Solidarity and Marginality: Family Care in a Pandemic
Throughout the pandemic, more attention should have been paid to those caring for a vulnerable family member at home and to their everyday anxieties says Dr Lisa Smyth.
What do experiences of family caregiving during this pandemic reveal about solidarity and marginalisation? While public attention to the crisis in care caused by the pandemic has focused on the treatment of those in care homes and the impact of school closures on working parents, less attention has been paid to those caring for a vulnerable family member, whether children or adults.
Research interviews with family carers during lockdowns in Northern Ireland indicated a sense of strengthened solidarity, as it seemed that the rest of the world had joined in with their isolation. Pam (all names have been changed) for instance, was surprised at the help she and her family received:
“There’s people who you don’t see very often that aren’t related to you that stand up and help you.”
Stories of unexpected kindnesses were recounted, often with amazement and gratitude. An increased sense of solidarity was commented on in interviews, as the wider population began to share in ‘normal’ carer isolation.
For some, like Paula, lockdown allowed a return to ordinary social activities, as things moved online. She recalled that:
“When everybody else had to go into lockdown and they were all complaining, I thought, welcome to my world! Then all these things presented themselves online, people were having communities and I didn’t feel so lonely”.
While caring could become much more intense under lockdown if paid care was put on hold, it also had something of a levelling effect:
“I didn’t stand out anymore […] I am the same as everybody else, everybody else had caring issues.”
At the same time, carer interviews indicate the everyday anxieties involved in caring through a pandemic. The challenges of carrying moral and practical responsibility for care in quarantined conditions cannot be overstated. Family carers have come under intense pressure to ensure vulnerable loved ones are taken care of, having to source food and other essential supplies from within their own networks of neighbours, friends, and family. This has hugely intensified the pressures borne by family carers, as they struggle to provide care in a vacuum. ‘Bernie’s’ comment that ‘I would say we are just hanging on by a thread’ was not uncommon.
Fears of contracting the virus and transmitting it to a vulnerable loved one were palpable. This was not always taken seriously in wider social networks. Recalling an outdoor family get-together, Susan commented that:
“People forget about the distancing and it’s very awkward. I am nearly walking back from people, and then if you say something, they are taking it personally.”
Patricia told me of a relief carer who arrived at her house one day having just been to the hairdresser:
“I freaked out. Every day when the carers left, we would clean down everything and when I come home from the shops, even now, I go straight into the utility room, strip off, have a shower, change, and then go into mummy. This woman had been to a hairdresser!”
As Rachel put it, ‘half the time carers are left battling with people who should be helping you.’
Carer anxieties focused not only on managing the constant threat to life and health, but also on the question of whether they were doing a good enough job to care for their loved one. Carers often try to gauge how well they are doing, perhaps struggling with themselves over whether they might conceivably do more. This becomes more intense where the established routines of and supports for caregiving are severely disrupted, as in a pandemic.
Interviews nevertheless indicate a general sense that carers felt able to cope, despite the pandemic. As Jennifer commented:
“I knew that if I didn’t fight for her she would be dead right now. I couldn’t cope with that. This sounds really awful and very ‘me, me, me’ but I literally done everything possible physically and mentally to help.”
The shape of public debate, with elements of resentment openly expressed against vulnerable populations, has compounded the anxieties of carers, whose voices have been marginal in public talk about what sort of damage the pandemic has caused. As Jennifer, put it:‘
“Basically we are unpaid healthcare workers, and we are the ones who have got completely forgotten about in all of this”.
Public health strategies to control the spread of COVID-19 have notably focused on the need to prioritise vulnerable people, whether through trying to ‘stay at home, save lives’, or through the priority roll-out of the vaccination programme. This might suggest a welcome return to the solidarities of mid-twentieth century welfarist policy and politics.
However, public talk has tended to focus on the impact of lockdown and quarantine on general subjective wellbeing, as freedoms are curtailed. The threat to life and health faced daily by vulnerable populations, their carers and wider support networks, appears to have been either overlooked, accepted as unavoidable collateral damage, or become a focus of open resentment. The anti-lockdown Great Barrington Declaration gives formal expression to these attitudes, insisting that ‘[t]hose who are not vulnerable should immediately be allowed to resume life as normal’.
Indeed, those who have been bereaved during this pandemic reportedly feel unable to publicly grieve in the face of comments such as ‘he would have died anyway’, creating a sense that those most seriously affected by COVID are living in an alternative reality. Caring, while generally understood to reflect the social value attached to relationships of love and commitment, is also hazardous, particularly when it is intensified and limitless, and carried out on the margins of public awareness and solidarity.
Whether family carers continue to experience greater solidarity, or whether libertarian and populist voices emphasising individual choice take over, remains to be seen.
Join Lisa for a special screening of Careworn: Lockdown Stories from Family Caregivers and panel discussion as part of the Imagine Belfast Festival on Wednesday 24 March at 4pm.
Image courtesy of the Imagine Belfast Festival.