My mother once thought I was Davina McCall.
At the time, she was in hospital, and the TV must have been switched to Big Brother, or somesuch. She pointed at the TV and said, “That’s you, isn’t it?” And I laughed and said, “Yes!”
Our GP had diagnosed my mother with MID – multi-infarct (or vascular) dementia – which is a series of little strokes that make parts of your brain shut down. She would have moments of complete clarity interspersed with complete confusion. We’d only realised something was very wrong when her neighbours called to say that she’d called round in a confused state, but in hindsight the signs had been developing over a long period.
It is the hardest thing, to see this happen to a loved one. Particularly a mother who was a bright, intelligent woman. Her ‘eccentric’ ways, as she got older, were something I read as just a development of her personality, but in hindsight, they were small signs of what was to come. I remember her coming to visit me when I lived in Brighton in the ’90s, and how our roles had now switched. As we walked around, I had food and water in my bag for her, and ensured there was somewhere nice for her to sit down now and then.
I was embarrassed when two good friends spied us on the seafront, and I didn’t want them to speak to us. I knew my mother ‘wasn’t right’ but didn’t know how to deal with it. Then on the way home, she got off at the wrong coach stop and there were frantic messages between me and my siblings as to her whereabouts. She was found by National Express, sitting quietly at a coach stop, miles from her destination. I still feel sick about that moment. She shouldn’t have done that trip by her self, but at that time, I was still wondering why not.
When the diagnosis came – and let me tell you that getting your mother to the doctor to be tested for something she doesn’t know she has is a challenge – then it made it easier to deal with. It’s amazing what happens when a thing is named. When a thing is named it comes with a set of characteristics and a clear set of actions. She would have to go into hospital to be properly diagnosed, before being placed in appropriate care. We would have to take her there, leave her there. We would have to visit her and find her wearing someone else’s clothes…
You have to find a way through it. A way to cope. And the way we found, my sister, me and my mum, was a way to laugh at it. Together. Whether it was Davina McCall or the small white fluffy things she ‘saw’ blowing across her bedroom floor, we laughed at them together, sometimes until we cried. We found that correcting her only made her upset and more confused. But if you went along with the fantasy, magically the whole thing became easier.
Last night I went to see David Baddiel’s one-man show about his parents: his sex-obsessed late mother and his father who has dementia. His way of coping, he said, was to find the humour in it. In the fact that his mother copied him in to sexy emails to her lover, and that his dad called his loved one ‘c*nts’.
I found myself nodding and clapping as he spoke about how weird it was to hear your parent being asked by a doctor who the prime minister is (it’s the first question on the dementia test), how he found himself apologising to friends when his dad said something inappropriate, or his inner fear of being a victim of dementia himself.
Baddiel is of an age where perhaps you have more life experience to cope with it (53) but I was 31/32. No one of my acquaintance was dealing with anything like this, and I think that’s why I wanted to hide it away from them. They were all having babies and I was on my second parental decline. It was all out of sync and I wanted to hide in my south-coast life and ignore it. I’m ashamed to say that I hid in it for as long as I could. I kept my home visits to a limited number and a limited time. I counted the hours before I could escape south again. I know I’m not the only person to have done that but that doesn’t stop the guilt.
Recently there was a Twitter thread involving acts of kindness people had witnessed in their lives. Mine stands out clear and strong. During that time, my oldest friend, Coreen, visited my mother every Saturday, almost without fail. She dropped in to have a cup of tea and a chat. She must have seen my mother struggling, surrounded by ‘her things’ in one room. She understood, she didn’t judge, she was just present. She was more present than I was. I will never forget her kindness and I dedicate this post to her.
When my mother was taken into a home to be looked after, she thought it was a hotel. She talked about the other ‘guests’ and the staff as though she was on holiday. We played along. She ordered tea in her room and told us what she thought of the food in the ‘hotel’. We laughed together. She’d look at me as though she recognised me, then once again I was Davina. I could see the switch happen in her eyes.
Thank goodness for the laughter. Even before she became ill, I remember us all laughing together. At my mum’s habit of gently reaching out to touch the petals of a beautiful flower in a landscaped garden, only to see the whole thing collapse on the ground. And the time she accidentally tried to take £1000 out of an ATM in Southport because she couldn’t use the keyboard. And the classic: the time when she asked the waitress in a cafe in a boat on the North Wales coast, if she ‘had any waffles?’ but pronounced it to rhyme with ‘raffles’. She had put on her famous posh phone voice and we laughed about it years later.
We were used to laughing together and it made sense for us to do it later, when she was struggling the most. It’s a case of taking all the anxiety away – for all concerned. She was only in the home six weeks before she died. I’ve always thought it was because she had nothing to worry about any more. Other people were finally handling everything.
Baddiel ended by saying that his show was a kind of funeral speech for his mother – that her Jewish ‘Shiva’ didn’t allow for speeches, and on the day itself, everyone just shook his hand, wished him ‘long life’ and said what a ‘wonderful woman’ his mother was. In his show, he wanted to show the full extent of how ‘wonderful’ she was and it’s fairly warts-and-all. It’s darkly hilarious.
At my mother’s funeral, I stood up and said something, but it was a poem, and quite appropriate given the subject of this blog post. It’s Death Is Nothing At All, by Henry Scott Holland, and he says:
Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me.
The more I look back on that time, and the years before them, the more I see and hear that laughter. I heard everyone in the theatre laughing last night, knowing that it came from a shared experience. I felt alone at the time it was happening but so many people experience it. It’s one of life’s great taboo subjects, but we are talking about it more and more, not only because of Theresa May’s ill-advised ‘dementia tax‘ or the threat of it looming over an ageing population.
I’ve toyed with writing about this subject for years now, not quite able to find a way into an intensely personal experience. It wasn’t until I saw Baddiel on stage last night that I found that way, and let me tell you that seeing a man ‘share’ as he does is simply incredible. We’re used to women doing it, but not men. He’s turned it into a comedy show, but really it’s a very funny, and tragic, live blog.
So I’m committing the laughter to the page and not hiding the darkness that comes along with it.
It’s time we talked about this.
Dedicated to: the NHS, Age UK (who were so helpful and reassuring when I phoned them out of my mind with worry), my wonderful friend, Coreen Ellis.