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How do you discuss with others the looming issue of death? Most don't want to discuss it; they don't understand that I want to discuss it, sometimes, with someone, somewhere. Even if I cry when discussing it, I need to discuss it!
Cancer Arthritis Pain Heart attack Hospice care Emphysema Morphine
Hello Judyv,
My experience has been that people are so afraid of death that speaking about it is impossible. They usually brush it off or tell me I am going to outlive them.....!!! I think I would speak to a professional if I felt a deep need to discuss it at length. I would spare my family and friends if you will...it's just so contrary to our culture and so painful for them. When I do bring it up now I make wisecracks...like I have VIP passes and I will have front row seats.....silly I know....
Mena
Judyv,
If you need someone to talk to about death you send me a note any time. I would be happy to listen and lend you a shoulder to cry on.
Death is something that our house hold has been discussing for the last couple of weeks. We had hospice over this last week and got a lot of questions answered for their care of Debi. Death is not some thing to be afraid of but is just as much a part of life as breathing of talking with your best friends.
GOD has promised a new life after death.
I do believe that there is something special for each of us after this life.
GOD BLESS
Scott
Dear JudyV,
I think talking about death is a normal part of being stage IV. I redid my will and final wishes. I purchase a preplan arrangement so all will go as I want. I attended to all the nitty gritty areas.
Not many people I know want to discuss death with me. So I am here, if you want to discuss death issues.
I remember a quote I read once. It went something like this (better written though):
Death is the one certainty we share with all living things; we share it with all those before us and all those who will come after us.
However, if you are in your 20's, 30's, 40's and even 50's, it is a bitter pill. It isn't what we want afterwards either, but in our 60's, 70's and even 80's, we had a good chunk of life.
DJ
I think that thinking about death is far harder to talk about it. Many nights I can recall thinking about losing my mother and how badly I wanted to talk to her about it, but couldn't for fear of scaring her or making her sad. Sometimes you just have to say what's on your mind, even if it makes you cry it will feel much better when it's out.
I'm only 24, I don't know if that has anything to do with the way I view dying, but I just don't think that it is that scary. Living with cancer (just my opinion) is far worse then death itself. Death is the realease from that evil grasp of the cancer that limits your quality of life. I'm not an expert, but my mother was the world to me. She was my very best friend, and it was like her soul was set free with the last breath that she took and cancer could no longer bound her by the pain and the anguish. When I think of death after battling cancer, I think of waking up from a bad dream into everlasting life no longer having to feel the pain or saddness caused by such an evil disease. Although I'm not a family member, as family members are generally more comforting to speak to, I would love to talk to you about death anytime.
Judy, I really understand. That is something that is bringing me down right now. The quality of my life has been more impacted by the treatment than the effects of the disease at this point BUT I want to talk about/deal with death issues while I am able. You know I made the decision to hold off on telling most acquaintances but those that do know try to avoid the subject and want me to always be up at all times. It is tiring.
I thought of you yesterday. I bought a copy of the September issue of More magazine. There was a great article on couples living with at least one of them having a chronic illness. It reminded me of some of your previous posts. This post is just a reminder of another thing we metavivors deal with that is not fully addressed.
Death is not frightening to me but the getting there is. We all want to be our old selves and independent for as long as possible. We all want our transitioning to be as hassle-free for our loved ones as possible yet we want to be remembered in a positive way. We want to tackle the nuts and bolts of death (practical stuff) yet it seems like we are tempting fate.
While I have no answer but to agree with Mena and DJ in particular, hope you know that WE all understand your sentiment and to remind you that you can "friend" me anytime for further "conversation".
You've got me thinking Judy - for some time now women have been encouraged to formulate their "birth plan" when they're pregnant and birth is looming. This is actively encouraged and expected.
I well remember 9 years ago, having my 'birth plan' going completely 'awol' - labour started with aromatherapy oils and Andrea Boccelli, but progressed to an epidural and a caeserean three days later.....
So why not a "death plan" with what we'd ideally like to happen - with contingency plans for various scenarios, whether we die at home, hospice or under a bus.
Maybe you could write down your wishes and choices - from background music, that may soothe your soul and calm - to drugs that your hospice team has recommended. If desired, add songs/hymns and type of flowers for your funeral.
When my father had a heart attack in 2003, he wasn't expected to survive 24 hours, but lived 11 days. A few days after the attack, I calmly spoke with Dad about his wishes for his funeral (he'd planned&paid the $$ nuts'n'bolts details) - the hymns he'd like, and as a devout Christian, the style of service he'd like (it was a t a funeral chapel - our old family church had been pulled down).
Also could ask him where he'd like his ashes - Mum died 2 years before- we always knew what Mum had wanted - she'd spoke of it throughout her life - but there was no talk of what Dad wanted (to be with Mum!).
This was all an amazing comfort to me, to know that Dad's wishes were granted and while in ICU he sang for me a hymn I was not familiar with - a 'connection' for me now when I hear it. So this 'death plan' gives peace of mind to the dying and solace (in hindsight) to the living.
We are like women "in labour" - where birth is going to happen sooner or later......Only we're at the station waiting for the 'out-bound train', which will stop for us, sooner (or later!) .....simply making a "plan" won't hasten or delay this, and if our loved ones can come to understand this, they'll realise it benefits everyone.
So maybe approaching loved ones with casual notes of what you'd like to happen would be an icebreaker to encourage them to share this HUGE event in each of our lives.
God bless and good luck with it, xxxGGC
Oh Deanie,GGC, Duesterhoft, dj64, gasketman, and faithmena, your answers mean so much to me. Especially that you are willing to discuss the subject with me!
For years, my daughter and I have planned our funerals...We each wanted a big, sad one, and whenever I heard a heartwrenching hymn or song, such as "The Dance", of "It is Well With My Soul", I'd add it to my "funeral songlist", and my daughter did the same. We did this for about 15 years, so our list is long, LOL.
Now that death is seriously approaching, I know that I want a happy, light memorial service, no tears. I want laughter, and good memories to be shared. That list of sad songs needs to be shredded, so that someone doesn't see it and think erroneously that I really meant it!
I'm planning to go to one of those many places in the mansion God has promised to prepare. After death, I know it will be as promised.
It is the process, the leading up to it, that I fear. Will I be in awful pain; will I retain control of bodily functions; will I be kind to those who take care of me? I've seen people who, when death approached, got really crabby and demanding and depressing, totally unlike who they'd been their whole lifetimes.
I want to be nice, I want to be sweet even, and be able to reassure those around me. Is that possible or does everyone change? How do I make sure it is a peaceful passing for everyone involved? I want to be chatting about old times, old memories, of my wonderful life, with those who care for me and visit me. I want I want I want, huh?
Do you know people who've been mostly comfortable with the dying process suddenly become terrified of it? I do have my terrific hospice team, which includes a chaplain, to whom I can talk, but I want to be able to talk about it with my husband, my kids, my best friend.
Thanks to you wonderful, caring people, I can ramble on here and you really do understand! Thank you. I love you all.
Judy
Do they really not want to talk about it or are they worried that it will be upsetting to you and them? I have always viewed chronic illness and death as being a normal part of life as my father spent my childhood dying of emphysema, and he died two weeks after my 18th birthday. He was always preparing my mother to be a widow and making sure that things were organised.
I don't think many of us really fear death, what we fear is dying - can we do it with grace and dignity? If you believe in an afterlife and you have not done any serious wrong then you have no worries about that. If you believe that death is the end, then there is nothing to worry about once you have died, you just become a part of nature again in which ever form you choose.
I fear becoming a burden and nuisance to anyone. I have had a very lonely life and don't really think that anyone will want to be involved in my death other than to occasionally visit. It is the fear of not knowing what will happen. My mother died of an aneurysm and her last illness was short (a few hours) but in hindsight came at a perfect time for her before the arthritis stopped her doing the things she enjoyed most, and this was becoming a real problem. One of my grandfathers evidently spent the afternoon in the garden came in for a cup of tea, put down the cup and just died. This is what we all hope for, but the fear with cancer is that it will be drawn out, painful and stressful for us and those around us.
JudyV have you tried writing a letter to those you want to discuss this with and letting them know how important it is to you to be able to discuss this with them. This would take the emotion out of raising the subject and allowing them to have this reaction in private and then be prepared to deal with it when the subject is raised. Possibly they fear their reaction and how this would impact not only on you, but also on their own need to be controlled and positive for you. For us maybe in the end death will be a positive thing, but maybe they can only see the negative. Worth a try.
We are always here to listen, though obviously we are not the people you really want to be listening to you.
((((JudyV)))) love Vicki xx
Why is death such a taboo subject for so many people when it is such a natural part of LIFE? I think you have most assuredly found a venue where we are willing to talk with you any time about it...but I hear where you are coming from. Perhaps you could write a note to your loved ones explaining your sentiments?
The only people I know who can talk to me about death (especially MY death), are the friends I made on this site. Now that is beautiful, but when the time comes, is Rene from Alaska or GGC from Australia really going to be able to express what I wanted? Several years ago, I began to keep a green folder next to my laptop. I call it my 'fun' folder--with fun being short for funeral! I have some suggested songs, readings, etc. in it.
I want my ending to be a huge celebration of life, but after losing both my parents, I know how difficult it will be for my loved ones to kick up their heels and be dancing right after my untimely demise. And I am arrogant enough to think WHENEVER I pass, it will be untimely!
Please know that we feel your pain and want to be able to help you through this normal aspect of life. Hospice is wonderful in explaining the stages/signs of death...so wonderful that after going through my mother's death, a few short months later when my Dad was in the hospital, I told his doc he had the 'death rattle' (a raspy, weezy kind of cough that precedes death). His doc reemed me out and said it wasn't his time. P.S. My Dad died a few minutes later.
Death can be beautiful and I do so look forward to what happens beyond this life...just not yet :)
((hugs))
I belong also to breastcancer.org and under the Heading of Palliative Therapy/Hospice Care, I opened a thread of Facing the Future. Facing the future allowed us to discuss death and dying. We talk about funerals, celebrations of life. We talk about costs (Did you know you could order a casket through Sams Club?). We talk about fear, religion and anything else that comes to mind. So if you cant talk to your loved ones, you may want to start there and work your way around some of the topics with your loved ones. Getting to say your piece may be the start you need.
God bless you, Judy. Your posts are always so thoughtful. Although I am not in hospice like you are, I am quite aware that my cancer can turn very aggressive at any moment and turn what's left of my life upside down.
There is a great book by Maggie Callanan and Patricia Kelley. They are hospice nurses. The title is "Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying".
I found this book very helpful in understanding exactly what you are experiencing. You might ask your loved ones to read this book as a favor to you. Read it first, and you may even be able to point them to certain examples.
I found the book to be very comforting, from both the standpoint of a person dying of cancer, and from the standpoint of loved ones trying to communicate gently and lovingly with a dying person.
When my time gets closer, I am definitely going to insist that my husband and daughter read the book. I think it can help open conversations that are so difficult to start.
Love,
Blanche
I share so many thoughts expressed here. The...who can I really talk to. My husband and I are very close, but that makes this discussion harder. He has always been strong, but this is tearing him up. Each night we try to walk a bit. I make a few blocks then he continues on alone and spends his time thinking and sometimes crying. It is a picture of the future in some ways. I am usually ok with the dying thing - occas panicy thoughts about the 'will it be painful' part - but for the most part, I figure I get the reward in heaven. Those left behind get the 'suck'.
I agree that it is hard to talk honestly about this with those who love us because they are hurting too, and with those we don't know us as well, because they get afraind and don't want to accept it either. Our hospital has support groups but I have never chosen to go.
Having each other here is wonderful - thank you all.
By the way, in preparation for not being here, I have been writing letters to my kids for milestone times, and want to make some things for their weddings (future). I also hope to record myself reading books for future grandchildren. Then I will leave the recording and a copy of the books for them. Anyone else have ideas?
WOW, all of you have said just about everything and wonderful too. You are so right, it is hard to talk to your loved ones about the subject of dying. They do not want to hear of it - HECK, I don't want to hear of it. I too get scared about what is to come - pain, losing control, scared of never seeing my family, friends again and all of them enjoying all the wonderful times we share now without me, etc. I know we are told we will be going to a better place BUT I don't know about of you but I sure find this place quite wonderful. All of you are a God send to me. You express what I feel and I wish I could know all of you in person instead of on a website. God bless and I hope and pray there will be cures for all of us.
I really feel your sense of isolation in your situation. Not being able to be open and real with those closest to you about something so monumental as your impending death must be such a lonely feeling. You've gotten some great suggestions here, and I'm glad to know that you have hospice care ongoing. I would suggest that you ask for some private time with your hospice nurse or chaplain the next time they come, or call for one asap, if that is your wish. You can discuss the situation, and ask how they can help you navigate this with your family. As you can imagine, this is a large part of hospice care, and I'm sure that they'll have sensitive and useful help to offer you. There are also great resources in books available on the topic of death and dying. The seminal works are by Elizabeth Kubler-Ross, a Swiss physician who started the whole movement to bring out into the open what happens when we learn that we have a fatal illness, and how we can prepare ourselves, and how family and friends can help, and can cope, too. I hope that you continue to talk with us here, too. I wish you all the best in this, and in all things.
Judy, your topic has not left me. In July I spent all day, every day for a period at the hospital as my sister-in-law transitioned. My husband has a huge family. He is one of 15 children, who have children, who have children. Many of my in-laws made continual comments about every negative condition surrounding a cancer death. Because I love my husband, loved this sister-in-law, wanted to counter the comments for her children and knew they had no idea how it was affecting me since they didn't know my diagnosis...I felt compelled to be there. I have yet to really recover.
This is in contrast to my uncle's death a few months earlier. He was at home and under hospice care. It was for me the most humane and peaceful death. First, he was surrounded by those who loved him and in familiar surroundings. His care was generally by those same people but supplemented with hospice assistance. Toward the end, I heard the death rattle. He was semi-conscious due to the morphine but periodically made eye contact.
The most surprising thing to me was even though we had been told it was a matter of hours, he seemed to fight. The hospice caregiver was wonderful and explained that we fight in dying just as we fight to be born but assured us it was not due to pain. I prayed that was true. She further told that the dying's spirit can travel and she had experienced people who had not actually died who were able to tell of conversations and actions in other rooms while they were in the process of "dying". This was comforting because it confirmed we are not our bodies.
Judy, I know I am rambling but wanted to share that experience with you.
Deanie, that is really a comfort, and a very convincing reminder that our spirit is separate from these sick bodies. I am so sorry you've lost two people you love so close together. How horribly difficult for you, and how strong you were to stay with your sister-in-law at the end of her time here.
Ramble away, sweet Deanie, because you always have something valid and valuable to say. I am so glad to have met you!
With love,
Judy
Hi Judy -- I'm glad you have received so many replies. All of us in Stage IV think about death, as if we are honest, we know this is in the future. Either we die, or the planet becomes very over crowded. It is the way of nature, the way of humanity -- to be born, to live, to die -- and I believe to die in God's hands and in his mercy.
I have found that with your really close friends, you can talk about this subject by telling them to stop and listen to what you have to say. I said, "It's not helpful for you to be talking about a cure and how I'll live a long time and how good I look. I want you to know the facts. I will die of these disease unless I die of something else first. It is a deadly, terminal disease. I don't feel as well as I look. Telling me how good I look, makes me feel alone and misunderstood. What helps me most is for you to understand with me where this is going to end and that I'm on the road. Just be my friend. Don't worry about cheering me up. Just be with me and listen to me." Really, I've had this specific talk, just with one of my cousins who kept trying to keep it light and cheer me up. This was quite irritating to me, even though with my friends I do laugh often, and love to laugh. But, laughter must be balanced by reality -- and the reality of our situation is enough to make you laugh.
Judy,
You are such a loving person, that even facing your own death, you're worried about how it'll affect others. Your hospice team is there to make sure that your pain is controlled, and that you're as comfortable as possible.
As to your family, much as you'd like to, you can't really control how they'll respond to your dying....that's their responsibility.
This is an opportunity for each of them for personal growth. Some will grow and be enlarged by ushering you through, others won't, and that's their path. Having been a visiting nurse for many years, I've helped people and their families in similar situations. With the assistance of the hospice professionals, your family can have what's happening "translated", and made more understandable, and hence, less frightening. In that space of acceptance of what is happening, miracles can happen. Estranged family members can heal their rifts before it's too late, deep love can be expressed, and people, witnessing another making the transition, may loose their fear of their own eventual passing. Or not.
I wish you peace, clarity, and that love surround you now and for all of the rest of your days.
Ahhaha, that is so perfect! I am going to print out these words of yours and memorize them!
"It's not helpful for you to be talking about a cure and how I'll live a long time and how good I look. I want you to know the facts. I will die of these disease unless I die of something else first. It is a deadly, terminal disease. I don't feel as well as I look. Telling me how good I look, makes me feel alone and misunderstood. What helps me most is for you to understand with me where this is going to end and that I'm on the road. Just be my friend. Don't worry about cheering me up. Just be with me and listen to me."
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