One Door Closes

I arrived mid afternoon planning to take Rosemarie to the garden. It was sunny but a bit windy, and I didn't expect to be out for long, but I think she enjoys the garden and I wanted to try it.

All the residents seemed to be holding Easter Eggs when I arrived. Apparently there had been some kind of meeting in the downstairs lounge which included the late handing out of Easter Eggs, and, more the point, a leaflet amusingly entitled The Real Meaning of Easter. I have no idea whether it was this or the consequential noise and bustle but Rosemarie was distinctly agitated when I arrived, and showed no enthusiasm for going down to the garden.

I wanted to get her out of the noisy lounge in any case so I wheeled her out and headed for the lift. She was not trying to communicate in her usual way as far as I could tell, she was just waving her hands around and jerking a bit. I tried stroking her hair and gently kissing her neck but nothing seemed to be working.

She did not react in the garden so I took her to the Library on the ground floor. This is a quiet place with a nice view of the garden and she normally relaxes and opens up here. Not today. She let me feed her some grapes and slices of plum but with no enthusiasm and no attempt to communicate.

I took her back upstairs for supper and she became even more withdrawn. She paid me no attention and hardly ate anything. She did not make any sounds, and did not seem to be looking at anything in particular. She did not respond at all to me calling her name. I felt totally shut out.

After supper she was made ready for bed and lay there hardly moving. The expression on her face was one of complete disinterest with the merest hint of anger. I tried talking and playing music but she did not respond to anything. After a while I decided there was no point in staying. She stared into space and did not react at all when I kissed her goodbye.

She ignored me when I left.

More than one door closed that visit.

Care Plans

This post is slightly out of sequence. Apologies, but a lot has been happening recently.

When Rosemarie first went to the Care Home their paperwork included a Care Plan that basically transferred her statement of needs from pieces of paper sent by the hospital to different pieces of paper used by the Care Home.

This is all very well but I have a lot of experience of systems where actions and commitments are transferred from one piece of paper to another but there is no actual follow up or controls put in place. It's like those impressive Mission Statements that companies come out with and then forget. 

I voiced my concerns at the two-week review I pushed for and at the formal three month review, and have spoken to the Care Home Manager on many occasions.

As so often happens, the problem reduced itself to one of vocabulary and interpretation.

The structure of the Care Home is that there is a Care Home Manager responsible for everything including administration, and a Care Manager responsible for the medical and care side of things. Each floor has a qualified nurse responsible for the care of the patients on that floor, and anything from two to five care workers to do the actual caring.  Some residents are effectively bed bound and some are mobile and pretty independent. Quite a few, however, are wheeled or gently led to one of the two lounges and parked there or seated in comfortable chairs. There should always be at least one care worker in the lounge at all times.

Now to me one-to-one care means that there is somebody dedicated to looking after Rosemarie's needs at all times. Not just keeping an eye on her and protecting her from falling when she stands up, but trying to stimulate her and dealing with agitation and distress. Moving her somewhere quiet if it is too noisy. Making sure she eats well and hydrates properly - even if this means taking her somewhere quieter at meal times. This is a full time job.

It became apparent to friends and family that in practice (regardless of the management commitment) one-to-one care was interpreted at the workface as a requirement that the person sitting in the lounge would sit next to or near Rosemarie. That's it.

There are two dedicated staff who run activities for all residents, usually on the ground floor, every afternoon. A friend took Rosemarie to one of these and was told that it was wonderful she had brought her down because usually she missed out because she was on one-to-one care. Eh? I appreciate that there will be times when due to sickness or emergency they are short staffed but that should be the rare exception not the rule.

The CCG approved funding for twelve hours of care a day in December. I was expecting this to solve all the problems because that was effectively funding individual care for every minute Rosemarie was out of bed. There were staff shortages over Christmas and New Year due to holidays and sickness, but I expected everything to be in place by the end of January.

The Community Mental Health Team had a meeting scheduled at the Care Home for a couple of weeks ago and I thought that would be a good time to draw everything together and invite the Care Home Manager to review the Care Plan with us. I think she felt a bit ambushed but the CMH Team (as representatives of the CCG) carries more weight than I do and I wanted to get this clarified.

I was very happy with the result. The Care Home Manager agreed with everything we proposed and it was apparent very quickly where the problem was. Either the care workers did not know that this is what was expected of them or the nurse in charge of the floor was being tempted to dilute the role of the designated one-to-one carer to cover inadequate staffing levels. Either way it is a management issue. The CCG is paying for a care worker to look after Rosemarie, not contributing to general running costs.

There are no villains in this piece. There are a couple of workers I don't have a very high opinion of but in general the staff are excellent and committed. I hope the awareness of outside scrutiny will focus attention where it is needed.

With the movement resulting from the recent medication review, I feel that we are starting to get some traction at last.



 

Death In The Family

Rosemarie grew up in a very close, loving family. She was the youngest of three, and her brothers were 16 and 13 years older than her: they treated her like a princess. She was devoted to both of them, and although, for various reasons, we had seen them less frequently over the last ten years, they were still very close.

As Rosemarie's condition deteriorated we saw them even less. Both the brothers were in their 70s and were not keen on driving up to and through London, and Rosemarie's needs made it difficult to travel to them.

The elder brother, Pat, had not been well for some time. He had a long history of heart problems and a year ago was diagnosed with Dementia. A couple of weeks ago I got a phone call that he was in hospital after a serious fall and there were complications.

This presented a dilemma I had not anticipated. I have no idea how much of what I say Rosemarie actually understands, and even if she could understand there was no way she could go and see him, for the same reasons she could not go to our daughter's wedding. So should I try to tell her?

Two days later, while I was still wrestling with this, I got another phone call saying Pat had died. What should I do now?

Surely this is something she deserved to know. This is her family, her much loved eldest brother. But what would be the point of telling her? If I did successfully communicate it, what would I achieve? She would be overcome by grief and have no way to communicate about it and I would have very little chance of being able to comfort her. She would have long, lonely hours during the day and night to think about it and to be upset.

And she would not be able to go to the funeral. There would be no opportunity for closure, even if she were capable of thinking clearly about it.

And not only that. We have already had many episodes where she gets very upset because (I think) she is remembering the death of her father from Alzheimer's. The last thing we wanted to do was remind her of that.

So I did what still feels like the cowardly thing and did not tell her.

Last Thursday my son and daughter and her husband and I went to the funeral and tried to represent her in some way. It was hard. This was her family: just about every time I have ever seen them she has been there. The ceremony was beautiful and touching, but for me there was something terribly wrong.

There was a large, Rosemarie-shaped hole in the event for me, and I felt sick in my stomach for most of the day.

Another Medication Review

Last week we had a follow up medication review with members of the Community Mental Health Team. The nurse on duty was not the one normally present at the reviews, but she had comprehensively assembled what notes there were concerning Rosemarie.

I have written elsewhere about my views on the value of the data they collect. Specifically this time we were interested in changes to her sleep pattern, general emotional state, and the stand up / sit down thing. Data, not subjective, apocryphal impressions. Data.

Well here we were near the end of March. What sleep pattern data did we have? January and most of February. Where was the rest? Probably in another folder. Somewhere. What about the daily notes compiled by the care staff?

"Rosemarie in Lounge."
"Rosemarie changed."
"Rosemarie given drink"

And what about the detailed stand up / sit down notes? No idea. Must be somewhere else.

So we were back to what friends and family had observed and reported to me, what I had seen myself, and what a busy nurse had ascertained from fairly brief occasional glimpses. And the 'notes'.

There was a general consensus that she was less upset generally. although she still had tearful episodes and continued to be distressed by loud and unexpected noises. The stand up / sit down (henceforth SUSD) seemed to have decreased as well but my observation was that she was more often in the wheelchair and this tends to inhibit her ability to stand up.

The sleep pattern data seemed to suggest that she was falling asleep between 10 and 11 most nights, and waking up at about 8. This seemed to be an improvement, but further discussion teased out the extent to which she was tired during the day. Increasingly (but no actual data of course) she was given breakfast in bed and put back to bed afterwards until maybe 11 o'clock.

All the friends and family had seen her when she seemed medicated rather than tired - head dropping to her chest, no response to any stimulus whatever. Then suddenly some switch would seem to click and over the course of a few minutes she would wake up and start interacting.

The doctor thought that this indicated that she was having too much medication - the Donepezil, Zopiclone and Clonazepam had a significant cumulative effect. He suggested that since Rosemarie was sleeping earlier we should stop giving her the Zopiclone unless she was still awake at 11 pm.

The first part of this I agreed with completely, but it seemed counterproductive to give her the Zopiclone at 11. We knew from experience that it takes a good three hours to work (she usually has it at 7) so this would mean it would start working about 2 am. This seemed to be a recipe for making her sleep till late morning. I would have preferred to stop the Zopiclone entirely and observe what happened for a couple of weeks.

We also discussed pain management. Rosemarie has no real way to communicate if she is in pain. She cannot verbalise her condition. She is unable to point. We don't even know how she experiences pain. She regularly gets urinary tract infections and we assume that sometimes this pain or discomfort is the cause of at least some of her SUSD behaviour and possibly some of the tearfulness and agitation. Maybe she gets indigestion, or a sore throat or a headache. How do we know? Being in pain is bad enough, but what must it be like to be in pain and not be able to tell anyone?

So, a trial of regular paracetamol (1g daily) to see if this had any effect. And a regular test for UTI.

Finally we looked at data collection. The Care Home has to provide data to justify the continuing 1 to 1 care funding, and this is normally in the form of detailed SUSD information, though I have tried in the past to get them to include observations of her emotional state. This was now formally requested by the doctor, and with luck the next review in a couple of weeks will have access to more accurate information.

I left the meeting to the soundtrack of the squeaks and grinding noises of slow progress being made.

Missing Person

Because I see Rosemarie every day I often miss the incremental changes in her behaviour that, when seen in perspective, are quite dramatic. Her increasing reluctance to co-operate in feeding (at least with me) and the general change in her pattern of speech (from normal conversational volume to a conspiratorial or reflective whisper) represent a further loosening of the moorings.

For a long time she has been easily distracted during meals, but usually calling her name and adding "Here's some food for you" gets her attention and she would allow me to feed her another forkful. The process was slow, and slowing - it would often take half an hour to feed her a couple of sandwich quarters, a serving of beans, and a small bowl of peach segments. It became progressively harder as the food got cold and even less appetising, but we would get there in the end.

Now it is much more difficult, and I didn't really notice it happening. A lot of the time she totally ignores me, and keeps her lips firmly closed, or turns her face sharply from a proffered forkful. Something vague seems to be happening to her but she doesn't share it in any way at all. She is not noticeably distressed, and she doesn't seem to be looking at any person or thing in particular. There is just a sense of withdrawal that is chilling.

I saw this coming, but that doesn't help. It is another small loss to be picked up, examined bitterly and cast behind me to join the huge pile of emptiness that fills the space where a lot of me used to live.

There is a small chance that it is to do with the medication (we had a review recently) but whatever the cause it is a brutal wall between us and I started to wonder if I was starting to disappear from her awareness. I have not been sure over the last few months whether I am recognised as her partner of 35 years or only an anonymous visitor who has come to see her just about every day for the last year. The "I love..love you...you...." has become much rarer and less personal, and it seemed I was disappearing from her world, and she was disappearing from mine.

Or so I thought.

Normally I arrive at the Care Home in the afternoon and sit with her for a while before supper at 5 (which I try to feed her) and stay with her as she is changed and put to bed (usually just after 6) and I sit with her in her room for as long as I can. We listen to music and eat chocolate and I try to communicate with her.

This Monday I was unavoidably late and did not arrive until after 6. As I came out of the lift I saw her being wheeled towards me on her way to her room. This time she clearly recognised me (sometimes she looks right through me) and she gasped and started crying. The care worker explained that she had been really distressed during supper and she thought that this was because Rosemarie missed me. There was a complex layer of signals to Rosemarie's communication that didn't really prove or disprove this: I have been there and seen her get very agitated at supper - maybe by the behaviour of other residents or a noisy TV - and one thing the last couple of years has taught me is to be wary of assigning cause and effect too easily.

But maybe... it would be a relief to think that she still recognises me and understands who I am. When all of this began we promised each other that we would never forget we loved each other.

That is a day I really do not want to see.