Then there’s the pessimist/realist in me that says it’s just a matter of time before the pandemic finds an opportunity – a carer who travels by public transport, supply boxes that missed a square centimetre of disinfectant, writes Nina Callaghan
COVID-19 is rattling the ideas we had for the end of life care for our vulnerable parents. Picturing a coronavirus-related death somehow appears a much more suffering, hyper-angst, dreadful affair than what we had imagined for our loved ones. Preparing for death when you have frail parents and imagining all the ways it could happen is perhaps par for the course when one gets older. A non- or low-intervention scenario, a gentle end to a long road of leaving this planet – is what we hope for and maybe that's still possible in the COVID-spectre of death the planet is faced with.
My life-partner Sara and I each have a parent with advanced dementia. My dad, Cedric was diagnosed more than ten years ago with vascular dementia, early-onset at 62 years old. Sara's mom, Mama D was diagnosed five years ago, at 79 with Lewey Body dementia. We've witnessed and fretted over their steady decline, the loss of faculties apparent sometimes from one day to the next. Their ability to walk, to speak, to lift a fork to their mouth, focus their eyes, to follow a simple instruction - we know the ravages of this disease and mourn the small losses along the way.
Therapists refer to this as an ambiguous loss because while they are physically here they are most times emotionally and mentally absent. So much of our interactions with them depend on a special kind of intimacy, reading their quiet bodies for signs of pain, distress and pleasure.
Both parents are now in wheelchairs, using incontinence wear, are non-verbal and require round the clock frail care. My dad is in a private facility in the southern suburbs, dedicated carers administering the daily routine with as much love and enthusiasm as they can muster for a too big patient-carer ratio.
Mama D lives with us with two carers now taking 7-day shifts during the pandemic to reduce travel and therefore risk. We are very fortunate and grateful for the options available to us, considering the quality of care available for the elderly and incapacitated who can't afford them.
(Nina with her dad Cedric, his wife, and granddaughter at his 73 birtday.)
I used to visit my dad every week for a few hours. Usually, I'd arrive at lunch in time to feed him, wheel him around the grounds for some fresh air and sun, tell him news of our lives or just sit in silence and hold his hand, marvelling at how his skin is still so youthful-looking. I haven't seen my father since before the 24th of March when the facility went into lockdown. He's in a dementia ward at an old age home that has a total of about 300 residents at various stages of need.
It's no easy feat trying to keep the most vulnerable virus-free, but the home has managed so far somehow. All those draconian systems I used to scoff at, administered with military-like severity is one of the reasons why.
Then there's the pessimist/realist in me that says it's just a matter of time before the pandemic finds an opportunity – a carer who travels by public transport, supply boxes that missed a square centimetre of disinfectant. At the stage the pandemic is currently at in South Africa, surely the chances of community infection in an old age home grows as the days tick by? The horror stories of care-home deaths that are COVID-19 related in Spain, Italy and France are enough to send us into a flat panic at the prospect of care-home outbreaks here.
Would I be able to see my dad if he contracted the virus? Would there be a spare PPE for my mother and I to give him a last hug or to look into his eyes? The guilt of putting your loved one in a facility compounds and amplifies with these morbid fantasies that one is forced to consider. The sense of abandonment threatens all good sense and erodes my already tenuous faith in a hopeful theology.
Dementia is a disease of loss, steady loss, inevitable loss and you're forced to fold that loss into your every day as you hold on to the life that still manages moments of expression in your beloved family member. In a pandemic that is basically a death warrant for the elderly and infirm, the sense of ambiguous loss becomes that much more pronounced, hope of what you can participate in, that much more fragile.
If our parents do sicken with COVID-19, we hope to have options that will make their passing easy, as physically comfortable as possible. We hope we can have an opportunity to say goodbye, with a touch and a look, rituals that for many of us may be slipping out of reach during this time. I wish I were more of a "love 'n light" kinda person, more trusting in theories of soul journeys and a reconciled (after)life because in many ways my responses and beliefs come up short at a time like this.
For all who find themselves in a similar position, may our frail loved ones know and remember the love we have for them and if the time for death should come, may it be easy.
- Nina is a researcher at the Centre for Complex Systems in Transition at Stellenbosch University, and lives in Cape Town.