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JennB329

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PALS
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US
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Ohio
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Columbus
It's official, my dad is refusing the feeding tube. I've tried and tried and tried and thought that we'd made a break through last month. But... as of last night, he's officially refusing. While I do believe it's his decision and fully support his choices, how can he not understand how bad starving to death is going to be?

He says it's just prolonging the inevitable. Worse yet, this is causing alot of grief and stress for my mom and I don't know what to do for her.:cry:
 
Such a difficult decision for your Dad, Mom and for you. His passing does NOT need to be painful. Do you have Hospice coming in? Sending you hugs.
 
Jenn
So sorry your family has to go through this terrible time. I know who you feel. My wife needs to make the same decision your dad had and, although she as some time yet, she has given me indication she will make the same choice your dad did. I don't agree but as you say, it's their choice. We can only respect that and love them for as long as we have them. God bless and keep you.
Jim
 
Jenn.. I agree that contacting Hospice is a good idea. Among the services available through hospice are counselling and support groups, not just for the patient but for the family!
 
Jenn--
I don't get on the forum much these days, but I wanted to let you know that my husband also refused a feeding tube in 2005. His doctor at the time told us he would be dead in 6 months and put us in hospice. My husband is still alive and still eating by mouth. He can't feed himself (we have a hired caregiver) and does have some swallowing problems. I don't know where your dad is in ALS (we are in year eight 8), but with care and a suction machine he may continue to eat longer than you might think.
Sharon
 
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Thanks for sharing, Sharon. I've made peace with my dad's decision and fully respect his thought process AND his decision. We just passed the first year post diagnosis on 3/27/09 but he was symptomatic for a year before that. He's losing weight fairly rapidly, but if he's able to plateau and hang in another 6 years... it would most definitely be a blessing.

Jenn
 
These are the times when being a CALS is sooo tough! You are right to love him through this and respect his decision. Prayers for your strength and grace as you love your father through his illness.

Peace
 
Jenn--
I hope your dad will plateau too. What we have tried to do with Gerald is to get as high calorie food down him as we can when he is eating well. We go through a can of (20 oz) Thick-it in 10 days (all his foods and drinks are pudding thick), which adds quite a few calories. We too have tried to respect Gerald's wishes. It's been very tough at times and I've wavered, but some in the forum have helped me see both sides of the issue.
Prayers.
Sharon
 
My Mum also refused a feeding tube, and is now (I think) in her final stages. She still manages to drink, through a straw, and takes nourishing drinks like this. Just today, she has been having difficulty drinking through the straw, and I have had to start giving her juice on a spoon. She is now completely paralysed, and can barely raise an eyebrow or move her head to indicate 'yes' or 'no' to answer our questions. Communication is virtually impossible. She is horribly miserable, and I am thankful that she will not have this stage prolonged by peg feeds. I feel she made the right decision.
 
Obviously no one can say for sure but I feel that without my peg tube my progression would have been much faster than it has been. I believe that my body has been able to use the energy that was provided to me through my tube and postpone progression. So for me it isn't prolonging a miserable time, it is postponing and I hope even avoiding a miserable time.

I am very sorry for all those who are suffering but I view a peg tube as a life enriching tool more than something to prolong misery. Something to make the days we have left more comfortable
 
Berry
Oh how I wish I could get my wife to see that piont of view. Instead I think she looks at it like it's just one more stupid thing this stupid disease is making her do; one more indignity; one more step towards dependance on someone else for her basic needs.; one more lost battle in this unwinnable war. Sorry for the rant. Have I mentioned lately that I hate ALS?
 
I feel exactly like the people who refuse a feeding tube. I'm not there yet, but this brutal unfeeling disease has sped up alarmingly the past few days. Nothing will surprise me. I had a big rock hard muscle in my right forearm last week--today it feels like a sponge. I can't believe how fast it's moving. But I'm drawing the line at a powerchair. Nothing else. I don't want to make my daughter's life stop longer than I have to. There's no point. I'm almost 67 yrs old with grown up kids and far away grandchildren. Maybe if I had a loving, tolerant spouse and little kids, I'd feel differently. But I hurt all over. Why prolong the agony? No reason in the world.
Good luck to all of you, but I really would respect the views of the ALS patient. They're going through a horrible experience and don't need to be argued with or second-guessed. It's just too hard.
Carol
 
This was one of the hardest decisions I had to accept when my husband refused a feeding tube. I must say I really dreaded what I thought was coming. The last week of his life it was hard for him to eat. The day before he could only eat pudding or pie. He could have very well aspirated on these. The thing was, LB, never felt hungry and for that I felt both of us were blessed. If I had it to do over again knowing what I know now, I would ask him to consider the peg for meds. If he refused........I could go the same route again that we did.

Knowing what to do is impossible. What you do is what is right at the time and now is all you have.

Take care.

terri
 
I have a feeding tube but I am bulbar and only have bulbar symptoms. I have a very slight weakness in my left hand but wouldn't even notice it if I didn't know what it was. I feel I have a long time before it takes over my whole body and like others I can't imagine losing all ability to move. I don't want others to have to take care of me and have made arrangements with both my daughters that when I say enough then the tube feeding stops and hopefully it would not take long after that. Everyone has to make their own decision on what they can and cannot live with. I have requested Hospice at the end and I know they will make me as comfortable as possible. We have to respect the decisions others make and find a way to live with it. It doesn't mean they don't love you, it may mean they love you too much to have you have to see them go through what this disease does to us.
 
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