- Apr 10, 2021
- Loved one DX
My beloved sister in love Jill was diagnosed a few months after a neck surgery at 57. She progressed quickly. Heard might be the general anesthesia that sped it up. She was having random strange things before surgery but thought from disc problems in neck. Diagnosed Dec 2020. Now on hospice April 2021. Constant problems with NIV mask leaking and now breaking down nose skin. They added oxygen too and number changes daily. Can't have mask off but for a minute. The formula she was on tortured her stomach so praise God we found realfood for her Joey and Peggy as we call them. We've had almost no support from her Chas hosp. The home health company then palliative co then hospice co has been a God send. So has my church. I am new to this and have so much to say but not sure limits. Prayers requested first. Ok, what mask make and model has worked best for others? She can't potty in bed in or on anything including purewick which was a bear to get.. Any suggestions other than cath? Tried the standards, running water, hands in water, massage, etc. If she wasn't in pain she'd be up in her wheelchair. On gammit of hospice meds but moving hurts her badly. She has a great attitude, is a believer and we want her to have the best care but are struggling to figure out how to help her better. Our prayers are with everyone with this mean disease and caregivers.