No sense suffering to death.

n1w2h3 · 07-31-2012, 08:46 PM

I want to thank all who replied / commented on my first post to this forum. They were kind and considerate. A far cry from the feedback I get from the other side when I comment to the Yahoo political news articles on my home page.

All of us afflicted with a life threatening disease have our own thoughts on how to manage our situation. Many have family members to consider. In my case, all of my family except for a sister who lives across the country, have left this world. She happens to live in a state that has the Death With Dignity law. I would like to see the state I live in adopt a DWD law.

It is not that I want to die, but if I am going to die from ALS, why suffer it out to the last heart beat if I don't have to? I saw how my father suffered terribly until he died from liver cancer 35 years ago in Oregon. The doctors could do no more for him, so they sent him home to die. I am certain he would have choose DWD if it was available at that time, but it wasn't for another 17 years.

I'm not that far into this disease yet, but it has changed the quality of my life to where considering my age and situation, I am going to do all I can to get the DWD law here, or move to a state that has it. I have been in favor of DWD ever since DR. Kevorkian offered his service. I believe the sick care industry framed him because he was cutting their profits. It is my body and my life. I would much rather a physician help me end it as painlessly as possible than having to try it myself -if it comes to that. Right now, my state legislators prefer for me to take matters into my own hands if I so chose.

hjlindley · 08-01-2012, 08:27 AM

This is and individual decision, but I do agree with you. I am distal, so right now this disease is frustrationg, irritating, limiting, but not life threatening. I don't beleive right now that I will vent or peg, but I will cross that bridge when I come to it. How much do we let humankind interfer with the course of nature? We are all in the same hot water with each having a choice to make. I have no siblings, no childern and both of my parents are dead. I have been married to my magnificent husband for only 2.5 years, but it will not break him when I die. I just think we all need to be informed. And sound as if you are. Good luck

Susan10 · 08-01-2012, 10:26 AM

a lot has changed in end of life care since your dad passed. please dont think you will be like him. one of the good members of my als support group passed very quickly the end of may. that led to a good discussion about how our dr will handle our own situations at the end, durin our june mtg. i'm confident he will not let me 'suffer'...they explained hospice care, narcotic use for air hunger, pros/cons of venting, etc.

i have executed an advance directive, power of attorney, transfer on death deed for my house, beneficiaries for my bank accts, and dnr order. i have written my obit, talked with the funeral home about my wishes. i'm hopefully a long way from leaving, but i'm ready to go if called by my Lord.

jamiem · 08-01-2012, 10:30 AM

Susan, I admire you so much. You have made some very wise but hard decisions. I am trying to be that strong. jamiem

Miss · 08-01-2012, 10:51 AM

I don't disagree with you. However, you never know what you can handle until it presents itself.

My husband firmly believed he wanted to die when he lost the use of his hands, but that wasn't as bad as he thought it would be. When he lost the ability to speak, he was sure it was time to go. But, the dynavox put him back in communication with everyone. When his legs gave out, there was no question that this was enough. Except, he still had a power chair to get out and about in. At 50, he was a complete quadrapeligic and could not talk. He was shocked that he was still enjoying his life, his family and his friends. He decided to go on the vent. God had other plans. Two days before I was to go and learn what we needed to do to set the house up and get training, he died. He died comfortable, happy with his life and looking forward to his future.

Every situation is different. As I said, I don't disagree with you. I do believe that we should have the right to choose. However, allow yourself to live in the moment instead of assuming that you cannot handle the future. Work to get that law changed, but don't be so focused on ending your own life that you forget to enjoy it. You might just be as surprised as we were.

HelenL · 08-01-2012, 11:28 AM

I agree with you all... but at the moment I'm still living with ALS, not dying from it, it seems so far away. I'm done the legal stuff, made sure people know what I want, but seriously don't think I''m going anywhere for a long time. Maybe not. Make the plans for your future, but make sure you give yourself an "out " if you change your mind at any point in time. Don't ever feel pressured to go through with anything based on others, and that means living or dying. Good luck and I hope you decide to stay here on the forum.

patricia1 · 08-01-2012, 06:05 PM

Quote:

Originally Posted by Susan10

a lot has changed in end of life care since your dad passed. please dont think you will be like him. one of the good members of my als support group passed very quickly the end of may. that led to a good discussion about how our dr will handle our own situations at the end, durin our june mtg. i'm confident he will not let me 'suffer'...they explained hospice care, narcotic use for air hunger, pros/cons of venting, etc.

i have executed an advance directive, power of attorney, transfer on death deed for my house, beneficiaries for my bank accts, and dnr order. i have written my obit, talked with the funeral home about my wishes. i'm hopefully a long way from leaving, but i'm ready to go if called by my Lord.

I did the same thing even the songs l want in church .Its gave my family peace of mind and some control on my part .
End of life is more peaceful then 35 years ago .

God bless
pat

notgivnup · 08-02-2012, 04:15 AM

I agree with all the above. The decision for me without a husband was hard and took two years, but I will leave it in the Fathers hands with out much intervention, as for me long term care by my children would not be my choice, as I read of what caregiver families suffer through and how hard it is on them. But on the other hand if I had a professioal cargiver and the strenght and money to see my grandchildren grow and marry I would be a happy puppy..One day at a time,.Noone knows what tomarrow will bring. {{HUG}}

Susan10 · 08-02-2012, 12:47 PM

i also picked out the songs, pat. early on, on this board, someone recommded doing all of this. b/c i was the responsible party for my mother's final arrangements, i knew the value of taking these actions. my family will be stressed enough when my time comes. i consider this my last gift to them, to make it all just a little easier.

Miss · 08-02-2012, 03:18 PM

When my mother died, there was a folder that had EVERYTHING in it. She had even put sticky arrows showing where to put her date of death. That was all. There was absolutely nothing else for us (her 3 daughters) to do. When my father died, nothing was done. She didn't want us to go through that, so she took care of everything. It was such a gift. When my husband died, we had everything in order, too. It made a very difficult time a bit easier.

notme · 08-05-2012, 02:57 AM

I think Miss hit it right on the head. What we think today would be a "don't want to live like this" could change when we find that we can adapt easier than we'd thought.

For me, it's my hands--as I use them for everything I do. I'm used to crappy legs and have used either cane, walker, then scooter for several years. Easy to adapt, even if I can't leave home alone due to inability to lift the darn thing.

For another, it might well be the legs or voice or ... The list is endless.

I think we each determine our own quality of life. Some are fine with very limited abilities, as long as the mind is strong. We should have the right to choose--but there are so many moral implications within that, that states are likely to be slow to come around--especially in election years.