The Judas game

When Rosemarie was in hospital her disorientation and confusion were put down in part to delirium and we were convinced this was part of her problem. In one of the meetings prior to discharge the Consultant said that she thought Rosemarie had never had delirium and it was all part of the progress of the disease.

Now I am far from sure about this.

Whatever problems we are experiencing at the Care Home they have done a great job of stabilising her. She is eating and drinking much better than in hospital and is spending most of her waking hours sitting up. She has a regular, if boring, routine and (limited) interactions with people. This has had a positive effect. She is still startled and frightened easily but the constant wild look in her eyes is gone. They told us in the hospital that delirium could take many months to pass and I think that is what is now happening.

The communication and co-ordination problems remain but she seems to be more aware of what is happening. And that is the problem.

In the early days we promised her we would not put her in a home. She and her mother had managed to look after her father when he suffered from Alzheimer's right to the end. She was terrified of going into a home.

And that is where she now is.

We had explained the move from hospital as a transfer to a specialist facility and that was not entirely untrue. However, if it looks like a duck and quacks like a duck....

About three weeks ago she began to communicate fairly unambiguously that she knew where she was and hated me for breaking my promise. It is difficult to describe the communication process but a lot of it is tone of voice and gesture - very basic primordial functions that are largely intact.

It began with tears and painfully articulated "But I love you!". Dagger in my heart. How could I do this to someone who loved me? Then came the anger. " I HATE you. I would NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER NEVER...GO AWAY" and trying to punch me and claw at my face. Intermittent references to her mum and dad. Pointing to the other residents - "That one!" and turning accusing eyes on me.

I can rationalise it. She rarely sleeps through the night. She needs two people to change her, and dress her. I cannot provide that care even if I didn't need to work and the Local Authority will not fund that level of care at home. Unless I win the lottery that option is out of the question.

But I gave her my word. And I betrayed her.

The Psychiatrist warned against promising anything we couldn't deliver and at the moment I cannot see any circumstances under which she can come home so all I can suggest to her is that if she can get strong enough to transfer with one person's help from chair to wheelchair and from wheelchair to car I can take her out for a drive.

But she sits there all day looking at the damaged people around her and realising that she is going to be here for the rest of her life. She is 64 years old. And I put her there.

Judas indeed.

Me

It seems to me sometimes (most of the time) that this has been filling my world for as long as I can remember. Days become weeks, weeks become months and months are becoming years.

This post is self-indulgently about me.

Reading old posts I am aware how my life became more and more about handling the details of Rosemarie's condition and reorganising my life around supporting her. I had to learn more about the workings of Local Authority and NHS bureaucracy than a sane person should have to, and struggled to develop new skills to cope with the manifestations of the disease.

I did not do any of this grudgingly, but I did not notice the accumulating toll it was taking on me.

I doubt if I got a good night's sleep for a good year before Rosemarie was hospitalised. For the three months before she was admitted I was lucky to get three hours at a stretch. Then I would get up, get her up, toiletted, cleaned, dressed and back to bed, get her breakfast ready and all notes, keys and preparation for the care worker, then out the door by 7.30.

I would drive through the rush hour to a full day at a stressful job, then race back home through the traffic (stopping off at the supermarket for a lightning-fast shop) to be home by 7 to minimise the time Rosemarie was alone. The whole evening would be about caring for her, cooking, trying to keep her calm and entertained, and doing the usual household and admin chores. I might get her to bed by 10.30, which would give me an hour (2 at the maximum) to try to unwind and do any personal stuff. If I was lucky I would get to bed and get an hour of sleep before she woke up for the first time.

Once she was admitted things got if anything more stressful. It was usually late evening before I got back from the hospital and I felt completely exhausted by the time I flopped onto the sofa. I would go to bed and lie there for hours turning things over in my mind, unable to get a grip on the future - how Rosemarie's condition was clearly deteriorating and panicking how I would be able to look after her when she was discharged.

Then on March 3rd (my birthday) I got a phone call from the company I had worked at for 29 years telling me I was in consultation for possible redundancy. This was not entirely unforeseen (and was nothing to do with any time I had taken off to look after Rosemarie) but was no less unwelcome for that. It gave me something extra to worry about in the dark trying to get to sleep, and would wake me with a taste of bile in the small hours of the morning.

Two weeks later it was confirmed (it was never really in any doubt) and after two weeks in the office I was put 'on gardening leave'.

This meant that I didn't actually need to get up early in the morning and the effect on my body was dramatic. It was as if the accumulated tiredness of the last three years was suddenly released. I regularly slept for twelve hours and woke up tired. I would walk down to the local supermarket to get some lunch but after I had cooked and eaten it I would have to lie down for a sleep on the sofa for an hour.

And other things were catching up with me as well. The pain and sadness associated with the deterioration I was witnessing in Rosemarie's condition had affected me all along, but now something deeper was coming out. It leaps out at me when I climb into an empty bed, when I wake in the morning with nobody to roll against and cuddle. The empty pair of slippers in the bedroom and the teapots she loved collecting sitting silently on the shelves.

The way the tears come unbidden when I write about her.

There is another tragedy in all this. I have lost the woman I have known and loved for nearly 35 years. A shadow sits sad and lonely in a care home, but something has gone forever.

It hurts.

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.