When I started dancing in primary school, I had dreams of looking like the older girls I used to watch doing ballet in the playground. But my mum Gloria – who was always my harshest critic – used to call me “banana fingers” when I practised, because she thought my hands looked more like a bunch of fruit. This is a perfect summary of her character: she was always my biggest supporter, but she never shied away from saying things exactly as they were. She wasn’t pushy, but she firmly believed that her daughter was the most talented person on Earth. I will always be grateful for that.
So it breaks my heart to see Mum isolated in her care home, with no visits from family and friends. She is 87 and needs round-the-clock care for dementia; I’m growing ever more aware that she hasn’t got much time left. I haven’t been able to give her a hug since March due to the ongoing visiting restrictions, and I’m terrified that her condition is deteriorating. Now, I have joined forces with Rights for Residents, which is calling on Parliament to pass emergency legislation that enshrines in law the rights of essential family carers.
I always thought Mum was a frustrated performer. She grew up in a poor family in Ipswich, Suffolk, so there wasn’t much opportunity for her to break into the acting business. Instead, she trained to be an English, drama and film teacher after I started school. She was always immaculately dressed, and the children used to wait for her at the school gates just to see what she was wearing. I still get stopped by people in the street in Ipswich to share memories of her back then; once, when I was at the Olivier Awards, a lady came up to me and said: “Your mother taught me drama, and she is the reason I’ve got an award today.” Hearing that made me very proud of who she was.
She was also a very complicated woman, and there were times when she wasn’t an easy person to be around. She suffered from depression, which meant she was often up and down. It was a rollercoaster, but as a family – Mum and Dad, me and my three sisters – we all clung on for the ride because there was so much love there too.
We realised she was experiencing the onset of dementia five years ago. She started to take less pride in her appearance, and would wear strange clothes. Sometimes she went out in her nightdress, which was entirely out of character; she also started to get increasingly anxious when my father was out of the house. Some days she would ring me to ask where he was, even if he had only been gone for an hour. As her condition progressed, and Parkinson’s also began to ravage her body, she had a series of nasty falls and cracked her head open three times. This broke my father – I remember his face being white with pain. He had to get up with her in the night to make sure she didn’t fall, which meant he wasn’t sleeping properly, and soon he became very ill himself.
No one wants to put their relative in a care home, but the special care Mum required meant it was our only choice. It was particularly devastating for my father, because he desperately wanted to be the one to care for her. Before lockdown, I would visit three times a week with two of my sisters [Noel, the joint eldest, took her own life 12 years ago]; now, our family time was spent in the care home.
We all live busy lives, but the weekly trips to see Mum were a time when the three of us came together as siblings. We would bring her puzzles, show her photographs, paint her nails and take her to a local café for food and sometimes a sneaky G&T. These visits made her feel very special. On other occasions, we would dance; I’ve lost count of the number of times that I danced with her in the communal sitting room. But touching was the most important thing for Mum: she would smile when I massaged her feet, or stroked her face. When you have a relative with dementia, you are their eyes, ears and memories. It hurts to think that she is locked inside her home, thinking that we have all abandoned her.
After lockdown restrictions were first announced in March, there was an outbreak of coronavirus in the care home where Mum has lived since 2016. Sadly, 13 people passed away and the rest of the residents were placed into isolation and confined to their rooms 24/7, with occasional visits from one of the carers. I think the four-month isolation period caused my mother’s condition to decline rapidly. Before March, she was able to walk with the help of a frame, and talk. Now, she doesn’t speak, aside from the occasional word, and she has to eat with her food mashed up. Like so many others, I’m terrified that she is going to give up and stop eating because she isn’t getting the stimulation that she needs.
My father sadly passed away from heart and kidney failure in April last year, which I think had a big impact on Mum. We told her over the phone and she was incredibly sad – that was the last time I remember us having a proper conversation. We were only allowed a gathering of six people outside to commemorate my father’s life, which Mum couldn’t attend. She must have been so devastated by both the loss and our inability to be there when she needed us.
On our most recent FaceTime call, she just stared at the screen. She didn’t even smile, and she seemed to have no recognition of who I was. On the really dark days, I worry that she is dying. I live in constant fear that I’m going to get a call telling me the worst. It’s like walking around with a lump of grief that I can’t shake off.
URGENT ACTION needed please tweet and tag your MP in this link below and ask that they give their support to this law - thank you to @HarrietHarman and @leicesterliz for supporting us #essentialfamilycarer #rightsforresidents https://t.co/uf32u7WsWI
— rightsforresidents (@rightsforresid2) February 3, 2021
Visiting rights in care homes are a postcode lottery at the moment: at Mum’s care home, in-person visits are allowed but they have to take place behind a perspex screen with the same visitor each time. When someone has dementia or Alzheimer’s, these visits can be incredibly distressing – it feels inhumane. On previous visits, she has become very confused, as she doesn’t understand why we can’t hold her.
The answer to this is the vaccine, and Mum has only just received her first dose. The average life of an elderly care home resident is just two years, and the more she retreats into herself, the more it feels as though time is slipping away. Through my work with Rights for Residents, I have heard so many devastating stories of elderly people who are just giving up and dying of loneliness.
It doesn’t have to be this way. Rights for Residents is campaigning for there to be two essential family carers who could always visit regardless of restrictions – it’s happened in Canada, so why can’t it here? Even a couple of hours a week would be enough. I couldn’t live with myself if my mother passed away thinking that I didn’t fight for her.
Rights for Residents is calling on Parliament to pass emergency legislation that enshrines in law the rights of ‘essential family carers’
As told to Alice Hall