I do not mean to demean any of you who are drs. I respect each and every one of you but in the last 2 months my dh has been through hell because no one would listen to me or my Yale drs that have treated dh for dementia. I guess my biggest complaint is with the "system". I have written before about how dh got involved with the VA because I knew the day would come that we would need nh care. Fine. I followed "the rules" till I found that the rules really are not meant to be followed. Sorry. I guess I had to get that out of my system.
After much work and aggrivation, I finally got dh placed 10 minutes from my home. Great. Everything was working out well. He had begun to adjust well to the new voices and a new routine. He had started pt to see if he could strengthen his muscles so he might be able to walk again. Fine. Last week I had my care plan meeting. I told them that I felt dh was flourishing well here. He is eating and appears well cared for. We had a few problems but the staff responded quickly to his needs. I also said that I wanted to make certain that the aides were made aware of my confidence in their ability to care for dh as he can be a handful especially with personal care. Well, you know exactly what happened. That all came back to bite me. The next day, the nurse supervisor called to tell me they were moving dh to a high bed because he had begun to walk off the lowbed onto the mats and the were concerned that he might be hurt. I questioned how much safer being in the high bed would be because he might try to get up and fall from higher up. Either way, they still would have to worry about falling but the high bed room was very close to the nurses station and they would be able to hear the alarm if he got up. Ok. Fine. That was Friday am. Friday evening, they called me to say dh has been agitated and they were changing his am meds to 6 am so they would kick in so he'd be calm for the morning dressing. The next day, I noticed he was agitated right after lunch and I knew this change had been too much. He was 3 weeks in his low bed. When they moved him, he had to adjust to a high bed, a roommate (who,by the way is lovely),and new aides because they put him in a different wing. Also his nurses changed and to top it all off, they changed his meds schedule. So guess what happened. The day supervisor called me yesterday and said dh had to go outside the facility to have meds adjusted!!! I wanted to scream!! I told her I was already on my way in. When I got there, she told me she called the VA and they had not called back. I fed him and then took him outside for some sun and fresh air. 45 minutes later his aide came looking for him. Said the super wanted to see me. When I got up stairs, they took dh to his room and she told me VA told her to take him to the nearest hosp. I was very upset. This is a scene we have had to deal with 3 times this year and it never gets better. When I went into his room. he was on his bed with an aide sitting on either side of him, one in a chair facing the bed and the nurse standing over all of this. He was upset and overwhelmed. I sure he felt attacked. When I went in, I went near his bed and they left. He quieted down and was ok till the ambulance drivers came in. They took him to a shoreline clinic which is an auxillary er to Middlesex Hosp. I had never been there before. Anyway, they were quite good with him. He was fine when I was there. Because this is a very small community, there were very few people in the er. The Dr came in and spoke to me. I told him the background and the recent changes. I also told him that I had him home with me till April and had him on a dirrerent meds schedule than all these new drs had placed him on. I told him dh was at Yale for 8 years and that is the schedule we finally found worked. He did some labs and decided to ACTUALLY PUT HIM BACK ON HIS OLD SCHEDULE THAT I WAS USING!!!! Thank God. A dr with a brain. I do not know whether this will work at this point but it gives him some seroquel in the afternoon which makes him much easier to handle. When the er called nh, they were not happy. THey wanted dh to go to a psych unit and be admitted. Er doc said he felt that was not necessary and wanted to give this new schedule a try. They relented and agreed to take him back. I am so tired of my poor dh going through all these changes. I am going to dress now and go to nh. I called earlier and left a message that I wanted a meeting. I have not heard back. I'm certain they are trying to anticipate what I will say so I'll not keep them in suspense. I'll write later to update.

Thanks

Actually had the meeting yesterday. The director, admissions, head nurse, social worker and nurse coordinator were there. They immediately apologized. I really think this was one of those rare situations that easch small step did not consider the impact it would have on dh when all small pieces were added up. They listened very well. They were going to try to get the VA to pay for the inhouse psychiatrist that will be overseeing him. Originally, the VA refused and mandated he go to the VA. They also are trying to work up a better solution for his wheelchair because he tends to lean over to one side and drop his arm down then getting his hand and arm bruised when they get caught in the wheel. If pt tries to adapt the chair and fail, they are going to get him a customed wheelchair. He is very sedated but I want to get this dose stabalized and then after a week or so, I'll have a consult with the psychiatrist to see if we can reduce his seroquel- slowly. Things are better today so I'm hopeful.