How bad does it need to be before you would consider ending it?
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Kirk
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dang landofsmiles and roadkill -- your situations give me great sadness. Most people have good intentions...but sometimes we say stupid things...even us Christians (or could be ESPECIALLY us Christians). Roadkill...If you will pm me your phone # and address I will make some phone calls on your behalf and get someone to help you. There has to be someone that can help. Please don't give up!
RoadKill
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Rose, I stopped responding to you after you wrote me privately and told me to get a grip. You seem like a nice person, but that hurt.
Much of what you surmise is not so simple.
As tempting as it is to respond directly to what you have written here, I would prefer to not engage in a dialog w/ you wherein I have to explain + defend myself.
I hear your frustration and concern, however, please don't criticize me. You don't know me, you have no idea what my life has been like, and you don't know what it is like to face ALS alone.
< s i g h >
I will respond to others later. 1-finger typing, forearm cramping.
Much of what you surmise is not so simple.
As tempting as it is to respond directly to what you have written here, I would prefer to not engage in a dialog w/ you wherein I have to explain + defend myself.
I hear your frustration and concern, however, please don't criticize me. You don't know me, you have no idea what my life has been like, and you don't know what it is like to face ALS alone.
< s i g h >
I will respond to others later. 1-finger typing, forearm cramping.
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Phil M
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We are used to being in control of our bodies, and it is so difficult to adjust. I think we all fear being too miserable to bear, and wouldn't it be convenient if we could just flip our own switch? I will always have mixed emotions about this subject. I will try to go all the way for my family if anything. Its important to me for them to feel comfort.
rose
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Roadkill,
I think you have me mixed up with someone else. I had not received any sort of response from you in any form, from any message I have ever sent to you. We have not corresponded, other than me sending you messages.
I agree completely with you in that this is not the venue to discuss the specific problems that you have. I only responded publicly to you in this thread because I felt it unfair to characterize this forum as a whole, as being uncaring toward you. And really, in retrospect, after reading the outpouring of support you'e received within this thread, it was unnecessary for me to do this.
It seems your circumstances are even more difficult for you in that you find yourself alone trying to cope with everything. I wish you only the best, and, again, I strongly urge you to contact Stu again. He has the resources to help you, if you will let him.
Phil,
I too have mixed emotions about this. I was surprised when my son was so outspokenly in favor of me extending my time by any means possible. (the rest of my family has not said that much one way or the other, other than they want me to "stay") He was talking about eye gaze software, and other options out there , explaining I would never be bored passing the time throughout my days. But, I don't know how much of "me" I am willing to lose, and how much of a burden, whether or not its called that, I want to be for those who love me. Thankfully my progression is slow, and I'm able to keep putting off a lot of thought about this. A great part of my weakness to date is voice, swallowing and breathing related, so it makes it easier, but yet harder. Easier, because I am able to do so many things for myself still. Maybe not as well as I used to do, but its still me doing it. More difficult because obviously we all need to breathe, and I will have to make up my mind about venting. I'm sure we all would love a crystal ball, just to know what to expect and plan accordingly.
I would not consider suicide for myself, but that is as far as my feelings go on the subject. What someone else choses for themselves is their choice. Its good to take into consideration the effect this action would have on those left behind though. And, if suicide is something one feels is an option, it would seem like one should prepare their family ahead of time.
I think you have me mixed up with someone else. I had not received any sort of response from you in any form, from any message I have ever sent to you. We have not corresponded, other than me sending you messages.
I agree completely with you in that this is not the venue to discuss the specific problems that you have. I only responded publicly to you in this thread because I felt it unfair to characterize this forum as a whole, as being uncaring toward you. And really, in retrospect, after reading the outpouring of support you'e received within this thread, it was unnecessary for me to do this.
It seems your circumstances are even more difficult for you in that you find yourself alone trying to cope with everything. I wish you only the best, and, again, I strongly urge you to contact Stu again. He has the resources to help you, if you will let him.
Phil,
I too have mixed emotions about this. I was surprised when my son was so outspokenly in favor of me extending my time by any means possible. (the rest of my family has not said that much one way or the other, other than they want me to "stay") He was talking about eye gaze software, and other options out there , explaining I would never be bored passing the time throughout my days. But, I don't know how much of "me" I am willing to lose, and how much of a burden, whether or not its called that, I want to be for those who love me. Thankfully my progression is slow, and I'm able to keep putting off a lot of thought about this. A great part of my weakness to date is voice, swallowing and breathing related, so it makes it easier, but yet harder. Easier, because I am able to do so many things for myself still. Maybe not as well as I used to do, but its still me doing it. More difficult because obviously we all need to breathe, and I will have to make up my mind about venting. I'm sure we all would love a crystal ball, just to know what to expect and plan accordingly.
I would not consider suicide for myself, but that is as far as my feelings go on the subject. What someone else choses for themselves is their choice. Its good to take into consideration the effect this action would have on those left behind though. And, if suicide is something one feels is an option, it would seem like one should prepare their family ahead of time.
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abbas child
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Namita, go to the top of this page, and see in blue, People With ALS - "PALS". Click on that. Then, to the left of the page numbers, on the left side you'll see something in blue-purple, "start new thread", where it says "post reply" on this page. Click on that. You should be ready to begin your new thread. Hope that helps.
You might go to the "Caregivers Support" page instead if that would be a better place to ask.
You might go to the "Caregivers Support" page instead if that would be a better place to ask.
landofsmiles
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I started the thread because it's something I am dealing with now and discussing with my family as I feel I am going downhill so fast my quality of life could reach the point within months and not years that i would not wish to carry on and I want them in agreement and prepared. I thought others must have similar decisions to make and wondered how they viewed and planned for the future.
Why virtually every thread on this forum has to have people spouting quotes from the Bible I don't know. My nurse/livein/carer is Buddhist and doing a damn good job of helping me and I can't say I'm a Christian but I'm not going on about how Lord Buddha will get me through this every chance I get.
irismarie...I will reply with the info you asked for. You appear to be on the same wavelength as me!
Why virtually every thread on this forum has to have people spouting quotes from the Bible I don't know. My nurse/livein/carer is Buddhist and doing a damn good job of helping me and I can't say I'm a Christian but I'm not going on about how Lord Buddha will get me through this every chance I get.
irismarie...I will reply with the info you asked for. You appear to be on the same wavelength as me!
TedH5
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landofsmile...if you wanted to quote Buddha that would certainly be your right. Please understand and certainly I can only speak for myself but I imagine that others would agree when someone "spouts quotes from the bible" as you said or has a Christion quote in their signature as I do it is only meant to be an inspiration and how we feel. Certainly myself or no one else can tell you how to feel nor what is right or wrong to feel. When trying to encourage others you often turn to what encourages yourself because it is what we know.
Again my apologies if I offended you clearly not my intentions, my goal as Rose has in her signature is to offer friendship and support to all who need it. I am sorry that you are suffering and hope that you are able to find peace and are able to make a decision that is right for you and your family.
Again my apologies if I offended you clearly not my intentions, my goal as Rose has in her signature is to offer friendship and support to all who need it. I am sorry that you are suffering and hope that you are able to find peace and are able to make a decision that is right for you and your family.
t34gib
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Here is my two cents on the subject. I have made everyone around me agree that i am the one who decides when enough is enough and then I will stop the feeding or if some other means is available which would be quicker I would consider that. I honestly don't know when enough will be enough. As someone else has said you just get used to the changes as they happen and who knows. I don't think i want to have to be cared for in the sense of having everything done for me. I don't know if I want to burden someone else with my personal duties. Some of us will not have the option of hiring someone from the outside to take care of us and some of us are just not the type of people who can imagine having to be cared for in every aspect of life. This is not to imply anything to those who are comfortable with it. But everyone has to make up their own limits. I don't know how i will feel as time goes on. At this point, I cannot speak, eat or drink and I have some problems with breathing. I have some weakness in my left hand and I get tired pretty easily. But, I am walking, driving and most everything else. I can still golf, although not nearly as well as I used to. I take it slow and easy and do what i can. But as I lose mobillity i don't know how i will feel. once i lose my arms I will be pretty much useless in being able to care for myself and i cannot imagine that. So, we all do what we can and we all make our own choices. We need not judge each other on choices made. I understand that there are differences in everyones circumstances. I cannot imagine having to go through this without help of any kind. It is frightening enough to imagine going through this with help, unbearable to imagine going through this alone. My thoughts are with you.
So, that is my stand on this and I ask that no one judge anyone else for their position. We are here to support each other, no matter what each decision is.
I am not sure what I believe as far as religion goes. I guess the old song says it best, " I swear there ain't no heaven, and I pray there ain't no hell" I believe we are energy in a constant state of change. I want to live forever but I know that death is closer than I had hoped it would be. So for all those that believe in God, Jesus, Buddha, Mohammed or any other being, Bless you and try to remember that they are all the same in the end. If there is a God, then he is God no matter what name he is called. If you study the religions, they are all basically the same and can be reduced to one little phrase that I believe encapsules all that is good. "Do unto others as you would have them do unto you." Take all the books of the Bible, the Quaran and any other writings and they can all be deduced to that little phrase that if we all lived by, there would be no wars.
I know it sounds too simple because we all want to believe that we believe in the "correct" God and Religion, but really people, we are all Human Beings and we were all born and we will all die.
I am sorry for having gone on so much, I just give all this so much thought and this is a vent.
My best to you all and may we someday learn to just love one another and get along with each other, and then maybe we can talk about all the rest.
So, that is my stand on this and I ask that no one judge anyone else for their position. We are here to support each other, no matter what each decision is.
I am not sure what I believe as far as religion goes. I guess the old song says it best, " I swear there ain't no heaven, and I pray there ain't no hell" I believe we are energy in a constant state of change. I want to live forever but I know that death is closer than I had hoped it would be. So for all those that believe in God, Jesus, Buddha, Mohammed or any other being, Bless you and try to remember that they are all the same in the end. If there is a God, then he is God no matter what name he is called. If you study the religions, they are all basically the same and can be reduced to one little phrase that I believe encapsules all that is good. "Do unto others as you would have them do unto you." Take all the books of the Bible, the Quaran and any other writings and they can all be deduced to that little phrase that if we all lived by, there would be no wars.
I know it sounds too simple because we all want to believe that we believe in the "correct" God and Religion, but really people, we are all Human Beings and we were all born and we will all die.
I am sorry for having gone on so much, I just give all this so much thought and this is a vent.
My best to you all and may we someday learn to just love one another and get along with each other, and then maybe we can talk about all the rest.
irismarie
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It is not just how bad IT the ALS has to be but how bad your life is all together. I am bored bored bored from being able to do nbothing but read and usze this tiny uncomfortable comuter. There is so much to be done that I would love to do and I can only look at it, not even that with the large part of my loved garden
EVery single day I think about suicide and dig deeper into it. I want it to be sure and certain. Amazing how many people succeed when you look at how difficult it seems to be to get the good drugs etc. I am fed up with crying, fed up with loneliness, fed up with lack of close love, fed up of nurses and homehelps and other invading my house (to help me, I know) and nothing is no longer mine. I can find nothing, I am bored, tired, in some pain, know i shall be put to bed tonight at 5 3à for a very long, iuncomfortable night. I want my LIFE back. the highlight of each day - and i am so lucky to be ale to do it - is taking my dogs out which lasts about fifteen minutes as where I can go is v limited. THen back to prison. And if visitors come, I cannot speak to them, cannot share a up of tea. I really really really have had it bup to HERE.
WHAT IS THE POINT OF GOING ON is the better question to ask
EVery single day I think about suicide and dig deeper into it. I want it to be sure and certain. Amazing how many people succeed when you look at how difficult it seems to be to get the good drugs etc. I am fed up with crying, fed up with loneliness, fed up with lack of close love, fed up of nurses and homehelps and other invading my house (to help me, I know) and nothing is no longer mine. I can find nothing, I am bored, tired, in some pain, know i shall be put to bed tonight at 5 3à for a very long, iuncomfortable night. I want my LIFE back. the highlight of each day - and i am so lucky to be ale to do it - is taking my dogs out which lasts about fifteen minutes as where I can go is v limited. THen back to prison. And if visitors come, I cannot speak to them, cannot share a up of tea. I really really really have had it bup to HERE.
WHAT IS THE POINT OF GOING ON is the better question to ask
abbas child
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Iris, I wish I was able to climb through this computer screen and arrive in your house. You need a real live hug so badly and I want to hug you! I think from our prior conversations, if you just had loving people who care... not doing a "job" but love you--you'd be so much more content with the other losses. Meanwhile, as long as your fingers can work that tiny computer, your sharp wit is a delight to so many here. My heart lights up when I see your name by a thread and know I'll read a post made by you... even this one, my loved friend.
Annie
Annie
joelc
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Iris, I am so sorry you are having such a rough time and can't see the purpose of continuing! We love you so keep fighting for us, we need you here. My days revolve around this forum and watching hockey. I have not been outside for many months but I don't get upset with that. I find joy here and make the best of it. Yes, I do have my wife and a couple of caregivers so I am extremely fortunate.
We would miss you terribly if something happened to you! Please fight to stick around because we all need you. I wish there was something we could do to change your situation! I wish I could have you move in with us!
We would miss you terribly if something happened to you! Please fight to stick around because we all need you. I wish there was something we could do to change your situation! I wish I could have you move in with us!
TedH5
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Iris I think you have touched more lives then you realize! You are loved and you are needed by your forum family! You may not be able to touch us but it does not make us any less real because our concern, caring and love for you is all real and hopefully you can feel that!
irismarie
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Yes, I do have my wife , sais Joel.
THERe is the differene that counts.
Whent he last help nleft last night at 6 o clock and I had already cried all day, I just panicked, panicked, couldn not face being alone with this anguish, this horror. By eight thirty I was out of it, screaming and a full scale panic attack. Got friend up who found some bromazepam
and made me start reading a book till it struck in while she sat on my bed. Carers jusy say "don't cry, Iris" as tho I had a choice. I really don't. But enough as I can fell the panic starting up just talking about it.
Doc comes this morning
love and thank s byo all
THERe is the differene that counts.
Whent he last help nleft last night at 6 o clock and I had already cried all day, I just panicked, panicked, couldn not face being alone with this anguish, this horror. By eight thirty I was out of it, screaming and a full scale panic attack. Got friend up who found some bromazepam
and made me start reading a book till it struck in while she sat on my bed. Carers jusy say "don't cry, Iris" as tho I had a choice. I really don't. But enough as I can fell the panic starting up just talking about it.
Doc comes this morning
love and thank s byo all
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