‘I’ve learned so much about dementia’

What made you write the book?

I wrote the book after years of caring for my mum, Hazel, who had vascular dementia. She was diagnosed in 2009 and I had no idea how to provide appropriate care, where to seek help and support or what help might be available. I didn’t understand dementia very well at first – like a lot of people, I assumed it mostly affected memory but I later realised the effect the disease has on mood, behaviour, judgement and thinking. I learned a lot and felt that my experience might help others in a similar situation. It’s the book I needed back in 2009, when mum was first diagnosed and I didn’t know what to do or where to turn.

 

How do you think it will help others affected by dementia?

The book has lots of advice including how to get a person’s affairs in order, Lasting Power of Attorney, how to plan for the future and how to deal with challenging behaviour and unpredictable situations. Dementia affects everyone differently but it’s best to be prepared and plan ahead as much as you can. You can’t plan for every scenario and many things occur that you can’t always predict, such as the person getting locked out or waking up and thinking they must get up for work when they’ve been retired for years. However, you can plan for the future in terms of what care the person might like and where they might live when they can no longer live alone.

 

What are the key chapters in the book?

There are chapters on choosing a good care home and what to look for when you visit a care home. That’s not say a care home is the only option – the book also covers choosing home care agencies and how to access the right support you need.

 

What do you think are the qualities of a good carer?

Time, patience and understanding. All of the qualities I lacked when I first began caring for my mum! I’ve always been career-focused and the diagnosis was a shock, but caring for my mum changed me and my priorities – it made me more patient and less selfish. In the end, I enjoyed our time together and caring for mum was immensely rewarding. Seeing her smile when I arrived to take her out for lunch or went to visit made all the difficult days worthwhile.

 

What advice do you have for carers?

Seek help and support and don’t do it all on your own. Get used to repeating yourself and don’t make the person feel inadequate if they keep forgetting things. Encourage the person to be as independent as possible – the more they can do for themselves the greater their self-esteem and confidence. Don’t try and do everything for them or you may destroy their confidence.

 

What were the hardest challenges when you were caring for your mum?

Living an hour away from mum and knowing I couldn’t be there every minute of the day because I worked full-time. I arranged for carers and a cleaner to come in and enlisted a team of trusted people to support her needs. It worked but I would rather have been closer. In the later stages of her dementia, I moved her into a local care home where she received good care and I got to see her daily. Those visits meant a lot to both of us.

 

Did anything surprise you about your mum’s dementia?

There were some dark days – one night she rang me and said there were strangers in her living room drinking who wouldn’t go away. It turned out she was watching a TV show where people were at a party and she thought those characters were real people in her living room.

She often used to call me and ask where my father was and forget that he had died. That was hard for both of us and in the later stages I tried to change the subject when she talked about my dad rather than remind her of the truth and watch her grieve again. It usually worked.

Dementia Care: A Guide is published by Sheldon Press and available now on Amazon and in all good book stores, priced £7.99.