Don't Focus on Dying!

[joelc]

Joel ... I'll butt out on this subject in the future. You already know my practical considerations, and your optimism has caused me (and many others) to investigate the subject further.

I think you are doing a great public service by providing a counter argument to the doom and gloom view of doctors. Keep on carrying the message of living life to the fullest ... to the very last drop.

Thanks Beth, but please do not butt out!

All this interaction and different views are important as they really help to clarify what each of us are trying to say. And that is good. :smile::lol:;-)

 

[pvale]

I'm sorry Joel, for what I wrote above, it's nothing on you or what you wrote, just my own personal situation. I'm a long way from needing a trache, and things may change by that time. They won't give my wife a kidney because I can't handle caregiving for her, and right now they say they won't give me a trache, because she is unable to be an effective caregiver. No. I'm definatly not ready to die, and would do anything possible to extend my time here that I can. I'm 54 years old, and think I have a lot of time left for the normal span of a man's life. It's so hard to focus on anything else, when all those around you act like you are under a death sentence. I hope the statistic changes, because of those of you that extend your lives with mechanical ventilation. I hope I can be a part of that statistic when the time comes, but those people around me are pretty pessimistic.

Perry

 

[sadiemae]

Started rereading some threads from when I first came to this forum a yr ago. This one is a good one. Thanks Joel!

 

[irismarie]

it is not that simple. Youbwrite as though on ecan really choose. THAT I S NOT THE CASE; MY illness has advanced so quickly, i h&ve no loved one to be around é' hçurz a day, there is no suchbsimple hchoice. AND DE1TH will decide no matteer how positive one mpight be determined to be

 

[olly]

i do understand what joel is saying and he is only trying to help by keeping it positive.............theres been a few threads lately that have been about giving up or ending life,these types of posts do not offer the "support" on the als "support" forum.
yes,everyone is different in progression and circumstances.........some are emotionally stronger than others in dealing with all this.
i think joel is just saying you should not give up hope and just give in to the inevitable.
doctors agree a positive outlook goes along way in helping those with a terminal illness survive longer.........i 100% agree with that and read so many stories of those not just with als but cancer ect .

some months back there was a program about a man who suffered horrific brain injury and they thought he was brain dead,just when they were going to switch off his life support his eyes moved.
it took many tests and waiting to see if he had enough brain function to keep him alive.
cutting the story short,his family said he would not want to live totally paralysed,unable to communicate and it was better to let him go.......but they were wrong.
by doing a test with his eye movement they asked him and he answered yes with his eyes.
even with the devestating state his body and brain was in he wanted to LIVE.
i cried,it was such an inspirational story.

is,nt there a saying..........where theres life theres hope.

good to read beths posts..........she still pops up with her words of wisdom and wit

 

[Phil M]

I refuse to put my family in the position of having to pull my plug some day. And I don't mind seeing the lord. Thats the way I see it for now. To each their own.

 

[jmchilindrina]

Joel I agree with you. I take care of my mom who is now on a ventilator and will continue to do so because I love her and I thank God for all of the time we have with my mom. Since being on a ventilator she's seen 3 grandchildren be born and she was able to be at my wedding. Sure she has days when she gets depressed but she loves her family so much and is always thanking God for everything she's lived to see. We always try to keep a positive attitude and this new change has just become a new normal in our life. I hate it when people come to visit and look depressed around her or focus on death. For the most part, my mom is a happy and positive women and doesn't need any negativity around her

 

[Madison1943]

Joel, I don't know why it makes you mad when other pals refuse a trache and vent. What do you care what they do?
I'm not mad that you want to live the way you do. But after I read your daily "procedures" and saw what you and your aides have to do to get through the day, I said that's another reason why I don't want to live with a ventilator! Not the main reason, but a reason. I don't want to live with this disease. Today it's all right. But I'm not sure about tomorrow or a month from now.

Carol

 

[joelc]

Carol, when did I ever say I am mad when someone chooses not to get a trache and vent? I have repeatedly stated it is a very personal decision and there is no right or wrong answer. Everyone is free to make the decision that is right for them.

If you read through my procedures again you will realize that 90% of them have nothing to do with being on a ventilator.

I would not have had to do the procedures if I could still talk. It would be so easy to tell everyone what I want done if I could talk but I can't so it made it necessary to do these procedures in detail.

I have never told anyone they have to get a trache and vent or I will be mad at them. I have never felt that way. When people ask questions I state my experience. Sorry that bothers you so much.

 

[tdamess]

i was trying to figure that out my self joelc

 

[olly]

phil ,i dont know if you may have missed the point of my story......if not i appologise.

the man had requested before his accident that if he ever was in that situation he would not want to live.......something so many people say to family,myself included.
but untill we were ever in that position very few of us can say that for sure,it has changed my mind.
when it did happen to this man his feelings changed and despite the fact he was totally disabled and dependent on life support his will to live was strong.
i think the point is here we can never say never till the time comes.
joel is saying a trache and vent is an option and i am sure any loving family would not see it as a burden but as a blessing to be able to have there loved one still with them.
though i understand there will be some who feel they have had enough and have no will to prolong there life with mechanical assistance ,that is fine and there choice..........but untill that time comes you dont know........your will to live maybe stronger than you think.

 

[tdamess]

phil ,i dont know if you may have missed the point of my story......if not i appologise.

the man had requested before his accident that if he ever was in that situation he would not want to live.......something so many people say to family,myself included.
but untill we were ever in that position very few of us can say that for sure,it has changed my mind.
when it did happen to this man his feelings changed and despite the fact he was totally disabled and dependent on life support his will to live was strong.
i think the point is here we can never say never till the time comes.
joel is saying a trache and vent is an option and i am sure any loving family would not see it as a burden but as a blessing to be able to have there loved one still with them.
though i understand there will be some who feel they have had enough and have no will to prolong there life with mechanical assistance ,that is fine and there choice..........but untill that time comes you dont know........your will to live maybe stronger than you think.

my mother still wanted to live after a major stroke never to be able to live on her own again or even go to bathroom by herself 2nd stroke did her in stuck in bed for 8 years she wanted to live and she never wanted to be depended on anyone. the director at tom's rehab in n.c. said you would be suprised at how many change thier mind when the time comes

 

[RoadKill]

joel is saying a trache and vent is an option and i am sure any loving family would not see it as a burden but as a blessing to be able to have there loved one still with them.

My family has refused to help me. One sibling has repeatedly screamed at me that I should kill myself.

My friends and spiritual community will not help me. Yes, I have asked. Repeatedly.

A trache? I don't have medical insurance because I am so behind on the mountain of paperwork. Like a few others here, I am on my own with this. People like me have the choice of eventually ending it or dying alone, soiled and hungry. (And if you think God will be angry, will it be with me and not with those who abandoned me? not with those who have judged me unmercifully?)

I don't have the family, social, medical, and financial resources some of you have. Don't tell me it is about attitude or will to live.

 

[TedH5]

Dear Roadkill,

I am so sorry for your plight. Dealing with this disease is difficult enough, doing it without support is unimmaginable. I know words of support are not what you need, I will give you my prayers and hope that you are able to find peace and comfort as well as the support and care you need and deserve.

 

[sharona]

Dear Roadkill,
I feel that your spiritual family ,siblings & family all will pay for how they are treating you.God loves a cheerful giver & that doesn't necessarily mean money,we are suppose to give from the heart.I have the same problems with my husbands family & 2 of his friends that he grew up with,but that's ok because I am able & Larry is progressing slowly with what ever his diagnosed is.I told one of his friends if you can't come & visit now when something happens don't come near me stay the F- AWAY. Enough said.I will pray for someone to help you. I thought someone suggested asking Stu Millheiser for help,Did You ? God Bless
Sharon