A letter to my MP

I’m a woman in my fifties with an older sister with Down’s syndrome and a 92 year old mother who recently broke a hip. My experience of residential care is long term where my sister is concerned and more recent where the hospitalisation/nursing home care of my mother is concerned but in both instances, I can see, and others re-enforce that the current barring of visits from loved ones is having a hugely detrimental effect on people’s mental health – an effect that goes far beyond an easily dismissed ‘well-being’ impact into the difference in my mother’s case between recovery and rehabilitation and terminal decline.

My sister’s care home closed to visits in March 2020. Prior to this she had come home to my mother and me once a month for a weekend and we came to her and once a fortnight we took her out for lunch and a walk around the shops or to the park or garden centre. We’re a unit of three, a very small family – there are no further relatives – and Christmases and birthdays have always been spent together.

Since March last year my mother, currently dying, has been able to see my sister only once, when my sister had a seizure out of the blue and we were both able to visit her briefly in hospital. Since then my sister’s had two further fits and I saw her very briefly before Christmas, my mother by that time in hospital, where we both cried a little and I held her hand (illegally, no one else was in the large hall set aside for full PPE visits) and sang Beatles songs with her and told her we would all be together and we would see her soon. Leaving caused us both enormous distress. I speak to her now very regularly on the phone. She listens, she’s more or less non verbal. I tell her my mother is very ill but that we both love her very much and want to see her. I dread having to communicate my mother’s death to her without being able to hold her and re-assure her that not everyone has left.

When we are well and non-disabled – and autonomous in our choices – the lack of a visit and interaction may cause some sadness, when we’re very ill and disabled and dependent the lack of a visit may cause us to lose all sense of self, reality and hope.

My mother isolated diligently for most of last year, losing all connections with groups and activities which at 92 are so important, her role interaction source was me and she really struggled with the ostracisation of lockdown. A bright and fairly independent woman who still drove and scoured the papers and news channels everyday to try to get a handle – as we all have – on what this pandemic is, and what it means.

On December 4th I found her on the floor, she’d had a fall and broken her hip and was taken to Hastings hospital 20 miles away. I saw her into the ambulance and told her I’d be following right behind. I wasn’t of course because I wasn’t allowed to come to the hospital and now, two months later, I’ve finally had a ‘one off’ visit to the nursing home where she’s now very frail , confused and in decline. Surviving C19, which she contracted in hospital, feels to her I think, an empty victory.

Throughout these past two months I’ve battled to get mobile phones in to her, to find anyone who can assist her to use them (her fingers are arthritic and she struggles with technology) and I’ve listened as she she’s despaired more and more on our fleeting calls where she’s cried ‘I just want to see you? Why can’t I see you?‘ and I’ve tried to keep spirits up and urged her to eat and get stronger and keep healing and pushing onwards but sadly I think her heart’s now broken as much as her body and currently she doesn’t want to talk, just to sleep and to be left alone.

This is a snapshot of what’s happening out there.

Talking to care professionals its clear that the pain and suffering inflicted due to separation is causing people extraordinary damage. The manager of the home my mother is now in told me that recent admissions she’s received of elderly people from hospital, all of whom were previously fitter people who she would expect to recover well, now come to her home with severe mental health issues, confusion and depression. She told me that she’s been very shocked by the impact of isolation and the after effects of being on Covid wards in hospitals. Talking to my mother’s new GP (assigned by the nursing home) he told me that the hardest part of his no doubt extremely challenging job is dealing with the repercussions of isolation and loneliness. He said it breaks his heart and he choked up a bit on the phone when he said it. Very unusual, for a doctor.

I’d like, for everyone with loved ones in hospital and residential care and nursing homes and particularly for those people themselves, for their welfare entire to be prioritised. We are not just our bodies or our conditions. Health is rooted in communication and links with family and in an anchor in a world beyond illness and incapacity. I’d like to suggest that every hospital and care home has a fully resourced post holder who can support interactions properly and fully with families and friends. I’d like the homes and hospitals to be supported to facilitate these visits, for insurance issues to be dealt with at governmental level and for all barriers to visiting by family members removed immediately.

I believe the current situation is actively removing love from people’s lives, incarcerating people in care settings and killing those we are seeking to protect.

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