He tells us that his home is a prison. And, the thing is, he’s right. The rules in place to shield our most vulnerable are undoubtedly essential; you need look no further than the mayhem wrought by Covid in care homes during the spring. However, in the panic to protect, the last ounce of control and choice has been wrenched away from families. My father’s “challenging behaviour” in hospital meant that most homes refused to accept him – as a result, the large facility where he now lives, a gruelling 90-minute round trip for my mother, became the only option.
There was no introduction, no brochure. How he spends his days, what his room looks like, the other residents – they all remain a mystery to us, his family. My brother sent me some of the notes he has used to communicate with my father. They show one half of a failing conversation, flicking between the mundane, repetitive reassurance – “Don’t worry about the car”, “Your wallet is here” – to the gut-wrenching: “The vaccinations are starting in the new year”, “We’re not going anywhere”, “You’re getting better every day”, “One more week”…
So why can’t we just pull him out? The advice from professionals is that he is too ill, he needs 24-hour care, and there is not enough support to cater for this at home safely. We know this illness is degenerative, that we are facing an inevitable decline. But keeping a person safe is not just about providing care for their physical wellbeing. Contact with those closest to them is central to their mental health and stability.
Despite talk of vaccine timelines, risk groups and heart-warming PPE-covered reunions in the headlines, the reality on the ground is far more opaque. The home is currently unable to give us any date for a vaccine roll-out, or any indication for when visiting rules may change. You would hope, with the news that the Oxford AstraZeneca jab has gained approval, that things might be about to change. But for now, management seems to be just as in the dark as we are, reliant on the drip feed of changeable information from central government.
These restrictions may be necessary – and staff on the ground are faced with an impossible task – but for my father, and thousands of others like him, this is an indefinite sentence. We have no idea when our fiercely intelligent, independent, desperate, deteriorating dad will have any meaningful life outside an institution filled with people he doesn’t know or understand. His unhappiness is a constant concern. New medication has helped with his mood and seemingly brought some calm to the rollercoaster swings of this illness, but his depression has spiralled. There is not a visit or call that goes by without him telling us how unhappy he is, how angry he is that he is not being given more information.
My mother is crushed, separated from her husband of 42 years, unable to care for him herself, yet totally consumed by the battle to improve his welfare and end his isolation. Privately, many of the professionals we speak to, across social care and nursing, tell us they share our frustrations for these vulnerable people. These staff are working in often unimaginably trying conditions, often at personal risk, and should only be applauded. Care in this country was creaking at the seams long before the pandemic struck.
The brutal truth is that staff, management and families are pretty powerless to shield the residents from the virus. Only last week, a Covid outbreak was confirmed in my father’s home. Despite regular testing, it was almost certainly brought in by a staff member, making a quiet mockery of the stringent measures visitors endure to keep family members safe. Once in the home, the only way to bring an outbreak under control – by way of PPE, regular testing and daily disinfecting – is, I’m told, to wait for it to peter out. If a resident’s symptoms become too bad, families are asked if they would like them to be hospitalised – most decline. The majority of those in homes are too frail to survive the invasive ventilation procedure.
On our visits, we have never physically seen beyond the glass partition. All we can make out are the dark lines of armchairs in the sterile living area. Residents shuffle and shout – occasionally sliding round the corner into view – my father whispering: “Who’s that man? Why is he screaming? What have I done?” “What have I done?” is a regular refrain in our conversations through the glass. “Why am I in here? Why can’t I come home?”
As his health has improved, my father’s sensitivity to his imprisonment has sharpened. Although I think he knows there is nothing left to fight against, he still looks to his family for help, as they press scribbled notes to the glass, promising “Not long now”… Even in the depths of his dementia, the lie is wearing thin.