Kim is 38 years old; she married Alan in 2006 after a whirlwind romance.  Alan is 76 years old; Kim lovingly describes him as the ‘pain of my life’.  Alan has dementia, he’s in a hospital bed in the front room and needs a new hip, Kim has her own health issues.  The couple have limited family support, Alan has children, but connections are limited, Kim’s dad supports her with shopping and lifts but doesn’t get on with Alan, ‘they clash’.

Kim recently completed the Empowered Conversations after her Dementia Support Worker at Age UK Salford told her about it. I asked Kim what she found challenging about being a carer for Alan.

‘Managing my frustration, Alan repeats things, I think, we’ve just had that conversation!’. I didn’t have the understanding I needed.  I expected Alan to be the same Alan that I’d married.

‘Since completing the course, I’m managing my frustrations much better.  I understand more, my expectations have changed.  Alan lives in the living room, before the course I’d shout from kitchen through to the living room ‘babe do you want a brew?’.  Alan wouldn’t respond, so I’d keep repeating and shouting the same question.  Then I’d come into the living room ‘heated’, and shout ‘do you want a cup of tea?’.   I realise now that if he’s watching the TV or looking at the bird in the cage, that’s all that’s going on for him.  He’s not ignoring me; he just can’t process everything.  Now I come in and look him in the face before checking if he wants a brew’.

Invitation to respond has been massive for me.  We have carers coming in 4 times a day, they are supposed to be dementia specialists, but the dementia care is severely lacking.  They come in with their coats on and ask Alan if he wants changing, Alan just says no even though he does need it.

We’ve had a recent care review with our Social Worker and the Care Co-Ordinator, the course gave me the confidence to challenge the service being provided.  They need to come in and connect with him first before talking about his personal care.  I delivered this with absolute confidence, they agreed but I’m not sure they will change anything.

We have one fantastic carer who does it naturally, they should take lessons from her.  She talks Alan through every step even when she’s doing a cleaning call.  I can see the difference in him and how he responds with her.  She make’s sure he’s an ease and explains everything.

The others do not communicate with him, they sit there writing their notes, not chatting to him.  The course helped me to identify this, if I hadn’t been on the course I would have just accepted the care he was getting, I wouldn’t have known any difference.’

What advice would give to other family carers?

Breathe. Count to 10.  Don’t take it personal, it’s not you that they are angry with, it’s their frustrations and it can come out in anger.  Step away.

When somebody repeats themselves try to respond as if it’s the first time they are asking you.  If you don’t it just creates barriers between you and that person, and they will remember how it’s left them feeling.

Can you describe your relationship with Alan?

I didn’t know how to deal with him.  He’s always been a feisty person.  Now he’s even feistier.  Laughter is the best medicine. We’ve always been able to laugh about things.  We laugh at each other.  Our first conversation was about farting and that was in 2006.

How would you sum up the course and what it’s given to you both?

Understanding, knowledge and empowerment.  Knowledge helps you to change behaviours to better help each other.