Frances’s Story

Sep 30, 2020 | Stories

My sister Debbie is 54 and is mentally disabled. She lives in supported living accommodation and before lock down in March she was very happy and settled and has amazing carers. 

 Debbie would come to visit me in my own home or we’d all go to mum’s – usually for a small party occasion.  She was also involved in a lot of activities organised by the Home including; attending a music club, swimming and cycling. She also loves going to the theatre and the carers arranged to take her on regular days out such as shopping and eating out. 

Prior to the pandemic we would visit her at the Home two to three times a week and so her life was quite full.  My mum is 74 and having trouble walking but despite this she would also visit as much as she could.  Debbie’s life as she knew it, changed dramatically when visits to the Home were banned in March, in line with the national lockdown.

When restrictions finally eased, we were allowed to see her again in her garden. We had 5 or 6 garden visits which she loved. We sat socially distanced, played music and laughed a lot. 

My friend joined me on these visits but mum only managed to do one as it’s just too hard for her at the moment. Equally, she wasn’t allowed to visit us in our own homes and so mum and daughter remained separated.

Now that we’re back in a local lockdown the garden visits have been stopped outright. The separation has had a huge impact on Debbie – as she has challenging behaviour – and the lack of contact with her family is making that worse. I heard her screaming when I was on the phone which was very distressing. If we have to go without seeing her for god knows how long she’s going to think we have left her. She’s never been in a situation before where she’s unable to see us regularly.

The new local restrictions prevent me from even going to stand in the car park – four metres away – while she comes outside.  Debbie really likes to be cuddled and we have no way of knowing how much the lack of physical contact is affecting her as it’s certainly affecting us. I’m proud that she’s trying to adapt and understand why we can’t visit and that people are trying to keep her safe.

Before the latest local lockdown there was talk of us being able to sit in the open doorway of her Home in Winter but now that seems a long way off. She still has the carers, her colouring books and TV and my video calls but she desperately needs her family and we need her.

Debbie’s  mental health is deteriorating. Why should she be locked up away from her family when carers are allowed to see up to six people each? That amounts to about 40 people the carers can mix with and so why can’t my mum and I see her? Mum is missing precious moments with her daughter and Debbie is missing her terribly.  It’s unthinkably heartbreaking. It’s as though the mentally disabled have been forgotten like they don’t matter. Well they do!

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Help us end isolation for care home residentsSupport “Gloria’s Law”

As the Ambassador for Rights for Residents, West End performer Ruthie Henshall is campaigning for “Gloria’s Law”, in memory of her mother who passed away this year, after witnessing her decline from the other side of a care home window.

If passed this would ensure every resident has the legally enforced right to the support of an essential visitor, who could support them in all circumstances.

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