Kay Patrick is an actor and director who spent 20 years directing Coronation Street. But when her sister June was diagnosed with dementia, Kay, 75, from Stockport decided to give up her job so that she could spend more time with June, now 80. She shares her experience so far of the dementia journey.

How was your sister diagnosed?

June and I (picture above centre and right) have always been very close, she’s five years older than me but people have often thought we were twins because we have the same mannerisms and sense of humour. Although our lives went in different directions (June was a social worker, I became an actress then a director), we remained as close as ever. Two years ago I was filming an episode of Coronation Street when June phoned and told me she had dementia, although she did add, ‘I don’t think it’s true.’ She was 78 years old.

Looking back, were there any signs before that she was in the early stages of dementia?

Yes. It became obvious a few years ago that things weren’t right. We used to laugh a lot about her forgetting things and muddling up people’s names – things that afflict us all as we grow older. But gradually it began to get worse until a doctor said she might have the onset of dementia. Tests eventually confirmed it.

june

June before her diagnosis

What happened after diagnosis?

I’m still not totally clear what type of dementia June has. She can cope with the word “dementia” – in her mind, it implies forgetfulness and memory loss which is bearable – but she finds the word “Alzheimer’s” more upsetting, believing that it involves a personality change. But whatever it is, I was determined to do as much as I could to support June, her husband Tim and daughter Abi and to make sure she had lots of fun. Since Coronation Street was all-consuming, I retired. At 75, it was probably time to give up anyway! I decided I’d have June stay with me for one week out of every four to give Tim and Abi a break. My plan was to take her out and about and generally do lots of things she enjoyed. It didn’t quite work out like that…

What are the main challenges you face now?

June’s reluctance to accept help is probably the biggest practical challenge we face. Although she does now seem to accept she has dementia, she is determined to carry on as normal, insisting she’s fine and doesn’t need any support. Although I totally understand why she feels this way and agree with the sentiment, it can be very frustrating and worrying. It would be wonderful, for example, if she would accept a little bit of help at home, but she refuses point blank, and I can’t force her.

Physical issues are also proving more difficult than I’d anticipated and have made it more difficult to do the things I’d like with her. She’s been to stay with me a few times, but June gets tired very easily and her movements are greatly restricted. We’re determined it won’t stop us going out for treats but it does restrict us, though she doesn’t seem to mind.

The most difficult thing for me is not knowing how things will develop in the future. Dementia is so unpredictable. I’ve spent my working life planning and organising film shoots and meeting deadlines. But while you can plan a shoot, you can’t plan a dementia journey. At the moment I feel as if I’m in a bit of a fog because I’m not really sure what I’m planning for – or how things will evolve.

Emotionally, the hardest thing for June, and for all of us who love her, is that she is aware of what is happening to her and knows there is nothing she can do about it – that brings me to tears. But we still laugh a great deal and her courage and ability to live with such knowledge and still take pleasure in life astonishes me.

Have any services made a difference?

June has a very good district mental health nurse but I know she’d refuse to consider day centres or other kinds of services yet – it feels too soon.

Have any products or gadgets made a difference?

Not yet, but I know they could. I’m looking for a simpler mobile phone for June at the moment. I’m also trying to persuade her to have a grab rail installed to prevent her falling, and to consider some kind of pill dispenser to make her medication easier to manager. If I can get those sorted out it would be a good help.

Has the experience of living with dementia changed your perception of it?

Definitely, I knew so little about it. For decades nobody talked about dementia. In fact it’s only looking back that I realise my mum, who died a long time ago, probably had it too but it wasn’t discussed. It’s only in the last few years that I’ve realised how many people dementia affects – it’s astonishing.

It’s important to me that something positive comes out of the experience we’re going through. I have just finished writing my first novel The Trial of Marie Montrecourt (it’s set in Edwardian England, nothing to do with Alzheimer’s) and have decided to use any money I earn from the sale to support the work of Alzheimer’s Research UK. In my mind, research is fundamental to understanding dementia. If we can build an understanding of it, maybe we can find a way to control it.

What advice do you have for others?

Know your limits
I’m 75 and I know my friends have been quite concerned about me and what I’ve taken on. I love June and being involved in her care is no hardship but I’m also aware that I have to be sensible. Recently, I decided I was going to take her on holiday and I organised everything – train tickets, accommodation, car hire etc. But as the time got nearer I had a knot in my stomach when I thought about it, and knew deep down I couldn’t manage. I ended up cancelling everything. June just accepted it and didn’t seem bothered at all so I knew I’d made the right decision. You have to be realistic.

Say sorry
I try really hard to be patient but sometimes I don’t manage it and hear myself sounding sharper than I want to. But June does tend to be quite forgiving if I apologise!

What lessons have you learnt?

I’ve learnt that no matter how hard I try I can’t control the dementia journey. I know that I am witnessing a gradual loss of animation in my sister, a person who was always so full of life and joy. But I’ve also learnt that it’s important not to focus on the tragedy of it, to live in the present, not the past, and to be grateful for what you still have.

The Trial of Marie Montrecourt by Kay Patrick (£9.99, Troubador Publishing) is available from www.troubador.co.uk, Amazon, Waterstones and other major bookstores.

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