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Poco

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Well, we had our family reunion and it was wonderful. It made Dick so happy and everyone was so loving and caring. Today the hospice social worker came and Dick asked her about assisted suicide. It is legal in Oregon. There is an advocacy group in Portland who will help with it. They locate a physician for you but you have to be able to administor the drug yourself which could be difficult since Dick can't use his arms. So she offered an alternative method where you starve yourself under heavy sedation, You refuse all water and food and pass in a peaceful way, or you just starve yourself without sedation. When you are close to death your body shuts down so you don't want food or water anyway, this speeds up the process. I am sitting there horrified this conversation is even taking place. I told the worker that starvation would never happen on my watch. I push him to eat and go places and I can't go there. Ultimately it is Dick's decision and I can support him by not stopping him. I feel I can't take much more. I talked to him about it and he said he wants to do assisted suicide as soon as his legs go because he does not want to be a burden on anyone and rely on equipment and he has always had control of his own life so why can't he control his own death, They gave him 1 to 3 months so now we are on our second month. I want to be supportive and respect his wishes, but it is so againt everything I believe in. You people live this disease daily and have your thoughts and know the psychological pain involved in ways I could never feel. Just for a minute take religion out of the equation and share your thoughts with me. I am having a really hard time with this. I can stand back on some things but this is beyond anything I ever imagined I would be faced with. It is one thing to have philosophical discusions on death with diginity etc, but when it becomes a reality it is such a different playing field. A year ago we are walking on the beach and I just can't believe where we are now.
Thanks,
Phyl
 

Al

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Hi Phyl. I've thought about it myself but dismissed the idea after a great deal of thought. I know it is a personal decision but seeing my 7 month old granddaughters face light up when she sees me makes me want to hang on as long as I can. Before I didn't want a vent which in my case with breathing problems would be akin to suicide. I'm thinking maybe it's not a bad option now.
AL.
 

midwestgirl

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Hi Phyl
I am so sorry you and Dick have to go through all of this. Dick sounds like a very proud and independent man. When mom first got diagnosed, my main concern was to honor her wishes and support her and advocate for her - actually still is. At first she did not want a feeding tube, and the thought of her starving in this country just was really hard to think about. After eating became too scary and a chore, she did decide to get a feeding tube. I remember being asked if I was scared at the thought of placement (even though relatively minor). I responded I was much more scared before mom agreed to the feeding tube. But, I am sure, there are many PALS that opt not to have a feeding tube placed - which amounts to what Dick is considering. It is a really difficult decision - Dick evidently cares a lot about his family (not wanting to be a burden), but maybe if you tell him it would be harder on you if he decided on assisted suicide, or for him to stop eating. If he still does want to refuse food - I have read, and what your hospice nurse told you, that it is painless. None of us want our loved one to die, but when it comes to the final days, I want it to be peaceful and painless.

My prayers will be with you and Dick!
 

guwainengle

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It is soley a decision that one must make themself. I too am concerned if I would be diagnosed with ALS and deterioriate quickly what I may do. You must trust in the lord for guidance.

G
 

CindyM

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Hi Phyl.. I hear your pain. What a dilemma - You want to honor his wishes but your love for him wants to keep him near. I am so sorry for all this. Cindy
 

saska

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Hi Phyl, I am glad the family reunion was wonderful, and so sorry you are faced with such a horrible dilemma. The method the social worker was referring to is called 'palliative sedation' or 'terminal sedation.' The criteria for palliative sedation, as I understand it, is that the emotional and/or physical suffering must be so immense that the only way to relieve it is to render the patient unconscious. The patient is given large amounts of sedatives, and typically food and water are withheld. Mike was going to undergo palliative sedation for the same reason as Dick -- he did not want to be a burden. He went to an in-patient hospice facility and received wonderful care. In the end, he decided not to undergo palliative sedation.

You are so right that it is a far different playing field when the matter of assisted suicide is brought down to a personal level. I thought I knew where I stood on the issue (an advocate), but I was greatly relieved when Mike decided not to do it. I completely respected his decision though.

The only thing I can offer is that it is Dick's decision, and the best you can do is support it no matter how hard. My heart goes out to you, and you and he remain in my prayers. Mike, like Dick, was very strong-minded and strong-willed; yet, he changed his mind in the end. So might Dick. Mike did, though, receive large doses of morphine in the last month which did, I think, hasten his death. He died peacefully.

Wishing you peace,
Sharon
 

Willow

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Poco.....I don't post here often as I am not diagnosed with ALS/MND but read your post and felt I wanted to reply. I hope you don't mind.
First....my heart and prayers go out to you. You and your family are in a no win painful situation. I can only speak to you as someone who is in the "we don't know" stage of a disorder, but I also have a history of family members having a neuromuscular disorder.
Maybe because of our background I don't know, but we have always discussed quite openly with our immediate family what all of our wishes would be should something ever occur. Over the last 18 months or so this conversation had taken on, as you say, a more "real" tone.
I think we as humans are all guilty of the "well if it were me....I would....." persona. The problem with that is that we aren't them, we have no real idea of what their body and mind if feeling/doing. We can only see from the outside...which is as you have so very eloquently stated...is truly painful enough for us in ways we could never have imagined.
Twice in my life I have been asked to "remove support" for family members. They are times I will never forget and my only solice was thinking of them ...... not me and how I felt/wanted ....... and knowing they were going to a better place and would no longer be in pain.
Ultimately the decision is his.....but I hope you and he will have many talks of understanding before hand. I wish I could reach through the screen to give you a hug as I'm sure your heart is bursting with the pain of all this. May God bless you in this time of need and always.
Willow
 

hboyajian

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Dear Phyl, this must be an incredibly painful time for both of you. Dick may be feeling that he has so little control over his situation that he wants to find some way to be an active player in his own destiny. You love him deeply, so of course you want him with you as long as possible, no matter what his health condition. He loves you deeply, and wants the best for you and will do anything in his power to care for you as well. Maybe he feels this is the only way he can do that? Sometimes, I think a person needs to explore all options in order to feel them out and later on be able to make a decision, even if the ultimate decision is different than the many avenues considered. Talking openly about the possibility of assisted suicide may help him realize that it might not be the way he wants to go, but he can't come to this without facing it squarely as a real potential. Or he may feel that he wishes to be in control of his passing and plan it carefully so that he can have present those he wishes and leave this life on his own terms. I think it is important, as others have said, to support him in his choices about his life and death, but I also think that it is equally important to be completely honest with him about how you feel and what you think, how you think his assisted suicide might affect you in the long term. Whatever choices are made, your love for each other will carry you through. This is a really tough issue. Thank you for your bravery in bringing it up. Sincerely, Holly
 

Jamiet

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Well Phyl,

I take a personal interest in yours and Dick's situation, as, from everything that you have told me from months ago, i have alot of the same things (symptoms) Dick dealt with...although i'm undiagnosed at this time...i go July 23 for biopsy results.

I'm even a very very independent person like him, i've never ever ever needed any body else's help and just the thought of someone wiping my rear for me, is to say the least....scary. I had something to prove to my dad and others growing up, because he always had (money) and everybody always would "assume" that he supported me and tell me that, but the truth was....i had something to prove..that i didn't need anybody and would do it on my own..yes, i'm hardheaded. I bet...Dick dealt with alot of the same things (not necessarily same situation, but that's how he was raised).....and when you do, that's what defines your personality...your well being.

I have two young kids (1 yr and 6 yrs), i've already made the decision, as long as i can keep my eyes open, i want to live and the only reason for that...is my kids...nothing else, i want to see them grow up as long as i can. I have no other reason to fight in my eyes, as i've accomplished just about all my goals..there are still some, but the main goals are done and dusted.

I think that's where Dick is phyl. I don't know his entire situation, but your kids are grown (?), he's done alot of what he wanted to accomplish (i guess, except for growing old with you). There isn't much he has left in his eyes, except you and his "independence" and if he is any pinch like me, loosing your independance is the scariest thing a "man" will face. Didn't he have a garden? i seem to remember you saying that..i have a large garden..just the thought of not doing that is horrible...i climb the walls if i have to stay in the house longer than an hour.

He knows time is short and doesn't want to burden the only two things he has left, you and his independance....both being....very difficult to give up.

I guess from my point of view...as hard as it may be for you....respect his wishes, it will be difficult, but don't allow what little dignity he has left to be taken from him if that's what he is deathly scared of......he's more afraid of loosing that than death.

you guys are in my prayers and have been. I think of you all the time, ever since the "ears ringing" thread. I've been watching your threads close and they are esp. hard for me to read.

take care and god bless.

Jamie
 

joelc

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Phyl, I am filled with contradicting emotions when I read your post.
First, I am so happy your reunion went well and Dick enjoyed it, that is fantastic.

Dick sounds a lot like me, and a lot of others on this forum as well. I can identify with his thoughts, it would be too presumptuous to say I know what he is going through as we are not that person, but I have had similar thoughts and background to Dick.
I was never going to have a PEG or VENT because once I became a burden I wanted to be gone. Gradually my thoughts started to change.

I put my wife in my spot (she had ALS instead of me) and thought about her wanting to die before becoming a burden. THERE IS NOTHING SHE COULD DO TO BECOME A BURDEN - I WOULD WANT HER AROUND FOR AS LONG AS POSSIBLE. After thinking about that for awhile I had to soften my stand.

Also, I was afraid of what message I would be giving my children and grandchildren.
"when life becomes hard you quit?" OR "when I can't have things my way I am not going to play anymore?"

I came to understand that a person could still have "quality of life" in the condition we will find ourselves. All we have to do is accept it and change our attitude towards it.
Will it be easy - NO! Am I going to quit - no. I have changed my mind to accept help to stay alive so I can enjoy seeing my kids develop and watch my grandchildren grow. There is still a lot of councel to pass onto the kids and with modern technology I will be able to do that long after I stop being able to speak.

These are my personal thoughts and reasons. There is no criticism toward anyone who feels different. My heart goes out to everyone who is having to make these types of decisions. Good Luck!
 

alspatient

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I had posted here about the same topic. I have been living with ALS for 9 years. I have seriously considered medically assisted termination of life. Let me share some of those thoughts.
I am afraid. It scares me a lot. Now when I am uncomfortable, I am able to convey it and get corrective action. My fear is when I am unable to communicate it to my care giver that I am hurting.
My second fear is that I would be a burden on my family. My son is in college and doing well. I do know that my ASL bothers him. I don't want him to be less successful because of my illness. But I want to live longer and see him succeed and get married and I want grand children. My wife has a career that is doing well. But if my living is possible only by imposing myself on my wife and son then I would rather not live. If I were to die of a cardiac arrest tomorrow then I would welcome it. But then if I die on my own then it would imply that my wife and son did not care for me and so I chose suicide. That is not true. That is my dilemma.
My advice to you is this. If you do not think of him as a burden then tell him so. Make him see that you love him. As a PALS I have come to realize that the care giver is the greatest creation of God. I know how difficult it is for the people who care for the PALS.
I have never done anything seriously illegal or committed a sin worthy of feeling guilty about and I don't want to do it by committing suicide.
Please make sure that Dick is in his senses and that he is not contemplating suicide because he has grounds to believe that he is unwanted. If still he wants to end his life, then help him. Religion has nothing to do with this. You may find it funny. But the truth is that when I watch TV and I listen to the death all around, the thought that comes to my mind is that why not me. At times, I have felt jealous of the people who have died.
 

CindyM

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The worry wears one down, don't you think? Plus add the frustration of having a body that won't cooperate, and the vulnerable that comes from being chronically and terminally ill. Relief from it all sound like a perfectly reasonable wish. THat's why I admire a Pal or CAL who reaches out for help or even medication when it is warranted. It is a lot to deal with and we will help as much as we can. Take Care, Cindy
 

Poco

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Thank you for all of your honest responses. I talked to a friend of mine who is a nurse and she has seen people terminate their lives withholding food and using heavy sedation. She said it is very peaceful, and you are not gasping for air. I did ask a chaplin if that is considered suicide and she said from a religious standpoint no it is not. There are just too many raw emotions going on with everyone. His daughter doesn't understand why he wouldn't want to stay alive and see his grandchildren. I asked him that and he said he will live on in their memories and thoughts. He wants me to visit his grave and bring our dogs and flowers when we come. We all tell him he is not a burden, but the quality of life is his main focus. Everyday he tells me he does not want to live like this. How do you not take it personally. He can walk, eat and talk so I just feel he is giving up too soon. I still watch him light up when friends visit and I do push him to be part of life , even if it tires him out. I have heard your messages and they mostly say I should support his choice. I will do that but this is so hard for me. I want him to die peacefully. I feel all of your pain from your posts and thank you so much for sharing with me.
Phyl
 

CindyM

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Keep in touch, Phyl. We are here for you. Cindy
 

Jerrylee414843

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Well Poco this is as hard a decision as they come. Ultimately though Dick is the one that has to make it. I did a ppaper on Assisted Suicide and as you could guess I had many who supported it and many that did not. I think the quality of life is the main thing to think about for Dick. Machines, ventilators and such is very hard on the family that comes to the hospital everyday so please keep that in mind. I will keep you and your family in my prayers and take care. Jerry
 
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