Very Difficult Decision...Any Insight?

tig_ol_bitties · February 2012

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...

RocketsGirl · February 2012

I am so sorry and will keep you both in my prayers. I think that whatever you decide (and no I have not been in this situation) just remember that your Mother trusted you with this decision so she knew that you would do what is best for her. I don't know if that helps.

*hugs*

samandlucysmum · February 2012

Do you have family/ friends to help and support you?
Best wishes to you.

tabbydog · February 2012

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:

My1985Freckles · February 2012

So sorry to hear this (((((((((((((((((((((((tig_ol_bittie))))))))))))) you will be in my prayers.

knelson422 · February 2012

I am so sorry to hear about your situation. You will be in my prayers as you make this decision.

MrsCon40 · February 2012

Our family collectively made this decision about my grandmother. She was the best Nana any kid could ever dream of and we were so close to being able to give her her sole life's dream: a great grand child. But she was a shell of herself, wrecked with cancer and really already "gone".

Once it was decided, my mother, brother and I all got in bed with her and snuggled and were there when she breathed her last. It was so hard to make that decision but once her last breath was drawn it was as if we were all set free.

I am sending you all of my love and prayers. You are just like your mother - incredibly strong and brave and beautiful.

bethanymelton · February 2012

It is difficult and I just whispered a prayer for you. My mother had a severe (but brief) battle with acute onset luekemia, and we had to make the decision to move to comfort measures. Very difficult, but my father, brother's and I were all in agreement. She had a living will and my father and her had discussed the matter at length over the years. That made it easier on us. I agree with the person who said that she trusted you with this decision....trust her wisdom.

latinahada · February 2012

First off, I am so sorry!! You are in a very difficult position. My advice to you, is to think of her quality of life...What quality of life will she have on life support? I hope you will be at ease with whatever decision you do make. ((Hugs))

tig_ol_bitties · February 2012

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.

hope516 · February 2012

OMG

I have never and hope I never have to make a decision like this. I am so sorry for what you already have lost, and what you could possibly lose no matter what decision you make. I too will keep you both in my prayers and I hope God helps you make this literal life changing decision. I pray you find peace with your decision no mattter what you decide. :flowerforyou:

gwynb041109 · February 2012

I was in a similar situation. My dad had liver cancer. And his kidneys and liver were failing. I had to make the decision to stop the dialysis on him because it wasn't helping anymore. And stopping the dialysis meant that my father would pass away within two or 3 days. probably hardest decision I ever made, but I knew he wouldn't want to live with tubes and such in him. I feel for you. Its not an easy decision. If you need to talk email me. Praying for you

woodmetal · February 2012

I will pray for you too!! I have never been where you are and pray that I will not be but years ago I was pregnant with twins and I did not miscarry. Deciding to have the surgery was the hardest thing I had ever done. I was blessed with a daughter and another son shortly after but to this day 18b yrs later I still sometimes wonder if there could;d have been a miracle for my children. I know that you will get thru.

Hugs and more hugs!!
Kim

coyoteo · February 2012

Did she never say what she wanted done? Or put anywhere in her will her requests for this time in her life? The hospitals here have a document called "5 wishes" in which a person outlines all of that stuff. You might want to check with the hospital and see if they have one in her medical records.

ScarletFyre · February 2012

I haven't been in your shoes, but did want to say that i am very sorry for what you have to go through and will keep you in my prayers.

MummyOfSeven · February 2012

I am so, so sorry that you're having to go through this.
My father also had an extremely rare type of cancer and had drawn up similar documents. I went over the options thousands of times in my head, never reaching a decision on what I would do should the occasion arise. The decision was taken out of my hands when Dad unexpectedly died in his sleep.

I can't offer you any real advice on this, except to think of what your mother would want. Not what others think she would want, or what you want for her. It's a terrible decision to be faced with, I know. Whatever decision you and your family make, be at peace with it.

Peace and blessings.

karenjoy · February 2012

I watched my own Mum battle with breast cancer, that spread to her liver, bones and brain. She lost herself at the end, and was not sure who we were or where she was. In the last days of her life I would not have put my worst enemy through what she went through, in fact if the Dr had not 'made her comfortable' I am sorry to say I would gladly have put a pillow over her poor face to end it for her, I loved my Mum so very much, but the disease was taking her from me so painfully, so slowly and cruelly that I would encourage you to think of it as ending her suffering, rather than keeping her with you, her pain is greater than yours right now, I am sure, and although it is hard, make sure that you say all the things you want to say to her at this time, spend as much time as you can with her, as I would give everything I own to spend an hour with my Mum after almost ten years.

I think that the pain you feel is the hardest pain to bear, but your Mother is suffering needlessly, allow them to ease her pain xxxxxx

coyoteo · February 2012

You can request to have her kept comfortable until she goes naturally if that is what you want. Morphine is a blessing is hospice situations.

marquesajen · February 2012

I'm sorry you're in this position, but it is good to know your mother believed in you to make these decisions.

We're at the point where my grandmother doesn't eat (alzheimers). She rarely opens her mouth and just won't eat. Her advanced directive says no tubes or artificial intervention, and even though that can be challenged my mom and aunts and uncle are following it, because she's had a long life, she's lived well and worked hard, but now the time is coming for her to be at peace. I can't give you any advice to a yes or no, but think what you'd want if you were your mother, think about how best to honor her fight. Remember that eventually, regardless of your choice, she will die. It is normal, natural, and a part of life. Good luck

sassylilmama · February 2012

Again I am so sorry for you having to go through this. Personally I say she chose you because you know her best. Would she want to live without most of her brain function? Would she want to be in pain? Would she want the family to be on pins and needles with worry and fear? You know the answers, that is why she chose you. Not that anything makes this choice easy but that is just my thoughts on it. No matter what you decide know you did the best you could for her.

embersfallen · February 2012

I'm so sorry you are having to deal with such a hearbreaking time.... I have not had to deal with this directly...but also know both my grandparents lasted months longer then expected before they passed away....I think the best thing to do is to come to the decision that gives you the most peace in light of your specific beleifs, and your moms... treasure those moments you have with her whether a day or months...and tell her how very much you love her......

when my Grandfather was within a day of passing... I lived very far away..he was already in a coma like state... pretty much non responsive... but I called him and my grandmother held the phone to his ear... I sang him a worship song as we shared the same faith...and my grandmother said a single tear trickled down his cheek... so I KNOW even in that state...he heard me and that soothes my heart to this day.

I hope it is ok to say I will pray for you for wisdom what to do...and for peace that is rooted in love, especially the love you share with your precious mom.

Donnacoach · February 2012

So sorry for this. My mom,, two years ago my Mom had a heart attack. Instead of stopping the CPR after a short period of time, the paramedics continued for 20 minutes. She was placed on a machine to keep her alive following that. It was VERY VERY hard to see my mom there, but not really there. What made it even harder, is that whenever there was a noise her eyes would open up. All the Dr.'s kept saying the same thing, "She was 20 minutes without oxygen to her brain, she is brain dead." So, they essentially wanted us to, "Pull the Plug." I STILL don't know if we did the right thing. I still see her eyes opening up to sound and ask myself often, "Was she really not there?" It is a heartbreaking decision for you to have to make. Just know that whatever it is, that you chose to do, will forever remain with you. Your mom will be pain free, which certainly is something you want. You don't want your mom to go away, which is normal, but ask yourself this, "Is she really still here?" other then physically. Trust yourself to make the right decision. It is you and only you who has to deal with what comes after. I ask myself If I would do it again? Honestly, I don't know. I loved my Mom with all my heart and still do question whether or not she would have even woke up. I had to put my total faith and trust in the hands of Dr.'s and God. Do whatever makes you feel best. Nobody can even begin to know what you are truly feeling inside. Trust and believe in yourself. I am sure you will do what you think is best. Good luck to you and your mom.

infamousmk · February 2012

I have never been there -- but ((HUGE HUGS)) ... I'm so sorry.

quietlywinning · February 2012

I am so sorry.

Just love your mom. Keep her as comfortable as possible. Ask lots of questions of the doctors and nurses. How do the treatments affect her? Will stopping treatment make her more comfortable or less comfortable. Will stopping the cancer treatments affect their ability to give comfort care?

There are no one-size-fits-all answers, and really, no right or wrong answer. My *personal* belief is that whether or not treatment is continued, comfort care is non-negotiable. To me, that means fluids cannot be stopped. They shouldn't be forced, but shouldn't be withheld. Dehydration is uncomfortable - frequently painful. I would require they do everything possible to ease pain or any other physical or emotional discomfort.

I am so sorry you are going through this. It is obvious that you love your mom and want what is best for her, so just know that whatever decisions you make ARE the right ones. Love is the answer. That love will stay with you for the rest of your life.

iuangina · February 2012

I'm so sorry that you are in that situation. It's so tough facing those types of decisions. I've been there. You have to think about what your mom would want and what her quality of life is right now. I would also look to see if she put anything in writing about what she wanted her treatment to be if she were in this situation. If there are no advanced directives, you need to ask yourself a couple of questions: would she want to live like this? am I keeping her alive and suffering for me or is that what she would want? My prayers are with you both.

Tia_N_Mac · February 2012

I pray that God will lead you in your decision and help you to choose the path that is best for your mom. I am sorry that you are going thru this. May God bless you both.

whencynstops · February 2012

We had to make this choice with my boyfriend following a motorcycle accident. The decision was ultimately up to his father but he did take my opinion into consideration along with the rest of the family. My boyfriend was in the Marine Corps and had a living will so we knew what his thoughts on the matter was. This made the choice less difficult for us. It has been almost 5 years since the worst day of my life but I still stand by our decision.

I hope what ever decision you make you find comfort in it. Do not let anyone pressure you into a decision. Sit with your mom, hold her hand, and think for as long as you need to. Ultimately you know what she would want.

Whodatgirl77 · February 2012

As a hospice nurse I see this far to often...not knowing when to say enough is enough as far as treatment, family members not agreeing when that time is, shades of gray when it comes to what the patient really wanted, medical professionals who do not always have the courage to paint a realistic picture of prognosis, etc. I am sorry you are going through this. Maybe a family meeting with the medical professionals will help your brother understand better what's going on. Unfortunately you are in a difficult position. I wish peace for you and your family in this process and that your mother is comfortable.

Mom0fTwo · February 2012

I would ask myself this one question:

"Is keeping her on life support better for her or better for me?" Usually the most instant response is the best one to help determine what you should do, this is a similar situation that happened with my Nana.

Stefanie7125 · February 2012

my mother passed away in 1999 from cancer. It took her very fast (she was gone 9 wks from the diagnosis), but not because she didn't fight. She did everything the doctors asked, all the treatments and medications. Nothing helped. We were notified very late on a Saturday night that she probably wouldn't make it through the night. This is with me having just visited on Friday, not believing how great she was doing. She was up eating a cheeseburger! I really thought we had been blessed with a miracle. Until that phone call. We got there as fast as we could. I crawled into her bed and cuddled with her. Gave her water with a sponge, played with her hair and told her it was alright for her to go. She didn't have to hang on for us. I loved her, but it was time for her to let go and be healed. It was the most difficult, yet easiest thing I ever had to do. All she sacrificed for our family throughout all the years it was very unfair of me to ask her to fight any longer. Treasure the time you have been given.

I am praying for you, your mother, your family and this decision that has been thrust upon you. No one should have to go through this. You will do what is best regardless of how difficult it is, know that with all your heart!

cdbravo · February 2012

My mom was just diagnosed with mucosal melanoma in her nasal cavity. Only 1 out of 25,000,000 people in the United States are diagnosed with it. Basically the same odds as winning a state lottery. I hope that I never have to make the choice that you are about to make, but I know that if I had to, I would have to let her go. When there is no longer a chance of recovery and you are just prolonging the inevitable while they fight through the pain, I think it is time to let go.

With that said, whatever decision you make I'm sure your mom will understand, so make the one that you can be at peace with.

Very Difficult Decision...Any Insight?

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