A place to talk death and dying issues
Comments
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Shelia, I can relate so much to what you are expressing. I’ll share my story a bit. I lived my life waiting to do the things I wanted trying to be responsible. Drugged up abusove parents growing up. Not much money. A whole TV special type sob story. Somehow I came out of that a functioning contribution to society. I don’t drink/do drugs. I work hard. Don’t call in and always pick up shifts for others. Use my blinker and even let people in in traffic. I’m. O saint but heck i think i did ok as an adult. Waiting till I got my degree to get married, waiting till marriage for kids, pay all bills on time, don’t carry credit card debt, leave a note if you bump someone’s car attempting parallel park before giving up and parking 2 more blocks away...anyways we make plans and life makes other ones. I was stage 4 when I turned 30 and 28 when i was first diagnosed. I was moths away from getting my degree with high honors and was looking at brain surgery during mid terms. Not to mention my fiancé and I have waited 10 years to get married. It’s all unfair. I don’t know if there is a way to accept this bad hand dealt to you & everyone here. I had to do our paperwork since we aren’t married (and won’t ever get legally married because of cancer) to give him power of attorney and instructions about what to do. Hardest was picking out my urn and writing letters to everyone with death instructions. It’s sad and you, I think, are mourning. Don’t expect yourself to be ok. You shouldn’t be ok with this bs, but I hope you can find some peace with it. One foot in front of the other. Sorry if I sound like I’m lecturing. I don’t know how not to, it’s a bad habit.
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Excellent points, Lori. I have my docs on file, but it's still hard.
Now I'm facing kidney issues, so the "end" may be closer than I think.
L
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Sorry to hear about the kidney issues Lita. The problems just never end with this disease and I know you've been having a really rough time of it for a while now. Sending over some hugs for you too!
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"Fear is a universal experience. Even the smallest insect feels it. We wade in the tidal pools and put our finger near the soft, open bodies of sea anemones and they close up. Everything spontaneously does that. It’s not a terrible thing that we feel fear when faced with the unknown. It is part of being alive, something we all share. We react against the possibility of loneliness, of death, of not having anything to hold on to. Fear is a natural reaction to moving closer to the truth.
If we commit ourselves to staying right where we are, then our experience becomes very vivid. Things become very clear when there is nowhere to escape....
Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us....
Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy....
Sticking with that uncertainty, getting the knack of relaxing in the midst of chaos, learning not to panic — this is the spiritual path. Getting the knack of catching ourselves, of gently and compassionately catching ourselves, is the path of the warrior....
[With the practice of loving-kindness toward oneself]… [w]e are not striving to make pain go away or to become a better person. In fact, we are giving up control altogether and letting concepts and ideals fall apart. This starts with realizing that whatever occurs is neither the beginning nor the end. It is just the same kind of normal human experience that’s been happening to everyday people from the beginning of time." ****Pema Chodron/author****
I don't know how long it's been since I posted, but I do know this thread hasn't been active in a while. I've always been grateful for the death and dying posts that popped up in my email, always paused to send loving-kindness to the person who posted, and allowed myself no guilt during those difficult times when unable to share and offer support here. The quotes noted above (written by Pema Chodron) I've been pondering off and on since mid July 2017. Although I've continued to maintain NEAD status, I've experienced deep and wide challenges involving my fragile heart, a couple of rare vascular diseases, and autoimmune flares. Pain I know well, gratitude and joy I know well. Love, thankfully, I know well.
The quote from above that has resonated with me the most: "Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy...."
Perhaps putting this message out into BCO/MBC world today will bring a needed insight or a spacious sense of peace or a well-spring of self-compassion to someone. As always, with loving kindness to all who read and post here.
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Brenda - I'm not stage IV, but I wanted to day I'm grateful to see your post. Thanks for keeping this thread going.
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Brenda, you are such a talented writer! The rarest of all the rare things was to get born, and to this day astronomers say we seem to be quite alone in the universe, or at least in our part of the universe, and they've been hunting for a really long time now. Given the highly unlikely event of our being alive in the first place, a functional cure for this malady doesn't seem like so much to ask for..
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I am not sure that I have ever posted on the site but it has been a while since there has been a post and I have it saved as a favourite so I do notice. The subject of death and dying is difficult for me because my husband does not want to talk about it. However just recently I persuaded him to allow us to find a notary or a lawyer to do the paperwork. I think we have the right person now and will be pursuing it. Like many of us, it is uncertain as to how long we have. Stage IV makes me crazy especially with my husband unwilling to be part of it. I led treks in Nepal with only a short break when I was Stage III and was a quilter too. It will be two years in May since I led my last trek and the last quilt I finished was in August of that year. My cancer is not visceral but it has left me with no use of my right hand which is dominant. Yesterday and today I have found BCO Is either slow or repeats everything so I will close now.
Marian
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Mariannelizabeth. Micmel is looking for you.
I've never posted here, either. But, I have been busy lately with paperwork, getting affairs in order. I got my will, and all the powers of attorneys, done. Yay. It had not been updated since my husband died nine years ago. I still have some money to get transferred to one Fund so that it will be easier for my kids. That's my goal, do everything I can ahead so they don't have to do it. I was even wondering about the deed to my house. It's been paid off for fifteen years but I haven't received a deed. The original loan had changed hands so many times I don't know who had it. So I guess I have to do a title search on my own?
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Hi Grannax2. I will check in with Micmel. Fun to find each other on other threads. I have done none of that so good for you. I really will get on it now that my husband has agreed to that part. I am sorry to hear that you lost your husband regardless of how long ago. But I agree that for our kids, it is important to make it easier for them as they will have enough to deal with.
Marian
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Cure-ious,
I read an article by an astrophysicist who emphasized our planet's amazing capacity for promoting life and how, indeed, human life seems to be rare within our galaxy. Makes one stop and think at least a little harder about the precious quality of life shared by us humans (not to mention all those other forms of life). Surely we can hope that the probability of a cure for all cancers is relatively high. By the way, happy Earth Day!
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Marian, perhaps the process of "getting one's affairs in order" (that is, all that paperwork) will help your husband to ease into thinking more about dying and death. After all, he will die one day as well. When I think of helping people have a conversation about dying/death, I consider where their "growing edges" might be and try to use one of those edges as a transition to acknowledging our mortality and some of the feelings, beliefs, concerns, values, etc. that relate to that. When I feel myself to be uncomfortable in the midst of something--or on the edge of something, whether it be fear or anger or sadness or regret (whatever), I try simply to study that experience and seek to learn from it, rather than trying to rush toward resolution or away from the experience. Sometimes being patient with what makes us uncomfortable allows us to see more clearly the underlying issues that keep us stuck where we are, and we can explore whether one of those issues might be safe enough for us to contemplate and understand more deeply. Another thing to keep in mind is that some of us who are more intensely invested in exploring end of life issues may want others to reflect back to us an investment similar to ours, and that just may not happen. We may realize again that we don't have control as much as we might like. Of course, many of us want not to feel isolated in our own contemplation of dying /death, so maybe that need to feel connected while contemplating and moving toward an expected end can be met through more than one person. Being with someone where they are, instead of where we wish them to be, is often challenging; interestingly, when we find ways to be with them where they are they sometimes move into a different space. Just feeling accepted and respected often leads to greater trust and the deepening of shared experience. Perhaps these insights may help....
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Grannax2, my condolences on your loss of your husband. And kudos to you for tackling end of life paperwork, rarely an easy task to get finalized. I get to a place where I think I've done much that needs my attention, then I think of something else. If you are wondering about your deed, you can check with your local county tax office to see if there is a lien in place. If there are no liens, you might then check with the last lender who handled your mortgage to see about getting a deed and paperwork that shows your mortgage debt has been satisfied. Another aggravating task, I know.
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Brenda, Thank you for bumping this thread. It is SO important that we have a place to talk about death, and where else but here? My DH is in total denial and I'm sure most families and close friends don't want to think or talk about losing someone they love. I am still doing well right now, but I often find myself thinking about the future or perhaps I should say the absence of a future.
Marian, I am so sorry you have lost the use of your dominant hand, that must be so difficult to accept. Cudos for finding someone to help with your paperwork. How did you find someone you felt comfortable with? Best wishes on getting this done and not needing it for a very long time.
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While discussing taking the accelerated benefit payout for my life insurance, DH became slightly annoyed and said “sometimes you act like you’re going to die or something”. To be fair, he hasn’t seen the losses here but I don’t know where his thinking I’ve got 20 years comes from. I mean, I’m stage IV with brain mets, just being realistic.
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Every time someone passes here, I mention it to DH. Especially if I have been telling him about someone (like Z), I mention it. "Remember that woman I told you about from Los Alamos on my cancer forum? She died." Keeps it real.
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I found it easiest to approach one thing at a time with dh rather than look at it like a big project needing all of our attention. The first thing of importance for me was getting a cemetery plot and discussing burial arrangements. I didn't want dh making decisions in the midst of grief or being taken advantage of financially during that time. While initially it's a weird thing to be doing, dh and I definitely felt a sense of relief having this talk, and making decisions.
It was a couple years after that when I mentioned I wanted to get a headstone. Weird at first, too, but we came to an easy agreement on what we wanted, and I added a few design touches and it turned out to be much more meaningful than I imagined.
It was also easiest to bring these kinds of matters up while we're in the car. I mention something, we talk a little, and then I change the subject. Then I take action to get the task done.
For other financial affairs like wills and retirement funds, I just tell dh, “TCB!" meaning we are taking care of business, getting finances straight, making sure whichever of us survives the other will be as financially sound as possible. I see it as a great form of love and a very smart and responsible thing to do, and I frame it in those words when dh and I are on the topic.
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Brendatrue, what a profound statement you write!
“I read an article by an astrophysicist who emphasized our planet's amazing capacity for promoting life and how, indeed, human life seems to be rare within our galaxy.
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(Cross posted on the Ibrance thread.)
On the death and dying issue, I have a phone call appointment this Friday to "tell my story" to Compassion and Choices, the organization that works on trying to get legislation passed to legalize physician assisted dying. I've been a member for a while. The chapter in New Mexico used to be quite active but has not been recently. I'm not sure why they contacted me but I guess I'll find out.
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Jaycee, is medically assisted dying allowed in any States? It is now legal here in Canada. I think it's a good thing. Of course there are those railing against it. As if there is some redeeming quality about a long, ugly death.
I always think of that episode from the series 'Grace and Frankie' where the terminal neighbour throws a big party and at the end, ends her life. I think, good way to go out.
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- California (End of Life Option Act; approved in 2015, in effect from 2016)
- Colorado (End of Life Options Act; 2016)
- District of Columbia (D.C. Death with Dignity Act; 2016/2017)
- Hawai'i (Our Care, Our Choice Act; 2018/2019)
- Oregon (Oregon Death with Dignity Act; 1994/1997)
- Vermont (Patient Choice and Control at the End of Life Act; 2013)
- Washington (Washington Death with Dignity Act; 2008)
This came from a website called Death With Dignity. The links are not clickable. States get legislation but there is a constant battle for it not be be overturned. I didn't see a date on this list. This looks accurate.
You can always look at Compassion and Choices.
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The state links above ARE clickable. Each goes to the Death With Dignity site info about that state.
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If a patient is physically suffering in a state without medically assisted dying, there is the option of palliative sedation.
I realize that palliative sedation raises many concerns. I offer this option for those patients in severe physical pain that does not respond to any other treatment.
My dear friend Ann Marie was in this severe physical pain. She chose palliative sedation. She did not appear to be in pain her last week of life.
Here is more information about palliative sedation from the American Association of Hospice and Palliative Medicine. http://aahpm.org/positions/palliative-sedation
Madelyn
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Thanks, mom. I made the link clickable here:
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After I did the link above, I actually read the piece. Very interesting. I've read it twice so far. This is something I always assumed was done routinely with dying patients. I guess not. Lots of sticky points for doctors to consider, some I agree with some not so much. At the end, they talk about bringing in a provider who is not normally part of the palliative team like a psychologist. That seems odd. Wouldn't a psychologist be useful to have on the palliative team? (And I had to look up "existential suffering.") There was a lot of talk of making sure the doctor/palliative sedation did not decrease time to death. Wouldn't want to cross THAT line.
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I just read the link too and I agree Jaycee that it seems like a psychologist would normally be a helpful part of a palliative team. Also, why wait till a person was about to die to try to alleviate existential suffering?
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Pisses me off!
"There was a lot of talk of making sure the doctor/palliative sedation DID NOT DECREASE [the] time to death."
When you're on hospice, don't you want to go quickly? I don't want to linger on for weeks, and I will certainly make that known.
L
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My thoughts exactly, Lita. If you read the whole piece, there are several references to this issue. Covering of a$$es, in my opinion. Doctors/providers in states where death with dignity is not legal (never thought I'd type those words), there is a legitimate fear of legal issues for providers. Even in states where it is legal like CA, it must be carried out in a certain way, putting providers in legal peril, as well, who choose to use palliative sedation. There is a fine line, at some point, between physician assisted dying and palliative sedation. I may want to say, "knock me out and I never want to wake up." Palliative sedation? Physician assisted dying? Definitely death with dignity to me. Obviously, I've been thinking about this because of Mom's article and also because I have my phone call with Compassion and Choices this morning. I want to feel prepared but feel totally unprepared. I know. With assisted dying, you take something to hasten death. With palliative sedation, you don't. Not a fine line but??? Thanks for letting me think this through here. I'm obviously not done.
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A friend with MBC, brain mets, is in a coma in the hospital. The funny thing is her cancer is very-little-and-stable in the rest of her body and it's probable that the brain is clear at the moment as well. It all started when she lost the use of her right arm. Maybe the brain mets are active after all. Neurosurgeon says "well there's something there, we can take it out and should help the arm".
She decides to do it. Surgery goes well and a week later she gets an infection. Back into the hospital where there is a series of unfortunate events (no medical errors, just s--- happens). Anyway, she bleeds into the brain stem.
Which brings us to last week. Her husband has to decide whether to try and get her off the ventilator and see if they can wake her up or let her go. If they can wake her up, maybe they can get her to rehab. They have no idea how much damage there is from the stroke. The doctors can't agree on whether she can make a 'meaningful' recovery.
Anyway he (under pressure from family I think) decides to give it a go. She was sort of responding so I guess everyone got optimistic. Except me. I have no idea how she is doing this week (she's not in my city and she's a work colleague. I've never met her husband). Last I heard she was sort-of responding.
All I can think is "oh no!". And I'm so sad. It's not even the cancer that's causing this. But what this really made me do is go home and talk with my husband. I do not want him to do this to me. Coma? Stroke? Rehab center I'll probably never get out of? Don't wake me up. Just don't. I don't care if I could have been the 1/100 who recover.
The ladies on this site who have shared their dying experiences and watching this from afar have really helped me define and refine my end of life wishes. Does anyone remember Rosevalley? The fall before she died she was throwing up multiple times a day from the chemo. She was miserable and we actually encouraged her to stop if she wished. She didn't wish (which is absolutely fine) and lived another nine months. I don't think I could do that. Nor do I want to. I thank everyone for sharing.
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I am right there with you, pajim. The weird thing to me is how she had surgery when she lost the use of the right arm (dominant arm, I assume). I lost the use of my right arm after my mastectomy and would never have considered surgery. Of course, it was related to my MS and I was pretty sure I would get the use back. But still. I wonder how she would be if she had not had that surgery. It does make you think that you need to keep decisions in your own control. Tell people around you that you DO NOT want those measures. No pressure from family, please. My advantage is that I have a very small family and they all know my wishes. No sort of responding for me. I am sorry this person is suffering but it makes you try harder to make your wishes known.
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What a terrible story pajm!
For everyone who knows what measures they do not want taken to prolong life (artificial breathing, artificial feeding, etc) please make sure that in addition to talking to family members that you have an Advance Directive signed and on file with your doctor(s), your hospital, and anyone you have designated to make health care choices for you. The California Advance Directive let me designate 3 agents with Power of Attorney, so if my husband can't make the decision (ie. we're in a car accident together), my sister is next "first alternate agent", and if she's not available for some reason there is a "second alternate agent". The Advance Directive is a legal notarized document (although friends in the health care field told me that families still attempt to override them). Even though we've had the discussions, I don't want to count on my husband and other family members who may be affected by their emotions to face having to make these terrible decisions. I made my choices legally up front so no one has to bear the burden of feeling guilty wondering if they made the right choice. Every time I check into my hospital they always confirm at check-in that my DNR, POLST, and Advance Directive are still on file and in effect.
Advance Directives are specific to each state and can be found here -
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