Looking for some advice - I have been caring for a beautiful and wonderful gal who has Down syndrome for over 6 years. She was not doing well and we found out we had been exposed to Covid-19 so we went to the hospital in Neligh at the beginning of December. We both tested positive and were admitted. Being her the person who has been with her 24/7 for the past 6 years I know everything about her, how to help her eat, drink, you name it. She was being assisted with eating by hospital staff who were just trying to do their jobs but she aspirated, they determined she was unable to safely eat and put her on hospice - confused about how she could be put on hospice without some form of terminal illness? They stopped her IV fluids and stopped feeding her and allowing her to drink. They have since moved her to a nursing home. I was told she was in her "final hours" the week before Christmas. Here we are days after the New Year and she is still here with us. I had been trying to feed her and give her drinks because she was not aspirating with me because I know her and know how to feed her and how to help her. When it was discovered that I was helping her to eat and drink my visiting hours to the nursing home to see her were cut down to 1 hour a day. I am just trying to advocate for this person who came into my life 6 years ago. She's a sweet and amazing person and I hate to see her go through this. She is not ready to pass - I have tried contacting APS, disability rights, various attorneys and I'm getting nowhere! It is breaking my heart watching her go through this, starving and there is nothing I can do about it. There has to be someone out there who knows what else I can try, or who could help. Someone please, before it's too late.
You're viewing a single comment thread. View all comments, or full comment thread.
Comments (21)
sorted by:
I used to be a feeding therapist in nursing homes. You need to get ahold of her doctor to get her tested. Her doctor would need to write s script for this evaluation to take place. She may be aspirating there bc the aides maybe drowning her when she can only handle one sip at a time or they may need to thicken her fluids. One way or another she needs a feeding evaluation by a qualified Speech-Language Pathologist or an Occupational therapist. (Both disciplines do these evals). They determine what she is safe to eat or drink and if her liquids need to be thickened and how much. And they also test the consistency of her food and what she can handle without choking. Every facility should have one of these therapists available. The major problem after an eval is that not all nursing home staff will take the time to adopt the new eating protocols. That is up to the head nurse who gives her care to not only make sure the aides feed her correctly but to make sure that dietary changes the food she is allowed to have. It is dietary that needs to provide the correct kind of liquids and foods for her to eat at every meal.