By Diane McKechnie
‘Good morning, I’m Diane, and I’m your wife.’
That’s often the first thing I say to my husband Ali. We’ve been married for 34 years. Ali finally received his diagnosis of dementia in 2014.
I’m Ali’s full-time carer: I do everything from administering his medication to brushing his teeth.
Before I had this 24/7 unpaid job, I was a paid care worker. I worked with older people, some who had dementia: it was a job I loved. It’s since stood me in good stead.
Ali was 55 when we started to notice little changes. He was an out of hours social worker and when he left the house he’d have his Tupperware box with his dinner in, his keys and his Filofax lying on the counter ready to go. Me and the kids used to say goodbye and then we’d count to 10, knowing he’d be straight back to pick up the things on the counter he’d forgotten.
It was after he came back from a trip to visit friends in Glasgow that we decided to go to the doctor. He’d come home without his holdall and our friends rang me to say they were worried about him. While he was with them he’d struggled to tie his shoelaces: he couldn’t remember how.
He had countless appointments, scans and tests, but everyone kept telling me the issues were down to his epilepsy.
It took nearly six years for us to get his diagnosis with a type of dementia called Posterior Cortical Atrophy: the kind that the author Terry Pratchett had. I was in floods of tears but I was just so relieved to finally have a diagnosis. Ali was very matter of fact about it.
I left my job as a carer a long time ago: I just couldn’t make the shifts work and leave Ali alone for such a long time. I’d taken a part time job escorting people to day centres but I had to leave that too when I began caring for Ali full-time.
I felt sad. I thought, this is it, this is me now. I was worried about money too: I would get Carers Allowance but Ali was too young for his state pension.
It was really tough during the pandemic. But I got through it with the support of other carers. We’d meet up on Zoom and every Saturday we had an agreement that at 12.30pm, we’d all put on the same song and have a dance around in our kitchens. It was a great comfort to know that other people were doing the same thing at the same time. We felt less alone.
As well as being Ali’s carer, I’m also his advocate. It’s difficult to access information about the limited support available. If I had a penny for every time someone told me how much money I’d saved social care services then I’d be rich. But what are they doing with all of this money that’s been saved? They’re not putting it back into care or carers: my Carers Allowance pays me about 50p an hour.
I feel I’ve aged about twenty years during the time I’ve been looking after Ali. I’m tired: really tired, and I’m sad. I miss Ali. You grieve for the person you’ve lost: for the life that you’d planned. We’d always said we’d go on lots of holidays when we retired. But that’s never going to happen.
I just wish the Scottish Government would value carers and listen to us about what needs to change. And I wish they’d value the people we look after too. Ali is still a person.
Sometimes in the night I wake up and look at him and he’s awake and crying. He’s still in there. I’m just hoping he doesn’t realise too often what’s going on.
Diane is marking Carers Week and supporting the ‘A Scotland That Cares’ campaign, which is calling for the Scottish Government to create a new, dedicated National Outcome on Care. It is supported by more than 60 organisations, including Oxfam Scotland and Carers Scotland. Support the campaign here: https://ascotlandthatcares.org/