have nothing useful to offer at this time

Longtermsurvivor

Today's Panhala poem:

To subscribe to Panhala, send a blank email to Panhala-subscribe@yahoogroups.com

After the Fact

The people of my time are passing away: my
Wife is baking for a funeral, a 60-year old who

Died suddenly, when the phone rings, and it's
Ruth we care so much about in intensive care:

It was once weddings that came so thick and
Fast, and then, first babies, such a hullabaloo:

Now, it's this and that and the other and somebody
Else gone or on the brink: well, we never

Thought we would live forever (although we did)
And now it looks like we won't: some of us

Are losing a leg to diabetes, some don't know
What they went downstairs for, some know that

A hired watchful person is around, some like
To touch the cane tip into something steady,

So nice: we have already lost so many,
Brushed the loss of ourselves ourselves: our

Address books for so long a slow scramble now
Are palimpsests, scribbles and scratches: our

Index cards for Christmases, birthdays,
Halloweens drop clean away into sympathies:

At the same time we are getting used to so
Many leaving, we are hanging on with a grip

To the ones left: we are not giving up on the
Congestive heart failures or brain tumors, on

The nice old men left in empty houses or on
The widows who decided to travel a lot: we

Think the sun may shine someday when we'll
Drink wine together and think of what used to

Be: until we die we will remember every
Single thing, recall every word, love every

Loss: then we will, as we must, leave it to
Others to love, love that can grow brighter

And deeper till the very end, gaining strength
And getting more precious all the way….

~ A. R. Ammons ~

(Epoch)

Rosevalley

That is just perfect Stephanie- "There is only Love." Do n't we know that and wish I learned it sooner. Blessings to us all.

Mominator

Noni,

If there are no residential hospices close for you, perhaps there are other resources. Does you MO office, local hospital, your health plan, or social worker have suggestions or resources for you? Do the local assisted living facilities provide rooms for hospice? We have several assisted living facilities in our area, and all of them address "aging in place," which is code for "come here when you start to need services, and you can stay here through the end (of life)." It might be unusual for them to have a relatively young person come in for hospice care, but it is the same types of services as they already provide. Sunrise Assisted Living, which has many facilities in my state, has both hospice care and respite care.

DH's grandmother Nana, was in Sunrise Assisted Living for her health and memories issues. When it was time, Meridian Hospice was brought in and they wrapped their services around the Sunrise Assisted living ones. She continued to enjoy daily activities for several more weeks until the CHF made her too sleepy.

My friend Lori used Meridian Hospice at home. Lori's 6 children, ages 9 to 15, were able to maintain their busy school and activity schedules, and still be with mom. Lori died 5/25/16 at home, surrounded by her husband and children. My daughter is BFF with Lori's oldest daughter, and hangs out with the BFF and her triplet sisters. They don't say, "ewww, Mom died in our house." It's just their house. They all still hang out together.

While deciding whether to do hospice at home, do you feel comfortable asking your 10 year brainy girl for her opinions? Maybe you think you're shielding her from one thing, when she may want something else. Maybe she would want to keep you at home. It's hard to know what to say. My heart aches for you as you and DH wrestle with what to say and do. Keeping you close in my thoughts, Madelyn

https://americanhospice.org/learning-about-hospice/is-hospice-care-outside-of-the-home-right-for-you/

A_Guy

I hope this doesn't offend anyone. I really want to help.

I lost my girlfriend to breast cancer in June, despite doing everything I could for her. I was, and am, devastated. I was recently turned onto the great book "The Light Between Us." That, in turn, led me to the non-profit, science-based Forever Family Foundation, which studies life after life.

They have a $10 interactive course prepared by psychiatrist for terminally ill people and their loved ones called "Love Knows No Death." It is very encouraging, compassionate, and can help people who are dying, as well as their loved ones.

It's not religious and it's not about moving on.

The doctor describes it here.

Lita57

Noni, I agree w/Mominator.

My mom passed because of soft tissue sarcoma cancer when I was in high school. We didn't have hospice back in the mid 70's, but she stayed in our home and we took care of her up until the last 36 hrs when her breathing became too labored. She did NOT want to die in the hospital, but we didn't have the equipment to help her in the last hrs so we had no other choice but to admit her.

Talk to your daughter. She might be ok w/it if she's mature enough. Back in my grandmother's youthful days, people gave birth and died at home - of course, she lived in the country, and there weren't a lot of hospitals close by ;o).

I plan on dying at home w/major hospice support and a trained nurse at my husband and daughter's side (putting $ aside for that already).

These are very difficult decisions, I know.

Lita

Longtermsurvivor

Dear bco friends of our D&D community,

This morning I woke up thinking about my own "death history" and wonder if anyone else has taken an account of the impact of death on your lives?

How has death impacted you? Your beliefs? Your decisions? Your self-image? Your sense of security or insecurity in relationship? What you've devoted yourself to and what you avoid?

Do you consider death an avoidable or an unavoidable part of being alive?

Is it an option or a mandate that all that lives must transform and eventually die?

In my youth, a few people I knew died natural or expected deaths from long illnesses or old age. There were a surprising number who died from unanticipated causes - drunken accidents, attacks/homicide, drugs, unexpected diseases, even suicide.

As an infant, I nearly died of my birth defect/genetic mutation and came back convinced death is a beautiful experience, but life can be infinitely trying...so death was a natural fit for me, but I fought against others unnatural and untimely deaths by focusing on incidents that led to death.

I didn't appreciate the band-aid approach of easing suffering or "God took her home because he was ready for another angel."

Gradually, I realized that death is a natural and unavoidable part of being alive. And suffering and the causes of untimely deaths aren't likely to end because of hard work - mine and others. But, now I believe that one of the greatest aspects of being human is being able to confront death, fear and suffering and to act on behalf of love and kindness. This freedom of choice is our human legacy and worth committing to, even in the face of our sure defeat.

"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."

David Whyte, Self-Portrait

What about you, dear friends, have you considered (consulted the stars) your own death history and reflected on our interface of cultural assumptions and personal experience?

Until recently in human history and still throughout much of the world, life spans were short; accidents, injuries and sudden/acute illness were the major killers (not the modern diseases of heart disease, cancer and diabetes) and death was a common and daily experience for all, not just those in the "death trade."

In the modern west and northern hemispheres, lack of exposure, awareness and interest informs our suppositions about how life should be and what medicine can do. We are falsely convinced that death is an aberration or life's opposite, not an essential aspect of life itself.

I'd love to hear from you too...it's so important that we explore life and death for ourselves and, when possible, with one another too.

This may be fun & loving, not necessarily morbid!

warmest loving kindness, Stephanie

See too: TEDxPugetSound - David Whyte - Life at the Frontier: The Conversational Nature of Reality

Rosevalley

A Guy- I am sorry for the loss of your girl friend and thank you for sharing the link. I too think we survive the threshold and leave our bodies on the shore.

Mominator had some great suggestions Noni. I think I would have a conversation with your brainy DD!!

Lita57

Just attended an Interfaith seminar on "Spiritual Perspectives on Death" a couple days ago. It was a panel discussion with a priest, Protestant chaplain, rabbi, Muslim imam, Buddhist minister, and Hindu. It was very comforting and enlightening.

Only the priest and imam were opposed to the "End of Life Options/Death with Dignity" law that was just passed in CA. The others took a more progressive/liberal stance on phys. assisted suicide. While Buddhists don't believe in committing suicide for selfish reasons, the minister cited that Buddhist monks who set themselves on fire and died during the Viet Nam era. If you kill yourself for a noble cause (so your family doesn't have to suffer watching your inevitable decline, etc.) they say it's ok. The Protestant chaplain said that the various denominations each have their own take on it. He said everyone has to face death on their own terms and have "The conversation" themselves. If you're already terminal, with just months/weeks to live, you're just hastening it along.

At the end of the evening, I spoke to the rabbi (who is ok w/phys. assisted suicide) and we both agreed that God is still in charge even if you swallow the barbiturate concoction. Some people pass one or two hours after swallowing, and others six or more hours after swallowing. Why does it take longer for some, and only an hour for others? Who decides that...how fast your body's organs will then shut down and off you go?

Everyone on the panel agreed that the spirit/soul doesn't die, just the physical body. It's not something to be feared as death IS a natural part of the life process. You just transition into another type of existence.

Incidentally, is anyone watching that new show, "The Good Place" with Ted Danson and Kristen Bell? It's hilarious. I love the fact that no one can swear, so Kristen's character, Eleanor, can only say bullshirt, motherforker, ash.hole, etc. The premise of the comedy is good, too: She's in the 'Good Place,' but she was supposed to have been sent to the 'Bad Place,' and now everything in the Good Place is getting screwed up because she's there. I enjoy the show. It takes my mind off of Mr. Cancer.

Lita