- Oct 4, 2006
- Lost a loved one
I'm new to this forum. My husband died in February after living with ALS for three years. I've been reading your messages about feeding tubes and vents and the patient's wishes, and that's what is most important. The person must decide for themselves as to what they want. And they should know that they can change their mind at any time and any number of times.
My husband lost so much weight because he was unable to swallow, so he got the feeding tube. It was a minor procedure, about 2 hrs in the clinic and enabled him to get the nutrition and meds he needed. I warmed his Ensure in the microwave before feeding him and he liked it. I just figured everyone likes a hot meal even if it's through a feeding tube!
In October 2004 he went into respiratory failure, his diaphram just quit. He had said he wanted to go on the vent and so that's what we did. He lived another 1 1/2 yrs. He was at home the entire time. Now about the vents. . . they are small and portable, about the size of a laptop computer. They come with a backpack that can be hung on the back of a powerchair, 8 hour batteries, and will require the caregiver to learn how to monitor the readouts. With this setup the patient can be very mobile. We took some trips, went fishing, went to the movies, etc. Basically anywhere we wanted to go. The patient will have a trach and the vent connects to it. The patient must have a 24 hr caregiver/s to be on a vent. They cannot be left alone ever! The cargiver will have to learn basic trach care, cleaning, suctioning, monitoring, etc.
I was not a medical person, but while my husband was still in the hospital after being put on the vent, I insisted they let me do all the procedures so I would be comfortable when we went home. So I learned.
I was told that it takes a very dedicated, special, caregiver to take this on, and that is probably true. I hired an LVN to work with me as a caregiver and trained her in trach care and the vent. It may not be for everbody, but it is possible, and it can extend life.
This message is too long, but the last thing I would like to pass along is that it's important to live your live as normal as possible. With ALS it will be just a 'new normal' every day. Don't get house bound, find a way to get out and do all the things you enjoy. We went to concerts, the mall, church, etc. If we needed to suction, we discretely suctioned. Sometimes people were a little curious, and we would tell them about ALS. I took my husband into the women's restrooms in his powerchair, just opened the door and told anyone in there that he was coming in. We never had an objection from any woman, usually they were offering assistance. So don't let this disease stop you from living. Don't let it win. Use whatever means you have available to keep living your life.
God bless all of you, keep praying for a cure!
Hi Michelle, I have a question I hope you don't mind me asking, I was under the impression that that when a pals went on a vent that they could live indefinately and I see that your husband only lived a year and a half on the vent and that scares me because my husband just went on a vent. I hope I'm not bringing up bad memories by asking you this but what happened to your husband, I've heard some people go off the vents because they just give up and are tired of living that way or that some die of infections but it seems like alot of people live for a very long time with a vent and I was just wondering about what happened to your dear husband and if it's something I can prevent happening in my husband to keep him here with me and our kids. God bless and thank you.