This is somewhat related to the topic on CF deal breaker. My husband & I have different views on the last days alive. I understand his viewpoint, but it isnt necessarily my wishes. I tell him that I dont want to be on machines if the doctors truly feel there is no point. He says that the point might be a "cure" or an organ donor etc & if he lets me go & the following day an answer comes.....it would be too late. I try to explain that it could happen, but I also could be on machines indefintely. I dont want to "live" like that. Its easy to say now because I am not at that point. This year when he met with the doctor to get the "whole" story without my "view" in it......he was happy to report that I can live to 70 if I take care of myself. He was really excited & I just looked at him. I dont by any stretch of the imagination want to leave him or my daughter, but all I could think about was 40 more years of hospital, treatments, iv, meds, O2 etc. I didnt see that as a great thing. Thats when he said well what if something was discovered in that time. What if is a big what if......you know what I mean. I am just concerned about our differences. I am sure it will all work out & most likely my view will change when faced with that big decision, but in the meantime we stand on opposite sides. After all of this talking.....my ??? is to those couples who have addressed the issue. How do you both see things?
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Decisions about death between husband/wife
- Thread starter JazzysMom
- Start date
Hi, Melissa. Like you my boyfriend does not want to die in the hospital hooked to machines. Do I agree with this? Well, not really but then again if it was me I probably would not want that either. He knows it makes me really sad to think about this, but then I realised that just because he has CF does not necessarily mean it will be what will kill him. he was in a huge car accident last year and spend 2 days in ICU with the whole family wondering if he would make it (fortunately he did). The way I see it, this is something to deal with when we get there. I'm not saying that talking abotu it is a bad thing, I mean your husband has to be aware of your wishes if such a situation happens, however like you said you might eventuallly change your mind or your husband might eventually understand (to some extent) your point of view and not see it as an abandon of him and your daugther.
I don't really know what else to say so I hope things get better soon (regarding this at least).
Amélie
I don't really know what else to say so I hope things get better soon (regarding this at least).
Amélie
When my respiratory status went downhill, I sat down with my family and discussed what I wanted in the even of becoming so ill that I would not recover or wind up suffering. I am already vented, as I have already stated, I have neuromuscular issues as well, literally my respiratory muscles do not function well enough to sustain my own breathing...this was prior to the CF diagnosis. It took alot of soul searching to decide to do that, I am only 33 years old...but I am alert and doing relatively okay, with the exception of these cepacia infections. But, if the time came when a severe infection knocked me down into a coma with no hopes of recovering, or was causing me to remain in a vegetative state, my family understands that I would want the ventiliator removed and to allow me to die without suffering. I actually have a living will made up, describing in great detail what I would want if this were to ever happen to me...I have appointed my sister as my health proxy, she understands what I would want and she agrees that she would not want me to suffer. I think everyone should have advance directives made up...it is so important to voice what your desires are before something catastrophic should happen. My doctors know my wishes and also have a copy of my wishes as well, so there is no misunderstanding. Jazzy, I hope you two can come to an understanding...I know it must be hard for your husband to even think about losing you, that is why I didn't want my mom to be my health proxy. I think it would be just too hard for her to accept the fact that I would die in the event of a severe infection, and for her to let me go would be too hard for her I think...Don't get me wrong, it would be difficult for everyone to deal with this, but I felt my sister was most objective as she has seen suffering and families who would not let go (she works as a health professional). Many hugs to both of you, I know this is a a very difficult subject. Cepaciagal
I do want health care proxy, living will etc drawn up, but I dont want it done without my husband being in "agreement" so to speak. I also believe my Mom would think like me & as long as she is alive, I feel she would work against my husbands wishes if we remain on opposite views. I just worry that when the time comes (no matter how soon or how far away) that I dont end up in a Terry Shivo situatioin. I dont think it would ever come to that, but just like anything else......you cant say for sure until it happens. Thanks for some input from those who have been to the point of acting & not just discussing the topic
My husband passed away last year. His declined happened over a 2 year span, so within that time we talked about what we would do quite a bit. My husband firmly stated he did not want to be put on life support if it meant never coming off. If there was a chance he could come off, then he would consider it. Since we were both on the same page, we both felt comfortable with me making the best decision at the time. When the time came, the doctors in the ER asked me if he should be put on life support. I was able to talk to my husband about what was going on and we asked for a blood gas before we made any decisions ( he was using a bipap while we waited). When the results came back, we knew he would never breathe on his own. It was the hardest decision of my life, but in my heart I knew it was the right one for him. He agreed he did not want to prolong what was going to happen. When I was first asked the question, my instinct was- Yes ! hook him up to everything. Now that I look back, I know we made the right choice.
I guess my suggestion to you is to keep talking to you husband as time goes on. So many new drugs and treatments coming out, its hard to say the choice you make now is the same choice you would choose years from now.
I guess my suggestion to you is to keep talking to you husband as time goes on. So many new drugs and treatments coming out, its hard to say the choice you make now is the same choice you would choose years from now.
My husband has CF. We have talked about this many times. He does not want to live on machines either, and even though my first instinct may be to do whatever possible to keep him "with me", I would follow his wishes. We are in the process of having a will and living will etc drawn up also.
Nancy
Nancy
I am in the same boat as nancy. Mark does not wish to be on any sort of life support and is pretty much dead set against a transplant also. As much as it breaks my heart, and as many times as we have discussed it and I resist the urge to ask him, "well, what about me-don't you love/care about me enough" I have to respect his wishes.
I can only put myself in the situation and imagine what my wishes would be. If I were to be a vegetable, then for goodness sake, don't even bother with the life support. If it were part of a healing process though-say post operative for a bad car crash but I was expected to pull through and with some hard work-recover, then I would want it. The difficult part comes in deciphering and trying to predict the outcome-something nobody on this earth has the capability to do. It's very difficult, but in light of the Terry S. incident; Mark and I have both created a General Power of Attorney, a Medical Power of attorney, a Will and Mark has enacted a DNR with some stipulations (this can pose a problem if he is taken to a hospital that isn't familiar with the stipulations contained within the DNR and/or if I am not present.
It's difficult, and coming from a non CFer who loves a CFer, sometimes I "feel sorry for myself" because i feel like it's me. I feel that I'm not giving Mark a good enough reason to stick around, that he doesn't love me enough to have a transplant or to be on limited life support if a full recovery is expected. Of course, in reality I know that isn't the case but sometimes I can't help but feel that way when I think about it. Maybe your husband feels a bit that way and that's why it's hard for him.
Ultimately, I will do whatever my husband wishes-but it certainly won't be easy
I can only put myself in the situation and imagine what my wishes would be. If I were to be a vegetable, then for goodness sake, don't even bother with the life support. If it were part of a healing process though-say post operative for a bad car crash but I was expected to pull through and with some hard work-recover, then I would want it. The difficult part comes in deciphering and trying to predict the outcome-something nobody on this earth has the capability to do. It's very difficult, but in light of the Terry S. incident; Mark and I have both created a General Power of Attorney, a Medical Power of attorney, a Will and Mark has enacted a DNR with some stipulations (this can pose a problem if he is taken to a hospital that isn't familiar with the stipulations contained within the DNR and/or if I am not present.
It's difficult, and coming from a non CFer who loves a CFer, sometimes I "feel sorry for myself" because i feel like it's me. I feel that I'm not giving Mark a good enough reason to stick around, that he doesn't love me enough to have a transplant or to be on limited life support if a full recovery is expected. Of course, in reality I know that isn't the case but sometimes I can't help but feel that way when I think about it. Maybe your husband feels a bit that way and that's why it's hard for him.
Ultimately, I will do whatever my husband wishes-but it certainly won't be easy