Review
Before the move from the hospital I had been very concerned that the scheduled three month review of her needs was too far off and a lot could happen in that time. I was clear in my own mind that she need one to one care all the time and the possible emotional and psychological damage of not having it for the all-important settling in period weighed heavily on my mind.
The consultant, Dr Evans, offered to come and conduct an informal review after two weeks - an offer I immediately accepted.
As the days passed I observed Rosemarie and the staff closely, had lots of meetings with the Care Home Manager, and generally tried to get my thoughts in order. I had stopped keeping a daily log of events (which I now regret) but the broad areas of my concern were clear to me.
Firstly, Rosemarie is extremely vulnerable emotionally. She is labile, and has difficulty distinguishing the present from the past, and thoughts from reality. She can easily think herself into a condition of great distress, and the worse it gets the less she is able to deal with it. It can be brought on by anything - loud voices around her, loud unexpected noises (chairs scraping on the floor, cupboard doors slamming) or just a general high level of background noise. Her reaction usually is to startle, look around her in a frightened way, and start to whimper. If she is not calmed down she will go straight into her head and start to work herself up. This can even happen if I am trying to calm her. Her total inability to communicate what is upsetting her means that anyone who is with her needs to be aware of what may have caused it to have any chance of being able to reassure her. As the panic progresses she becomes more rigid and her eyes glaze over. From a distance she looks like she is daydreaming and it is not until you try to interact with her that the tears flow and the distress becomes evident.
Secondly, there are the other residents to deal with. My initial hope was that Rosemarie would strike up relationships with at least some of the residents and have someone to spend time with. This has not really turned out the be the case. In general the general level of dementia is much more advanced than in the Day Centre she used to attend, and the behaviour of most of the residents is frightening to her. There are a couple who speak loudly and incomprehensibly in very high pitched voices that can be very irritating. Others shuffle around talking quietly to themselves but not really responding to any attempts to communicate. There are a couple of Wanderers who spend their time walking endlessly up and down the corridors, often into other residents' rooms. They will often walk right up to Rosemarie (maybe choosing her because she is new), invade her personal space and just stand there. I am afraid it really is like something out of a zombie movie. Rosemarie no longer has the confidence to handle these situations, and gets frightened very easily.
Thirdly there is the night time. In general the staff try to get the residents into bed after supper (about 6-6.30) and this means Rosemarie is in bed alone for a long time before she is likely to fall asleep. Even if I stay till 8 o'clock there is still at least a couple of hours when she is on her own before there is the chance of sleeping. The wanderers cannot be contained in their rooms and a number of times I have been sitting with Rosemarie when the door opens and one of them come shuffling in, moving towards the bed or one of the spare armchairs. This is naturally very distressing for Rosemarie. How often it happens when I am not there I do not know, and how she responds to it when she is on her own I can only imagine. She is not capable of calling out for help or using the distress button. I have raised this with the Nurse but was assured that nobody ever went into Rosemarie's room. I told them it had happened while I was there. They said it didn't happen when I wasn't there. I asked how they knew. They couldn't tell me.
They check all the rooms once an hour. That is not actually very often. Rosemarie could easily get upset about something, get herself very distressed, and cry herself to exhaustion and apparent calmness in that time. Two sequential visits would show her apparently placid in bed. Talking to the nurses I discovered that they often find her distressed when they check her, and although they say they try to calm her, common sense suggests that they cannot spend too long with her or they would not complete the round.
All these concerns would be addressed by having skilled one to one care.
Dr Evans was too busy to make the two week appointment but managed to come the following week, on Tuesday 6th. She sat and read through all Rosemarie's notes and then came and spent a few minutes with Rosemarie, who was then taken back to the lounge so Dr Evans and I could talk.
She understood my concerns but said that I needed to give time for Rosemarie to settle in, and experience suggested that three months was a reasonable time frame. I couldn't see this and said so. I did not think the current arrangements were addressing her needs and I could not see her needs changing in that timeframe. Dr Evans was sympathetic but I got the clear impression that trying to push for a change before the scheduled review would be a waste of time, unless I was suggesting that the situation was critical and Rosemarie needed to be moved to another place. I did not want that, and reluctantly took her advice.
A week later the Community Mental Health Team Psychiatrist came to do her review. I reiterated my concerns but basically got the same answer: give it time. I would like to think this is experience speaking and I am being over-sensitive, but I have been living with Rosemarie's deteriorating condition for nearly three years on a daily basis and would trust my own judgement over that of someone who has had maybe a total of an hour or so of contact with her in a very restricted range of conditions.
All I could think of doing is working with the Care Home to collect enough data to make an unarguable case when the review finally occurs. This is theoretically a good idea but realistically the Care Home is not going to be interested in collecting data that shows they are failing to care for Rosemarie.
This job just keeps on getting bigger.
The consultant, Dr Evans, offered to come and conduct an informal review after two weeks - an offer I immediately accepted.
As the days passed I observed Rosemarie and the staff closely, had lots of meetings with the Care Home Manager, and generally tried to get my thoughts in order. I had stopped keeping a daily log of events (which I now regret) but the broad areas of my concern were clear to me.
Firstly, Rosemarie is extremely vulnerable emotionally. She is labile, and has difficulty distinguishing the present from the past, and thoughts from reality. She can easily think herself into a condition of great distress, and the worse it gets the less she is able to deal with it. It can be brought on by anything - loud voices around her, loud unexpected noises (chairs scraping on the floor, cupboard doors slamming) or just a general high level of background noise. Her reaction usually is to startle, look around her in a frightened way, and start to whimper. If she is not calmed down she will go straight into her head and start to work herself up. This can even happen if I am trying to calm her. Her total inability to communicate what is upsetting her means that anyone who is with her needs to be aware of what may have caused it to have any chance of being able to reassure her. As the panic progresses she becomes more rigid and her eyes glaze over. From a distance she looks like she is daydreaming and it is not until you try to interact with her that the tears flow and the distress becomes evident.
Secondly, there are the other residents to deal with. My initial hope was that Rosemarie would strike up relationships with at least some of the residents and have someone to spend time with. This has not really turned out the be the case. In general the general level of dementia is much more advanced than in the Day Centre she used to attend, and the behaviour of most of the residents is frightening to her. There are a couple who speak loudly and incomprehensibly in very high pitched voices that can be very irritating. Others shuffle around talking quietly to themselves but not really responding to any attempts to communicate. There are a couple of Wanderers who spend their time walking endlessly up and down the corridors, often into other residents' rooms. They will often walk right up to Rosemarie (maybe choosing her because she is new), invade her personal space and just stand there. I am afraid it really is like something out of a zombie movie. Rosemarie no longer has the confidence to handle these situations, and gets frightened very easily.
Thirdly there is the night time. In general the staff try to get the residents into bed after supper (about 6-6.30) and this means Rosemarie is in bed alone for a long time before she is likely to fall asleep. Even if I stay till 8 o'clock there is still at least a couple of hours when she is on her own before there is the chance of sleeping. The wanderers cannot be contained in their rooms and a number of times I have been sitting with Rosemarie when the door opens and one of them come shuffling in, moving towards the bed or one of the spare armchairs. This is naturally very distressing for Rosemarie. How often it happens when I am not there I do not know, and how she responds to it when she is on her own I can only imagine. She is not capable of calling out for help or using the distress button. I have raised this with the Nurse but was assured that nobody ever went into Rosemarie's room. I told them it had happened while I was there. They said it didn't happen when I wasn't there. I asked how they knew. They couldn't tell me.
They check all the rooms once an hour. That is not actually very often. Rosemarie could easily get upset about something, get herself very distressed, and cry herself to exhaustion and apparent calmness in that time. Two sequential visits would show her apparently placid in bed. Talking to the nurses I discovered that they often find her distressed when they check her, and although they say they try to calm her, common sense suggests that they cannot spend too long with her or they would not complete the round.
All these concerns would be addressed by having skilled one to one care.
Dr Evans was too busy to make the two week appointment but managed to come the following week, on Tuesday 6th. She sat and read through all Rosemarie's notes and then came and spent a few minutes with Rosemarie, who was then taken back to the lounge so Dr Evans and I could talk.
She understood my concerns but said that I needed to give time for Rosemarie to settle in, and experience suggested that three months was a reasonable time frame. I couldn't see this and said so. I did not think the current arrangements were addressing her needs and I could not see her needs changing in that timeframe. Dr Evans was sympathetic but I got the clear impression that trying to push for a change before the scheduled review would be a waste of time, unless I was suggesting that the situation was critical and Rosemarie needed to be moved to another place. I did not want that, and reluctantly took her advice.
A week later the Community Mental Health Team Psychiatrist came to do her review. I reiterated my concerns but basically got the same answer: give it time. I would like to think this is experience speaking and I am being over-sensitive, but I have been living with Rosemarie's deteriorating condition for nearly three years on a daily basis and would trust my own judgement over that of someone who has had maybe a total of an hour or so of contact with her in a very restricted range of conditions.
All I could think of doing is working with the Care Home to collect enough data to make an unarguable case when the review finally occurs. This is theoretically a good idea but realistically the Care Home is not going to be interested in collecting data that shows they are failing to care for Rosemarie.
This job just keeps on getting bigger.
posted by Other Kosh at 8:38 pm
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