Belinda Harris-Reid, 52, from Exeter, talks about her mum Doreen, 88, who has lived with dementia for more than ten years.
How did her dementia begin?
Mummy was, and still is, eccentric and utterly creative so when she started suffering from extreme paranoia, hiding possessions and accusing people of stealing we all thought this ‘wonderful madness’ was just an exaggerated part of who she was. Part of her paranoia for safety (of herself and possessions) was justified as she lived in India and Africa for most of her adult life. At one point she even accused me of taking precious possessions and destroying her belongings. Her failing memory meant that she often misplaced things and then accused anyone who came into her house of stealing.
Her dementia really came to a head after my father’s death, in particular her lack of trust and hallucinations. She was so frightened of ‘the people’ in her room that she twice left home during the night wearing flip flops and no coat to find someone to help her take ‘the people’ away. On both occasions this ‘safe haven’ was found in the local supermarket in her village – at 5am.
What happened after diagnosis?
The fabulous psychiatry team and social services took over her care – a care-plan was put in place to make sure she felt safe and a community health worker would visit three times a day to chat with her and make sure she’d eaten, dressed and was comfortable.
How did you tell other people and what was their reaction?
I don’t think anyone was surprised, they already knew. My parents had lived in a relatively small village, right in the middle of the high street, for more than 15 years so the community already realised they were very eccentric. My father was a Professor of English and an amazing artist; a true academic. Imagine tweed jacket, pipe and a beard… well this was my father.
My mother constantly reinvented herself. First she was a jazz singer who recorded music with an Italian swing band for the BBC. Then she went back to college to study fashion and textiles, then to art college and within a few years she’d become an amazing designer and set up her own knitting design company which she ran for 30 years. The skills she had were phenomenal. She was very well loved in the village even though she was ‘odd’ – in the nicest possible way.
What were the main challenges you faced and when did they happen?
Worry. I was concerned about the isolated life she was living. My parents had always thrown themselves into their work and enjoyed doing their own thing. Even though my mother is one of the most charming and social people I know, she didn’t like to socialise for no reason. My eldest sister spoke to her every day and I tried to visit once a fortnight. There were occasions when she was in crisis and the hallucinations started to really frighten her. On a few occasions she wouldn’t let me leave her house unless I had taken ‘the people sitting on her bed’ away. It was sad and scary seeing my mother like this.
When she did finally move to a care home, we made sure her room was as individual as her. It has red shelves, African sculptures, tapestries and pieces of art which are familiar. She’s had such a rich and varied life but her life is getting smaller.
Have any services made a difference?
Her social worker was amazing – and very much on our/the family’s side. He supported us in keeping our mother in her own home for as long as we could.
Have any particular products or gadgets made life a bit easier?
About four months ago I took her some 8mm knitting needles and wool and, despite her frailty and failing memory, she knitted about 20 lines without faltering. But she can no longer do this. Music also helps. We’ve put some of the songs she recorded for the BBC in the 1940s onto CDs and when we play them to her she sings along. Generally speaking though it’s seeing members of her family that always brightens her day. She gets confused who is who, but always knows who my sister and I are.
Any tips for other families or advice you’d like to pass on?
Be brave and be with them as much as you can. Make memory books so your loved one can have a point of reference. Believe them, understand them but try to keep them grounded in the ‘now’ so they don’t drift off into the clouds. They may do hurtful things, act inappropriately, swear, be rude and unkind, but remember they are unwell. Try not to get cross.
Has your experience of living with someone with dementia changed your perception of it?
Yes, I didn’t realise how fluid, erratic and changeable the dementia journey can be. She is fine one minute; lucid and chatty and her perception of time and place/space is as mine. Then she enters complete madness; talking incoherent nonsense, with no understanding of the here and now.
I know that dementia is eroding my mother’s personality and she will eventually fade away from her magical creative self. This will be hard… There may come a time when she does not know who I am. And I cannot imagine what this will feel like. But I hope that when this time comes, whatever thoughts and dreams are rolling around her brain they are making her smile.