Nick's primary doctor, Neuropsychiatrist , who cared for him and our family died on March 25 th. He was 60 and I had no idea that he was ill, if he got Covid, perhaps a heart attack. No information. He came to see Nick in the home for a check upon how things were going in Feb. I was not aware of anything. He was our doctor for about 12 years of the journey. I never had to call him for an emergency or anything until Nick went into care......then there were a number of occasions in the last six months where I had to contact him after hours or on the weekend. As he had known me so many years , he responded immediately to my urgent requests, as I had never bothered him in the past.
I decided not to seek a new doctor but to use the psychiatrist who is used by the nursing home. As Nick no longer speaks, it is about meds. Wel,l anyway, the"some" staff reported that Nick has been having hallucinations and was aggressive when they dressed him and at other various times. So, we were (my daughter, who is an MD. and I ) were asked by the new psychiatrist to use a medication Seroquel. This had been tried during the disastrous transition to institutionalized living in the autumn. But the home were using so many drugs at that time, it could not determined which was giving him the side effects. It really took 6 months to stabilize him after the withdrawal of all that experimentation, and the return to Dipperon.
So, they asked if they could try using Seroquel again. We agreed to trust their opinion and go with a 12.5 dosage in the morning. After six days (on Thursday) I noticed the return of side effects. I asked the staff to note the side effect in the notes on Thursday evening when I came to feed him. (It ended up being any augment with one of the staff, who I do not like-in German which is always more difficult for me) I came in early on Friday morning, and met with the head of nursing for the dementia floor who agreed with me that she could see the side effects returning and she needed to get the doctor's order to halt the medication. Already since Thursday evening it had moved from an involuntary seizing of the neck muscles to seized arm and claw hand. I was left with the impression she would do this before the weekend. I called Friday afternoon to check. Unfortunately, it had not been cancelled and thus followed hours of frustrating attempts to reach the new psychiatrist , our GP- requesting the nursing staff contact someone in their administration for help (the nurses on at that time said there was no one to contact as it was the weekend!!!!!!!!!) In the end, I reached my daughter who was able to get the on call emergency psychiatrist to give a halt order for the weekend.
I will now have to deal with the" fallout of making a fuss", and over-riding instructions. The home was already questioning if they want to keep Nick in the facility. (When I spoke to the head of the floor she said they had written the psychiatrist about possibility of sectioning him to the mental institution. I asked what this would do as , he cannot speak and how would that help this situation as he cannot change to another facility and expect it to help him in any way. He is not coping with change and I thought he was doing much better in the home and getting more settled)
This was all a big surprise to me. As when I am with him although much diminished and not perfect he has been responsive and eating welll (a few months ago he was not eating at all) I was really taken aback by this information that they were considering sectioning him.
In the meeting, I expressed my astonishment that a nurse (not the head nurse ) would suggest this to the psychiatrist without discussing it with my daughter or I first, he idea of sectioning him to a hospital. I said the home advertises as having specialized Alzheimer's /Dementia care, and aggression can be part of the disease. (I am self paying) The head nurse, who often cares for Nicky personally admitted that she is able to handle him and needed to discuss it with her team & the psychiatrist again about how best to handle the situation. I told her I would need time if I must find another solution-either bringing him back home or moving him to another facility. But that I did not agree to section him!!!!
I will go in this morning and observe and help if I can, I have told them that if he is aggressive I do not care if he is cleaned and shaved etc. It is better to wait until he is calm rather than a fight with him. Isn't that just standard care of Alzheimers "Contented Dementia"??? I do not think these people care about that they only seem to want the docile patients not the one who is sometimes challenging.
They know that I am well connected in the Alzheimer's community, the medical community and the local government. So, I don't think they will let it go that far.
So that is it. Nothing is ever over in the long slow drip Chinese torture. For poor Nicky or for me.
