To tube, or not to tube (feeding tube pros and cons)

[nspoc]

Hi again Mary Jo -

I guess I can only agree with Al.

Everything you say is so right - ultimately it is his decision about his own care. And you are so right that things are better with hospice there to help you rather than handling him all alone.

Still - there must be a special place for you in the hereafter. I will be sending good thoughts your way. Take care - Beth

 

[hearts_and_thoughts]

Beth: Thank you for your thoughts about the hereafter....that is what is MOST important to me. In these difficult times, when I feel I am not the Christian that I so desire to be...showing love, peacefulness, joy, patience, kindness...etc...and showing the anger and frustration toward God and my brother in place of that...I so dearly appreciate it from the bottom of my heart and depths of my soul.

Thank you!
Mary Jo

Somebody once told me..."God works in mysterious ways". Well, I've heard that more than once!

 

[CindyM]

I hoipe today is going more smoothly for you, Mary Jo. You deserve at least a few good hours every day! Cindy

 

[hearts_and_thoughts]

Today has been difficult already...sorry to say. But, the Amish lady is here until 6 and I'm going to bed. Thank you for your thoughts Cindy. So, how did you become a moderator? I truly feel blessed for finding this forum. It helps me through the days.

 

[CindyM]

My journey with this board started when my local docs (3 of them!) all suspected I had ALS and sent me to a major clinic for a 2nd opinion. I did not know what the disease was, and in looking it up, came here. Folks like Al and MT calmed me down, pointing out that local docs often do not know the disease very well, and if an ALS clinic confirmed it, then I would be among very good company.

SO far the clinic is holding off, (knock wood.) But I told AL and David that I would stick around for as long as I am needed. Most days I feel like the volunteer I am, but other days, like today, I feel like a PAL waiting to happen. Oh well- every day can't be a good day!

Thanks for asking.

 

[hearts_and_thoughts]

Where in New England? My sister went to Boston for her DX. She was living on base in Japan when she started having symptoms. By the time she came back to the states, she had lost total use of her left arm. A Boston neurologist diagnosed her. At the time, she stayed with my eldest sister who lived in Amherst, NH. However, my eldest sister now lives in Newport, RI. Her daughter lives in Providence, RI and her son lives in Simsbury, CT.

I just said a prayer that you will not be diagnosed with ALS and I sincerely hope that to be true. You seem like a very caring and intelligent person.

God Bless You for all you do....

Mary Jo

 

[ZenArcher]

Every morning you wake up is the start of a good day. Its how you deal with what happens throughout the day that decides how the day ends. To paraphrase quadbliss (Mike) via Adam Savage from MythBusters, "I reject your reality and substitute my own"

 

[MtPockets]

I wish the best for all those here and peace for your journey.

For those who might want to look at a Thread dealing with spiritual topics please do a search for the title on the threads with the search link above,
Encouragement for Hurting Christians

and also the new thread called

CHRISTIANS HERE TO HELP YOU AND TALK

I do not wish to offend anyone and their beliefs. Each of us has to face this walk with our own way of handling things. If you have questions of a spiritual nature and would like to discuss them with a Christian, please feel free to ask them on the above thread where other Christians may answer you as well as me, or e-mail me at [email protected]

My Teacher told me, "Above all things, to be at peace with all men, if possible." This is all I try to do in my own awkward way.

For the benefit of the newbies on the forum. I am a grandfather to 17 grandkids and have 4 children. I am currently 61 years old, and I have a lifetime of experiences, varied like you would not believe, including being Dx with ALS May 11, 2006.

I am currently confined to a wheelchair and I am in the process of losing my ability to use my hands and upper body movement.

If you are sick, I've been there.
If you are rich, I've been there.
If you are poor, I've been there.
If you feel hopeless, I've been there.
If you are mad, I've been there.
If you are sad, I've been there.
If you feel you are facing this all alone, I've been there.
I've been up, down, in, out, crazy, sane, you name it I and I can claim it.

So you see I can identify with most of you and what you are going through.
Now if none of this fits you or your loved ones, happy living and goodbye.

God Bless,
Capt AL

 

[CindyM]

Every morning you wake up is the start of a good day.

Hey Jeff- you are so right. I just re-read some of my posts form last week and was surprised to see how discouraged I was. LOL, I told somebody it must have been jet lag but I really think it was grand-children withdrawal. :-D Anyway, it is nice to be reminded that we make our own reality!

Captain AL- thanks for offering to help with our spiritual needs.

 

[MtPockets]

Thank you so much Cindy.
God Bless
Capt AL

 

[Vicki S]

Feeding Tube

I was one that at the onset I said no feeding tube. I forgot that I wouldn't be able to drink water so that changed my mind. I don't have any problems yet with eating but I told my husband that I had changed my mind about the feeding tube and he told me to put it in writing.

Vicki S

 

[Lorie]

Hi! Vicki

Tim don't want any Life Support, now. I have told my husband all I will take is a Feeding Tube. With the Stomach I have, I may very well have to. Who knows!

Like Mike said: Put it in writing. You can always change your mind on any of it. Taking it or not taking it. I hope that will not be soon for you!


Lorie

 

[Confused and disappointed]

My brother in law was on the feeding tube for some time before he passed away, and also his bi-pap machine both up until the day he passed away which was last Wednesday. My niece wanted him to go peacefully, and even though she had power of attorney, and he had a DNR, he agreed with her on the feeding tube and bi-pap machine. His doctor in Hospice said it would add a few more days or weeks perhaps. Not using it would probably have sped up the process. He died peacefully looking into his beloved daughters eyes. I believe with my whole heart she made the right decision. If you want the feeding tube you should have it, and if you do not then that is your choice, but choices you should have. Do not let the doctors, hospital, hospice, anyone tell you differently. They tried that with my niece but she remained constant in her decision. Do what you feel is best for yourself. Like someone said you can always change your mind.

 

[sherry0459]

OK everyone heres one on the prevent side, my neuro said that I should consider the PEG before I started to have trouble aspriating. I choke multi times daily. So far no fuild has remained in my lungs, (I am able to eventually cough it out). He sees this as preventive, needless to say I am concerned. I, like many of you said I would never have feeding or trac so My mind was made up I thought now I am confused about going ahead with this. What he said made sense. One concern is bloating, diarrhea and other GI problems. Sorry for being blunt. I know the Dr will answer these questions but, I hope someone with personnal experience will help me know what to ask. Any one who has had it please let me know how your GI took it. THANK YOU FOR LISTENING! Sherry

 

[paula-jane]

Sorry Sherry,

I don't have any experience with GI tubes... however, I can confirm that if you make decisions to have tubes or vents or bi pap or anything else to help you, you will need to make your decisions known well ahead of when you need the devices. ALS can be an impatient disease; be prepared for the next thing well ahead of time. I've always said that we were always playing catch up... by the time we got something, we needed something else! You've got to be one step ahead... all the time. I hope someone else responds to your question about how the GI takes the tube.