Do I need to die well?
Comments
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This is a great discussion! I must add:
We can't KNOW what is necessarily right for out loved ones, nor should we remove the chance for them to care for us! (it may be exactly ehat they need to do!)
We live in a culture of "control" When I was trying to orchestrate my death I came the the realization that no matter how much I love & care for them, or howe many scenaios I created, I do NOT have the perfect plan. And if I did it wouldn't save them from feeling pain.........
I think it is hugely important to consider all the facets of our deaths. I speak of it openly & freely, but I have been on this road for over 5 years & have had lots of practice. Follow your heart & whatever is most natural. In the end, we won't be here to judge the results---or clean up after ourselves! LOL
Be well & stay strong
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Dear ladies -- I hope you will not see this post as an intrusion. I work in the hospice field and have long been concerned that all the discussion -- mostly helpful and liberating -- of the "good" death can carry its own sort of tyranny. So this thread caught my eye.
As it happens, I spent the day today with Ira Byock, author of "Dying Well", and I shared with him some of the commentary from this thread. He was quite distressed to hear that his writing on the possibilities for growth and change and meaning even at the very end of life could be seen as prescriptive. His "shtick" (his word) is all about the living that can be done in dying -- the joy in the midst of pain, the deep connections in the context of loss, the healing in the absence of cure. It's not about doing any particular thing or not or following any particular model or not or being in any particular place or not.
He then said something very helpful: In the phrase "dying well" -- instead of seeing "well" as an adverb modifying dying, think of it as an adjective describing the person -- that the person who is dying is doing it in a state of wellness, not doing the dying well. Does that make sense?
We all must find our own way and place to die -- it's not up to anyone else. If you are not comfortable at home, there are other options. Hospice care can be provided at home, or in a nursing facility, hospital, or in a dedicated home-like hospice facility. Some families find the hands-on caregiving to be very meaningful and helpful; others find it stressful and would prefer to just be the daughter, the husband, the brother, the son instead of the caregiver. No one formula is objectively "better" than any other. It's up to you.
Blessings to you all -- Jenbal
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Well, that's nice of Ira to say that about dying "well", but I'm assuming he means psychologically then, because I don't think I will die physically well! I think the posts here show how mentally prepared we all are to die. Not because we want to, but because we are realists.
When my Dad was dying, near the very end, a week or two away, I asked him if he was scared of dying. He said no, just of the pain. I assured him we would keep him pain free. And we did. Talking about it in the open helped a lot with dealing with the emotions. I didn't cry when he died. I felt like he had just gone on to the next level...
I spoke at his funeral and didn't cry either.
Believe it or not, watching Six Feet Under on DVD (no commercials to break up the story line) really gives you a view on the dying process and the emotions that follow for the family. Anyone else watch it?
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Jenbal,
Thanks so much for the clarification about the phrase "dying well". I did take some of that from the book. Also, I can see that I read the book after a conversation with my social worker about dying at home, so I think I was reading his book through a biased lens.
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Amy - thanks for sharing the story about your uncle. I had a chuckle over that one and told the story to my hubby. It opened up a whole discussion about dying which I think we've both been avoiding discussion of. I was able to tell him how I wanted to be buried and I thank you for providing the opening for us to talk about this. Sometimes there's definitely a time and place for humour.
This thread has certainly been enlightening for me. I have not been with anyone "near the end" and it's uncharted territory for me. How do you plan your own last days when you have never had the experience of being with someone at the end. One friend of mine was in a palliative unit and I visited her but was not there at the end. She had passed 30 minutes before I arrived. I did hold her hand with two friends and said a prayer before she was taken away.
My hubby, although nervous about fluids, is a loyal husband. He's been with me through thick and thin and I do believe, deep down, that many people "step up to the plate" when they need to. I'm not nervous talking about death but I find that many people just "shut down" when the discussion comes up. I keep a lot inside because I don't want to "scare" anyone with my bluntness. So this thread has been very informative.
Cheryl.
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I thought I posted on this one, but I guess I didn't (can't find it) must of been drinking my wine!!
I was with my Grandma when she passed. We spoke a few words and she feel asleep. My mom and I were talking quietly when she passed. It was peaceful. Not sad at all. My grandfather had my other grandma there and his daughter who massaged his feet until the end.
Now, I am not afraid of dying. What I keep posting,
What about our YOUNG kids, should they be there? Do we want to leave that impression with them?
Janis
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Hi - my friend, the hospice nurse-turned-social worker, responded to my question - and she gave me permission to reprint her own words. I hope her information is helpful:
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While the notion of dying at home with family sounds very tender and comforting there is the big issue of pain and discomfort. Home hospice is not equipped, in my opinion, to handle emergency pain issues. If you were with a fabulous home hospice with good staff the turnaround time for a medication change is long at best. Things change very rapidly at the very end. Pain, secretions, bowel obstructions etc, etc can be excruciating if not handled correctly. This is why, it is common to start with home hospice, but towards the end, to switch to inpatient hospice.
Inpatient hospice can use injectable meds and change them at will to respond to a patient's changing needs. The patient and family are supported by staff and they feel at home in the patient's room. They also have the extra support of other families who are going through the same experience and can become lifelong friends. They are also more apt to attend a bereavement group if they have connected with the staff. Remember that they are allowed to spend the night with the patient as well. Hospice has the pharmacological capability of allowing for a natural death while interfering with the pain of the body shutting down. I have become a firm believer in this type of end of life care. It is best to visit the inpatient facility before signing up with a hospice. I think that free-standing inpatient units are the best and I would avoid units that are just beds in a nursing home (it is not the same thing in my opinion).
I also believe that the family benefits from remembering the patient as alive and well in the home setting. I have had people say that they regretted having the home as the setting. Now for the hard stuff:. When a patient dies at home the body has to be removed and this is totally traumatic for the family. When they pass in an inpatient facility they are encouraged to stay with the body for as long as they need then say goodbye when they are ready. The funeral home does not come to "take the patient away" until the family has left. Of course if the family wants to stay they can but most do not as they recognize that some experiences are not necessary and just needlessly painful.
Now having said all of this I do think that some do home hospice in a wonderful manner and derive great satisfaction from the experience. It remains a personal decision. I want my family at my bedside but prefer to have a professional changing diapers etc.
I know I have been too graphic but actually understanding what end of life can look like is important if we are to make good decisions. We will all face this some day and hopefully the boomer generation will take it out of the shadows and allow for a fully informed process.
On a lighter side we have had weddings in our hospice and one patient had his memorial service while he was still alive and each family member shared their feelings to him. I will tell you there was more laughter then tears. I have witnessed death after death. Those that are awake and aware and comfortable have over and over again told me how beautiful it is. It appears that they are escorted by loved ones who come to them and they lose their fear and are given a glimpse of where they are going. I held my girlfriend's hand as she reached out to Jesus and smiled beautifully and said "I am ready". BTW the MD's call this an hallucination but they all hallucinate similarly. Okay, now I am crying.
I hope this has helped.
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Swim, what a GREAT post! Thank you for that. To hear from someone who is attached-yet detached from death if you know what I mean.
That validated a lot of what I feel and I'm sure every one will feel that way. Your friend was very diplomatic and covered all the bases.
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Thanks Barbe for your feedback!
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Swim, thanks for taking the time to share that powerful post. Wow. It wasn't too graphic at all and diplomatically phrased.
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Swim, just want I wanted to hear/read. It has affirmed my choice. The nursing home info was good too!
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It is good for you AND your HC proxy person to know your options, and be ok w/ switching gears as you/they decide. Pain control is big issue and can be planned for-again, the best laid plans....My BFF, Judy, died of Brain CA 11/05 after 9yr Dx/Tx & mostly happy living. She went in for surg. then to a closer hosp. Day I went to se her- thought I was in wrong room- no hair-bloated by prednisone, but she woke up "herself", 3w later went to hospice unit right close, was alert, 1 night all us girls got in bed w/ her and prayed/cried/held her. A few d. later coma-lasted 5days. I remember coming day 4, with all her family there and looking at her (in coma) & saying "Judy! What R U still doing here?" I talked to her, and told her it was ok, we were all ready.....then all these weird things started to happen with TV, radio- all her fav. groups were palying or being interviewed- every station! We knew it was no coincidence and told our recollections all night, including her in them, "Hey Judy, remember the day.." We all kissed her goodbye as we left- I said I'll see you in heaven. She passed by 6am.
My step mom (w/ lung CA- Dx'd 5 yrs after she quit smoking-shit) chose to hospice @ home. My Dad had a lot of nursing help and friends to spell him. She too, tarried for about a week in coma. But she also had been able to tell him it was time to put a foley catheter in bladder, no more getting out of bed. My sister was there w/ my Dad when she passed. Both of them being in comas for so long (no feeding tubes) felt very long, but they were not in pain, and ..............they're my only experiences personally. When you get closer, you can make more detailed plans, for now- keep an open mind and live like your hair's on fire xxxooo
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SwimAngel; Thank you so very much for the post. Can you please pass along my gratitude to your friend for the thoughtfully worded message. It's quite evident that she put a lot time and effort into it. Thankyou
Edited to add: When your friend mentioned the removal of the remains from the home. It made me think an issue I think others should consider, if they decide to pass away at home. When the funeral home tried to remove my Mom's remains from our home. They couldn't use a stretcher. Because of the angle of our front & back porch, the stretcher wouldn't fit threw the doors. In the end they still had to remove the hinges off the front door. It was long and dreadful experience.
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I am just hoping I can be at home as long as I am coherent. Then go to hospice in the last final day and pass. I agree this is a good topic and one we all think about. I just want to pass my home on to my sister with no ghost and figure usually, the last couple of days you are out of it anyways. At least I hope so.
Blessings to all,
Linda
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Swimangel -- thank-you for your post -- and please send my thanks to your friend -- it was very kind of her to share her thoughts.
I am so grateful for this thread. Months ago I think my sister was gently trying to make me think about how it will be like on my last days. She mentioned getting home care to help with the diapers when she was at work. Huh?!?! It never sunk in until this thread. I envisioned me being mobile and taking care of myself and then just dying in my sleep. I didn't even think about removing my body.
About 15 years ago I went to volunteer at a large hospital-like hospice. I was horrified -- people moaning, one woman crying out to be taken to the bathroom and being ignored, people slumped over in wheelchairs in the halls. And this was at a reputable place! I never went back, I was disgusted. I don't want that! If that's my fate, just put a pillow over my face and end it! I have found one place in my hometown, a small hospice where I hope it will be better. This is getting to be a hard decision...
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Thank you everyone - I will pass your words along to my friend.
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We are each so different---I keep trying to accept what is natural------guess I'm an outdated hippy?????It is not burdensome or difficult unless you believe it is!
Janis--only you can say what is right for your boys. My kids are teens, so I think I would encourage them to be there, but only if they want to be........
Death is a natural part of life! IF more of us got to experience it maybe there would be less mystery & fear about it..
HUGS-be well & stay strong
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Death IS very much a part of life. So is childbirth and open-heart surgery. Some things are best left for the young to watch on TV..
My kids right now range from 22-28 and I don't really want them to actually see me die! They know I will die... I rather they have better memories of me. I'll probably be the one that waits until everyone is out of the room and then take my last breath.
As a side note about "natural"; when I was breastfeeding my babies back in the '80's, people would say "Oh don't go to another room, you can do it right here!" Um, no. You didn't see my breasts before I had a baby, you're not seeing them now. "Oh, but it's natural." Yah, so is the conception and you weren't there either. "Oh, come on, don't be a prude". Hey if it's natural you're into, do you want to come over tomorrow morning and share in my morning shit?
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Dear Barbe; I agree. Your post has made my morning
lmao!!!!
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Um, gee, I'll give that a pass Barbe!! Hahahahaaa!!
I was thinking how I entered the world in a lot of "goo", I guess I shouldn't be surprised that I'll leave the world with a lot of "goo" too. Why does it have to be so messy?
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Elizabeth, it doesn't have to be messy. You had wondered about which would be an uglier death, lung or liver cancer. My mom died of liver, my dad of lung. With my mom, we were worried about her "bleeding out" but thank God that didn't happen. With my dad, it was just normal body functions.
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What does "bleeding out" mean? This may be weird, but blood doesn't bug me, poop does! But then, if I'm not eating or drinking much at the end there won't be much of that! Am I going to be spouting blood? Ewwww, but then, I guess I won't get stuck with cleaning it up! ;-)
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You guys are making me LOL----I don't think I'd want you around to help with some of the "gooey" clean-ups I've had to do over the years----think back 100 years & ppl weren't as "ishy" about such things................LOLOL
Yes--I have shared a morning shit whenever we have gone camping & there is more than a "one-holer" for the women folk---ain't a big thing------but maybe you don't poop anywhere but home?>? LOL
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Barb you really made me laugh! And Saint - you bring up excellent points - unfortunately for my family, even though I myself am not disturbed by cleaning up after sick human beings, my kids and husband are not like me at all. Also - there was no one more natural than my mom - she grew up in Ireland without indoor plumbing. SHe had to walk 1/2 mile to get water from a well (this is back in the 1930's).......she witnessed the birth of a cow.......but not one of a human (although she was in the next room in the 2-room thatched cottage). She raised 8 children and was very confident that she could take better care of my dad at home than the nurses were doing in the hospital (after his brain surgery - he was there for 5 days and no one ever bathed him because "he didn't say anything" - what an excuse! The man was rendered speechless from the surgery!) My mom signed him out of the hospital and took him home and cared for him for 9 long months. Even with help from family and close friends - and home visits from her family doctor and a visiting nurse, my dad's death at home took a HUGE toll on this extremely strong woman .......she was only 59 at that time - it took about 4 years for her to get over it - and to remember how he used to be. Of course, every family is different - but even if I think I'd be more comfortable and happier passing away at home, I couldn't bear to be such a burden on my kids or DH.
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Yikes! There's that word "burden" again! It's not the burden thing for me, it's the memory....I don't want my kids to see me zipped into a body bag.
Elizabeth, bleeding out means literally that. Every orifice you have bleeds. Eyes, ears, mouth, nose. And it is a LOT of blood!
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What is a foobie?
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Fake breast; surgically or prosthetically
(I didn't make the word up!)
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One thing that may be being missed here is that whatever decision you make is not irrevocable. If ending your days at home turns out to be too stressful for your caregivers, or if available comfort measures at home are insufficient, you can be transferred to inpatient hospice, or vice versa. Some hospice organizations provide care in both settings, so that it's easy to arrange transfers. Additionally, more home care can be obtained to give relief to family members. This, of course, depends on ones' health insurance, financial status, etc, but help IS out there. Hospice can also provide aides to do the hygiene care that can be so physically difficult for caregivers not used to doing it, or embarassing if the patient is say...your father. Just a thought.
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I asked my Onco to refer me to St Lukes hospice yesterday for when the time comes.
I am feeling very clinical about it all, perhaps because it might be premature - but then again, I don't want my husband to have to do it.
I've asked my boys and my husband where they want me to be, and I realize now, there are no rules. They want me to pass at home with them. They've told me it will be their privilege to take care of me at the end, and I know, its not that they will care for me as a nurse/doctor, but they want to be able give me their love. I know, this can be done at the hospice, but why not at home?
But, ultimately, I need to do what's best for them. I do believe Hospice can provide the best home advice. I just don't want them sending me a consultant to discuss this all with me, who's a wimp.
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When my grandmother was dying of stomach cancer, they got her visiting nurses, but each aunt, uncle and my dad took shifts and lived in as she was out-of-town. I remember my dad being absolutely horrified that he had to change his mother's sanitary napkins! She was 96 but bleed everywhere by that time.
That really coloured my perception of dying at home even though I was about 44 at the time. I refused to visit either grandmother in their final days once they were incoherent. I wanted my last memories of them to be animated and talking. I expect my kids and DH to be with me in my last days, but don't really want other family and friends sitting around on a death-watch.
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