Heart-breaking isolation of both parents

My father, Charles, who until recently was living reasonably independently at home in Battersea, has full capacity but suffers with Parkinson’s.

Throughout, I have I supported him in many ways by doing his weekly shopping, organising appointments, arranging prescriptions, cutting his hair during lockdown with the dog clippers!

Last November he went into hospital for three weeks, I was able to see him twice, once discharged he was so weak, he decided to go for some respite care. Sadly, he was admitted to hospital for another four and a half weeks, this time the hospital had a completely closed-door policy. After much chasing, I did get into to see him (they wanted my help to discharge him). Hospitals are scary at the best of times. All my father wanted, as any of us would, was someone to be with him, to listen to the doctors, for someone else to hear what they were saying, to get things he needed. They lost his glasses, at a time when he was at his most vulnerable. Supporting my father was forbidden. This dreadful experience has had a severe effect on him both mentally and physically.

His deterioration is frightening, he is now in a care home again, he is incredibly weak, unable to walk and not wanting to eat. The mental and physical toll of his recent lonely, traumatic experience.

My mum

For long periods over the last two years of mum not seeing me, to her, was unexplainable.   She was diagnosed with Alzheimer’s 12 years ago at the age of 64 and has been in her care home for 6.5 years. To suddenly not see that person whose voice makes you laugh, who makes you instantly relax, who you know you know but is then not there. What was she thinking? Do you not like me anymore? Have I done something wrong? My mum may be immobile and now completely non-verbal, but she still has feelings, she still has emotions and she needed to see her family.

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

On March 12th 2020, I went to see her as normal, I walked in, said “hello my mumma”, she went bright red burst our laughing, her eyes sparkled, she rubbed her hands together and said “mummy, mummy mummy”. I helped her with her lunch, talked with her, held her hand; we communicate using other senses. This would be the last time I would see her properly for 365 days.

From March to May 2020, I could understand the need to protect residents, care homes were doing their best in difficult circumstances. But as the country opened up, all my mum was getting was a two minute skype call, not that she understands what that is. Mum relies on close presence and touch for communication; digital technology does not work. There was no privacy as a carer had to set up the call, hold the device and repeat what I was saying to mum to try and get her to engage.

From July to October, she saw me three times, in the garden five meters apart, I was in full PPE. She had no way of communicating with me, could not hold my hand, could not see me. Mum was not mum, no sparkle, no laughing, overgrown hair, very pale, no idea I was there. Can you imagine, being put outside, having been told someone was coming to see you and then not being able to see them properly?

The next five months were the darkest; the care group, despite government guidance, simply ignored it. They felt the guidelines were not robust enough, they wrote, telling us they have added their own additions. They refused to accept the testing, they would/could not find out what a substantial screen was, no individual risk assessments were done, certainly no mention of essential care giver, it is after all guidance not law. What mum and I did get was humiliation, I was “allowed” to stand and look at her through double glazed doors for 30 minutes. I just stood there, looking at an embarrassed carer holding her hand as she shouted out in distress.  We only did a couple of window visits, my anger too great, and more so the distress it caused mum, too upsetting.

March 11th 2021, 365 days after I had last seen my mother properly I was finally allowed a 30 minute supervised visit, again no privacy. With mask, apron, gloves, test complete, oxygen levels and temperature checked, I was escorted into the conservatory and asked to sit in a chair, mum was then wheeled in and placed next to me. I held her hand and said “Hello My Mumma”, she went bright red, her eyes sparkled, and she burst out laughing and crying at the same time, she shrieked in delight and laughed for 30 minutes. I wonder where she thought I had been? The carers were amazed, I was not – it was all she wanted – to see me. She remembered me, which must mean she missed me.

The care group have never really acknowledged the essential care giver status. They said yes, but when it came to their first lockdown, for 10 days they closed to everyone. I reported this to the CQC, spoke to public health, exchanged emails with Head Office, they eventually acknowledged that I should be able to go in. So now, in our fourth lockdown, my mum and dad can see me. But I know that this can be taken away at any time. I still have to make an appointment, put on an apron, gloves, and mask, have my temperature taken – oxygen levels were stopped last month and ‘Covid risks’ mean I STILL cannot take flowers, home cooked food, my dog.

So, I ask, on behalf of myself, my parents, and thousands of others, when you leave here, when you return to your families, your friends, your constituents, remember today, think of tomorrow, at any time any one of us could need care, be it ten years, two years, next year next month, tomorrow – we will all know someone or will need care ourselves. We need to know those who mean the most to us will be allowed to be there for us, at a time when we are most vulnerable and frightened. The isolation both my parents have experienced has been horrific, their deterioration heart-breaking.

Kate Meacock

Speaker at ‘Guaranteeing the right to maintain contact‘, Parliament, 9 March 2022