I hate to tempt fate but life has been a bit calmer recently and things that help to improve our situation are now starting to happen. Our local council's brokerage service put us in touch with a woman with over 30 years experience of working in dementia care homes. When I met Pam to talk about employing her for a few hours a week to give me a regular break, she 'got the job' as soon as she said, 'There is no 'they' - everybody's different.' I'm paying her for between 3 and 6 hours a week (depending on what else is happening that week) and trying to split the time between things I need to do - trying to reduce the chaos around our over-large house, sorting out out temperamental car and computer, shopping etc - and things I want to do - catching up with friends, writing, music etc. It's amazing how quickly the hours can disappear but it's early days and I think I can get better at using the time.
We have also had a visit from an occupational therapist which was helpful though several of her suggestions seemed to me, and to the carer, to be unlikely to work with S. More and more I realise that the support that we're now starting to unlock (though someone seems to keep changing the lock) should have been suggested to us before S reached the stage she has. For example, after what we both thought was a hopeful visit to the day centre, we now find that the one specific activity that was offered - an art session which was referred to and oversold as 'art therapy' but which might have interested S - now seems to be in doubt because the tutor 'is not dementia trained'!!! One wonders what she is doing working in a dementia day centre in that case, why they haven't trained her and why the guy who runs the centre appears not to have known this when the original offer was made. The suggestion now is that, even if as they originally suggested, S is accompanied by Pam (who we'd be paying) the art tutor may not be comfortable having S in the group. So I'm wondering if the whole centre is being run on the basis of what's best (easiest) for the staff rather than the clients.
As a bit of a sop to us, the OT brought a box of paints, four sheets of paper and a couple of brushes so that Pam could try some painting with S at home. S hasn't shown much interest yet but this has given Pam the idea that maybe they could try making pompoms which S might enjoy. Although Pam is very good with S and they are definitely developing a relationship, it was clear from the start that she'd like to do more than just watch S - she keeps asking if there's anything else she can do - so if we can find things she can do with S this will be good all round.
No sign yet of my promised meeting with an admiral nurse, or the promised gab rails to help S down the front step, or any further interest from the psychiatrist to whom she is now allocated, nor a promised new psychological assessment, nor any concrete outcome from my carer's assessment. So it's still mostly friends and family who have given their time and support to enable us to cope better.