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Carolan,
I also really appreciated your post and all your thoughts. I initially thought I would never agree to a trach or feeding tube but after reading posts in this forum I see that there are people who are happy with those "aids" and their lives. So I am trying to open my mind to all options and say I'll make the decision when the time comes. It's not like we won't be in our right minds at that time and unable to make an informed choice.
 
my mother in law so far has been very vocal that she wants no breathing aids ever. she has refused a bi-pap---my husband uses a c-pap for apnea, so she knows what it is.........

while we all understand her wishes, and support her decision, it is really hard to understand why she draws the line at no help of any kind, when clearly there are options that are minimally invasive and will improve her quality of life and give her more energy. we all hope she might see things differently further down the line.

i'm not sure if her refusal is anger, denial, or what. she is just diagnosed in August, although the symptoms, according to her were most apparent in March of this year, although we suspect they may have been present before then, and she may have chalked them up to aging.

i said in another thread that aside from being a smoker, she lives a healthy lifestyle, and has always been into "natural" remedies, vitamins, etc. I think she still holds some hope that she is going to find the right vitamin/mineral combination and heal herself, which is heartbreaking, but i guess without some hope, i don't think she would go on at all.
 
Your MIl might still change her mind as time goes on. Sometimes PALS do that after reading and "Meeting" other PALS here. But you are doing the right hting to support whatever final decision she makes. She is lucky to have you in her life. Cindy
 
i can't imagine getting her on here. i read and printed some information about swelling of feet to give to her when she comes home today.

i suggested support groups, and she said she wasn't interested in hearing everyone's horror stories. i'm not sure if that is denial, or anger, or what. i think she flip-flops between believing she has ALS, and hoping she doesn't. its heartbreaking.
 
Hi,

I read through all the posts and I did not see this, but if someone else said it, please forgive me. My two cents:

I think choosing not to live has to do with quality of life but I also think it is the idea of being taken care of. That is not the same thing. It takes a lot of grace and strength to be a care giver, but it also takes, maybe even more, to be a "taker of care." When we give care we are sort of "in charge" and can "feel good" about what we are doing even in the most difficult moments. When we accept care we are not in control and we have to give it up to others. My sister lived with cancer for 12 years. She was quite the role model in the grace of being and letting others help her so she could live longer. However, she had her limit and the morning of her last day she woke up, sat up, looked at me and said. "I can't get out of bed anymore, you know what that means." She died three and 1/2 hours later. Her leg had broken again within it's cast when she was moved two days before.

I don't know if I can really let others take care of me. Not working and just being is an art in itself. Is that quality of life? Maybe symantics but to accept care of others is a real gift too... God Bless, Peg
 
Thank you Peg for putting this so well. You are right that it is hard enough just to be sitting around all day. Accepting care from others takes real effort. Quadbliss has learned to be free of his body and to give over the care of it to Jen but this is a skill that will require a large learning curve for me, I'm thinking!:-D Cindy
 
my mother in law mentioned her quality of life right before she had her fit at the doctors office a couple of weeks ago. she has always been very active and independent and naturally, being for the most part now confined to a wheelchair is pretty hard for her to handle. i think she has good days and bad days. she said that the way she was living right now was not an acceptable quality of life for her, but i think she said that in the heat of the moment.

i sat down with her later and told her that there were still lots of things we wanted to do with her, and there were still lots of things she was able to still do. she agreed and things have gotton better since that day for the most part.

i think she does worry alot about people having to take care of her. it was a big step for her and my father in law just to move in with us. the first week she kept mentioning they were going to go home and that this was a visit. she has since said she doesn't want to go back home ever, and they have settled in making our house their home. i'm just glad to be able to give them that support so they don't have to worry about money and just concentrate on enjoying their time together and with me, my husband and their grandson. thats really all they need to concentrate on.
 
Beautiful. What a lovely gift you have given and they have accepted. It seems the way it should be. God Blessings and peace to you all. Sincerely, Peg
 
I agree, texgirl. Peg said it best. You have given them a lovely gift and they are fortunate ot have you in their lives. Cindy
 
Hi,

I read through all the posts and I did not see this, but if someone else said it, please forgive me. My two cents:

I think choosing not to live has to do with quality of life but I also think it is the idea of being taken care of. That is not the same thing. It takes a lot of grace and strength to be a care giver, but it also takes, maybe even more, to be a "taker of care." When we give care we are sort of "in charge" and can "feel good" about what we are doing even in the most difficult moments. When we accept care we are not in control and we have to give it up to others. My sister lived with cancer for 12 years. She was quite the role model in the grace of being and letting others help her so she could live longer. However, she had her limit and the morning of her last day she woke up, sat up, looked at me and said. "I can't get out of bed anymore, you know what that means." She died three and 1/2 hours later. Her leg had broken again within it's cast when she was moved two days before.

I don't know if I can really let others take care of me. Not working and just being is an art in itself. Is that quality of life? Maybe symantics but to accept care of others is a real gift too... God Bless, Peg

This is so true. I have been amazed at my mother's ability to accept care, and I know that it hasn't been easy for her. I think of that statement in "Tuesdays with Morrie" where Morrie says that the worst thing for him will be when he cannot wipe his own rear. It's like being a baby again, but also being aware of the dependency. And that's simply something that some people choose not to go through. It's definitely a personal choice, and I can't say for sure what I would choose in that situation.

Just a quick update on my mom: when she received the trach, we thought that she would be completely vent dependent for the rest of her life, but now she is slowly being weaned. Yesterday she was off the vent for 4 hours during which time she breathed completely on her own! They just started weaning her a few days ago, and she is already showing great progress. Our "new" goal is to have her be on the vent at night and then try to breathe as much as she can on her own during the day. There might be days where she needs more ventilation, but now at least we know that she can breathe on her own. When the vent is pumping air into her, I can feel her shoulder muscles contract, and that's also a sign that she still has quite a bit of muscle left in her upper body.

I hope that I have emphasized that the choice to vent is a personal one, and that we should respect everyone's individual decision. But I also wanted to share this latest news about my mom because I hope that those faced with this possibility will be aware that things can change over time. The pulmonologist at the ICU wasn't sure if my mom was a candidate for weaning, but now that she has recovered from the bronchitis, we can see her getting stronger. He said that the advantage of getting the trach is that she won't ever have to go through the intubation down the throat again, even if she could be weaned for now. Infections can make people seem weaker--that's even true for me without this devastating disease--so doctors might not be able to tell you exactly what to expect if you recover from pneumonia, bronchitis, or any other type of infection. A trach does not necessarily mean that you will be on a vent 24 hours a day. Sometimes the information that we hear/read is biased or limited, and I would hate for people to be making life decisions based on misinformation. This is still a life-changing ordeal for her, and she has her good days and bad. I can't say what will happen to anyone else, but I do think that these individual stories are helpful along with more statistical information from medical websites. In addition to the supportive aspect of this forum, the personal experiences are so helpful for me because I can see how everyone has different experiences with this disease. This reminds me that we can't predict what will happen next...
 
Wow Carolan....what a first post. Obviously alot of wisdom and concern for others. Make that the first post of many.

God Bless
Doug
 
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