Need advice on helping pt with advanced ALS

[Lisky90]

I work in an LTAC. Just about a month ago, a 40yo woman with ALS was admitted. She is in the advanced stages of ALS - tube feeds, on a vent, controls her call light by turning her head. She can mouth words but I know that in time she will loose this ability as well. She was only dx'd with this disease last November. A year ago she was hiking with her husband and children...it is one of the fastest progressing cases anyone in this area has ever heard of...thus we know her ability to communicate is going to be lost soon. Which brings up my point...her family. She has two young children, ages 9 and 12. She was a very devoted mom...on the PTO, at every game and practice. Now she lays in bed, missing everything they do. They live quite a distance from the hospital, so she only gets to see her kids once a week...sometimes less. They were in yesterday and it seemed as if they try to cram a whole weeks worth of their lives into a 30 minute visit...interrupted by suctioning, and the staff doting over her kids - watching her daughter's DVD of her recent skating competition...which is really nice, the kids are showered with attention, and this pts face is beaming with pride over sharing her kids accomplishments...but her time now with her kids is limited...there may be things she wants to say to her preteen daughter - values she wants to share; a 12yo girls needs a mom to talk to; her 9yo son seems very sad and surely wants his mom to himslef. She is absolutely overwhelmed by these visits - during them and especially when they are over...she is diaphoretic, in tremendous pain, increased secretions from crying when they leave. This is just so sad. I'm thinking it would be beneficial for her and the kids to help her start a journal - that the staff or her husband keeps...to go back and forth to the kids. Her husband is already overwhelmed, and he tries soooooo hard already, I don't know if that would only increase his feelings of obligation. I was thinking of an eyecontrolled computer, or getting a card to help her write messages to her children...while she can still mouth words. I am off for the next three days and so far have spent today, my first of the three days researching ALS for communication during the advanced stages. So, I'm hoping that someone here might have some ideas, or knowledge of resources regarding this issue. Also, I wonder if there are other needs that could be addressed that I may not have thought of. Any advice/ideas would be appreciated.

[thewobbles]

did you try alsa and your local muscular dystrophy association?