Hewitt
Active member
- Joined
- Dec 8, 2015
- Messages
- 53
- Reason
- Loved one DX
- Country
- US
- State
- NC
- City
- Winston-Salem
Is there anyone from the Boston area who can recommend a home healthcare agency that can help my sister? She was diagnosed with bulbar ALS in December, and I am seeing her for the first time since then this week. I am utterly shocked at the change - she can barely walk and falls frequently, can barely speak, is incontinent, eats only with the greatest difficulty (and chokes and regurgitates) so that every meal takes hours, and she is confused and obsessed with OCD routines that make any effort to help her like herding cats. It is utterly heartbreaking, but I am also extremely concerned for the health and well-being of her husband and children. She cannot be counted on to stay in bed at night, and this morning I found her on the floor, soaked, and she had apparently been there for most of the night. Her family has been soldiering on as best they can, but her husband has had a serious bout with cancer this year, and he cannot handle this level of caregiving without dire consequences to his own health, I fear. I live far away, but I thought if I could get some recommendations for capable caregivers in the area it might help. I know rates of progression are extremely variable, but is this sort of rapid change often seen? Thanks for any advice--