New member...looking for basic info

[maryliz]

Hello,
My mother in law was disagnosed with ALS last April. Throughout the year prior to that she first had started to have problems with her right leg. When she would walk (she loved to walk around the neighborhood) she said it felt like there was a "catch" in it, and it was just hard to get that leg to keep up. This progressively worsened and eventually she needed a walker to get around, due to frequent falls. Shortly after diagnosis, she had to be moved to an electric wheelchair, even with her walker she was still having falls. The fingers on her right hand started to curl up, they put her in therapy for it, but it did not help it. Her speech has gradually gotten worse and worse.
It has been almost a year. She is now completely confined to her wheelchair or hospital bed at all times. Last week she got her feeding tube. She was getting choked quite often and had just completely lost her appetite, and lost A LOT of weight.

Now for the info I need---
Her feeding tube...she gets Ensure through it, during the night while she is asleep, 1500 calories worth I think it is. Should we be adding something to this? I read some posts about supplements..?
She JUST THIS WEEK got approved for home health care. They are now coming out 3 times a week to change her sheets and bathe her. I feel like they should be doing more, my father in law can barely get around, he has degenerative spine disease and things are hard for him.
What should we expect next...? Don't try to sugar coat it for me, I want to know, I need to prepare my husband and our children. I have lost both of my parents, I know how this will hurt, I want to help them as much as I can.
She is barely able to cough, and some days her speech are worse than others. Is there something they shouls ask about to help with her choking/saliva? Are they supposed to check her lung capacity at appointments to know if she needs oxygen?

Thanks so much.
I am sure you will be seeing me comment and ask question all over the place now that I have found this forum.

Mary

 

[Al]

Hello Mary. Sorry about your mother in law. Can we ask where you are located? It helps as things differ from state to state and provinces. Is she going to an ALS Clinic for her appointments? At a clinic they usually check lung capacity to see if she needs a cough assist machine or Bipap to help her breathe at night. They can give her meds to help dry up the saliva. I'm not on a feeding tube but others are here so they might give advice about supplements. Home care depends on where you are and what insurance is available. Ask what you need to know. Welcome.
AL.