Do I need to die well?

It has already been stated here, but I have to say it again----WE may not have control over what happens or where AND in spite of our best intentions, we may not know what is best for our family members...we live in such a control oriented culture!!!!!!

Be well & stay strong 

I want to go out like Elizabeth, when and where I choose and probably prematurely, courtesy of a modest stash of pharmaceuticals and a chemist friend (for you UK people: he really is a chemist, PhD in Chemistry, not a PharmD).

 BUT, I agree with Saint that we may not have that choice. We may get smushed by the next Mack truck that takes an exit too fast (saw this last week on the way back from LA - euwww) or I may not survive the splitting of my skull for a THIRD time, or we may die quietly in our sleep from an Avastin-induced aneurysm.

This, though, is hardly a futile discussion. We have confronted the realities of various bodily fluids, we have reconsidered a home vs hospice death, we have even had differences about what memories we might leave in the room in which we depart. I think that's entirely appropriate for metsters. Stage IV gives us the opportunity to plan ahead, even with reluctance on the part of adult children, partners ... or ourselves. When we have 'shuffled off this mortal coil' I'll bet we all think we died well, in retrospect.

Lisa

Dying well.... to me that means not being a burden and a baby.  I want to be gracious and simply slip away.  I want - no diapers, no mess.   And mostly, I dont want to be alone.  And I dont want it to drag out so people get fed up.

Fortunately, I have an army of friends that will ensure that I am not alone.

I do not want my "life celebration" to cost too much as it is from the measly little life insurance policy through work.  I want food and letters.... and my angels (I have an angel collection) to go to their new homes.....  

I think this thread is sad and not just because of the topic.  Over and over I read how dying at home breaks up families over "who did more".  As a wise man once said, "build a bridge and get over it".  Harsh words perhaps but the person dying would not want to see their dying process break up their families.  We all do what we can both emotionally and physically and it is a choice.  Life if too short to be bitter.  I will step down from my soapbox now.

I do like that "build a bridge and get over it"! Thank you. That's so apt in so many ways.

Hi Pookie - not a rant - a fair call - you live for your family - I am not sure one should have to die for them

I'd love to die when my time comes as my friend Carol did. She'd been battling bone/brain mets for years and went through a lot the year before she died.   The decision she took was to die at home.

Her husband said she took a chemo pill about 1.30pm, walked to the back of the house to have smoke (she never did manage to give up) came back in, lay down and decided to take a nap and never woke up.

It was so peaceful, she was forty with two young children and was so prepared and at peace.

She had letter's written to be read out at her service for her children, and another thanking her onc, medical personel and all her family.  She was so brave and dignified and handled all of this in a way I hope I can when the time comes.

In saying that though, my own preference is for hospice, as I agree with earlier comments that I'd hate a death watch around me and prefer to spare my family the chance of unpleasant tasks in caring for me.

Tricia x

If I may just offer this up as food for thought - my mother died in the palliative care area at the hospital in March.  She was in incredibly bad shape and the family nursing her at home would have been no pleasure, believe me.  She had to be turned every couple of hours, she was catheterized and on a morphine, etc.  We stayed in the hospital most of the day her last few days and did things like use the mouth moisturizer and chap stick on her, etc (she was unable to swallow).  We were happy to help her be more comfortable, but the more physical aspect of it would have been a really tough row to hoe.  They were talking about sending her home for hospice at first but decided against it, and I was frankly very relieved because I felt that was much easier on everyone, including Mom.

I don't understand where this counselor is coming from talking about what a joy it is to take care of someone on their death bed.  Maybe it's just me, but there was NO joy whatsoever in seeing her on her deathbed, let alone in nursing her.  She was dying for goodness sake - I've never seen anyone in that condition before and I hope I never do again.  The memory of her gasping for breath and moaning in her morphine-induced stupor is a very traumatic one.  It burns in my memory - it's the worst thing I've ever been through.

I completely agree, Barbe and Desdemona. We spend our lives protecting and caring for our children. In other circumstances, we would welcome their help and support, and be grateful to have it. But surely that last stage is just too awful to contemplate. I hope to be in hospice at the end-and hope they will spend as long with me as they choose. But I certainly don't want them to have the agonisies of caring for me-nor do I want to die at home-either in our bed, or move into one of the spare rooms.The last act of love I can give my hubby and kids is to make my passing as stress free as possible-and I really don't think we can do that without professional help. Perhaps deep in my heart, I admit that I would like to be at home-but surely by the end stage I will be so unaware of what is happening, that it wouldn't be worth risking their trauma for my few moments of lucidity.If I'm still awake, coherent, and functioning up to a point, then I won't be ready for hospice.

I should add that we had caregivers taking care of my mother's physical needs. I agree that this isn't something family members should do.  One of the things hospice can do is arrange for such caregivers.  I haven't yet found out how much medicare will cover, so I can't speak to the cost.  But medicare did cover a very large amount of my mother's care.  Insurance companies end up spending far less if someone is cared for at home rather than the hospital, so they may cover a lot of this as well.

My mother went through all the phases desdemonda mentions (plus some neuro stuff because it was her brain).   That was tough.  But when she was able to communicate she said that she was comfortable and not in pain.  I believe she looked worse than she felt because of the good care she received from hospice for all of her symptoms.

This is a tough call and I'm not sure what I would choose for myself.  I do think you should speak with both home hospice and inpatient hospice well before you need it so you can get a feel for both options.  The home hospice we used also had an in-house facility, so in our case we could have made changes mid-stream. 

There is no right or wrong answer for this, it's an individual choice.  As for me, I don't want to go to a hospice facility.  Everyone knows what hospice means and when you go there it is to die. We don't get a choice as to how we die, but I think if I get a choice as to where I die, I would want to be at home.  My mother died in the hospital after we took her off life support and I was there talking to her holding her hand until she finally passed.....I still remember every detail,every gasp,  but I am sooo glad I was there with her as she always was with me when I needed her.  My mother would have preferred to have been at home in her own bed, but we were unable to get her there.....before they put her on a ventilator and she could talk she said I just want to go home and I do not think she was referring to Heaven.  I don't have children so they won't have to watch me die and I suppose I would have to have a nurse or someone from home  hospice even  to come care for me if I was in really really bad shape at the end (my husband is useless when it comes to needles, puke, or even looking at my loose fingernails)  I have visited people in hospice and know that they try to make the rooms seem homey, but they are not home and that is not where I myself want to die.  Perhaps this is selfish on my part.  I had a friend who died of cancer about a year ago....she had one thing after another go wrong for her.  Every treatment that worked for me, did not work for her and she was breaking bones at the end and had that procedure done where they put cement in your spine.  She was in the hospital and took a turn for the worse and they sent her to hospice. She was in and out of reality, they had her so doped up. On one o fthe rational days she woke up, looked around and asked Where am I?  THis isn't the hospital."  Someone said to her, You're at hospice, Sandy. and she got this look of horror on her face and screamed Hospice!!  Oh no, not hospice!  I know they do a humanatarian service and try to make it easier for both the patient and the family, but my opinion of it, is the same as my friends was.  If a family member wants to care for you, I think they should be allowed to do it.  It's a  horrible thing to say, but after watching my mother suffer, and when we knew for certain she was never going to get better, it was actually a relief when she died because we knew she was not in pain or suffering.  It was easier to accept her dying by being there with her.  Everyone feels differently about this and it is an individual choice.  Me, I am selfish and I want to die at home and by that stage of the game I won't care who is taking care of me, but I will at least be in my own bed. 

Michelle in KY

I believe that you should discuss the option of dying at home with your family. A few years ago we were given the option to bring my mother-in-law home to die or keep her at the hospital in a hospice room. She was not able to make the decision because she was already sedated to badly. It was a huge decision for us. Up to that point I thought we had discussed everything that she wanted. We decided to keep her at the hospital because she was deteriorating rapidly. To this day I wonder if we made the right choice. If somehow we let her down? Since I've been diagnosed w/Breast Cancer, I've decided to let my family know what I want in great detail. This may save them the worry if they made the right decision for me when I cannot.

Dianosed: 11/20/09 IDC Estr + Prog + Heur2 - Stage IIIA Tumor 2.5 cm 5nodes +

My grandmother had been sick for months and was in bed at home until the last few days, when she was sent to the hospital in an ambulance.  I was 18 then.  The mental and physical drain on my parents was huge (my grandma lived with us). 

If you watch the show "House, MD", you may remember that he once said "we live with dignity, we can't die with it."  I know some may disagree, but in the end death is not a pretty thing, especially with a rather chronic disease that has a long road leading up to it.

Yes, it's a personal choice.  I think that when the time comes I'll choose the hospital.  My loved ones can be there for me when they can, and can leave to take a break from it all and still know that I'll be in capable medical hands.  I totally agree that it is not where, but who I will be wih that counts.