Daughter calls for change in law

When I was asked to share my experience of having my mother in a care home during the pandemic, one thing I realised is that we don’t really have the words to explain why the right to be in the presence of a loved one is so vital. Before the pandemic, being able to spend time with the people we love, whenever they needed us, without needing to be granted permission, was an aspect of life so unremarkable that it didn’t even need a name.

Since the pandemic, for the weakest and most vulnerable members of our society, this has transformed into a right to be fought for. And so, we have to find a name for this basic aspect of being human, and a new vocabulary to justify and explain why it is so important.

Ann speaking at our event in Parliament in March © PA Wire, Stefan Rousseau

This is my experience of having my mother in a care home with a CQC rating of ‘Good’ during the pandemic.

Mum was a very independent, private person. Her home and her small circle of family and friends were her world. I saw her every day at home. When she was 95, after six months of hospital admissions, she lost her ability to stand or walk and was assessed as needing 24 hour care.

The regulations at the care home she was transferred to meant I was not allowed to be with her on the journey from hospital, or to be with her when she arrived there. I couldn’t help her make sense of a strange place and routines. I couldn’t support her to make new relationships with unfamiliar people. Nor could I help her to adapt to the new physical reality of not being able to do anything for herself and being dependent on others.

If I had been able to be with mum in the care home when she needed me, we would have both had a much better experience of her last months of life. Initially, she could only see me for short, socially-distanced visits in the care home garden, until covid cases in the community soared and visiting arrangements were stopped altogether.

Mum used her mobile phone to contact me up to 30 times a day. When she rang to say she needed help or was in pain, I could only respond by telling her to use her call bell, or by ringing the staff myself to pass on requests and to find out how she was. I couldn’t even do the small things that she needed – making sure she had the right glasses, tissues, clean nails, putting an extra blanket when she felt cold. This was so frustrating that sometimes I felt I could cry.

The staff insisted that mum should be telling them what she needed, rather than ringing me. She came to believe that if she complained to me, and I passed this on to the staff, she would be in trouble. Her sense of isolation was increased by the thought that I couldn’t help or advocate for her.

When restrictions allowed, I tried to arrange visits with mum in the visiting room. While it was wonderful to see her, the visits were harrowing. Mum was tired and sitting in a wheelchair was painful for her.

In fact, if mum knew I was visiting, she would ring and beg me to cancel the visit because she did not feel well enough to get dressed and sit in her wheelchair. The care home’s solution to this was not to tell her that I was coming.

My request for Essential Care Giver status was denied. I was told this was only intended for situations where the presence of a relative was required to deliver essential care. When I said that this was not what the guidance stated, the care home manager insisted that I was wrong and issued notice to leave. The manager proposed a regime of strictly monitored, time limited visits, with no opportunity to extend these unless mum was assessed as end of life. She was always upset and cried when I came, and then begged me not to leave her when the 30 minutes were over.

Mum was never assessed as having reached end of life and she died a week before the notice to leave was due to expire. Sitting with my mother’s body was the longest time I had been allowed to spend with her since she had entered the care home sixteen months before.

Although there are almost no words for such a loss, my mother’s experience has made me want to find the words to call for a change in the law.

Ann Ablett