There Is No Spoon

Rosemarie still spends a lot of time in her room, even when she is up. I prefer to give her supper in her room (we can reheat the food in the microwave) and ditto lunch if I or another visitor are there. We also have treats like chocolate trifle in the fridge.

If she is in bed 'sleepy' there is also the requirement to give her fluid.

All this requires spoons. 

There aren't always spoons.

To begin with I took in packets of plastic spoons like you use for picnics, but Rosemarie started to bite down hard on them and the last thing we needed was her swallowing sharp pieces of plastic. 

So I thought about the metal spoons provided by the home. 

There is usually (but not always) a clean spoon in the clean beaker on her small chest of drawers ready for mixing up thickened juice. They bring one with the meal (for the main course, to be washed and used again if they provide a dessert). 

However, mostly these get cleared away regularly and I often arrived at Rosemarie's room to find no spoons - and sometimes no beaker for the juice. The beaker is less of a problem because there are usually some in one of the lounges on Rosemarie's floor, but the only source of spoons outside mealtimes is the kitchen on the lower ground floor. It probably only takes 10 minutes to go and get some, but it means having to find someone to keep an eye on Rosemarie if she is in her chair, and in any case it just seems.....wrong.

So I collected the odd spoon that came my way and tried to make sure there were always three in the room: one for the fridge treats, one spare for fluids and one spare in case they didn't bring one for the yoghurt or whatever they were going to give her for dessert.

I didn't think it was excessive. It wasn't going to break the bank, and I made no effort to hide them: they were in a bowl on top of the microwave. 

After a few days they started disappearing. At first I thought the staff may think they were dirty or had been left out for collection, so I moved them to one of the drawers. They started disappearing from there too.

I had also retained a plastic cup with a sippy cup lid, so I could prepare a thickened juice drink to take down to the garden safely without having to go hunting round the building for one of the rare lids.

That disappeared too. 

And a neat little note appeared from Good Nurse, asking me not to retain spoons and cups in the room, saying that they were for the use of all residents (!)

I didn't want to go to war about this so I calmly brought in a couple of spoons from home and left them in the drawer. I also brought some of my own ceramic cups so I could make tea.

Today one of my spoons disappeared.

I think we will have to have words.

Sleep and Chairs

Rosemarie is still sleeping a lot. They keep telling me.

The fluid intake chart still shows her as being awake enough to have up to 100 ml of thickened water or juice during the night at least a couple of times a week, usually about 2 a.m. and again at about 5 - 6 a.m. I suspect she is awake at night more often, and this accounts for a lot of her tiredness as I have written before, but I have been looking at the charts and talking to others and doing some thinking.

All of this assumes the intake chart is accurately reflecting what is happening when I am not there.

Usually she is awake enough to eat all her breakfast at about 9 a.m., and drink some Ames and thickened fluid. Even when she is recorded as awake during the night she seems alert enough for breakfast - maybe she is hungry.

Sometimes she is marked as sleepy during the morning and sometimes not. They don't complete a sleep chart during the day and I think they are sometimes recording her as sleeping on the intake chart when they come to give her fluid and she is asleep. As with so many things there is no standard procedure for writing things down so an empty chart doesn't actually mean anything.

She is usually awake enough to have some or all of her lunch, but she almost always falls asleep afterwards (we have witnessed this) and will sleep on and off most of the afternoon. When she does wake up she seems instantly wide awake, and if stimulated will usually stay awake for a while. Often she will go back to sleep almost immediately, but she is almost always awake by the time supper arrives at about 5. She shows no signs of wanting to sleep afterwards, and is often at her most alert when I need to leave at about 7.

At one stage I assumed the 'sleepiness' was an excuse to leave her in bed (which is less work) and I think that is still true to an extent, but I have argued that is she is up and in her chair then when she wakes from her doze (which is what I think it is, often) at least there is a chance of her being stimulated.

I had an interaction with the Care Home Manager and she agreed that by default Rosemarie should be dressed and up by mid morning. From last Monday (13th) this started happening and I am mostly happy with the result. She is either awake or less deeply asleep when I arrive, and on warm days it is possible to take her into the garden, and on wet days we can go to the downstairs lounge and look at the wet garden through the rain-streaked windows.

My only concern is there is a marked disinclination to move her from the chair except to put her back to bed ("too tired" has happened a couple of times in the last week), and this can mean she goes for seven hours or more without having her pad checked (supposed to happen every four hours). I will have to work on this because we do not want a resurgence of the UTI.

The staff also have to be trained and reminded about adjusting the chair every hour or so to prevent sores forming.

Ah yes. There is a new reclining chair for her, delivered yesterday.

We have been agitating for some time for a proper padded reclining chair and the one loaned by Croydon Social Services has done a sterling job. It was on loan for 4-6 weeks while the Home organised purchasing a chair matching the OT's specifications. They are legally obliged to do this, but it comes as no surprise they are reluctant to pay the £3800 asking price. They kept dragging their feet (and there was the legitimate hiatus when Rosemarie was a Death's Door) and the loan stretched to 15 weeks and Croydon understandably started getting impatient and threatened to start charging rent on the chair. 

Suddenly things started to move.

I was treated to some fairly blatant and amateurish expectation manipulation: shown a proposal for a totally unsuitable chair that was understandably dirt cheap and left to stew and boil for a day or two, then the Care Home Manager sought me out to tell me that she didn't really like that chair and had identified a much better mid range chair that she thought was suitable. She had a sample delivered when I was not there and took lots of pictures of Rosemarie sitting in it apparently happily. Here was the Sales Brochure. Would I like to proceed? 

No I would not. I want to see it for myself, sit in it myself, see Rosemarie sit in it with my own eyes. Agreed. 

These things happened and I have to say I found very little to complain about, and in some aspects it was better than the specified chair. The Croydon OT does not have the final say, the Home does (and they have a tame OT they can bring in if things get sticky), and I could not come up with a reason not to proceed. All I could do was state a couple of minor concerns that I can refer back to should in be necessary (absence of foot box and shaped back support).

But Rosemarie seems comfortable in it and that is the most important thing.