pgatto
New member
- Joined
- Oct 18, 2012
- Messages
- 8
- Reason
- Loved one DX
- Diagnosis
- 10/2010
- Country
- US
- State
- il
- City
- chicago
Hello. This is my second post. Thanks everyone so much for all your input, info, and help on the first one. My 74 year mother was diagnosed with ALS about 3 years ago. Since that time, she has completely lost the use of her legs. About 4 months ago, she was admitted to the hospital because of breathing difficulties. She was released to a nursing facility right before Christmas, but ended up back in the ICU 2 weeks later and has remained in the hospital since. She's is now on a bi-pap 24/7 and being fed via tube through her nose. She is able to eat pureed food, but has little or no appetite most of the time. She also has a stage 4 pressure sore on her back that is not healing. She's never had an actual physician continuously following her during her stay at the hospital. The hospital, Northwestern Memorial in Chicago, applies the "team" approach to the care of inpatients like her. Meaning she gets a new team of residents every week or so. None of which have any significant experience with ALS patients. They have given her too large of doses of anti-psych meds such as haldol and risperdal that have sent into days of unconsciousness and tremors. According to them, Valium was not an option because they felt it would have interfered with her ability to breath. Recently, they have really been pushing the idea of giving her a tracheostomy. My mother is un-married and has no other family members except my sister and me, who are also un-married. We have had numerous meetings with the residents of the week who feel strongly about giving her a trach. They have been very persistent and almost insistent. All of us are very confused and upset. At this point, we are having a time figuring out if this the best thing we could do for the best quality of life for her. Thanks again for the help and support. Paula