Very Difficult Decision...Any Insight?

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  • _VoV
    _VoV Posts: 1,494 Member
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    I am so sorry for your circumstances. Your profile pic says it all--you obviously love your mom!

    I would ask for all your mom's health providers for their thoughts on her prognosis, and the various possible scenarios should you decide one way or another. Personally, if there is little hope for survival beyond days or a few weeks, I would make her comfortable and support her through the time she has left. I base this on seeing my mother fight cancer and wither. I don't know what the road not taken would have been, but I suspect she might have had more good days when we could have quietly enjoyed each other's company. Again, I will never know if that's true. I just know the chemo made her sick, and made a co-existing heart condition worse.

    Everyone who offers you advice (including health professionals) will have different life experiences which make them say what they do. A spiritual belief, or lack thereof, will also influence them. Ultimately, the decision will be yours, but I hope you can get honest information to make the decision easier.

    My heart goes out to you. Wishing you and your mom peace at this most difficult of times.
  • Elizabeth_C34
    Elizabeth_C34 Posts: 6,376 Member
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    I have a very difficult decision to make. For the past 9 months, my mother, who is my best friend, has been battling a very rare form of Cancer that only 1-3 people worldwide are diagnosed with each year. It's reached a point where she has lost about 80% of her brain functionality, and is essentially on life support.

    I was contacted by her attorney this morning, and she had apparently named me the one to be in charge of making decisions if it ever reached a point where she no longer could...which is now. Her doctors want to start treatment, ease her pain, and basically give up. When she was diagnosed, we were told she would have a month, tops. That was nine months ago. She made more strides than anyone thought possible, but now nothing seems to help.

    I'm a wreck. Never in my wildest dreams did I ever see myself in a position like this. I don't want my mom to die. I have seen how hard she has fought, and how strong she has been, and the selfish side of me wants to keep fighting. But then I look at her, connected to all these tubes, unable to keep her eyes open, unaware of who I even am, and all I want is for her to not be in pain anymore.

    My question is, has anyone else ever been in a position like this? I know this is a strange place to be asking, but I know that there are people on this site who are all in different places in their lives, and who have been through many different things. If you were ever in a position like this...what did you do? How did you make the decision? How did you feel after making a decision like this? Any insight would be much appreciated. I'm sitting by her bed right now...they want a decision in the next 24 hours and I just don't know where else to turn...

    Let me first say that you are so strong and brave.

    We went through this with my grandmother who was diagnosed with small cell lung cancer in December of 2010. She passed March 31, 2011. At the time she was diagnosed, she was of sound mind and judgement, legally speaking, though distraught (obviously). By February, she was incoherent. The tumors had spread all over her body and into her brain. We decided to continue to support her as much as possible and provide pallative care to ease her pain as much as possible instead of pushing for radiation or chemo to just prolong her life.

    You are in a position that is incredibly difficult, however, a decision must be made and soon. I think you need to sit down with your remaining family who is close to your mother and discuss your options. If she is terminal, which is sounds like she is, your job now is to honor her wishes about this situation. Would she want to live this way? Would she want to have pallative care and no more? These are not easy questions to answer, and you need as much support from your family as you can get right now. I had to make a lot of the decisions for my grandmother because no one else in the family cared too much about it. It was horrible, but I don't regret giving her as much comfort as I could before she passed. Obviously, your situation is different, so the decision you make may be different.

    You will be in my thoughts. You are a brave and strong person. Your mom had a lot of faith in you by putting this decision in your control. She's trusted you with her wellbeing and her life, and that is something incredible right there. That says just how much she loves and trusts you to do the right thing. I know you'll make the best decision for her if you follow your heart and her wishes. Always remember that though life ends for us all, it's the joy we share with each other while we are here that matters the most. Hold onto that and cherish your memories of her throughout this process.

    Cancer is an evil disease that takes so much from so many. *hugs*
  • threasarenee
    threasarenee Posts: 78 Member
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    I am so very sorry for your family and will keep y'all in my prayers. I dread the day that my Mom leaves my sisters and me and I tell her all the time that I hope I go before her because I dont think I can go on without her. But I know that that isnt what she wants. I know there will come a day when I might have to make this decision and I am so glad that I have my sisters for us to support each other. It sounds like you have your brother and grandmother there to help you. My mother has a living will that states that she DOES NOT want to be on life support and I too have made that request for myself. To be in pain and not really living is no way to live. If there is NO hope then why continue the pain, but it also sounds as if she wants to fight as long as possible by what you said. I can only pray that you make the right choice for your family. My grandmother was recently in the hospital and after days of testing, they told her that they cant do anything but she can try somewhere else or she can go home and live out the rest of her time as comfortable as possible whether her heart valve goes out in days or monthes. She chose to go home and be with loved ones. I think that giving her the chance to be at peace is what I myself would chose. Just do what is in your heart and may God be with you!
  • ktfitzgerald
    ktfitzgerald Posts: 369 Member
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    You and your family are in my prayers. I have faith (as your mother does) that you will make the right choice.
  • MikeSEA
    MikeSEA Posts: 1,074 Member
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    We have had conversations...she told me she wanted to fight until she couldn't anymore...but now I don't even know if I understand what that means. Her living will basically states that the decision would be mine if there came a time when she was incapable of making decisions on her own. I'm just at a loss...my brother wants to keep her alive, regardless of how much pain she's in. My grandmother doesn't want her in pain anymore...I just don't know what to do.

    Yeah that would be hard to wrap my mind around. I think I would probably ask myself, "At this point, is the fighting done?" It kind of sounds like it might be But that's just one side of things.
  • shedoos
    shedoos Posts: 446 Member
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    I am so sorry -

    If she chose you to make the decisions for her -not your brother or your grandmother - it was because she had faith that you would know what was best.

    Follow your heart and you will have done what she wanted.
  • IndigoVA
    IndigoVA Posts: 164 Member
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    I'm so very sorry that you're going through this. Yes, I have been in a similar situation with my grandmother (who raised me from age 2 to my teenage years). I won't say my situation was the same though because my grandmother was 99 years old when I had to make my decision, and she had clearly told me that she wanted to end it back when she was still lucid enough to make those decisions. Towards the end she was basically comatose and the final decision fell on me. Even though she was 99, and I knew there was no way she could get better, it was still the most difficult decision I've ever had to make. I was initially haunted by feelings that I had killed my grandmother. And I'm sorry for putting it so bluntly, but these are the types of feelings that come afterward. And of course, it's not true. I didn't end my grandmother's life. Her age and her medical problems ended her life. I simply tried to help her go in the most humane, least painful way possible.

    In the end, no one can tell you the right thing to do, and the decision will be difficult which ever direction you decide to go. But I'm sure no one knows your mother better than you, and the best thing to do would be to think of what she would have wanted.
  • nerdyandilikeit
    nerdyandilikeit Posts: 2,185 Member
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    I'm so sorry you're having to go through this. I just went through this in November and it's still very raw, but I'd like to offer my opinion. My dad was diagnosed a bit over 2 years ago with stage 4 lung cancer. He fought so hard and after several months, we thought we beat it! There was no sign of the tumors or anything. He was getting better and better all the way up til about March last year. He seemed to just not be getting better or worse until July, then started to declie again very quickly. It was confirmed his cancer was back in October and he was given 5 or 6 months. We were hoping he would fight and hold out for my sister's wedding this July, but he was tired and there was no more money for treatments. I saw him late October, and then suddenly almost 2 weeks later my sister called me because he was in the hospital and it was a few days at most til the end. My brother, sister and I sat with him for 2 days. Several hours of the second day were spent with just me and dad, him being very confused and uncomfortable. So much so that he knew my name but didn't realize I was the face that went with it. His last words to me were a screamed plead to go home and I had to hold him in bed until a nurse could come and give him more medicine. I would have much rather had him go quickly so I didn't have to sit and wait for it to happen, and have him be so confused and miserable.

    My dad always made it clear that he didn't want us to fuss with machines or anything ro keep him alive, but I know now after watching him go through that, that if it was up to me I would do whatever it takes to make it as painless as possible for him. The hospice nurses tried to keep him as physically comfortable as possible, but he was clearly not himself. It was painful enough to watch without him actually being in pain.

    This is such a hard thing, but I hope you can make the hard choice to make it easier on your mom if she's past the point of help. And your family will be there for you and each other to make it through the aftermath. <3
  • killagb
    killagb Posts: 3,280 Member
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    That's a terrible decision to be faced with, I might suggest contacting the hospital as well to see if they have any counseling type services/people that could help you through this. Just remember, there's really no 'right' decision, just what makes sense the most, to you. I wish you strength to make this very hard decision. :flowerforyou:
  • _SusieQ_
    _SusieQ_ Posts: 2,964 Member
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    I honestly have nothing to add as far as advice, but wanted you to know how sorry am I you have to go through this.
  • nolachick
    nolachick Posts: 3,278 Member
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    OH MY goodness. this is just awful. I would be a wreck too. i have never been in this situation nor would i wish this on anyone else. i can't give any advice but j ust hoping for the best for you and your family.
  • gayatrik
    gayatrik Posts: 173
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    I am so sorry :cry:

    May God give you strength to go thru this !!
  • LansingPugh
    LansingPugh Posts: 4 Member
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    Yes, I've been in this position. When I read your whole email, I think you meant to say the doctors want to stop, not start treatment. They want your permission to move from treating the cancer to maximizing your mom's comfort. You should meet with the oncologist face to face and have them explain this in detail to your satisfaction. If you do make that decision, you'll be improving the quality of her remaining days immensely. We were lucky enough to be able to move my brother from the hospital to a wonderful hospice where we got to spend about a week with him before he passed. I am SO glad we did this. Family and friends came by to be with him, sing for him, read to him and more. We'll never know just how much he was aware of what was going on, but all indications were that he appreciated the comfort and the company. I even got to play a recording of a very touching poem our sister on the other side of the planet read to him.
  • njean888
    njean888 Posts: 399 Member
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    Sorry you are going through this. I just went through it in April 2011. However my father had extensive talks with me and my brothers regarding what he wanted and what he didn't want and in his case he did not want to living on machines. Ultimately my oldest brother was power of attorney and made the call but we all agreed on it. It was rough, it still is but we can have peace in our decision because we knew it was what he wanted.
  • vjrose
    vjrose Posts: 809 Member
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    I've been there twice, the first time my father in law passed quite suddenly when we were very near that decision. My mom however was out if it for most of the last few weeks of her life, we were all there for her birthday when we turned the O2 off which was the only thing keeping her wasted body going and it was only a moment or two before she was at rest. Toughest decision ever but she has said many times that when the cancer was to the no turning back point and her mind was not her own anymore she didn't want to stay. So we gave her the peace she craved.

    I will be praying for you and your family at this amazingly difficult time.
  • Jenthin
    Jenthin Posts: 65 Member
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    Sweetheart....I am so very sorry for you all. You are in my Prayers. ♥ I can only imagine how you and your family must be feeling right now :( I have been a Hospice Nurse for nearly 5 years now and have had the HONOR of holding many hands as they left this world. For me, it is a privilege to share such a tender difficult time with a family and their loved one. Sweetie, one very important thing to remember is that your relationship with you mom is yours and yours alone. No one....not even family can full understand or know what your going through except God above ♥ Your bother and grandmother have to find their own peace as well...you can not do that for them. All you can do is try to communicate with each other in an as open and honest and tenderly respectful way as possible, durning this highly emotional time in your lives...keeping in mind that each of you are suffering your own way. Your special relationship with you precious mom is individual and unique for just the to two of you;) Search your heart dear....you know her, you know her heart and how she often thought and felt about many things....so ask yourself the hard questions:( You may already know the answer in your own heart now ♥ I am also really feeling for your brother as well....seems he may have some unfinished business with his mom and is in alot of pain also. Is she responsive at all sweetie? Only you know that answers to the questions honey, and based on what you have expressed of your own special uniquely made relationships with your dear mother...your love for her will be in whatever choice you make ♥
    [{(((Big Hug)))}]
    I praying for peace....God Bless ♥ ♥ ♥
  • Amber82479
    Amber82479 Posts: 629 Member
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    I am so very sorry for what you're going through. My suggestion would be to ask yourself this question; If your Mom could sit beside you and tell you what she wanted for herself in this situation, what do you think she would say? Whatever it is that you believe that she would want, that is what I believe you should do. Praying for you and your family and sending you a huge hug <3
  • gnrshelton
    gnrshelton Posts: 358 Member
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    I have been in a similar situation. My mom had lung cancer. My father was dragging her to chemo treatments( he couldn't let go either) when she was lack for a better work out of her mind. She didn't know who anyone was and she couldn't function anymore. I called the doctor and said she couldn't be dragged for therapy (she could not walk) and asked if it was helping at all? He told me to tell my father to quit and pretty much hung up. I had to tell my dad to call hospice and let the chemo go. It was the worst thing I had to do. We called in hospice and she died a week later. I hated doing it but I still think it was the best to let her go. I think they need their dignity and peace. This was my opinion only. It was very hard and took me a while to get over but I still think it was the right thing to do. I think my mother would agree. I wish you strength and peace with your decision. Add me as a friend if you wish and if you need support. Whatever decision you make will be the right one. Just know that.
  • jenilla1
    jenilla1 Posts: 11,118 Member
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    At this point, if there is no chance of recovery, I would not fight the inevitable, especially since she is not really herself anymore. I would do whatever was most comfortable for my loved one. I would not draw it out any longer than it needs to be. It's what I would want for myself. I hate needless suffering. Just be there with her at the end. It's hard, but it's truly a very special experience to be present when someone passes. :flowerforyou:
  • em9371
    em9371 Posts: 1,047 Member
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    im so sorry to hear about your Mom, its such a hard decision to make.
    at the end of the day your Mom trusted you to do what is best for her, it sounds like she has put up a real fight against the cancer, but there comes a point when treatment no longer helps and you just have to be with her, tell her how much you love her and let her go. It will hurt just as bad if you lose her now or in a few months, but at least she will be at peace.

    My Nan had a brain tumour in 2005, in October they operated to remove it and said she would make a good recovery with radiotherapy. A month later they found the cancer had spread through her body, they could have continued the treatment to extend her life by a few more months, but she decided she didnt want to spend the last few months of her life in hospital and wanted to die at home with her family. We could have talked her into having more treatment but that would have been for selfish reasons to get more time with her, the McMillan cancer nurse was a great help to us all. My Nan died in December 2005 and those last few weeks she was already gone, she was on constant morphine to ease her pain, it sounds terrible but looking back it would have been better if she never woke up from the surgery and didnt have to go through that :(