Do I need to die well?

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  • konakat
    konakat Member Posts: 6,085
    edited September 2009

    Ewwww, bleeding out doesn't sound like much fun.  Another checkmark on the going into hospice side of my decision making.

    One thing I would like, if I'm in a coma or in horrible shape that I can just take a bunch of painkillers and be done with it.  Why can I give this dignity to my kitty cats when they're in their last days and not to myself?  I have to look into that when I return to Canada.  I know I can have a do not resucitate, but I might just want to go before then.

    I don't mind the death-watch, I'll like the company.  Misery loves company, eh?  I tease my sister that if she's bitchy to me and doesn't spoil me properly I'll make it a long, lingering death just to get back at her!

    But when it goes on and on...just end it please!  I remember when my father was taken off his respirator, my poor Mom blurted out (after a few minutes) why's it taking so long?  She doesn't remember saying this.  But she's such an impatient one, and it was only about 20 minutes until he died. I don't like this lingering, poop and blood mess.  Yuck.  And I don't like that being a memory for Mom.

  • saint
    saint Member Posts: 1,877
    edited September 2009

    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 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

        We made the decision to "unplug" my mother after they pronounced her to be braindead because some how the ventilator tube came off where it was connected and she was without oxygen too long before they got her hooked back up.  That was a horrible deal and the only reason she was on that machine was that they told us it would be temporary just until they got her heart settled down and they got the pneumonia under control.....the latter never happened since they didn't discover it was pneumocystic until many other things had gone wrong.  Now I suppose they would look for that early on if someone has a compromised immune system.  She had a DNR order and no life support, BUT it was she who said she wanted the "breathing machine" since it was supposed to be temporary and up until the day before she went to the hospital she had been doing very well....we were shopping two days before because she and my father were going to San Francisco for their wedding anniversary. The temporary lasted 5 weeks.  Anyway, to make  a long story short, both my father and I were there when she died and I was holding her hand and talking to her the entire time, telling her we were there and not to be scared because it was going to be alright and she wasn't on that awful maching any longer and that I loved her and would always be with her.  I have tears running down my face now and it's been 13 years. I feel so guilty that she was on a respirator even though she said she wanted one....we never could really communicate after that because they kept her so doped up so she wouldn't try to pull the tube out.....for sure i NEVER want one of those.   It was not easy watching my mother die, but it was actually sort of peaceful, just like she went to sleep and I am so very glad that I was there with her and I know she knew we were there.  As for me, I am not sure what I want, just know I don't want a lot of pain.  I always thought as you wrote Konacat about taking the painkillers.....God knows I have enough of them stockpiled in the hall closet, BUT then I thought what if you don't take enough and end up a vegetable...you certainly would no longr care, but  then your poor family or whomever has to see you like that.I loved my mother so much, but if she had died at my house which she probably would have had we not rushed her to the hospital, I think I would have  had to sell the house. She got her treatments here so would usually spend weeks at a time with me, sometimes going home for the weekends or sometimes my father would come here.

         As Saint said we most likely won't have control over what happens.  By the way, good to see you posting Saint.  How are you doing? 

  • LisaSDCA
    LisaSDCA Member Posts: 2,230
    edited September 2009

    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.

    Cool 

    Lisa

  • GrinAndBearIt
    GrinAndBearIt Member Posts: 33
    edited September 2009

    Dear Pookie,

    I don't think you need to make a decision now. Nor does your family. You can have a general plan of what you would like to do and make people aware of that...then decide as the time draws closer.  You will know what is the right way to do, as you go. Sometimes what we think we will feel in the future is not always what we wind up feeling.

    My father died in the hospital, my mother died at home. Those are not the things I think about. I think about them when they were alive, and all the beautiful memories they gave me. 

    I wish you well in your journey. 

  • dreamwriter
    dreamwriter Member Posts: 3,255
    edited September 2009

    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.....  

  • EWB
    EWB Member Posts: 2,927
    edited September 2009

    dying is a part of life, not good, not bad, it just is.... What happens is not really in our control and where it happens depends on so many things --- some or most of which are not known to us "now" but will happen "then". I think some one mentioned earlier that decisions/plans made now can be changed depending on what happens at that time.

    I am leery of judging families and friends, every one reacts differently, has had different experiences, there is a history I may not know about. We all do the best we can with what we have at the time -- I know not everyone is good w/ body fluids, being w/ sick or dying people, needles, visiting daily whatever. Each will have a gift to offer when the time comes

  • luvtotravel
    luvtotravel Member Posts: 933
    edited September 2009

    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.

  • OneBadBoob
    OneBadBoob Member Posts: 1,386
    edited September 2009

    I think "dying well" is so different for each person and each family.

    No judgments being passed on anyone.

    The only thing I feel strongly about is that each of us get our wish to pass on into the next world the way we want to.

    And to have some control over our last wishes.

    p.s.  I have a dear friend in her 80''s, healthy as a horse, and she has her bag packed and her nursing home chosen when she can no longer take care of herself.  It is just so different for each and evey person and family.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited September 2009

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

  • pookie61
    pookie61 Member Posts: 257
    edited September 2009

    It is partly an issue of control, but not totally.  Sometimes I will face situations with this disease where I realize how out there I am, in terms of not knowing what to do.  I know you can never be prepared for everything.  But I also know that neither my friends nor my family are capable of even discussing these issues unless I take the helm.  If I don't inititate these chats, then noone will.

     Now that we have told our kids my husband seems content with our level of dialogue.  But we have much left to discuss.  Because if WE don't talk about, and then I don't talk about it with my family, friends, and with his family, then there could be a lot of hurt feelings and family problems.  My hope is that by having an honest talk about this with the key people involved, my kids will have the benefit of a family that is not destroyed by my death but instead rallies around and is there for all involved.

  • Fidelia
    Fidelia Member Posts: 397
    edited September 2009

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

  • Fidelia
    Fidelia Member Posts: 397
    edited September 2009

    Isabella - thanks for the courage to be angry - I am so often angry at the terrible, ungenerous and self-serving actions of those very people I was taught to trust and love - my mother and brother have recently been absolutely awful - even though I am stage IV and not going so well - and somehow I am not allowed to be angry at their actions and the hypocrisy with which they mask their nautures - I am not sure why anger is regarded so negatively - sometimes I get so angry I feel I will live forever just to spite the bad people and so i can continue to look after and love the good people :)

  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    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

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2009

    Most of this thread was going while I was caring for my dying mother (brain cancer) so I wasn't coming to the boards much.  I will say now that caring for her was one of the most difficult and awful things I've done in my life but easily one of the most profound and meaningful.  I am so glad that I had that experience.  My siblings couldn't handle it, so it was me, and i will always feel like they missed out on a great gift that I had.  There were some amazing moments.  Like many mothers and daughters we had a complicated relationship but we achieved a closeness and expressed love for each other we never had before.  I also watched as peopple came to say goodbye to her and I learned so much about what she meant to others.  I still cry when I think about how the woman who has cleaned her apartment for 20 years showed up the day before she died because I forgot to tell her not to come and when I told her my mother was dying she asked to see her.  My mother was in a coma and this woman stroked her very gently and told her how much she meant to her, how much she loved her.  I learned so much about my mother just by being there for that moment.  

     The purpose of home hospice is to take care of the patient's needs so that all the family has to do is visit.  They really took the burden off and I am grateful for their care.  I never did anything unpleasant.  I knew that for my mother's sense of dignity she would never have wanted that and that providing comfort for her meant making it clear that she was not a burden.  Hospice made that happen.

    I guess I would urge anyone considering this decision to speak with hospice.  I guess I agree with your social worker.  I felt that caring for my mother when she was dying was so valuable because it was an act she could never repay, it was entirely selfless.  Not only did she receive what she needed, but I handled her death far better than I think I would have otherwise because I was able to do this for her and I feel good that I did it.  I miss her, but I feel real satisfaction for the way I took care of her.  And I'll always have that.

      

  • desdemona222b
    desdemona222b Member Posts: 776
    edited December 2009

    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.

  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2009
    I've said it before, and I'll say it again...I watched both my parents die in palliative/hospice. Thank God for the nurses to wipe my Dad's bum and wash my Mom down when the catheter slipped. They also cleared their throats with a machine when they were choking on their own phlegm. I don't want my kids to have to do that to me. I don't want my kids to have to see me dead in my home. I know it's a normal part of living, but so is sex and I didn't have them there to witness that either! (hope you take that as the light joking to ease a tense situation that I meant it to be....Innocent)
  • ElaineD
    ElaineD Member Posts: 2,265
    edited December 2009

    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.

  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited December 2009

    The thoughts on this thread are extremely helpful.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited December 2009

    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. 

  • ElaineD
    ElaineD Member Posts: 2,265
    edited December 2009

    The systems here (in the U.K.) are different, so I can't compare directly. But surely with care at home, theer isn't someone in the house 24/7? I know from the times that both my f.i.l and uncle were in hospice (again in U.K.), their physical needs (what I really mean is incontinence), took a huge amount of time.It was not unusual for them to need changed every few hours-or even more often. So if at home, family members would by the nature of things, still have a fair amount to deal with-unless there was literally someone in the home 24/7. I would still also prefer to have the security of having docs and consultants to hand to adjust any pain relief, and deal with emergencies. I'm sure we all hope to have a painfree and peaceful passing-but I wonder how often it actually happens....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    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. 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited December 2009

    My mother's caregivers were 24/7.  If we didn't have that, I would not have had her at home.  My mother's doctor said to me, "You have children of your own to care for.  Your job is to visit your mother, not to take care of her."  Of course, there was still a lot to do, I was the one making the calls to hospice when I though she needed something, for example.  But mostly I sat by her bed and held her hand.

     We were very lucky to have some lovely, lovely caregivers.  I remember once when a doctor was giving me yet more bad news, my mother's caregiver quietly went behind me, put her hand on my back and whispered "be strong."  The same woman, when she left my mother for the last time (another caregiver was there when she died) said to her, "you have done all you needed to do in this world.  You can go home now."  It was beautiful. 

  • mdoney73
    mdoney73 Member Posts: 2
    edited January 2010

    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 +

  • imbell
    imbell Member Posts: 659
    edited July 2010

    30 years ago my father died in the hospital in a room with 3 strangers. He had stayed home in pain from lung cancer till the day before he died. Things improved. My mother was in hospice for a month. She was 91. I stayed for the month only going home for a shower and somebody else stayed at that time. We had a few days where she was quite wonderful. We are a small family but everyone came that day and she talked and talked. Told stories I had never heard before. Basically she didn't eat the whole time (blocked bowel) and she went into a coma the last four days. I would have liked to spare her those last four days. Too bad we just can't ask for something so we could spare our loved ones those last four days.

  • faithfulc
    faithfulc Member Posts: 284
    edited August 2010

    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.

  • Enjoyful
    Enjoyful Member Posts: 3,591
    edited August 2010

    I agree, faithful.  I'm hoping to get into a hospice center where trained hospice nurses and doctors can take care of my needs, and my family can visit me without dealing with the medications, messes, and responsibilities.  I've discussed it with my daughter and sister in detail and they agree.  It's a personal decision for everyone, of course.  My uncle chose to have hospice care at home and it worked well for him.

    Is it difficult to get into a hospice facility, I wonder?  I imagine home care would be a lot less expensive?

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