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Marypotter

Member
Joined
Mar 6, 2010
Messages
10
Reason
PALS
Diagnosis
05/2007
Country
IRE
State
co.clare
City
kilkee
I go in to hospice for restspite to give my carers and family a break. at the hospice I made a living will. I have refused to be be peg fed. I have refused antbiotics. Do not want any medical intervention and want nature to take its course. At the moment can not use hands. Am in a wheel chair. To me the cruelest part of disease can not speak any more. I have being told a should be on a soft diet. I can not do nothing for my self. I can stand up with help. I use motor med. On legs and hands and can do it with out aid of motor. My hands are straped on. Since being diagnosed with als I gained about eighteen lbs. I am so healthy other wise. My lungs seem okay. What I feel is this illness will take me bit by bit and linger as a vegetable for a couple of years. I am a catholic and have got advice from a priest and he told me that god will love me no matter my decisions. I have no fear of my god and he had only three days of suffering and he under stands when our suffering lingers for years and that I want out of it. No matter what way you look at it will not find a cure for years,. Even my family accept my decisions and have been told every thing by doctor. Their range in age from seventeen to twenty six. When I pass over I want my family not to grieve but be happy do not have any more suffering. I live on a farm and if had a ailing animal we would take it out of its suffering. please these are my opinions and do not wish to up set any one. I do not have any muscles wasting only in shoulders and and wrists. People do not notice shoulders unless I tell them. Do not suffer suffer much from fatigue.
 
Sweet Mary, I just wanted to tell you I totally understand your perspective. I also am a Christian, and believe that your choice is very different from "suicide". I'm also very glad your family supports you. If you should ever change your mind, Mary, and want the PEG, chances are you can do it. I hope your time in respite is really good for all. And I also hope you receive only support here at the forum, and continue to come in and post messages. God bless you.
Ann
 
That's your decision Mary and I certainly respect that.

I received a great deal of peace from praying the chaplet of divine mercy, do you know it?
I'm not Catholic, but I certainly found comfort there.

Mike
 
I am sorry to hear of your decision. As one who is more disabled than you I can still find a purpose to keep living and still maintain a good quality of life.
I respect your decision.
 
Dear MaryPotter,

Prayers for your peace and grace as you live this journey. While each person may choose a different path, we all lift each other up in prayer and love as you choose what is right for you.

Joel, you are one of the most incredibly strong, brave men I've ever met. You are an inspiration to us all.
 
thank you for you replies. I have a lovely picture of the divine mercy on my bedroom wall at the bottom of my bed. I know he is protecting me and I have a chat with him every night before going to sleep. I was in medugorje three years ago and was in lourde with the last two years and I do not think I am able this year. these places of worship were a source of great strength to me. maybe when the time come I May change my mind. It is a living night mare not being able to speak. The frustration is so terrible. Not being able to take part is so heart breaking.. Thank you.
 
Oh sweet Mary , my heart is hurting for you right now...you truley sound like such a wonderful person. I do agree with you and I pray often that the lord will hear my prayer, I don't want to go on any longer when I can no longer do things for myself......I'm happy that you were able to go to medugorje and the strength that was given to you...I pray for peace for you as you go through this journey..hugs, Linda
 
Speaking, or not being able to, was the straw point for me as well. People can't understand how aggravating it is not to be able to do something that was so elementary months prior.

There are many devices that are available in place of our voices. I've given talks to rooms of people using my laptop computer and a couple of speakers. Though the words may not come from our lips, they are still our words.
Stephen Hawking is still traveling the globe giving lectures and writing books and he has had ALS for over 40 years. He hasn't physically spoken a word for decades.

There is always hope. Stay strong Mary.
 
I'm not familiar with medugorje, Mary. Could you tell me about that?
 
Mary, your decision is a good one, it is YOURS. As Barry says, a GOOD life is more important than a LONG one. We are right behind you, around you, on both hands, and hugging you. So you can hardly take a step wrong, can you:). And I
hope our love will provide strength when it is needed. One thing is for sure and certain, we all UNDERstand and I know more than one of us are taking the same decision.
Much love
Irismarie
 
My dad has recently made the same decision as you Mary, to not get a PEG . Thank you for your posting as I have been struggling with his decsion. It is entirely his decsion, which he made aftre having all the facts, and while I respect his decisons and will support his choice, I am struggling with the implications of his choice. I appreciate reading your thoughts, they echo my dads in many ways. Thank you for sharing
Susan
 
Mary, my husband has same thoughts as you but we are not quite in a position to have to make that decision yet. BTW ~ he is 100% Irish but born "American". I am not sure where in Ireland his family is from. Anyway, your wishes should be respected by all. I wish you peace and strength.
 
Mary what a strong person you are to share such a personal decision, I am so glad to hear your family is in support of you that is so important. I will pray for continued strength for you and your family. This is a very loving place I hope you will come and share with us often. Know that no decision is the wrong decision as long as it is right for you. God Bless, you and your family will be in my prayers.
 
sounds like you have found peace with in your self ... i guess i am a selfish person i want my son here with me and family for as long as he can be but , i know i would have to respect his decision when it time but , am praying he fight's for a very long time
 
thank you for your messages of love and hope. I was nervous about bringing up this subject. We are all fighting this disease with great courage and strength. It is a decision that grew on me. I could not explain the feelings of hopelessness and despair I have gone through when out side shopping etc. And people come up to me and want to shake my hand as a hello jesture and my hands do not move. Then embaressment sets in and their try to speak to me and I can not speak back and cried so much over these enconters. I do not really want to go out now.the heart ache goes away after awhile but at forty eight years I have come to decision that this is not living .
 
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