As any reader of the Blog will know I often have misgivings about the work of professional staff who are doing their best to support us. Shortly after 1 ‘o’ clock this morning when Maureen was trying to resolve where her clothes were, any doubts I a new Care Coordinator receded when she said: ‘I know what’s wrong now; I’ve lost my short-term memory’. I have been skirting around this issue for almost three years and thanks to the skilled work of our C C I can now talk openly with Maureen about how we deal with the damage caused by her stroke. Just for starters, we have decided to put crosswords back on the menu tonight; alongside our normal routines of:
- Singing with the man:
- Catching up on the exploits of the Famous Five:
I realise we are very fortunate to be living in this neck of the woods. The support to someone with dementia in North East Lincolnshire is probably as good as it gets. However, from my perspective, there remains a missing link that I need to pursue.
I would find it helpful if someone kept a watchful eye on my role as Maureen’s Care Partner: someone to give me line management/ support and supervision. I’m afraid old habits from my professional career die hard and that is something I need within this labour of love. Continually being told ‘I’m’doing a great job’ doesn’t do it for me – my response is ‘how do you know?’. I realise that this need creates further work for professional staff but how else can we know Maureen is getting the care she deserves?
In the absence of line management/ support and supervision I have decided to post a timely reminder to myself:
I feel better now I have raised my concerns about the way an assessment of Maureen’s capacity to consent to sex was being handled. It felt uncomfortable that I could be accused of rape if the interviewer established that she didn’t understand the implications of ‘having sex’. My concern was with both the language being used and the intrusion into our married life. Just to clear up any misunderstanding here, in my opinion, married couples don’t need to have sex – they make love. Thankfully, those concerned have belatedly accepted that we are in a loving relationship and feel no need to progress such investigations.
I made a silly mistake yesterday and paid a heavy price. Maureen’s presentation in the afternoon and early evening became as challenging as I have ever experienced. I should have spotted the signals early on when she just couldn’t settle down and said she didn’t know what to do. Unfortunately, I ignored her as I listened to Coventry City’s attempt to prevent the inevitable relegation to Division Two. Then once we were 3-1 down the battle here began to intensify until it became almost unplayable as the evening progressed.
I have to smile when people tell me that you have to take things day by day with dementia. Those who make such statements have never been on duty 24/7 as they would have seen it’s more likely to be hour by hour. In fact, things can often change within minutes.
As ‘Girl Monday’ was off sick 
Dementia: Sharing The Good Times 