A place to talk death and dying issues
Comments
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Hi ladies,
I am looking for a book and/or checklist that will help with some of the practical things. I know there are recommendations in this thread, but I didn't want to search all 105 pages. Can anyone recommend either books, pamphlets or websites that might have this?
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Nancy, here is a helpful website for those "practical things"-- http://www.americanbar.org/publications1/books/aarpforms.html
The website presents the action checklists in the book Checklist for My Family, written by Sally Balch Hurme, an elder law attorney. I've used this book while I've refined estate planning, advance directives, other final wishes, etc. This is just one resource I have. I have more, and I'm sure others do as well, if you have a specific topic in mind.
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Comforting and nourishing to hear so many voices and perspectives....
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Back from oncologist... despite weakness and another 9 pound weight loss, my labs are good and my kidneys and liver look good. Hydration works wonders!! Tumor markers did drop a smidge, still over a 1000. She stopped Doxil it was a dud, same as Herceptin (where they skyrocketed). Anyway I get to do faslodex again. So I got my loading dose. It will be a crap shot but one worth trying I think. Fingers crossed. I won't miss the N/V from doxil. I still have nausea from the bowel issues and slow emptying of my stomach. I think the CBD tincture really works and I recommend it if you have access to it. Kind of pricey at 30$ a bottle on sale.. little bottle too.
Nancyh- Bon did an incredible list of resources on this site but I can't remember how far back it is. PM her and I am sure she would give you the link or send you the numbers that correspond to her comprehensive list. She did an amazing job. I hope you find it.
May you all be free from suffering and fear and may you have happiness and peace.
love rosevalley
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Thank you Brenda, that's another great resource.
Nancyh and Rosevalley: Bon was just mentioning on page 104, "Back on pages 25-26 where I posted the "When I Die Bag" and others posted their preparations. I hope that newbies and those now reading will go back and read those and start their preparations. Preparing for end of life can be done at the first diagnosis of cancer, especially stageIV. It is the most important thing I did and still do this day that gives me the most peace." Starting around page 25, there are several posts with an amazing amount of information. I've been sorting through them to help my parents.
Rosevalley, I'm glad your numbers and kidneys and liver are good. I hope the faslodex brings you some relief.
Stephanie, your posts are always so thoughtful and thought-provoking. I am incorporating your philosophy into how I interact with people. I have realized late in life that my parents always presumed the worst of people, and so did I. I never knew how much that permeated my life. Yesterday I took my daughter to her weekly therapy session. The therapists are all independent, there is no secretary nor sign-in; and we wait in a common waiting room until we are called. The therapy rooms are behind a door, and the therapists comes to get each client. At 10 minutes past our appt time, I figured she was running late, and I texted her that we were in the waiting room. At 15 minutes I started to feel annoyed that she kept us waiting, but that is the old me. New me began to wonder if everything was alright? Was her previous client in crisis? Was she herself alright? So I quietly went through the (somewhat forbidden) door and discovered that her office was left open and dark. I left a note on her desk, and slipped another note under the door of the therapist who owns the space. I got a call later that evening from the owner: my daughter's therapist had a medical crisis earlier in the week and was in the hospital. Someone was supposed to call all the clients, but obviously they missed us. She would get a message to the therapist. New me handled that much better than old me, and hopefully I will be a good example to my daughter. Thank you for your wonderful posts, and I'm glad to have met you.
Wishing everyone peace and comfort.
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Rose, glad CBD helped your N/V. Welcome back to Fanny Pack Club. Before and after Faslodex shots you need to keep hydrated. If you can't do it orally do get extra IV hydration. Wish you feeling better
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"Back on pages 25-26 where I posted the "When I Die Bag" and others posted their preparations. I hope that newbies and those now reading will go back and read those and start their preparations"
Maybe another thread could be started with the first post being this list. It's not that easy to go back & find this information once this page has turned again. Thank you for posting this, I'm going to go back & look to see what I'm missing. GG
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I went back, found the pages, did a screen shot of each page, and will print them out tomorrow. I know I did this a while back and have a file but need to revisit. I've lived a lot longer than I thought I would. NOT complaining! Have two more grandchildren since the original file was put together. It will be easier this time around since copies of paperwork won't need to be redone. What a gift to us all. Thanks, Bon and all the others who contributed!
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Oh Mominator, thank you for your sad, wonderful story about your reaction when your daughter's therapist was a no-show. To imagine - she too is mortal. It always shakes me up to realize I'm not the only one dying around here. Death has given me a life worth living, because it's made me stop and think/feel/nurture what I most value.
A local therapist and friend of friends recently took her own life - her own perfect life - a beautiful, fit body, a career, education, intelligence, sensitivity, good friends, loving husband, children, home, even a beautiful dog! She seemed to have it all and to have thrown it away. I don't have any of those things (though I love my rental cottage), yet I've been steadily affirming life since my early brushes with death. She ran toward her death with open arms, while I've been running toward my life with a similar gesture.
We just don't know about other people's circumstances, no matter what they tell us or how they seem. We don't know who we'll survive and who will survive us. We don't know whose suffering is greater, not by our looking or by their telling.
I feel such tenderness for all mortals, sentient beings who are coming into being and passing away. Living a nature-filled life, I constantly see beings coming into existence and passing away. Even the quality of the fallen leaves becoming mulch and enlivening the soil carries messages of endless change and regeneration. This is emphasized by seasonal changes in quality of light and weather. Every day and night - a life and death. Every season - a renewal and remembrance. Every life - a mystery and wonder.
Mominator, I'm glad you chose wonder, mystery and tenderness for your daughter's therapist. Your kind thoughts will help her to heal.
Sending warmest healing regards for all, Stephanie
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Ladies, thank you for the info and pointing me to the lists on pages 25 and 26. I will be working on this in the coming days.
A harder step is my therapist suggested I write letters, to be opened after I die, to my closest loved ones. Has anyone done this? It is breaking my heart so much I'm struggling to get started. It doesn't help that I don't feel physically well - I wish I had done it sooner.
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I wrote letters to my kids. I wrote them several times in my head. I knew I wanted them to know that I loved from day 1 and their bio moms did a very generous, loving act to give them up.
I found writing a letter to my husband was hard. I apologized for getting sick I know it's not my fault but any of happily ever after/old age are down the drain. Anyway it was short
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I had wanted to do the letters too. My handwriting is so pathetic and I am so shaky that it's barely legible. ugh.. It upsets me. I did do 3 - 9x10 frames collages of me and each of my daughters. I bought "I love you" stickers from a craft store. Each frame has 4-5 photos of them as little kids and growing up. Very cute pictures. I went for happy times and I hope they enjoy them. It's hard to write something to someone when it's in the past tense.
Zills- I feel like I let my DH down... never made it to the retirement part. I worry who will take care of him when he's sick. Now that he's cared for me for years on end. I hope he finds someone to remarry and be happy. This is hard.
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I'm sorry to be the first to post this, but I just received an e-mail from CaringBridge that said SkyLotus has passed. My condolences to her family.
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I don't know if it's posted somewhere else but this was on skylotus caring bridge page:
By Tricia Thompson - An hour ago
It is with great sadness and an extremely heavy heart to inform everyone that Tricia Thompson has passed away. She passed away peacefully in her sleep the morning of February 11th, 2016.0 -
Depressing expose story on death and debt collection:
Debt Collectors Make a Killing on the Debts of the Dead
By Arielle Pardes
February 10, 2016
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Rest in peace skylotus. I know your daughters were your strength. May they find peace.
Comfort to her friends here onbc. It's tough when we lose someone even though we may never have met.
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Rose I typed my letters. My handwriting isn't what it used to be either. Don't know why I did but I did. Pix collage a good idea.
As far as DAH yes he will need someone. I hope they're good to my kids. Fun but will always remind them I was their mommy and loved them.
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lurked on this thread a while back & then been mostly off the boards for awhile. I'm very grateful for this thread and will definitely take advantage of the incredible resource you've built & maintained. thank you. I've only just started organizing in earnest and am clumsily finding my way, but wanted to contribute the few pieces I've cobbled together w/ help from a palliative doc before I get absorbed w/ new info.
some of these make ironing out an advance care plan, advance directive & goals of treatment more task-oriented & that has helped me push through some of the emotional iron curtains. fwiw, since dx, my dh & mom have been against discussing end-plans. after brain mets, I decided I couldn't wait any longer; they've since both come around. I didn't force it on them - seeing me work on it seemed to help them understand. they (independently) came to the realization that they'd never really be 'ready' but want to support me & are open to whatever I think would be helpful. it was very touching & I feel closer to both of them than I have since dx. unexpected & very welcomed. we'll see how it goes.
sorry if these are redundant or if there are better versions. these are mostly to help with the getting started/early stages of planning.
http://theconversationproject.org/ - easy to use 'worksheets' to help define wishes & goals of treatment. I kinda cross-referenced this w/ the cards from the game below & it really helped me get my feet wet.
http://www.gowish.org/ - palliative care lent me a deck of these cards w/ explanation & instructions. I believe there is a free online version, I haven't browsed the website.gist from the doc: deck of 'playing' cards developed by polling hospice patients re their priorities/concerns/wishes & compiling most common responses. instructions: with 1 month left to live, select the 10 cards that are most important to you.
I started by putting cards in 3 piles - need, nice to have, not important to me. I worked through need & nice to have piles multiple times over a week. each time, things got shuffled around a bit until they didn't move anymore. I found my definition of some cards evolved & encompassed other cards, so revisiting the cards helped me more clearly "define" terms as I understand them (& kinda 'cheat' by selecting more than 10. doc assured me consolidating cards wasn't cheating.)
https://www.youngsurvival.org/programs/learn/mbc-r... - ysc (young adult bc org) has a page w/ links to help w/ legal docs, etc. also, they've been running a series of webinars called the 'shady pink elephant' end of life series the last few months - part 3 is tonight at 6p (pst), I believe. discusses communicating about death & dying, hospice, palliative, etc. seems it was directed at the early-stage population, so the whole 'hypothetical' thing can be a little grating, but it's current & developed for younger folks - pretty unique.
https://www.everplans.com/ - lots of checklists here. basically creates a digital archive of everything our families might need (including documents, passwords, usernames, etc). I was a little leery, but I've heard it endorsed by a number of reputable sources.
thank you to everyone for creating this safe place & incredible wealth of knowledge. it is tremendously comforting that I don't have to figure it all out on my own.
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I'm glad to see you spicey.
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Peaceful transitions and lots of love to skylotus' daughters and family. May her memory be a source of comfort and her love surround them. I will miss her posts and candor. Fly free.
This is such a strange virtual world we live in. By our disease we come together, the link of the internet bridging time, distance and forming friendships and getting to know each other. It takes guts to be so exposed but courage is part of being a breast cancer patient. How to link those that desire connection across a huge world. Thanks for BCO.
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Evening ! I started lurking a couple of days ago.
I fought TN BC from /9/14 to June of 15. NED now
At the same time diagnosed with that, diagnosed W THE VERY very beginning of Endometrial cancer. Had not penetrated and both 0b/gym and my regular MO, we all agreed that full laparoscopic hysterectomy was top choice. In addition, the chemo I got for BC also treats that.
July of 15 right after ending tx for BC my abdomen started hurting and only got worse
Yep, a mass in abdomen attached to colon.
Went for "second opinion ". By the head of the department at Moffitt center in Tampa.
Now I realized folks were yakking. I have been the CEO of a mental health organization for 20 years.
This doc tells me I have up to a year, possibly three months ....shocked.
The avastin is working, slowly, but marker coming down. Ca125.shows it is working..marker down to 176 from a high of 377 when started
He is basing this on appearance, and symptoms. In November I was 185. Two months later I am 142.
It has finally hit me I need to develop an exit plan///transition at work. It is weakness, nausea that is so difficult.
The bag is wonderful at the same time a lot of work!!!!
I am 54, married for 23 years, have fraternal twin boys..Forrest a junior at covenant college in no GA. 15 minutes from Chattanooga on the top of look out mountain Taylor is debating grad school for a PA position or medical research. Even at 21, horrible to think about it.
Patrick and I bought a three bedroom house in Turtletown TN, about an hour south of Chattanooga. We really want out. LOADS to do the house before live able
I have great support on line here at a few sites. Middle aged Christian is one I have been with since beginning
As you ALL know, having that told to you, you know it is time. ...I had known but lived in denial.
I have already learned so many great resources. I know one person who made gift bags for everyone at her service.
Blessings to all of you....excuse spelling, on iPad with keyboard not working so am pointer finger typing. And, now I am playing which would I get rid of first? Pains all over abdomen or arm ache from typing
Off to sleep with my friend ambien. I only take a half. Last time with a whole 10mg I woke up a few times. Furious I could not find my soup. I was lifting spoon to mouth and nothing there. That one made me laugh
Blessings, pain free, nausea gone, good nights rest and peace
Will be lifting you all up
Kath
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Sending many prayers to Skylotus and to her family.
I learned so much from the great wisdom and honesty in her posts, both here at BCO and in her blog. Her last post is so poignant: Cancer Hurts, in which she tells of her falling, and her doctor's explanation as an Italian pasta dinner terminology.
Fly free, Skylotus.
Namaste
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Longtermsurvivor/Stephanie: we had a make-up session with my daughter's therapist last night. She had so many tools for my daughter that she kept us 90 minutes instead of the usual 50 to 60 minutes. She practices DBT= Dialectical Behavior Therapy. Her practice and the decorations in her office are all about mindfulness and being in the moment. My daughter was in the hospital from January 27 to February 4.
All the therapist said about herself was that she had a medical crisis and she was in the hospital. She looked good, not sick or ill. I had noticed several months ago that she was losing weight. At this point, she has probably lost about 40 to 60 pounds, all gradually over about 8-9 months. I had always presumed that was a eating healthy, getting into shape weight loss. I had never thought until the missed session, yes, she too is mortal. Who knows? Maybe something else is going on? I know it's not professional to ask her. But we have formed a bond with her and I worry about her.
I'm so sad to hear of the therapist in your area who recently took her own life. Here at the Jersey Shore we had a series of suicides, at least 10 teens/young adults, and a few of their parents as well. http://www.withouttim.com/ I worked with Lisa in the PTA. My daughter has attended some of Lisa's workshops.
We truly do not know what a person may be suffering. I wish to help people without presuming or imposing on them. The best I've learn so far is to listen closely, gently ask, and offer help.
Many blessings to all.
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Kath/Tobycc, welcome! Very sorry for the situation you are in. You will be strongly supported here on this thread. I am one year into this "journey ", so not yet a forceful contributor to this thread. But I do not want you to feel getting little responses due to certain overwhelming events such as skylotus' passing and the exchanges on heavy business side of death preparation. Please let us share whatever you want to share. We are here for you.
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Tobycc .... sorry you are here and welcome! I hope you find us a welcoming bunch. We try to provide unconditional support and as much information as we can share in hopes that it helps. Welcome.
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Bonnie, I received the first version of your message in my in-box, because I follow this topic/thread. I have to say, my heart melted and I totally fell in love with you. Your courage, wit, determination and circumstances of being plowed under by the emr system resonated so strongly with me.
I'm still trying to find my way around bco-land and meet the occupants here. Your name comes up frequently, but until this message, I couldn't put a story to your name. Now I can and I'm so grateful to meet you, even if you removed your message.
Thank you for writing it. Thank you for sharing your reality. Thank you for showing yourself for a moment, even though you retracted your message.
I wonder many of the same things.
Are there firm lines between stopping chemo, giving up, despair, resignation, surrender, acceptance, embracing dying and suicide?
I think cancer is a game changer, because many of us at some point recognize the inevitability of our death. This reorders our priorities and options.
I'm the person who wrote about the friend of friends who took her life and how that unsettled me. She seemed to throw her life away, while I've worked so hard for so long to embrace my living and my dying. Her death seemed premature from the outside, yet I recognize her suffering was so great, she felt that suicide was her best and only option.
Bonnie, I'm glad you're here and hope to hear and learn more from you.
You are indeed, a role model to me. And a heart sister. Thank you!
warmest healing wishes, Stephanie
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Bonnie, your post showed great courage. There is such strength in letting go. Love you!
Rose.
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Hope your break serves you well Bonnie. I wish I could take a break from the symptoms of my cancer.. no luck. Well I guess the "break" I am looking for is death. It has an appeal truly. Grey skies and N/V never a welcome combo. Kids are over for Valentines Day and I feel lousy. No relief. I have normal saline running.. CBD no help and zofran no help. ugh.
DH gave me a lovely book of prayers (The Human Journey- multi traditions) and a card so sweet it made me cry. There was one poem I just loved. I will share.
Deep wet moss and cool blue shadows
Beneath a bending fir,
and the purple solitude of mountains,
when only the dark owls stir-
oh there will come a day, a twilight,
When I shall sink to rest
In deep wet moss and cool blue shadows
Upon the mountain's breast,
And yield a body torn with passions,
And bruised with earthly scars,
Into the cool oblivion of evening,
Of solitude and stars.
Lew Sarett
It's so simple and so perfect I am moved to tears. May you all be well this holiday weekend. Peace.
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Hi Bonnie,
I am so sorry that I came across as harsh and judgmental of your decision to not do chemo! I feel only heart melting kindness and appreciation for you.
Please let me apologize and tell you that I admire you, your courage, kindness, stamina and willingness to live with the courage of your convictions.
I too am not pursuing every last treatment. I am on hospice. I don't consider it suicide or giving up. The local woman who I wrote about took her own life. She seemed to have everything, including good health, but was depressed. I think the depth of her suffering was greater than mine. That's mysterious to me.
I'm a woman dying of cancer who is still embracing life. She was a woman who opted out of life.
How people live and how people die is an unsolvable, but ponderable, puzzle to me.
Bonnie, I don't even believe that aid-in-dying is the same as suicide, because as the psychologist Ethan Remmel wrote:
"I have received some feedback on my thoughts about the Death with Dignity Act. As I said, I have not decided whether to use this option, but I feel strongly that it should be legally available to mentally competent and terminally ill people such as myself. As I also said, I do not view it as "suicide" (although that is a convenient term), because I would not really be choosing between living and dying. I would be choosing between different ways of dying. If someone wishes to deny me that choice, it sounds to me like they are saying: I am willing to risk that your death will be slow and painful. Well, thanks a lot, that's brave of you." - Ethan Remmel
We have done so much to live as much and as well as possible. But, sometimes, we run out of options for either.
Sometimes I think I'm a victim of modern medicine because my body's life has been extended, yet just breathing, moving, eating, sleeping, living can be so challenging.
Bonnie, I too have suffered medical indignities, though of a different sort. I too carry many wounds from medical neglect and mistreatment. It makes me very grateful for hospice's TLC approach. They and my medical care providers are healing the residual effects from earlier medical trauma.
Bonnie, the lack of professional, adequate, compassionate, effective medical care that you've experienced just breaks my heart for you!
I so wish that you too can find your healing allies to help you in your times of medical need.
with highest respect and warmest regards, Stephanie
P.S. I'm not trying to stir up controversy, support or dissension, around aid-in-dying. It was recently approved in my state and I don't think I'll live long enough to decide for myself. But many of my cancer friends are likely to consider what they, personally, would want to do. I will puzzle over this too - without a firm solution!
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Gratitude to all who have contributed to this topic:
Mominator, for sharing your shift in perspective........... KJones, for the lovely video and song........... Stephanie, for the Whyte meditation........... RoseV, for the poem. Poetry brings me such nurturance, especially when I am in pain, in whatever ways that may be showing up on any given day........... 2Athena2: for sharing your thoughts about feelings. Intense feelings are often contained to our detriment and sense of isolation. I've always said that I can handle disagreement, disapproval, anger, whatever might be considered "negative" by others as long as it is shared in an authentic and respectful way. Sometimes just being here for each other is what's most needed. Most of us need to know that we will be accepted even if we show up in our rawest states........... Nancy, for being open about your heartbreak in struggling to write letters to loved ones. I wonder if you would find it helpful first to consider your purpose in writing letters. Will it fulfill a need for you? Will it fulfill a need that your loved ones have? If I were to write a letter I would try to consider what impact it might have on the person receiving it, too. Might it be something that would nourish that person throughout their grief? Would it be part of your legacy? I once thought that I would write "final" letters, but then I changed my mind. I now plan to leave a piece of pottery to one person, with a note about why, a painting to another, again with a note--something that is dear to me that I hope will be dear to the person receiving. But I also write letters and send cards and emails that share my love and what is most important to me now. Just a thought......... Zills, for sharing your hopes for your family and a struggle many of us share: apologizing for being sick but knowing it's not our fault. No, it's not our fault. I hope that you are as compassionate toward yourself as you are to others..........Bon, for noting how you shared your possessions and how you and your husband laughed then cried over your letters, for reminding us how we continue to evolve and that our lives are legacies in and of themselves..............Scrunch, for sharing the news of SkyLotus's death.........Sky Lotus, for bringing your special self and gifts to so many and offering us fine memories of you to savor.......
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