Information needed, PLEASE!

[dukesnider]

My wife has ALS. She has had it for 18 months. She has a very rapid progression. At this point, she is confined to a wheelchair to move around the house, she only gets out of bed to use the bathroom or shower ( which i have to help her with both) she can't speak anymore, she can't swallow neither. On thursday we are going to the G.I. doctors to schedule the placement of a feeding tube. I sure could use some encouragement about the use of the tube since I will be the one feeding her. For those of you that don't know me, please read my threads so you can understand where I am at then please, I AM ALL EARS !. My wife's progression scares me because I know her time is rapidly approaching and hope this feeding tube isn't too little too late. She is aware how far she has progressed in such a short time. She has started to say a prayer every night from her prayer cards and is constantly reminiscing about when she was a child. She has a DYNAVOX to speak for her. To take her meds, she forcefully shoves them down her throat with her finger. I can't wait to get the tube inserted but I am having some anxieties about the care and use. Help me please. This community has always been supporting and informative. I need you guys. Thanks. Dukesnider

 

[Al]

Hey Duke. Don't worry, you'll do fine. There is quite a bit of information already here under PEG tubes, feeding tubes etc. They should also show you how things work at the hospital or have home care come out to show you.
AL.

 

[andyvaughn]

Duke, like Al said, the feeding tube is way more scary in thought than in actuality. My husband doesn't have one, at least not yet, but I am an registered nurse and have worked with plenty of them. Every person that I have talked to with ALS is so glad they got the feeding tube, it saves them the energy of trying to eat, and they get energy because they are being properly nourished. I strongly encourage you to get involved with training at the hospital as soon as the tube is placed, have the nurses go over it with you until you feel comfortable - then, like Al said, ask them to send a home care nurse for the first few times, until you feel comfortable. It is not nearly as scary or as complicated as it sounds. You may however, want to take notes, so that if you get scared when doing it the first time alone, you have your notes of step by step process to go through.
I am sorry to hear of your wifes decline, I hope that she feels better when she is able to get some more calories in her body.
Wishing you the best
Andrea, wife of Pals Jim.

 

[Paty]

Hi Duke

Hi DUKE:

I agree with andyvaughn; I took care of my husband at home for two yrs, but he never
agreed with the PEG, the last week before we had to go to the hospital, where we spent
six month's until his death on Dec. 30,2008.

The reason we had to go to the hospital was that he could no longer breath, nor could swallow, at the beginning he didn't want a traqueostomy performed, but got so scared that he asked my son (he's a doctor) to perform the traqueo and the PEG.

At first it wasn't easy for me to feed him through the PEG tube, after awhile I did all the three feedings myself, (even the medicine that was crushed) I gave it to him, I also learned to suction him, and once that the vent failed and
I was alone at the hospital room for him, could use the ambu to help him breath while
the tech, came in to change the vent machine.

I practically lived with him at the hospital those six month's, went home only on sundays
for eight hours.

Well I wish this is help to you; I suppose your wife's ALS is the Bulbar type, my husband's was the limb onset.

May God bless you both.

Paty
Baja California, Mexico

Cals to late husband Jorge
Dx. 10/2005 - Died 12/30/07

 

[nspoc]

Hi Duke -

I was really stressed at the thought of caring for my friend's feeding tube - but it turned out to be no problem! Just follow the directions they give you. We ran about 2 cans of formula in at a time over about an hour or longer. We never had any stomache upsets - but if you do I hear it is good to start with half formula and half water.

We never had any infections. It became routine very quickly. After a few months Pat gained so much weight and energy from better nutrition that she no longer needed the tube. She could always eat - but had no appetite. It has been 1 1/2 years since we used the tube. But it is there for when we need it again.

I am not suggesting your wife will stop needing the tube - just that our experience is that the extra nutrition was VERY helpful.

I think you will find that feeding her by tube will be a much more relaxed event for her and for you. No more worry about choking, she can be effectively hydrated, meals will not be exhausting and drawn out affairs. We would just hang the bag and watch TV together - or she would be on her computer.

Also - it does not change what your wife can do. PALS go swimming. My friend takes baths in a tub, showering is no problem at all. Some PALS actually have a cocktail or beer through their tube.

One thing I advise is to use the bag and IV pole set-up. Some people are just fine with bolus feeding (with a syringe) but there is some research that suggests bolus feeding can impair breathing. Of course - whatever is most comfortable for you and your wife it the best thing.

Bottom line - I was terrified. But of all the procedures I have learned this was the least trouble.

Good luck and let us know how you are doing! Beth