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Need Advice (again!)


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Hello,

Everyone here has been so helpful, so this is the first place I turn to when I am trying to find answers.

As you know, my father is in a nursing home and dementia is taking over. His body is holding it's own, but his mind is losing the battle. Most of the time he doesn't realize the seriousness of his disease and thinks he is there because he is having trouble with his feet. But, when the drs talk to him about whether or not to "keep fighting" he always says yes, he wants too.

My brother and I have power of attorney, but not for medical decisions. My question to you ..has anyone gone thru something like this and had their loved ones declared incompetent and then had to make some tough medical decisions? Afer watching my dad go thru a spinal tap last week, where they could not get any fluid and tried over and over again, and now want us to bring him back to try again..my brother and I just don't know how much more we can put my dad thru. And the end result will be the same, no matter what.

If we do go ahead and have my dad declared incompetent, and we make the decisions to stop all of this, except for food, water and pain meds...can we live with that? We both know, that if my dad was lucid, he would not choose this life. Thanks for any advice.

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Annie,

I believe you answered your own question at the end of your post. You said that you Dad would not want to live this kind of life. I myself have not had to make the descisions, however I have known some people that have had to. Each one of them did not reqret making that descision. There comes a point where you have to consider quaility of life, also put yourself in their shoes. Would you want to keep living in that condition? Pary about it and I am sure that you will recieve the right answer.

Love always

Derek

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Annie,

When Tanya and I spoke about a situation in which one of us would need the other to make decisions such as the one you describe, she said "I know you will do what is best for me, and I will do what is best for you." I trusted her implicitly, and know she trusted me in the same way. Because we talked incessantly about just about everything, we knew what one another thought and felt about end-of-life decisions, suffering, etc., but we did make legal declarations as well, something I suggest for everyone.

Unfortunately, I have experience in making these kinds of decisions, and as difficult as the determination to end T's suffering was, knowing she would have to continue suffering if I didn't look after her was far, far worse. This is a very personal decision; I have a friend whose wife stated to him with absolute clarity that she did not want to continue fighting. He attempted to override her decision with the doctors. (the docs followed her directive) I can tell you that he has mentioned this more than once with shame. He feels selfish about his attempt.

You will have to make the tough choice, but it seems that cultures and religions throughout time have recorded various versions of the golden rule for good reason. It might help to ask yourself the same question you asked if you don't make the decision to reduce his suffering. "...can we live with that?"

Steven

Do not do to others what you would not want done to you.~ Confucius

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Wow this is a really difficult one. I would like to offer another point of view.

My man always said that he wanted to go out with a bang and didn't want to linger through all that aged suffering that we were witness to. But as his health declined (physically as well as mentally), he didn't want to die any sooner than he had to. His children and I had endless debates about having him declared incompetent but it came down to not being able to take away his dignity. He was fortunate in that his body took him before his mind was completely gone. But I guarantee that he would have fought tooth and nail to live another minute if there was a way...even if he was no longer the man who declared he would never want to live like that. The person who was taking over his body certainly wanted to live.

That being said, I hope that someone will be able to make the decision for me when my quality of life is not what I want today. And I don't envy you the decisions that you will have to make. I'm certainly not offering any advice or criticism, just another view. These decisions have far too many variables and sometimes the consequences are lose/lose propositions.

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Annie,

I agree with Derek. You and your brother know your Dad better than anyone else. Trust in your heart and you'll know what to do. I was in the very same place you are right now. Only the first time my Mom looked me in the eye and said "If I have to live this way, I'd rather be dead." I knew she meant it. It was the way she said it that I knew she meant it with every fiber in her being. That day helped me to make every decision I made after that. We are 6 children but it seemed I was the only one who could make a decision. I signed the do-not-rescisitate papers. I decided we would get Hospice and signed all the papers. I had to decide to give her enough blood to get her home. You see, I knew she didn't want to die in the hospital. She wanted to pass in the home she was so proud of with all her children around her. She was given 1 pint of blood just enough so that my brother in Kentucky could make it back to Louisiana. That was Friday. She left us Sunday. I have no regrets for any decisions that I made. I regret more not taking the time to spend more quality time with her when she was here and healthy. That's what makes me cry now. I think if you reread your post you'll find your answer. I'll say an extra prayer that God helps you and your brother find peace with answer.

Missing my Mom,

Trudy

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Well My situation was different but similar, I was forced to put my wife in hospice since she wasn't able bodied anymore, all her friends pretty much took over against my wishes but I allowed her to go to her homeland, often I regret that decision, But I wished her to be happy in her final moments, but we never discussed if she was to fall ill, but to respect her final wishes while she was coherent and communicative. I hope you find a solution that satisfies everyone involved.

Truly,

William

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Why don't you ask to talk to someone from hospice. i think they maybe able to help you answers some questions. this is a hard one, my mom had her mind to the end, the body was just gone. i know that i am going to make a living will so it will help my husband . my thoughts and prayers are with you. lori

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Annie,

I don't know what's going on with this website, I posted a response but again it hasn't showed up.

I was very fortunate when I went through this with my beloved mother-in-law, because she made a living will. What did your dad indicate when he was still lucid? That is what I'd go with. If he never specified, then you have to as yourself what you would want done and go with that. Above all, don't beat yourself up over your decisions, he wouldn't want that, and you will do your best, you know that, and that's all anyone can do. We will be praying for you in this very difficult situation. We love you!

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Thank you for all your responses. I was touched by everything that was said.

It made me think about so many things.

I just wanted to let you all know that yesterday, at my dad's dr's appt, things became very clear to my brother and I . My dad's dr talked to us without my dad in the room. He spoke openly and honestly and for the first time in months, I feel like we have his support. He talked about what he would do if this was his dad, he was already steps ahead of us as far as what he thinks we should do next. So, I feel like we didn't have to make any decisions right now. He believes we are at a point where we need to stop treatment and help my dad with what time he has left to make him comfortable. I felt overwhelming sadness but also relief. I did not want my dad to live years after his mind has gone. It is so much to process, but I feel better knowing the medical team is supporting us now. The other thing that caught me totally off guard was , the dr got emotional and told us he was "honored" to have met my family and that most of his patients come in with no family support or loved ones.When he walked in yesterday, not only was there a son an daughter, but a son-in-law too. He never sees that much support. He said the way that my brother and I have handled all of this, speaks volumes for how we were raised. He said he would be with us until the end and he would never forget us. I was shocked. It felt so good to be proud of my family again, as you know , my brother and I have carried a shame with us for the last year that wasn't ours to carry. Thank you for your advice and for being here!

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Annie, So glad to hear that there are still doctors out there that care so much. I am glad also that you finally realize that the shame wasn't yours to carry. When my mother-in-law was told that her cancer was terminal I can remember the feeling that all of our family went through it is sad in the long run you will realize that if you decide to stop treatment you will know it was the right descision. Look into Hospice care, they were wonderful and were with us every step of they way. Also with Hospice she was able to be at home instead of at a hospital. I don't know what your situation is, but if it is possible I think it is better. I will have you in my prayers

Derek

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Annie, dear, your most recent post has left me in tears. You are so deserving of the compassionate words you received from your dad's doctor yesterday, and I am so grateful that he said those things to you. He is right ~ you and your brother didn't just fall off a turnip truck ~ obviously you learned some very valuable lessons about love, devotion, loyalty, and honor from both your parents. Your father is blessed to have you in his life right now, and I am certain that your mother is smiling down upon you from her special place in heaven. We feel honored that you have allowed us to accompany you on this long and difficult journey, as by your shining example, you have taught us some very valuable lessons, too. :wub:

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Annie,

I am so glad you found a compassionate and wise doctor. It is important to listen to that voice inside of ourselves...you have your answer and can rest assured you have done your best for him. My best to you.

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I didn't know where to post tonight...it's been a long day. We had my dad at the hospital for the second attempt at a spinal tap. Luckily, today they were successful. Now we wait for the report from the neurologist and then we will start taking my dad off all of the meds and hopefully make the transition to hospice. It was a hard, sad day. Then when I got home I had an email from my sister-in-law, she has informed my brother she is ready to file for divorce.

My brother has been dealing with depression and anxiety for a few years and in the last 2 years he has been having trouble with spending and not eating and running all the time. He is spinning out of control, and I know it's out of control because of my mom's illness/death and now my dad's illness. I am trying to understand my sister-in-laws decision, I am just having trouble with the timing of it. Nothing like "kicking a guy when he's down"...I am just so worried what this will do to my brother. So, if I can ask you to keep him in your thoughts and prayers tonight that would mean so much to me. Thank you.

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Annie,

I hope you and your brother can feel the group hug we are sending you right now. I agree, your SIL's timing stinks. It was this past Friday that I made the decision to give my Mom 1 pint of blood so she come home to pass with us by her side. I remember how heavy that day was. God will get your family through this. He got us through....

Missing my Mom,

Trudy

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I am sorry to hear about your sister in law's decision. It seems this death/grief thing has such a far reaching boomerang effect. Divorce isn't the answer, understanding and caring are. I will pray for your brother...and for you as you go through this.

Hugs to you!

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