Very Difficult Decision...Any Insight?

_VoV

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

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

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

You and your family are in my prayers. I have faith (as your mother does) that you will make the right choice.

MikeSEA

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

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

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

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.

killagb

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_

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

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

I am so sorry

May God give you strength to go thru this !!

LansingPugh

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

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

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

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

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

gnrshelton

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

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

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

kellicrandall

I am so sorry to hear this. I will pray for your family. I have been in the position of my Dad being removed from life support at the age of 57, so I truly understand your grief. I am also a social worker in a hospital and my primary assignment is oncology. I will say that there will come the time that you will KNOW what to do and you will be at peace with it. There is no rush to decide your next step. If Hospice is available to you, it would be well worth it to explore that option if you have not already. It is a beautiful program.

Take care,

Sincerely,

Kelli

Jenthin

Love you response...what a great heart you have to share with the world!
:flowerforyou:

scoyne999

I was in the same situation when my mom was diagnosed with brain cancer and passed away six weeks later. She was in home-based hospice for about a month and I have to agree with another poster about keeping her comfortable until she passes naturally. Morpheine really helped keep her comfortable and totally pain-free. She passed away in her own home surrounded by family. It was a painless and comfortable way to go and it was what she wanted. There was no way she was going to get better.

I wish you peace with your decision. Hugs...

donnam40

My heart goes out to you.

We have been through this with my mother-in-law, father-in-law and grandmother (all within 2 years).

A friend who had also been through it said to us not to believe it when people tell you that you'll feel better because they are no longer suffering and he was so right. When they are gone, they are gone forever and there is no turning back. If you are going to do this make sure you are completely ready and all of the right people have had the opportunity to say good bye. Resolve yourself to the finality of it.

My husband still has not been able to grieve properly 3 years later. It has been a tough time for the family. Be ready for it.

Take care of you in all of this and make sure you do what is right for your family.

Love and thoughts to you,

Donna

mikebudd

I had a similar situation with both of my parents. My father was first. At the age of 90, his kidneys failed. Even though I am the youngest of 6 children, the decision of what to do was left to me. I opted, against the doctors and hospital's recommendation, to place him on dialysis. The result was for the best. He responded to the treatment and lived another 4 happy years. At the age of 94, however, his health started to deteriorate, and he was in pain munch of the time, cause by other problems combined with the dialysis treatments.

I sat down with my parents and told my father that he could quit dialysis if he desired. The result would end if life if he chose to stop, but it would be fairly painless. He asked me to have his priest come visit him and, after talking to the priest and my mother, he made the decision to stop treatment.. I contacted our local hospice and the rest of the family. My father passed away four days later.

My mother started to have problems the following year.. She was in and out of the hospital with frequent infections, high fevers, and loss of consciousness. I again got hospice involved. My mother was 89 at the time and I again had a decision to make. Hospice recommended not to hospitalize my mother, but to medicate her to alleviate pain and to allow her to pass on. I had trouble accepting this because between infections she was fine. We were lucky. I hospitalized her and one of the doctors worked very hard to find the cause of her recurrent infections and found a drug that worked to end them. My mother is now 92 and doing very well.

Being in the position I have been in has taught me to try to help were there is truly hope, but to be willing to allow the inevitable to occur as easily as possible when the time comes. It is hard to make the decision to allow a loved one to move on, but I think you know when that time comes. It doesn't make it easy to accept, though. I still tear up when I remember talking to my father.

Good luck with your decision.

TubbsMcGee

This is probably the most difficult decision anyone in their entire life will have to make.

When I was 16, my mother was faced with the same decision. I was really the only person who seemed to get along with my grandma and willingly spend a lot of time with her. Days before my birthday, my parents agreed to let me move in with her permanently after I had turned 16. Of course, the day of my birthday, she was at home alone, fell, broke her hip and was sent to the hospital, where they then diagnosed her with cancer, telling her it was incurable and she only had a few days to live. My mom and aunt made the decision to take her off life support before I had a chance to say goodbye. I've never forgiven either of them because of this. They always tried to tell me that yes, it was for the best and she was no longer in pain, but I just wish I could have spent more time with her.

But in turn, this also makes me feel kind of selfish.

I imagine you've discussed this with other family members...and of course your decision is most likely going to be to keep her alive. I'm not trying to be rude in the least bit, but after 7 years of me dealing with my grandma's death, there comes a point where you have to put yourself in their shoes and wonder if it's alright to keep them alive and watch them struggle to breath on their own. The last 3 days of my grandma being hooked up to all of those tubes...it was really hard to watch. And I almost wish I hadn't seen her like that, it sort of sullies the memories in a way.

Either way, as difficult of a time as it is, I'm sure you'll do what's best for everyone.

My heart goes out to you, your family, and everyone near and dear to yourself and your mother

Kelekat

I had to make the decision to remove my mother from life support. She was only 62 years old. It was the worst, most difficult decision I've ever had to make. She died just a few minutes later.

My heart hurts for you. There is no easy way around what you will have to go through.

My wish for you is peace and understanding.

xokelxo

My family went through this three years ago. A child in our immediate family was born under stressful circumstances. She was only a few days old when we made the decision to let her go. We were told that if we had kept her with us, that she would have survived, but that she would never live the way we would want her to, and the way she should live. I can say as a family, we struggled and it was absolutely the most difficult thing that has ever happened to any of us. Personally, I will never let go, and she never leaves my mind. Even though she was only a few days old, it is still family. I wont tell you its easy, it isnt. Those few weeks were more sadness and pain than I could have imagined before, but now I believe we are all at peace knowing that letting her go was the right decision. Today, I feel just as close to her as I did the day I held her hand when she was born. Please know, that I share the story to hopefully help you to know that it will be so difficult for you, but think of her as well. I wish you the best wishes possible moving forward with your decision. I am sorry that you are in this position, and I encourage you to lean on your family. It will be okay.

Teliooo

my friend's dad had a very rare form of cancer, much like your mothers. In the end they let him go peacefully at home. He tried so many treatments but in the end it was the best way.

fiberartist219

Did your mother have a living will that would say what SHE would want done in these circumstances. Usually that is part of the package of documents drafted by the attorney along with the power of attorney and will, etc... Hopefully there is a document that spells out what she wants, and you can just follow that to the letter. Barring that, keep her comfortable and do what you THINK she would want you to do. Have you had conversations with her about it? I am sorry you are going through this. One day at a time. :flowerforyou:

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.

If there really is no chance of her regaining any of her abilities, then it might be time to let go, but if there is a chance that she can wake up and talk to you again, I'm sure she'd want that opportunity, even if she can't get up and run a household again. I would think that the chance to fight would mean she can do something, anything, on her own. If she can speak or give you a cute little wink, that might be enough for her. If she can't be awake at all or breathe on her own, then the fight might be over.

I know my grandpa was battling Alzheimer's for decades, and my grandma had to do everything for him. He couldn't speak, and he couldn't take care of himself, but he did mumble things at us and give us little expressions on his face that made me able to get to know him a little bit. He was a fun guy, even if he didn't have the abilities that the rest of the family remembered him with.

My family has talks like this from time to time. My grandmother says that she doesn't want to be hooked up to machines and if she can't function on her own, she wants us to let her pass on. I'm pretty sure I won't be her POA or guardian though.

Whatever you decide, you should not second guess yourself. Everyone will have their own opinions on this, and you will never please the entire family. Whether she lives or dies, it's not your fault, it's the cancer's fault. It seems like a lot of responsibility to make decisions for someone else, but honestly, nature is a powerful force that sometimes we can't overcome.

I'm sorry that you are in a spot to make this decision, but at the same time, you will always know that she loves you and trusts you. Whatever you decide, I'm sure she would fully support.