I was lucky enough, during my own children’s childhood, not require support from professionals, and they’re grown up now.
But, since both my parents have been diagnosed with dementia, I’ve learned a great deal about what it feels like to be supported – and sometimes challenged – by a variety of agencies.
My parents have always been clever, charming, charismatic and a little bit crackers. To be honest, until recently, it was hard to know where they ended and the dementia began.
That in itself was an issue. For at least a decade now, they’ve cheerfully worn each other’s glasses – or, in an emergency, whoever’s glasses happened to be lying around. So, when one of the adult-care team asked why my dad answers the door wearing what are clearly a pair of ladies’ specs, none of us thought it was a problem.
Receiving pastoral care
Having someone in your parents’ house – taking notes and making judgements – is difficult. It has made me realise how easy it is, on the basis of a brief meeting with parents at school, to make assumptions. Or to ask why that parent seems so angry or defensive without imagining just how difficult it is to have details of your life examined.
On the other side of the table, I find myself constantly on the defence. I cannot bear for anyone to think my mum and dad are stupid.
At the pharmacy, when my dad couldn’t grasp how to use the blister pack, because he’d forgotten the order of the days of the week, I felt compelled, like an anxious parent waving her underachieving child’s Sats results, to point out that he’d once been a lawyer.
I get furious when anyone new speaks loudly and slowly. “She can hear a bloody whisper through concrete,” I said, during one exasperating assessment meeting. Of course, my mother didn’t help by chirping “Pardon?” and then – alas – immediately forgetting she’d made a joke.
Space to articulate
We’ve had many multi-agency meetings, and it’s driven home for me how important it is to have an agenda, an assertive, decisive chair and clarity about outcomes. The basic courtesy of allowing everyone to introduce themselves is essential; it takes time, but it’s worth it.
Then there’s the tricky issue of ensuring that my parents are not reduced to being the most affected, the least involved.
The best meetings always come back to them – Liz and Pete – checking their understanding, allowing them space to articulate, no matter how obscurely.
The worst are when tactless remarks are made within my parents’ hearing – “We all know mum doesn’t have capacity” was one – while my mother, with just enough capacity to know she was being patronised, looked startled and became anxious.
My parents’ sense of humour and their current lack of judgement about what to say and when to say it have caused problems. During one huge meeting, where we were surrounded by earnest professionals, my mother interrupted proceedings to ask how I’d come by such a bruise on my leg.
“Not now mum…” I hissed, while my Glasgow mammy, with pursed lips and raised eyebrows, turned to the senior social worker and said, “She goes oot drinkin’…wi’ sailors…”
There was uneasy laughter, and I could see one lady debating whether to add “promiscuous drunk?” next to my name on the minutes.
But the revelation has been my mum’s residential care provision. In her care home – and the clue is in the name – there’s a common purpose: to make residents feel safe, cared for and at home.
Everyone – from the cleaners to the senior staff – knows everyone’s names. The catering manager will stop in the corridor to let me know that my mum is eating better; the caretaker pops by to tell me the batteries on my mum’s radio have been replaced.
The value of a smile
The day we had to move my mother from her home of 40 years and her partner of almost 60 years was horrible. I felt as if I was sending my child to the orphanage.
We arrived and I helped my mother up the drive. I was anticipating a meeting in an office, going through paperwork – I couldn’t have been more wrong.
Before we could ring the bell, the front door opened. A young woman greeted us.
“You must be Liz,” she said, extending her hand and taking my mum’s. “We’ve been expecting you. Gosh you are beautiful, aren’t you – what a beautiful face you have. Let me get you out of the cold and show you your room.”
At that moment, the sadness that had been weighing me down for the past few months lifted. I didn’t have to see the values of the care home listed in a mission statement: they shone through in the attitude of that member of staff.
It was a salutary lesson in how to inspire confidence, and a reminder that the simple things – and I’m sorry if I’m going to sound like I’m signing off an episode of The Waltons here – like a smile, getting names right, taking time and giving a bit of reassurance that the team know what they are doing really matter.
I’m working on it.
Sarah Ledger has been teaching English for 33 years