Friday, October 21, 2016

Chair Again

In general I have been happy with her purple reclining chair despite its mass and poor maneuverability,  but over the last few weeks we have had some problems: she is slipping down a lot.  Whether it is agitation or just restlessness was difficult to tell, but once she starts to wriggle she slips down, then folds herself into an S shape in an apparent attempt to get comfortable. She really need lifting back into a proper upright sitting position about every half hour. The alternative is to tilt the chair so far back that she is basically lying down.

When the chair was first supplied I really wanted the Croydon OT, who had been so helpful, to have a look at it before I said Yes, but was bounced into a decision because the attitude of the Home was that the OT did not have a veto because Croydon was not paying.

I did ask her to come and look at it after the event since the Home had not bought either the chair or the sling she had specified, and she agreed, but one thing or another got in the way and she never made it.

On 20th September I got a very apologetic call from the OT saying how guilty she felt about not visiting and offering to come on the Friday. This was perfect timing because I was starting to get concerned and would value her input. We settled on 3.30 and she confirmed with the Care Home.

She arrived late but that worked well because Rosemarie was quite tired and slipping badly. 

She was not impressed. The chair, she said, was far too big and provided no support. Dementia patients like to feel the reassurance of firm support and the chair did not provide it. The torso support pads could not be adjusted inwards enough to keep her upright, and the head supports were too high. 

Rosemarie had slipped down the sling to such an extent that when the care workers came to hoist her into bed they had such difficulty with the leg straps that she was lifted like a crab. The look on the OT's face would have cut through steel.

We left them to it and retired to a small room called the Quiet Lounge to discuss what to do. 

We discussed the shortcomings of the chair, the inappropriateness of the sling, and the obvious pressures on the Care Workers. We agreed that the Salesman who had provided the chair had behaved very unprofessionally. Either he had not measured Rosemarie or he ignored her needs in order to sell the chair he had brought with him. In any case he must have realised it was too big. 

I suggested we ask for a meeting to include the Care Home Manager, the Salesman (or a representative of the company), the OT and me. The OT would challenge the rep to agree that the chair was unsuitable as it was and together they could assess whether it could be adjusted to fit her or if it needed to be replaced. Once this had been established the rep and the Manager could discuss who was going to pay for it. 

She said she would write a sharp and detailed report within a few days.

And she did. And it was. New Nurse opened the letter and read it and immediately realised it was a hot potato. The Care Home Manager was on holiday and her deputy, the Care Manager, clearly did not want to deal with it. I was assured it would be dealt with promptly when the boss was back.

That was well over three weeks ago and on the 19th October I got a call from the OT saying she had not even had an acknowledgement of her letter. In her opinion the Home's tardiness in dealing with an important problem that had been brought to their attention constituted neglect and she was ready to raise the issue with Croydon Safeguarding Team, which would bring all kinds of pain down on the Manager's head. 

I was reluctant to implement this nuclear option without giving them a chance to comply and said I would call the home and find out if anything was happening. (This was obviously the OT's purpose in calling me.) 

Well things appear to be moving albeit slowly. The Manager had read the report and written to the rep (or his company) asking when he would be available for a meeting. She sounded less than happy with me, particularly when I advised her to email or call the OT asap.

And in the meantime Rosemarie continues to slide down in the chair.

I am taking plenty of pictures. 


Dream

Last night I had a very intense dream about Rosemarie.

We were in a bigger version of the care home, more like a hospital, though the corridors and the decor were the same. There were lots of people bustling around, but suddenly they parted and I could see Rosemarie down the far end of the corridor. She was walking unaided towards me, smiling and laughing and glad to see me. We hugged and cried and I thought my heart would break.

Then she was gone, off to thank some doctors. It took me a while to find her, but when I did I told her that I wanted to take some pictures on my phone of her walking, to send to our son and daughter. 

We tried for ages to take some pictures: in the lounges, in the corridor and even outside, but nothing worked: either it was too dark or people kept walking in between us.

Then I woke up, and for a second or two I was filled with joy - and then I realised it was a dream, and the darkness came crashing down.

Some of the feelings of joy remain though.

So much cold and dark and sadness in the last few years, I had forgotten the feelings of joy and warmth and love when we were together.

Monday, October 17, 2016

SALT 2

This is a long overdue post and I have quite a lot to catch up on. 

I have been waiting to meet the Speech And Language Therapist for some time. I spoke to her on the phone after the first time she saw Rosemarie (I was not present) but since then the Clonazepam has been stopped and I thought this may have made her swallowing easier. I had asked for another referral (and stressed I wanted to be there) but had been told that the waiting list was 28 weeks. Good Nurse, before she went on maternity leave, was trying to get a SALT from the Rapid Response Team to do an assessment, but whenever I chased either of these options up I got no feedback.

Then on Sept 21st I got a call from the Care Home at 9.30 advising me that the SALT was visiting at 12.30. That day. Three hours' notice. Lucky I wasn't working.

Of course 12.30 is lunchtime, and a good time to observe Rosemarie eating. I am not normally there to give her lunch so she has it in the lounge. I moved her to her room to feed her because it was more private (for the assessment) and had the microwave (hot food).

The SALT duly arrived and turned out to be the person I had talked with on the phone all those months ago. She had been coming to the Home to see another resident and had seen Rosemarie's name on the list and decided to squeeze her in. 

I was feeding Rosemarie when she arrived and for a few minutes she just sat and watched, getting up from time to time and listening through her stethoscope to Rosemarie's throat as she was eating. I had a very strong feeling that I was being assessed just as much as Rosemarie.

I am always very cautious feeding Rosemarie but I wanted to represent the full range of techniques the Home uses to feed her. This provoked some slightly alarmed comments from the SALT and we had a very useful discussion about her problems and how to address them. 

The 'three swallows' rule still applies and the SALT explained in detail the mechanics of swallowing food and showed me how to recognise the stages. It is apparent that the whole process is problematic for Rosemarie and although sometimes she does swallow easily and in one or two attempts it is the exception not the rule. 

It made me worried that the speed at which the carers feed her is perilously close to force feeding and I asked the SALT to write all this down in Rosemarie's notes so it was part of her care plan. 

She also pointed out behaviour that she characterised as Rosemarie indicating that she didn't want any more food. This included turning her head away from the spoon, keeping her teeth closed and tilting her head back. When I write it like that it seems pretty unambiguous, but it is not that simple. Sometimes, I think, she does not register me telling her that food is coming and she responds to the spoon as a foreign object touching her lips. When I repeat that I am giving her hot food she opens her mouth and accepts it. Of course, it could be that she feels full or tired and doesn't want to eat, but this decision does not persist and she is easily 'tricked' into eating by trying again a few seconds later. I also think that sometimes she is trying to indicate that the food is unappetising or too cold: heating it up in the microwave makes it more palatable.

The SALT pointed out that Rosemarie gets very tired and the process of eating is much more arduous for her because less of it is automatic. She also may be filled up by the thickened liquids she is given regularly. 

I said to the SALT that if we stopped feeding her the first time she refused a spoonful she would starve to death in short order. Her response was that any type of forced feeding increased the risk of aspiration. If Rosemarie really didn't want to eat her food it was not in her best interests to force her, so it all becomes about interpreting the signals.

Which raises another more chilling possibility.

Rosemarie's communication options are incredibly limited. If she decided deep inside that she had just about had enough of all this and wanted it to end, about the only communication option available to her is to refuse food.

This is all so complicated.