Yet again I’m at the keyboard at a ridiculous hour.  Maureen woke around 3.30 am this morning distressed, crying for her mum, and ‘wanting to go home’.  It is not easy to get back to sleep after witnessing such upset.  Her presentation this morning followed  another challenging day.  As her son said a couple of weeks ago ‘this is not sustainable’.

I’m going to suggest that my meeting with my Admiral Nurse on Friday morning becomes a  Case Conference.  I’m hoping that Chloe our main carer, and Sue our social worker will also be available to attend.  This would provide a sensible platform from which to review Maureen’s presentation, and plan a way forward.

Maureen is so confused, and frightened, at the moment that she doesn’t like me being out of her sight.  Her functional ability is so poor that I have to keep a watchful eye on what she does to ensure her safety.  If I don’t keep her stimulated she goes to sleep. This is an exhausting schedule, and it is not sustainable.

I need to ask family members to change their plans for later in the week. It is no longer sensible to have family visits so close to my trip to London. The Case Conference has to become the vehicle for deciding the best way forward in the current circumstances.  One essential component of the Conference is discussing how I can rediscover a life of my own in addition to being a Care Partner.

As I complete this post at 7am Maureen is crying out in bed that ‘she doesn’t know what to do’.  She has just joined me as I type and told me that ‘she doesn’t know what she can do to help today’.  She is also concerned that she can ‘hear other people downstairs as the radio is on’.  No-one is downstairs, and the radio is firmly off.  It’s just another day ……….