Do I need to die well?

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 

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?

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.

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, just want I wanted to hear/read. It has affirmed my choice. The nursing home info was good too!

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. 

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...

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 

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.

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 

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!

Fake breast; surgically or prosthetically

(I didn't make the word up!)

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.