A place to talk death and dying issues
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I don't know if this will help, but these are some of the steps I've taken preemptively to relieve my anxiety about the dying process, which is mostly centered on what I'll leave behind and the pieces that would need to be picked up, but also so the idea of chest compressions is nixxed.
Advanced direction/DNR/Living Will - I have discussed my wishes with my family but have it written down signed and witnessed. I know in the moment it will be very hard for hubby to let go, I know he will because he doesn't want me to suffer, but its written down as a comfort so that he can say later, I did want she wanted, its okay.
List of passwords to pay bills/list of where important things are/parers etc. I pay the bills and am the person hubby comes to to ask where things are. It caused me alot of distress to think of hubby having to carry the loss of me and then being unable to take care of day to day things afterwards and "move on". I've got these lists beside my Advance directive papers.
Some of my friends have asked for letters or jewelry to be buried with me as their way of saying goodbye. Agreeing to this and writing these wishes along side my diectives gives peace to those who love me that a part of them will always be with me if things happen quickly and we can't verbally say goodbye.
I think the question is a great one. Dying well. I guess dying in my sleep pain free would be nice. But if I had a second choice it would be sedated with loved ones surrounding me and hubby holding my hand. My husband mentioned once when his grandma was in the hospital dying from a type of cancer many years ago she slept alot and would go in and out, would be sleeping, recognize he was there for a minute and smile and then fall asleep again. I was next to my great grandpa when he passed. I was 11 years old. He spent most of his time sleeping in his final days at home in his bed, I was sitting next to him and heard him take a deep breath in, I knew it was time. I told my mom and grandmother, within 5 mins, he passed, peacefully and quietly.
I guess another question to ask is, how can we help each other die well? I have no clue how to help someone do that. Its a helpless feeling. I don't want to say goodbye to anyone in this thread.
Sending hugs to Micmel in return for the shout out
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The sucky thing about getting metastatic breast cancer and surviving it for awhile is you have a chance to consider how you might want your end days to be, to get some things in order, put some things in to place and make your wishes known to loved ones so it unfolds more in ways you prefer rather than according to others’ wishes.
The reason this is sucky is because on some levels, dealing with end of life issues ahead of time can be a good and comforting thing, and who wants to say any good and comforting thing comes from mbc?
I think many people don’t give much thought to dying. Their end days wind up more out of control and then when they pass, it often leaves more difficulties for loved ones left behind.
A good death, for me first and foremost, is one with little to no pain. I will be utilizing anything at my disposal to be comfortable in my end days, if I have to charm, bargain with or pay off hospice workers, I will do so!
I also do not want to linger for too long. None of those extraordinary messures.
A good death would also include no unresolved issues with loved ones. Again, having mbc for nine plus years, I’ve tended to my closest relationships where they know I love them and they know I feel their love. I’ve made wonderful memories with them and they can remember our good times.
The idea of allowing others to come say goodbye so they have closure: wow. I never considered this before and will give it some thought. I just don’t want the overly emotional visits where it’s all about what the other person feels and I'm supposed to comfort them or make them feel better about my dying. Don’t want that. But meaningful goodbyes seem like a good idea and when I pass, I want to leave others with good feelings we had towards each other and not hard ones.
The sort of nuts and bolts part of dying, a will, medical power of attorney, cemetery plot, obituary, are things I have in place to make it easier for dh and ds. I don’t stress over “do I have everything rigidly in place” but there’s enough stuff done that they won’t be overly burdened. I spent decades making sure our finances were in order, so they need to see that as “I love you, I love you, I love you.”
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well said MrsM.
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After being told on March 16th that doxorubicin is not working and that treatment will now be purely palliative, I have put a lot of thought into how I want to die and how can I make this a good death, I think I'll be using many of your ideas. I asked my palliative doctor how much time is left, she said she cannot be definitive but it will be weeks to months. My brain immediately landed on "weeks"...my family says "but she did say months" but I respond "yeah, but she did say weeks". I hope to see the glass half full soon, actually I think I'll make that as of now.
The virus makes my goodbye wishes a challenge but where there's a will there's a way. I agree with pajim and DivineMrsM meaningful goodbyes but not overly emotional, however, as an aside, I've never been overly emotional but over the past week I can burst into tears without warning. JayLea, you are incredibly courageous to give others the opportunity of closure. Thankfully, RadastRabbit, I am being helped through the Medical paperwork, which good. As with helenlouise and pajim i do hope it is NOT a long drawn out process. I have also been told that because my metastasis is liver, my liver will begin to fail and once the liver can no longer remove toxins I will slip into a coma and pass. It is on file that if I show any sign I'm uncomfortable, I will be given a medication used for "palliative sedation". As I have mentioned a few times before I have been on major opiod doses for months and it is the pain that scares me most, not only for myself but for my DH and family. I do not want my DH to suffer through this and watching someone in pain is incredibly difficult and agonizing. I guess what I want a good death to be is to find out what my doctor said about dying from liver mets is true, I hope to pass with my pain controlled and that will help me to communicate out of love and not anger and frustration, I hope to be fearless and empowered, and I hope that when I look into my DH's eyes I see peace and when he looks into mine he sees love.
It is a very difficult time. I've never been this close before.
Iwrite (((hugs)))
KBL - so glad the markers are moving in the right direction, hopefully the next scan clarifies the omentum.
Have a wonderful evening, my thoughts and prayers are with you all, Maureen
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Hi, Maureen! Thank you so much for your kind words. I truly appreciate you.
I have no words to say to comfort you right now, but I am thinking of you and hoping that you get what you need to stay out of pain. I wish I could truly give you a hug. I am not where you are at this moment, but your words help me in understanding what it might be like when I am close. I am giving you a virtual hug.
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((((Maureen))))
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Well said Divine, I echo much of what you said. No lingering, no goodbyes that are overly emotional but meaningful ones meant to ease our passing rather than it turning into a therapy session with us the dying playing the shrink. I'd rather it be a time of reflecting memories. “Remember the time I went into the men's room by accident one time at Walmart totally oblivious there was only 2 stalls and a wall full of urinals because I really had to go and realized upon sit down that within minutes it sounded like I was in a garden center listening to a line of cherub weeing fountains to which I scampered and fled from once I verified there was no line of feet visible from peering under my stall."
Kinda like remember me how I was not me at my lowest.
Maureen what you said about how you hope that you will be fearless and empowered and that you hope you will see peace in your husbands eyes and he sees love in yours. Wow is that is a powerful statement. I hope and pray for all the above to happen for you and for pain to be managed well for you, that all your wishes regarding the process be granted and exceeded.
Pajim and Lynne you are also in my thoughts. I hope my joshing around a bit and describing my postmortem preparations etc don't come across calloused or cold. It is not meant to dilute the seriousness of end of life. I thought Practicality and a touch of humor might be appreciated and more helpful than something overly wrought with emotion especially during this difficult time. And especially since it has been expressed as not wanted at the bedside.
Sending hugs to all you ladies. I am thankful there is a place to talk about these things, even tho I wish we never had to.Lori, miss your posts, hope all is ok.
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Hugs to all of you, especially Maureen. I am doing OK -- just coughing up a storm.
My MO has offered oxygen. How the heck am I supposed to know if I need oxygen? LOL.
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Pam, good grief! (Don't you know you're supposed to be an expert by now? ;-) )
Tina
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Pajim, sorry to hear you're having a hard time with horrible coughing. I wish i could offer more to all of you, Maureen, Lynne & others here on this thread that none of us every wanted to be posting on. hugs to all, dee
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Gentle hugs to you Maureen, Pajim, and friends. Being pain free seems most important for us and for our loved ones who suffer when we do.
I did update the password list. Checked that off the list and forgetting about it.
Hope the sun shines on you all today!
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Hello everyone, this is my first time posting on this thread but I really need someone to talk to that understands the way I am feeling. Of course these are rough times for everyone and I get that, I'v always thought of myself as a positive, hopeful person. When dx with BC in 2014, once I got the facts I just jumped right into my treatment, had my bf and husband's shoulders to cry on when I needed it, but I knew the tx would end and life would go on. I was dx with mets to the bone, spine and hips the end of January. Got done with scans and such by mid February, started getting over the shock and planning my future. I put in my notice at work (I did hair in the same retirement home for 15 yrs), and called my son and D-I-L to tell them to expect me at least once/wk to babysit as they live an hour away. I found a vacation house to rent for a week for my DH and 3 dogs, got my tx plan in place with my new MO and boom, rug pulled out from under me in the form of coronavirus. I left work a week earlier than planned since I am taking Ibarance, faslodex and Xgeva and my white blood count is 2. So here I sit, in my house for a month now, haven't seen my g-kids, no vacation, no anything to look forward to and I'm finding myself losing hope for the first time in my life. I'm keeping myself busy, walking dogs, going through and throwing out photos, cleaning out closets but I feel like I have a heavy cloud of despair around me. I'm so afraid that if I get this virus I'l die alone hooked up to a vent in some hospital, so I'm home, only get out to go to doctor appointments and feel what life I have left is passing me by. I can't really talk to my DH, he thinks I need to just shake it of and stop thinking about dying, I wish it were that easy. I wait till he leaves the house to cry and manage to hide my level of depression from him. I talked to my son today and he said I could come see the kids but he is worried about me because he is a truck driver and out there everyday. I've made appts with psych through my MO, they were cancelled but I have a phone appt next Wednesday. I started thinking about how I got through those first rough months first time around and it was bc.org. I'm not really looking for advice, just a place to vent with people that understand....
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Oh Genny5775, your voice is full of despair. Since you can't reach folks right now to set up counseling or even meet with palliative care specialists, maybe see if your MO can give you meds to help with anxiety and depression.
Can you reach out on apps like Google Hangouts, Skype or Snapchat to talk to friends, family, neighbors?
I think you would benefit to let others know on other threads that can jump in and throw you a life preserver. Try these active threads; Ibrance (Palbociclib), Bone Mets Thread, and Pls Some Positive stories. There have to be Some.
I think every single one of us has felt your same emotions. We care about you, especially when are so vulnerable.
S
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genny, yep, that’s a whole lot of change in less than three months. No wonder you feel all the feelings that you do. I commend you for already having a psych appt. You are taking care of your emotional and mental health and that says a lot about you.
My heart really goes out to you. I promise you, though, that life is not passing you by. We are all in this pandemic stay at home pattern together, so there really isn’t anything out there that you’re missing (except the coronavirus). When our country finds its way to the other side of this, you will be set to go. Hang in there. Many hugs to you.
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Genny5775 - you have the support of a whole community here. Each and everyone goes through a desperate time in this fight, I'm sure you have been supportive to many people on the forum over the past few years. Sometimes we just need to get the words out I of our head, I truly hope that's all you needed, to vent.
This virus has hit the world hard and I have thoughts that being isolated, in our own homes, is particularly hard in Stage IV patients but then I watch the news and realize so many have it so much worse. People who had long, bright, productive futures are now gone and their families left to grieve. I'm here now, today, and I can make a good memory with a family member just with a hug or by video chat having a good belly laugh with a friend.
Thank you all for your support it means so much. My thoughts and prayers to all this Easter weekend.
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Kayla, Devine,Sandy, thank you so much for your kind words and understanding. I am feeling much better now, I had about 3 really rough days but the sun is shining and I’m looking beyond today now. Getting it out here was good for me and then Ihad a nice long talk with my son and felt much better. My husband and I are out for a long drive with the dogs now to break up the monotony. You all helped a lot....😘
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Genny, Kayla, JenLea, the coronavirus has made this an interesting time.
With the state of my lungs, if I catch it there won't be any 'hooked up to a ventilator'. It'll be straight to the funeral home.
As a result I haven't been out of the house in three weeks. I've been getting kinda grumpy and cranky. Last night my husband sat me down and pointed out that I needed to find something to do. Someone to connect with. The weather is still horrible up here and I'm in a wheelchair which complicates things. We had a lovely talk. We re-confirmed that we are on the same 'end-of-life' page, and I agreed to get on FaceTime or at least text with two friends a day.
I did. And Lo, I feel better.
Any of you who are near to the end -- you should check whether your hospital currently allows visitors. Ours does not. So my DH needed to be armed with my MO's cell phone and the palliative care service number. Else should something go bad he has no way to express my wishes. Sure in theory they are in the chart but I don't have a whole lot of faith in that.
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Hi Lynne, Kalya, Genny, I hope you are well.
My cough is slowly kicking my butt instead of the other way around but I guess them's the breaks. We're on to plan B (more steroids). If that doesn't work, plan C (more opioids).
I'm glad to have an understanding palliative care team and upset at not feeling better. One of my work colleagues has reminded me that I need to be more of a nooodge. If something isn't working they should be able to offer other suggestions. Cough, Cough, Cough. LOL.
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Pam, noodge away. Get what you need!
Tina
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Pajim, I agree with Tina - noodge. You are in charge and have every right to be as comfortable as possible. Did you try oxygen as your MO had suggested? If it can help, it would be worth a try. Of course, you have no way of knowing if this is the right time, but no one really knows, right? Thank you for mentioning that the hospital might not have access to your final wishes for intervention or lack thereof since no visitors are allowed. I think that most hospitals are not allowing visitors now. If you hadn't brought this up, i wouldn't have thought of it. Thank you for thinking of all of us even when you are having such a difficult time.
Hugs and prayers from, lynne0 -
Good evening to all,
Pajim - I think it's great you and your DH are able to talk about your end of life decisions and reaffirm your wishes.
My DH and I have had a DNR signed for a few weeks now but one of the home care nurses encouraged us to put a signed form on the refrigerator, apparently if we ever call 911 without seeing the signed form paramedics are obligated to resuscitate. That was all fine and great until I realized I didn't want to be reminded of that every time I went into the fridge, DH moved it today.
Up here in Canada I saw on the news that a couple of cancer patients died alone because of this damn virus, one of the news stories interviewed the son of one of them and it was heart wrenching, he was devastated knowing his father was alone. I don't want to die alone, we will do whatever it takes to stay at home.
Thoughts and prayers for us all. Maureen
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omg pajim sorry I forgot to mention your cough. I may have missed a post answering this already, I know you have bone mets and then it spread to the liver, but are they now diagnosing mets to the lungs?
The palliative care team just has to go on to the next treatment and as soon as possible, have they mentioned why they haven't started the opioid treatments yet? Also, I was told today by my palliative care doctor to double my steroid dose and we will know by Friday if it helps with the inflammation which as you know causes pain. I think it's worth trying a different dose for a few days to see if it works. I'm at the stage where everything they do, every day, is to keep me comfortable and as pain free as possible, I found out also today I'll remain in some pain at all times, about a 3 of 10 but knowing I have the pain meds is a bit of a relief, I hope you can find some comfort in knowing there are medications that will help your pain and steroids for your cough, out of curiosity have you tried the oxygen? I’m so sorry you’re feeling this way but your strength still shines through
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I have been a coward. Worrying about several of my friends here, but avoiding this thread. Not keeping up and so not posting for those friends. I'll jump in at the top of this page.
Everyone, thank you for sharing your thoughts. I will definitely think about the issues you have brought up. You are helping me figure out what to write on my five wishes. I have been granted a while longer to do this because my trial meds are working, but I know I need to prepare anyway. Making peace while consciousness is not in question seems very important. Rabbit, I agree wholeheartedly that your making your wishes clear will be a comfort to your husband. My only real experience with death is the week-long vigil waiting with my family and the hospice nurse, watching over my dad after a very severe stroke. He had made it very clear that if the time ever came that life support and disability were to be considered, he assuredly did not want that. We brought a him home and hung out with him. We talked to him in case he could hear us, kissed him, laid a hand on him, just kept him company until he was ready to drift away. We told him we would take care of each other, that his work was done. It was hard, but we were grateful for the anti-anxiety meds, occasional oxygen mask, and painkillers the nurse used to keep him out of distress. We knew we were doing the right thing because he had told us what he wanted. The doctors at the hospital were also very grateful, and I could tell they supported us all. They assured us that a good outcome as in any real recovery was not possible for him and showed us images of his brain. I think they knew that would reassure us later that we had done the right thing by him. (I can't believe I am posting this online.)
My onc told me the same, that with liver failure you get sleepy and slip into a coma.
Pajim, I'd like to say right now that I have always respected and admired you, and some love an affection is in there, too! You have a wonderful intelligence and straightforwardness, and have been so amazingly good-humored through the trials and tribulations. I remember talking on the Halaven thread about how a few of us seemed to suddenly have things start going wrong, and wondering if this was the beginning of the downhill slide. Man, I wish it wasn't happening for you now. Though I do not give up hope. I see that in your usual way you are dealing with it realistically and calmly. And I am taking notes.
I have more messages to type but my courage lacks stamina so I intend to come back and post more another day.
The whole no visitors policy with covid-19 got me thinking that I should type up a brief page of personal info and medical history, for each in my family. This could be placed folded in a plastic page protector and actually pinned to the person who is going to the hospital for covid treatment since we might not be allowed anyone with us. How horrifying. So now I think a legal copy of the person's wishes should also go in the packet.
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Kayla, I was told several times to put my DNR on the fridge. I refuse. I don't want to see it all the time, either. Before we got our new fridge, the old one had wooden cabinetry on the front so magnets wouldn't stick. I used that excuse until we got the new stainless one. Then I kept asking why would an EMT look at the fridge. They eventually said EMT's are used to seeing it there. They look for it there. Not at my house. I just got mine signed by my palliative care doctor and it is still sitting in the envelope I bought it home in. On a table I am planning to clean off soon. Really soon.
Shetland, one of the advance directive forms I was offered by my palliative care people was Five Wishes. I read over it carefully and found it was not for me. The first thing that turned me off were the three questions on the cover page. 1. How comfortable I want to be 2. How I want people to treat me 3. What I want my loved ones to know. The answers to all of these questions is a no-brainer to me. Why even ask them? Being slightly uncomfortable would be ok? Um, no. Oh, excuse me but I'd like to be treated like shit. Please keep my loved ones in the dark. All ridiculous.
The real deal breaker is on the bottom of page three where they say "destroy all copies of your old living will or durable power of attorney for health care. Or you can write revoked in large letters across the copy you have." I have a power of attorney for health care drawn up by my attorney that specifies all my wishes in a very detailed way. That will dictate my care. I do not want to replace it with Five Wishes. Having Five Wishes as "extra protection" does not seem to be an option.
And then, top of page six "I do not want anything done or omitted by my doctors or nurses with the intention of taking my life." Well, yes, I do. It is done all the time. I won't be using this form. Just a heads up about Five Wishes.
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Shetland, you are not being a coward. I co-opted this thread for Lynne, Maureen and myself.
If it's making anyone uncomfortable I can start a new thread saying "Dying here! Good wishes welcome!!" And I'm perfectly serious about that. I go through half-days of feeling OK and half-days of feeling like dirt. When I feel good the sense of humor is there. Otherwise, well. . .
My boss, also a doc, reinforced with me that the paramedics will look for some kind of form with the person for whom they are called. The document is your one shot at a 'get out of jail free' card. (Should that be your wish) In my case the hospital has changed it's policies. The Palliative Care Doc was allowed to fill out the boxes in the EMR on my behalf. The state of Massachusetts uses at POLST form. All I need is a piece of paper which says "EPIC has DNR/DNI" Sounds like it's harder for some of you.
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Maureen, can we get into details a bit? I sorta need help. Advice? Anyone?
I'm taking 5mg oxycodone every four hours. That's the anti-cough, actually. Then I'm taking 4 mg decadron 2x/day to try and stop the cough more. But it keeps any pain away.
This is the mix that my palliative care doc has been messing with. I'm supposed to report in on how this is going. If it's not she'll give me dilaudid.
The answer is 'sort of'. If I sit up really straight, including at night and late afternoon, the cough is better. But not great. Partly it seems that talking and eating makes it worse. And I'm getting the sleepies, regardless of all those steroids. God bless my husband who has made it his project to get me out of the house every day. That keeps me awake.
My real question is whether I'm in the dying process. I don't know. Guess I should ask her and my MO. I don't feel like I'm dying. And it's not like we could move me to a hospice or hospital. We're in Covid-19 surge in Boston. No visitors anywhere.
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No no no — you are on the right thread! Death and dying is often an uncomfortable topic, but it does not follow that the people talking about it need to move or try to make others comfortable. Talk about it. How else do we learn from each other? I do wish we on bco had an established way to have a thread where people can offer their heartfelt words of appreciation, encouragement or goodbye to a particular sister who is in a serious situation. But people will have different preferences about that.
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pajim, I have always loved how ma111, the original poster of this thread, put it so bluntly:
“This post is for those of us with concerns and issues about death and dying to talk about them.IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.“
(The words in caps are how she posted it above.)
So no need for you to go elsewhere unless you want to.
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I don’t want to stare at a DNR on my fridge either. But, my DH and I both decided no ventilators for us.
Having spent the last 2 months being suddenly very sick and needing blood transfusions every 5 days, forced me to think about all this more. I had promised myself that I wouldn’t die bald, sick and on chemo that was a Hail Mary- but, I didn’t imagine a sudden thing would happen like it has. I thought my MO would give me the talk ( in a year or two ) I would gather my family and fade away. I was unprepared for this sudden illness ( I think it started with corona- but, won’t know about that til we get widespread antibody tests).
I am glad we can talk about it here- very few friends can tolerate this conversation.
We have POLTS here also- and assisted suicide also, five wishes sounds strange to me. This has been on my mind a lot and I hope that pain and coughing and any other unpleasantness can be mitigated- at the very least.
How are people preparing their kids?
Hugs and hopes for good days
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Hi pajim - if I step back and look at the last six months of pain relief I'd have to laugh, I started on 2mg of dilaudid and didn't want to go up from there but I'll get into detail after the next paragraph that details my pain sources.
My liver capsule stretching had been and still is a major part of the pain but now my omentum tumours are spreading quickly and pressing and pushing on everything around my bowels, stomach, liver, well everything. Haven't have a CT for a few weeks, in fact no blood work since Doxil ended but this is what we are treating. I was told last week I have weeks to months but hey what does that really mean? I don't feel like I'm dying yet either, if anything the pain is sure reminding me I'm alive lol.
OK, my medications are at these doses as of yesterday: Fentanyl patch - 200mcg/h, changed every 48 hours. Dilaudid - 12mg by mouth at first sign of breakthrough pain which is averaging 3 times a day. If I don't catch the pain, as sometimes it comes on suddenly, averaging once a day, I take 6mg subcutaneous injection and 12mg by mouth every hour until pain is back under control. And last but not least 20mg of Prednisone daily. Next increase will be an "add on", probably Methadone.
Thanks for asking pajim, I am happy to share any part of this with you and anyone. In fact, I think I'd like to know others experience. Maybe this is too much detail but it feels good to get it off my chest.
Shetland - not a coward at all, these are hard times, I think is important to share. When things were going downhill I had so many questions but was scared to ask.
Jaycee - I'll have to have my DH figure out where the form is when he's home and maybe put it on the fridge when he gets out that rare time to pick up groceries.
Best wishes to all this evening, Maureen
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