My mum, Glenys, died in January 2020; she had lived with dementia for over 20 years. As an only child, I was her sole family carer, shuttling back and forth at least weekly for most of that time to support her, at first in our family home 100 miles away from my own flat in London, and since 2011 in two care homes in that same town. (By 2011, she was already too frail to travel further than 20 minutes, and there was no suitable care near me.)
Conceding her to residential care was a huge trauma in itself, but had become the only practical solution to her escalating needs, too extensive for me to manage on my own. She settled better than I had expected, and over the years I was immensely grateful for the kindness and dedication of the staff, who enabled her to survive for nearly a decade beyond the crisis that had brought her into their care.
Now I am also eternally grateful that she died before the advent of COVID – because I know only too well the anguish of those who are cruelly separated by visiting restrictions. For some, this means never seeing their loved ones again. For all those years, when my weekly routine was that 200-mile round trip, anxious of what I might find, conflicted about having to leave, primed every moment of every day in between for the phone call that meant emergency or the ultimate bad news, those visits were my lifeline to my mum – the sole thread of our relationship.
|Mum's last birthday, 2019
When the time finally came, I was able to spend nearly two weeks at her bedside, day and night, playing her favourite music, holding her hand, telling her I was there and I loved her.
By that time, indeed for at least six years before, she didn’t know who I was or even that she had a daughter. But I knew her, better than anyone. I was there to watch over her, to speak up for her, to fight for her, to ensure that she had everything she needed – including palliative drugs - and as much comfort, security, and peace as possible, to ease her passage from a life of 93 years. I was there to show her she was loved.
So yes, there are supposedly exemptions for care home residents in end of life to have visits from family members. But how do you define “end of life”? My mum had medically been on “end of life care” since 2014, when she first became bed-bound in a nursing unit, and had an acute episode of decline that she wasn’t expected to survive. Back then, I also spent two weeks at her bedside, but on that occasion she rallied to have another six years of life ahead.
Imagine having neither a car to take flight at any time of day or night, nor the funds to pay for travel and accommodation in those desperate situations, having to rely on patchy public transport or lifts from friends for maybe one last round trip goodbye. And then imagine being told you can’t go there at all; you just won’t be allowed in, unless management deems your relative to be imminently at point of death – when you might not be able to reach them.
How many times can you go through that?
Even for professionals, the signs of imminent death can be minutely subtle in a person who is already bed-bound and barely conscious, with severe cognitive impairment – a small change in breathing pattern, an almost imperceptible change of skin colour or temperature. In mum’s case, the supposedly tell-tale cold hands and feet never occurred – her dead hand in mine remained warm, even after her breathing had stopped.
With the best will in the world, care staff don’t have time to sit with a resident 24/7 and observe these fatal subtleties. Without me there, it’s likely mum would simply have been found dead in her bed at suppertime, and that’s the call I would have received, a hundred miles away.
Pre-COVID, families with relatives in care would know and accept that there are occasions when public health dictates temporary visiting bans. Outbreaks of norovirus or chest infections are common, and you might be asked to stay away for a week or two; this is hard enough, when every week might be your loved one’s last, but you can endure it, knowing there is an end in sight.
So what about window visits, FaceTime, and plastic screens? Aren’t they the COVID solution? Well, as you can see, they don’t help in the situations I’ve described above, where practical support is vital and the reassurance of physical presence and touch may be the only communication left.
Yes, they’re better than nothing, when the resident is able to participate, but a bed-bound person living in a secure unit on the upper floor of a home (like my mum) will never be able to go to a window or garden to be seen by their family, and cannot understand a person behind a screen; and yes, over-stretched care workers go to amazing lengths, often on their own time and using their own phones, to help families keep in touch via tech – but that tech is often meaningless to a person in end stage dementia and arguably distressing to relatives who can only witness, with no agency, their loved one’s decline through the screen.
|Christmas 2019, a few days before mum's death
A callous person (and there are sadly plenty of those) might say that if a person doesn’t know you, they don’t miss you, they lose nothing by your absence; you should simply resign yourself to a remote goodbye. But to accept this is to abandon our humanity and consign ourselves to psychological damage for years to come. I was not just mum's only immediate family; she was mine.
The fact that I was there to the last for my mum, whether she knew it or not, gives me the comfort that there was nothing unknown, no gruesome imagined distress or suffering I could have ameliorated; I said everything I needed to say; I know, even if she did not, that she was not alone. That has helped me come to terms with her loss - I wish nothing less for thousands of others in this heart-breaking situation with COVID.
* Amended from "testing" on 1 February 2021, when vaccination had become available.