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Please forgive the pitiful...


kamataca

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I'm feeling a bit pitiul and overwhelmed today, so I thought I'd lay it all on you guys. :roll:

Mom went to her nephrologist yesterday. She has a lot of kidney complications due to years of medical trials for her Crohn's (She was one of the first diagnosed in our area 30 years ago, so she did all the fun stuff), and on a good day her kidneys function at about 30%.

Any-hoo, the neph. gave mom "Things to put in her thinking cap" about the chemo. I want Mom to have all available info, but I think she is pushing everything to a "Worst case-scenario" level. She now is thinking that if she does the chemo her kidneys will fail, and she will be on dialysis 3X per week, and her life will be over. The Dr. said it was a 'possibility', but everyone would monitor it closely.

Mom then told me that if she went on dialysis, she could just choose to opt out of it, "slip into a coma, and die peacefully." I guess the neph. told her this, too. It's good to have plans.

So now we are back to talking about end of life issues, when I truly don't beleive she's even close to that yet. My husband suspects that she wants me to talk her into the chemo so that she doesn't have to make the decision. Of course, it would all be my fault as well if things go wrong. She didn't share the rest of this conversation with my brothers.

Gosh, I sound pitiful. I just don't know what I'm supposed to feel or do now. I know it is all Mom's decision, and I will truly support whatever she wants to do. I just am not sure what she wants for me to say or do. I would be frustrated if she didn't share information with me, but I'm not sure what to do with the information. Also, the defeated attitude makes me weary.

She's probably just looking for someone to listen, just like I was with you guys today. Thanks for that!

Kelly

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((((Kelly)))),

I, for sure, don't know just what you might do here. One thing I have done in the past is when faced with any major decisions I make a list with 2 columns. One column is the 'pro' column and the other is the 'anti' one. Could you and Mom sit and together make such a list? You could help with suggestions for each column and she would too. That way you may get a better feel for just what she is leaning toward.

You are right that the decision is hers. Don't know if this suggestion could do anything for you or not. I feel so badly you are faced with this situation. Maybe encourage Mom to share with you brothers as well?????

I will be thinking of you and sending cyber support, Kelly.

Kasey

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Kelly, I know what a tough situation you are finding yourself in. It's really hard to be the one that's responsible for decision making when dealing with something of this importance. If I were in your shoes, I would probably let my mom know that I have worlds of faith in her judgement and also let her know how strong I think she is. Your mom probably needs some really strong votes of confidence right now. I'm saying prayers for you and your mom!!!

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I'm so sorry for you Kelly. I know how helpless you feel, but like you said, it is her decision. Bill recently decided that he has had enough treatment and wants to have some quality in whatever life he has left. I'm not even the one with cancer, and I have no idea how you make those decisions. He just had the best weekend in over a year; yet today he is back to feeling awful and the oncology team wants us to bring in Hospice. I guess my point is that things can change on a dime, just follow your heart and come back and let us be here to just listen!

Love,

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I believe you and your Mom sound like thinking human beings, and not at all pitiful.

I can so relate to some of the issues you bring up. I have Crohn's disease, too, and my Kidneys and Liver are damaged already by the Polycystic Organ Disease. I have to weigh everything as well; which drugs and other treatments are worth the potential risk to the other organs, etc. How much potential benefit can I reasonably expect if I pursue certain treatments and drugs.

It is a tough way to try to live, but I'm willing to do a great deal in order to be able to keep on opening my eyes each day.

I think you bring up an important topic. We all are the ones who should be deciding just how hard we are willing to fight, and how much we are willing to endure in order to keep on living. We can't make an informed decision on how far to go and for how long if we are not given all the facts as they apply to our specific cases.

This is so hard. I wish you and your Mom well, no matter what you decide.

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Kelly, not pitiful at all -- human! I think your mom uses you for a sounding board, and she checks out options out loud. If you can consider that and stand the verbal sharing, you will do her a great service. I know it is hard to listen to -- I do the same for my wife. They just need to air things. Give her your opinion on things, and point out that nothing is completely certain whatever we choose. We just have to go with the best info we have to make those decisions. And, yes, ultimately, the patient has the last say. Hang in there. Don

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Oh Kelly, I am so sorry. I don't know how you make it through these days and these kinds of decisions. Your mom is very lucky to have you to talk these things over with..although it does place a lot of emotional topsy-turvy's in your mind.

Do your best to walk her through this...I like the idea of the pros and cons list..sometimes it helps to see it on paper.

Hang in there!

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You guys really are the best--and so wise. I called and talked to my younger brother today and told him what was going on. Then, after my kids were out of the room, I told Mom that I was glad she shared her info with me. I used Ann's beautiful line about knowing how strong she was, and having great faith in her. My brother also asked me to throw in the bit about not having to make her decisions just yet, and keeping her mind open to all options as she gathers information.

I also was honest and told her that I sometimes don't know how to respond--that I don't want her to think I am pushing her into something she doesn't want to do, or that I am pushing her away from something else. Isn't it funny that honesty was the last thing I thought of using? :wink: But I reiterated that she could always 'sound off' to me. I sometimes forget that she lives alone, doesn't have my dad to talk with, and that this must feel very lonely for her no matter how hard we try.

So thanks again! You guys are the greatest.

:) Kelly

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Glad that you talked with your mom and brother, Kelly and that you are feeling better.

Let me share something my daughter told me about my mom (her grandma) talking to me about her options, her fears and just everything! I was feeling overwhelmed and just didn't know if what I was saying was of any help to her in making her decision if she should have chemo/rad...anyway, I told her over and over that we would support whatever decision she made, etc. My daughter pointed out that my dad, if alive, would of been her sounding board but since he wasn't...then we (her kids) take on that roll for her. Guess I never thought about any of that..I was so involved in the shock of the dx, the onslaught of appointments, decisions, and so worried about her that I didn't see the entire picture. Anyway Kelly, my mom also lives alone so I am sure that *our moms* are lonely and having us to bounce things off of, does help them :D It's difficult for us but in the end..we'll do just fine.

Please take care, ok

Love and light

Libby

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Hi Kelly,

Maybe your mom just feels because she is living alone, that this will be a burden on her children. Moms don't want to burden their kids as they are usually used to being independent or had their spouse to lean on. She is alone now and doesn't want to interfer in his childrens life.

Perhaps if she doen't know by now, you can tell her how much she means to you and your siblings and that you only have one mom and that means the world to you and how important she is in your life.

Maryanne

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Kelly,

So sorry I missed this post originally. Sounds like everyone is one the same page now and ready to take cues from your mom. Please know I keep all of you in my prayers and sending positive thoughts,

Hugs,

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