It might sound harsh, but I’m not sure I valued my mother very much. She was a great cook and a wonderful old-fashioned homemaker. She was kind, thoughtful and loving. I didn't really know who she was when I was younger, I don’t think I valued her till the end of her life. I don’t really know what I thought of her, I just accepted that she was my mum, we got on fine, but it was just not very connected.
I think I was about 50 and my mum was about 80 when she was diagnosed with dementia, She had been showing signs for a couple of years before it got really difficult. But I didn't realise that. I knew nothing about dementia in the way I do now, I didn't understand what I was seeing. My mum was confused and mystified about what was going on around her, and I felt a deep affection for her. She was my mum, and I felt very anxious on her behalf. My father who had been a fabulous doctor, turned out not to deal very well and was challenged by her dementia. She had been a very good looking and attractive younger person when he married her. But now she was someone who wet the bed every night and couldn't remember a thing from one minute to the next. It made him very frustrated and inpatient. That was very difficult for my mum. Obviously, she wasn't doing it deliberately but because her brain was damaged.
I saw her as an older person who was very frail, I saw how lonely she was and how challenging everything was, I would help anybody in that situation. I wouldn't want anyone to be in that situation, least of all my mum or my dad. I became more involved in her care. My dad had old-fashioned ideas about dementia and how you should look after people, which we would argue about. He wasn't coping well himself, he was in his mid 80s; he said he couldn’t do it anymore. My mum needed to be better looked after, she went to live in a care home but then after a couple of years my dad died quite suddenly, and she was left on her own. We moved her to a care home closer to us in London. As her dementia deepened I got to know her and our relationship grew and developed at the same time.
Emotionally it was tough. Seeing the person lose their cognitive ability and seeing a person treated in a way that way that might be inappropriate, condescending or patronising – or even just plain cruel, is something that I have real issues around. I wanted her to be valued, to feel secure and safe, to feel significant. She had brought up four children; she had been a fantastic wife to our father. I wanted her to feel there was some purpose to her life, that she could feel that she had some continuity in her life, because these are such important things. I didn't feel that she was really being offered that by the circumstances she was living with at the time. I wanted to make up for that and embellish her life.
After my father died and she moved to the care home in London, I was worried she would feel completely marooned. We chose a care home and decorated the room with lots of her things from home – furniture, furnishings, pictures, ornaments, even her old, handmade bed cover, so she would have reminders of who she was and the place she had created herself and had come from.
Unfortunately, after a couple of years and an ‘incident’ in which she was found in the local newsagent, the home said they couldn’t care for her anymore. As her children, we were devastated – she had been so happy there. The third home she went to was a dedicated dementia unit. They were kind and did their best, but her condition was deteriorating and it never quite delivered the same for her or us.
I wanted Mum to feel she was a real person with rich life experiences, despite the dementia, all the way through to the end of her life. I had made up a pictorial album about her life story in chronological order with pictures of her as a little girl, growing up, getting married, having children, grandchildren and great grandchildren – her history. Big captions on each page, like 'this is me dancing', 'this is me with Jack and Ted', gave her a way to explain who she was to people who didn't know anything about her – and perhaps to herself as well. It played an important part in her care and we often looked at it together.
Two or three days before she died, we looked at it together. By now, she was bed-bound. She could not speak anymore, her swallow mechanism had failed and she had pneumonia. She was very ill and dying. But I was able to talk to her about the pictures and describe them for her to remind her of her life, “here you are with dad standing in the doorway of the church getting married and looking so happy,” “here you are in a funny ballet dress, dancing in the garden” and so on. After we had looked at it together I put it gently on her stomach. She wrapped her hands around it and gazed at me with real meaning in her eyes. In a way, it was as though she was saying 'that's me and it’s mine’. It was very moving and a very important moment because I knew finally, through my interest in her, we had found each other.
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