Challenging Sunday

Bathtime was becoming a challenge. R had very poor balance and as her spatial awareness deteriorated the risk of slipping made the whole proposition rather frightening. Then the magnificent people at St Thomas turned up with all sorts of toys including an electrically operated chair to lower her into the bath.

Bathtime became fun and exciting for her. It was still difficult getting her to sit in the middle of the seat and at the back, but it was worth the effort. She was keen to have a bath every day if she could and she was all smiles. We had a strange diversion for a while when she was convinced other people were coming into the flat and using her bath chair and she never got to use it but we got past that eventually.

There seems to be a residual feeling of upset though -  maybe it is just the novelty wearing off - but it seems to be being absorbed into the fabric of the problem.

For instance, I have noticed that she is actually a lot quieter in how she speaks and this can cause problems. I leave her to enjoy the bath and leave the door slightly open. I check her every few minutes but keep listening anyway in case she calls: I turn the tv down and make sure there is no other noise.

But still I seem to not hear her. I go back into the bathroom and she complains she has been calling for ages and I have ignored her.

There is also the tricky question of how much I leave her to wash herself and how much I (offer to) wash her. A regular rejoinder to all sorts of offers is "I am NOT a baby" (delivered in a clear firm voice as always when she is angry).

I usually offer to do her back for her (which she likes) and can then usually get away with doing under her arms (which she seldom does) but this Sunday my failure to hear her call set an icy tone for subsequent interactions and she kept complaining that she was itchy and that I had put salt in the bath.

I have noticed over the last year that she has grown much more sensitive to pressure on her skin of any kind and often interprets it as itching. On this occasion it may just have been the feeling of the water or the bubbles of the bubble bath (used quite unremarkably on previous occasions).

We then seemed to enter a state of perpetual upset where everything was negative and wrong. This breaks my heart. Whatever I do only seems to make things worse. Speech or silence, going or staying, grovelling apology, jokes or light hearted chat - nothing works. And what is even worse, she rapidly forgets what it was that set off the upset, which she seems to find even more distressing, and she is likely to drag things out from the remote past or even make something up.

To prolong the problem Sunday was also Hair Wash day. We don't have a shower (and she wouldn't be safe in one anyway) so we use the sink. A few months ago we had a disastrous session where she got shampoo in her eyes and now there comes a moment in every hairwash where she remembers this and immediately thinks it has happened again (even if I haven't used any shampoo yet). She gets angry and it becomes a rush to get it over with. I then tried to blow dry her hair for her and she stood up after a couple of minutes and walked off saying that she wanted a proper hairdresser to do it.

I am wondering whether I am the right person to be doing this anymore. Is there too much embedded history now and every attempt will be a replay of all the bad bits of the previous ones? This is distressing for both of us. Other times she tells me how kind I am, but we seem to be filling up our lives with an increasing number of NoGo areas. I can take her to the hairdresser once a week to get her hair washed but if I try to get someone else to wash her..... that is somewhere I really don't want to go yet.

This seems to have become a very negative post. Sometimes it is hard to keep looking on the bright side.