A place to talk death and dying issues
Comments
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Just wanted to bump thread
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Thank you for bumping. I think about it a lot, and I also completely forget to think about it a lot. I have fairly well formed ideas and plans for eg funeral, and have already divested some precious things to precious people, but the space between here - feeling not too bad at the moment - and there seems enormous and unknowable. There are practical considerations that I know should be dealt with, like power of attorney and will, but I wonder how we are supposed to deal with it philosophically? Knowing that we have no control over the speed of the vehicle that we’re in.
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Agree, thank you for bumping this thread. This is an important discussion, as being living beings. and @emiliamarty, well said. We appreciate this conversation.
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I am a Pure land Buddhist and I recite the name of Amitabha Buddha daily with an online group. It helps me tremendously. And I would like to share this video and a website with you.
Namo Amituofo🙏🙏🙏
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@wengellen I practice in a zen temple nearby me. I wish you peace and happiness along your journey.
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@tougholdcrow that's great you have a zen temple nearby to go to. Thank you! You as well :)
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I have a question for those who are later stage. How did you come up with arrangements for when things really deteriorate? For instance, I think I don’t want to die at home, so do I find and make arrangements at a hospice facility? Also, I think my family would prefer me to be at home, but I think it would be harder for them to find peace if I passed here. I’m doing great right now but it seems like a good idea to take care of business before it becomes urgent.
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Waves2stars, I have a specific hospice facility in mind, one that is highly recommended for their compassion. It isn't something I can set up ahead of time (have to be on hospice to apply), but when I get to the point of needing hospice care, I intend to see how long I can remain in my home with in-home care, but ultimately plan on moving in there. It is private pay and my insurance doesn't cover it, unfortunately.
Emiliamarty, I've done all the "practical" stuff (Will, Advance Directive, funeral arrangements pre-paid, even written my obituary and chose the photo!) but the philosophical aspects are so intangible. I read a lot of poetry about death and loss, and while I can't exactly describe how that helps, it seems to. My husband passed away over a year ago, and knowing that he's through the veil gives me some comfort, as I believe our souls will meet up. I don't want to die, not yet, not yet... and I want to try to have a good death, in that I want to feel peace and not anger/bitterness at the end. I'm working on that part, lol.
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Thanks sf-cakes. I also aspire to a ‘good death’. I don’t feel angry or bitter in the slightest but I have not experienced real pain as yet except for the first couple of months with ONJ and I do worry that I might become absolutely vile when I do. Poetry is a great balm. I got very into Louis MacNeice around the time of my mastectomy back in 2018. I think that what I like about the medium is that it is the opposite of a page-turner and encourages one to sit with the words and take one’s time. I’m about to radically downsize and need to shed approximately 20% of my books and bookshelves. None of the volumes of poetry are on the hit list. I just had a conversation with a friend who has MS and we have made a pact to get rid of our unread Proust. Those temps are most certainly perdu. I’ll leave the obituary to others. I do have a hospice in mind and am thankful that I will be within the catchment area when I move. Hopefully not for a good while yet.
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@emiliamarty Unread Proust! Oh, I am with you there (the unread part I mean). I started reading War and Peace and my joke was that I couldn't die until I got to the end, which would make me immortal. I gave that up and am halfway through The Magic Mountain, which is a very interesting thing to read in our current state. As for poets, Seamus Heaney. His poem Miracle lives by my side.
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@tougholdcrow haha! Yes. I couldn’t find the first volume on my shelves when I looked this morning, and realised I’d moved it to the pile beside the bed at some point over the last few months. Read the first page and thought, no no no. Life really is too short! Adieu, Marcel!
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My second bout with cancer is when I paid for plot, stone, ect. But now need to get a little more detailed. My husband said we should do that so he know my wishes. When I bring it up to him he says no, its too hard for me to do it now since you dont look sick. I am thinking wouldnt it be better to do it know so you are not doing it under duress? I am not sure how detailed do I want to get? Like those who have made arrangements, did you pick out music, your dress, write up something to be read?
I know my husband will sell the house and go into something smaller which works out for the both of us since I want to die at home.
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@luvdbyhim, I did it now when I am still active and have really good quality of life. I live alone with my two kitties but have family close by. Most of my family don't know I have bc - let alone that it is stage IV. I didn't want to leave a mess for my family, and I didn't want to be bothered by it when I did not have the energy or was undergoing treatment which gave me bad side effects or was in pain/hospital/hospice. My sister has POA and Medical guardianship if I am incapacitated and I am relieved that all the necessary paperwork has been completed. The next thing on my list is replacing the hot water service.
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I had a meeting with the palliative care team yesterday. It was my first one with them and lasted about an hour and a half. It was a video visit and I saw the nurse, the doctor, and the social worker. It was a great meeting. I do have an advanced directive, etc., but they're sending me another form called the POLST which is the Physician Orders for Life-Sustaining Treatment. DH and I are in agreement. I definitely do NOT want chest compressions or a trach tube.
Carol
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I had a PET scan on Wednesday. New mets found in omentum. MO called to let me know. Will see her next week to discuss new treatment plan.
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Sunshine - sorry to hear this. Hope there is an "easy" treatment protocol.
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sunshine - how are you feeling? Did you suspect any changes?
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margesimpson, I think I've been more tired. Digestive issues I've attributed to the latest drug, Truqap. I just got my next cycle of Truqap yesterday with the dose reduction. I will probably be stopping it altogether and moving on to something else. Thank God I've met my deductible, out-of-pocket, or whatever it's called for drugs.
I hope everyone has a good day. Stay cool out there.
Carol
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Have any of you considered the option of a short term feeding tube should you need one? I have a DNR and no CPR form. DH and I were having the feeding tube discussion tonight.
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Sunshine - I'm only Stage 3 - but I have considered this extensively. I have opted for NO feeding tube and made sure my son understands since I live alone.
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That's a good question, @sunshine99. Also I'm sure you're aware that we have free weekly meet-ups over Zoom if you wanted to pop in to ask your question and see what folks have to add to what anyone says here!
The dates/times are listed here, as well as the ability to register for the groups:
You don't have to stay the entire time, and you can come late. The groups are very flexible. They're a nice source of support and information in addition to the discussion boards. :)
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@sunshine99 I'm so sorry that you are now dealing with the stomach changes. If I recall, you've been in a tough spot before with esophagus lesions and got that under control. You need a break and I hope that comes in the form of a med that works. As for a stomach tube, I would certainly consider it if it's going to be a temp. placement. I can't recall the poster I had read in a thread from a few years ago that had a stomach feeding tube. She said, and I'll paraphrase this, you know I drew a line in the sand that I wouldn't do a certain treatment, and I crossed that line anyway. It's hard to make decisions on fair weather days until the weather turns nasty. Much love and prayers are being sent your way.
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@sunshine99, im sorry you have progression and am sending you prayers and healing energy for the next treatment to kick @ss. I have thought about the feeding tube and my medical directives . If I needed a feeding tube temporarily while starting a new treatment, I'd want to have one while we waited to see if the treatment worked . I participate in the Tuesday 5:30pm pacific time MBC zoom and we have a wonderful, small group of supportive MBC people (all women right now ). We talk about these type of decisions along with a moderator who is an amazing, caring therapist /licensed social worker who specializes in stage 4 cancer patient support .
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@sunshine99 , My pulmonologist who is also licensed in critical care suggested that the decision to intubate or use a feeding tube be specifically delegated in writing to my healthcare POA (my daughter who is a PA in my case.) There is a difference if it is temporary or does not adversely affect your QOL as opposed to needlessly prolonging things. With that wording he is able to offer medical advice to the POA. Otherwise it is legally a yes/no question depending on the box checked (in MA anyhow) which may not address the subtleties of the situation.
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@irishlove This is so well put: "It's hard to make decisions on fair weather days until the weather turns nasty." It's hard to think of these decisions as some sort of objective science. I do see the wisdom of having a directive because of the terrible burden on families if we don't. But I'm dragging my heels. I wish everyone peace as they get through these decisions.
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I think we drag our heels because doing something acknowledges our impending mortality and we think our decisions are final. When I was given "the talk" at my first pulmo appointment (being wiped out by rads for stage 2 bc was never on my radar) my doctor was pretty insistent that I fill out an advance directive that day but not in his office since he is my provider. He said that not acting was a decision to place my fate in the hands of state laws which tend toward prolonging life no matter what. He also reminded me that an advance directive can be rewritten at any time so if I changed my mind about any aspect I was free to fill out a new one as frequently as I wanted as long as I was mentally competent.
I have no idea why (the shock made me look at the situation intellectually rather than emotionally?) but I asked him for his thoughts on the matter. He told me that all his patients are terminal but the timeline is unknown and changeable. He feels that he has done his job well when his patients' lives have the maximum QOL possible and end pretty much on the terms they have chosen. Leaving decisions to family members not only places a burden on them but can lead to discord and state law being invoked if they disagree. He recommended choosing a healthcare POA who would follow my wishes despite pressure from others, having a hospital social worker review the document to make sure it said what I intended, and filling out a separate advanced directive for every state in which I reside or receive medical treatment since state laws differ.
I made it through that crisis and am currently stable so I'm living proof that writing an advance directive doesn't jinx you. I second @tougholdcrow's wishes for peace when dealing with these decisions.
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Did the pre-planning of the cremation/burial arrangements last week. I was expecting to feel relief after doing it, and I did, briefly, but then I had a down day afterward… it was hitting home. Grief and loss, they come and go in waves during this illness. It seems more real now, even though I still hope to have some years ahead of me.
After my diagnosis last winter, I got busy, I knew that I could get a few important things taken care of while I still have the energy. I even downsized and moved this summer, into a studio apartment in a building with an elevator. Did it all solo. It was exhausting but I was glad to get that done.
So all of this planning and arranging is done, except for the DNR (or whatever the equivalent is where I am, Ontario).
I guess it is a relief. It was just stirred up more emotions when I got it done, than I was expecting it to. Thought I'd gotten all that emotional stuff behind me. It's a long process though.
I wish more people pre-planned this stuff when they hit middle age, at least. I went pretty cheap with my arrangements, but some of the prices at cemeteries nowadays are mind-boggling. I won't be going out in a limo, but I'm OK with that…
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Bump.
I have stopped treatment but am not on hospice yet. Anyone else? I have been off treatment for seven weeks and finally feel human again. How long this will last I have no idea, but I’m going to enjoy it while it does.
I do have a question. I am going back and forth between my regular home and a vacation spot. I need to make my cremation plans, but I’m not sure where I’ll be when I die. Does anyone recommend something like Neptune Society or somewhere where it doesn’t matter where I am when it happens?
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KBL - I don't know if you have anything like this in either of your locations, but in my area, we also have a funeral cooperative that has contracts with a number of local funeral homes, so when someone has a membership with them (about $35), any contracted funeral home will go pick the person up where they died. (I know about this because of my work in a social services area that deals with this stuff from time to time.) Many here prefer that cooperative to the Neptune Society, so I don't really know a lot about how Neptune works. You might though, look around for other possibilities. I would also imagine that funeral homes do "funeral home to funeral home" transfers, etc. There must be a way to make your plan work.
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There are "Cremation Societies" located throughout the US. My mother had actually contacted one in Hawaii when she lived there but died in NH. There was no need to pre-register or pay a fee. The nursing home where she died just called the Cremation Society of NH and they drove across the state to collect her body. Hope this helps.
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