A pretty good day

Guess what? The meeting with the Young Onset people was very positive. First they saw S at her most dire as she had fallen and hit her head, not badly I'm glad to say, and I was just attending to this when they arrived. She was sprawled on the floor in a very uncomfortable-looking way and just told us all to go away. She appeared to be 'worse' than they would have expected from reading the notes.

They had a number of proposals:

a referral to a nutritionist for advice (via the GP) on what is now almost an eating disorder (it's very hard to get her to eat and drink at all)

a carer assessment for me, to discover what my needs are

a fresh psychiatric assessment for S in the light of all the recent changes

advice and action from 'aids and adaptation' people, e.g. extra stair handrail, changes to bathroom etc

a brokerage system which would put us in touch with trained and vetted people we could employ on an hourly basis to e.g. come and put S to bed and watch over her, particularly if she does not go to bed, while I could get a good night's sleep

a sensory team who can advise on things that would compensate for the visual and perception problems, e.g. they can test for which colour crockery is most likely to be most easy to see

help with assistive technology - sensors and alarms to alert me to problems when I'm not in same room

So lots of things to go at. I've started on some of them today.

The final thing that interested me is that it was suggested that a couple of the drugs S tried, without effect, in the earlier stages, might be of more use in slowing down the progression in this stage, though I'm still very wary about drugs after the wretched experience with Amitriptyline.

S had one of those evenings when she calms right down. She enjoyed watching a Simon and Garfunkel DVD, singing along, and later in bed she was talking and singing with the positive crowd - no sign of the ones she is always telling to get out.