My Dad went to the hospital with pneumonia and the next day he was sedated and placed on the ventilator. They waited about 2 weeks before they did the tracheotomy. Now they took him off the sedation and moved him to a select specialty hospital that specializes in the weaning process. Our family has a few concerns, the facility doesn't seem to have much concern or compassion about his situation. We have been trying to find another facility in AZ that will accept a ventilated patient. It took then over 30 min to come into the room to clean his bed after he made a bowel movement, even with my sister and I going up to the nurses station every 10 min to remind them he needed to be cleaned. He has also been there two days and they have not moved him once from the bed. We have asked to put him in a chair and they keep telling us later, at least at the hospital they put him in a chair so he felt more normal,. He is a very active man and never sat down, even to watch T.V. .My father also seems very depressed , yesterday he kept trying to say help me, and let me out. We know he doesn't want to be there and all we keep saying is its only going to be a little while longer before they let you out. I have asked if they can put him on something for anxiety/depression and all they keep telling me is they will ask the doctor when he comes. He was so upset yesterday when we left we ended up being there for over 10 hours just to comfort him and make sure he was ok. He was still crying when we left. I am not sure what to do to comfort him, his muscles and not strong enough for him to hold a pen to tell us what he needs he just tries to talk and finds he can't then he get upset all over again.
Immediately have a face-to-face with the Case Manager and all of his doctors concerning the sub-standard quality of care his is receiving. DOCUMENT your issues and observations and WHO you spoke with. Who is his health care surrogate? Meaning who in the family is assigned to make decisions for him? ASK for a "picture board" that has the alphabet on it and pictures so he can point/spell out what he is trying to say. Ask to get a hoyer lift so people can help put him in his chair/move him more easily. Ask the doctors if a catheter or rectal tube or diaper/padding can be ordered/used. Ask the docs for xanax PLUS an anti-depressant. GET HEAVILY INVOLVED/ACTIVE IN HIS CASE VS. JUST WATCHING THIS HAPPEN TO HIM. You are his only advocate at this time so be vocal!
I am also in Az...my husband has ALS and was admitted to hosp. because of pneumonia 6 weeks ago. He is now in a subacute care center in Scottsdale, Kendrid of Arizona. It is exccellent and has been there 3 weeks. He can't get off vent for more than 2 or so hours so am tring to take him home but live in Payson and there is no one in Payson that does vent!! If your Dad is in a Select Facililty I would move him, I visited one of those and was very depressed..did not let him go there. The facility is pretty, clean and very competent help. the number is 480 391 4040. Go luck.