V.E.R.A
Getting under someone's skin
Hello there,
How are you? Going anywhere nice for your holidays? (says the hairdresser snipping away in my brain). I’m at the start of packing my small mustard-coloured suitcase. So far, a travel kettle and eight peppermint teabags are sat at the centre, along with my best comfy black bra. You see I’ve started a new novel and it’s partly set in Lesvos. I’ve got the main character, but now need to go where she goes, and see what she sees and then record it. I call this ‘method writing’. It feels natural to me as a writer/performer. This is where I get under the skin of a character, lending myself to their emotions in real time. I figure out what their struggles are through walking around. Calculating their being as they move through the air, and drawing on personal experiences to understand how they might react.
Learning more about this empathic approach to life is where I’ve spent quite a few hours lately. Last year I was added to the waiting list for a dementia training course. When mum’s situation worsened, I had spoken with an advisor at the charity MIND. She gave me all sorts of support, plus advised me that mum shouldn’t have to pay council tax, since she lives in the one room. Mum even got a refund, and this really helped with the carer costs.
The course was about how to see the world through the eyes of someone with dementia.
‘So, we all have identities,’ Margo the instructor said, introducing the session. ‘Now I’m going to tell you something about me: I like wearing colourful clothes and I LOVE David Bowie.’ Her dress was orange and her stomach pushed it forwards in an interesting sag. Over the next three weeks I would come to admire Margo. How she’d arrived at working in mental health after having been a teacher. She’d had one breakdown ending up in hospital, but then been well since. Margo turned out to be funny and outspoken and slipped in things like how she reckoned Donald Trump was mentally ill, how if you weren’t bright before getting dementia, you certainly wouldn’t become Einstein at this point. You carry elements of your personality through, in spite of this disease.
I learnt interesting things like, how even with 24 hour wrap around care - the dementia will take the person at its own speed. However much you support someone, however much love you provide, all the caring in the world doesn’t mean it’ll slow the person’s decline. But how you spend that time with them will affect them. Dementia is an umbrella term. It is a disease which creates mental illness. It was here I learnt my mum was mentally ill. So now, when I get the twentieth call from her, I understand how it’s the fairy lights of her brain which in mid-flicker.
Margo introduced the idea that we shouldn’t tell people with dementia they have dementia. There is no need to bring it up. How can someone with a mental impairment be rational about their mental impairment. I thought of Mum. How sometimes I said things and she dipped her head and looked sad. How I was making her sad by not knowing how to speak with her. And it’s the feelings which matter the most, not whether someone can remember a date. They remember if they are scared, or being told off, or if they are wrong about something. Whatever they are saying, or believing, is true for them. The emotional memory is far stronger than the factual memory.
After the first session was over, I went to see mum, but she was having a bad day; turns out it was low sodium and a UTI. I had a total of 48 voice messages that day and I was very sad about all of it. It felt like it would be this way forever.
The following Thursday mum was doing better. Now on sodium tablets and a low dosage for the UTI (n.b. just these two things will cause vast confusion -delirium - on top of the vascular dementia/Alzheimer’s. Though it is not dementia, it presents as confusion which I mistook for mum’s illness). I arrived at the MIND centre a few minutes late for the session. After I pressed the buzzer, the receptionist took her time to open the door. Today she was dressed in a white shirt and black skirt and moved like a surly waitress.
Margo handed me my sticker with KAREN written on it, and I pressed it to my bosom. I have always liked school, so I took to my chair comfortably. As we went round the room, everyone said what their week had been like. Many have had problems. One lady Pat said her husband was wandering at night and kept saying there was an old man in the room. It turned out that the ‘old man’ was his own reflection in the mirror. He hadn’t recognised himself, as he imagined himself as a much younger man. I decided to find something more upbeat to disclose. I shared the story of how when I visited mum, the pink carnations on her table were disturbing her. I’d had several phone calls about them. Some of the flower heads were drooping and discoloured. The week before Margo had suggested we try to remind people of who they once were. Not rush in and say, ‘Oh I’ll sort that out for you’, taking their agency away from them. So instead of me chucking out the flowers for her, I brought the vase over to mum’s chair. I suggested we pluck the dead ones out together.
This mother of mine who sometimes didn’t like to use her hands lifted them and perused each flower for decay. Then she dropped a few in the bin. At the end I said, ‘Don’t they look lovely? We’ll get a few more days out of those.’ She smiled right into me. ‘They do,’ she said. ‘They are lovely.’
Margo taught us V.E.R.A. This is life changing, and something I wish to never forget, so I’m going to share it now with you:
V - Validation - Listen to what someone is saying. A person with dementia might not have the correct words for what they wish to convey - it might be in a code which you need to unpick.
E - Empathy - Simple, right? Or maybe not - perhaps do the opposite of what our current government would do, and you’ll be on the right track.
R - Reassurance - To help get rid of uncertainty and reduce anxiety.
A - Activity - Let’s have a good look at these flowers together, shall we?
On the way home from the third and final session with Margo, I dropped in to see Mum. Sitting on the pouffe, I dropped down to speak with her at eye level.
‘You’ve a hair,’ she said, moving a loose strand hanging in my eyes, to one side.
‘We’ll do your hair soon, won’t we?’ I said, surmising that she was thinking about her own hair, and unable to ask me to do it. Then thinking about V.E.R.A, and mindful to not bring up anything she could no longer remember, like going to the hairdressers, or having a perm, all those stories we would usually go to for a laugh, I said, ‘You’ve always had good hair, just like Aunty Hilda.’
She touched the waves of white curls which ran above her ear. She smiled into herself like a girl being told how beautiful she was.
‘I do have good hair, like Aunty Hilda,’ she repeated. Then she beamed a toothy smile, and I blinked it into me, bathing in it. The mood was love; just for a moment. No need for a time, or a date, or a ‘do you remember when…’ There is very little past here, but the memory can be about loveliness.
Thank you for spending time reading this.
Write soon, be well.
Karen xx
P.S. For more on ‘method writing’ you can read about it soon in a post for paid subscribers. For as little as five pounds a month, you’ll be keeping me in pens and power, plus getting access to the extra special material.