Dr Sarah Russell RGN is a Professional and Practice Development Facilitator, Dementia UK and family carer. This is a personal blog from Sarah, and uses some words used in her other writings and blogs. She tweets @LearnAdmirNurse
I have been a nurse since 1986, mainly working in end of life or dementia care. I have had a variety of roles in the hospital, care home, community and hospice settings. I have been a family carer (alongside my brother and sister) since 2002 – first at a distance, weekends and holidays and then as a full-time one in my own home, hospital and then nursing home. I am one of the 700,000 informal carers for people living with dementia. Over those years, we have had our fair share of breath-taking moments.
Moments which have taken my breath away: unforgettable, magical moments when you know your life has changed forever. When I first met my husband, when I qualified as a nurse, when I got married and when my parents first saw our baby daughter.
Moments when the breath is pushed out of you: unforgettable, terrifying moments when you know your life will change forever. When my father had his first stroke, when he died and when my mother was diagnosed with Alzheimer’s.
Moments when the breath is dragged out of you: unforgettable, unforgiveable moments when your life uncontrollably changes: when my mother could not remember the name of her husband, when I struggled to juggle money, time and logistics, and every day when I had to make the decision about whether to be a daughter to my mother or mother to my daughter.
Intertwined in all of those moments have been ongoing, intimate, intricate discussions about death and dying. My doctoral research was in advance care planning, and therefore considering, discussing, deciding and documenting the ‘what if’s’, ‘what now’ and ‘when you die’ has been a familiar companion.
The breath was squeezed out of me, sixteen years ago as I stood by my father’s hospital bed. He lay there vulnerable, silent, attached to tubes and surrounded by charts which monitored, measured and recorded every minutia of his physical self. The cacophony of the busy ward environment did not mask the scream of his eyes as he pleaded for his thoughts to be articulated, advocated and acted upon. Yet, I struggled to make myself heard with kind, well-meaning clinicians who glanced at documents and checked protocols. I wondered what had happened to all those past, everyday, kitchen-table shared decision-making family conversations; discussions and decisions that happened hunched over a meal, making the world right, and imagining and contemplating the ‘what ifs’ of the future. Back then, remote ‘what ifs’ were theoretical considerations still distant from our daily lives, even when they drew closer due to advancing age and multiple strokes.
Fast forward to two years ago and my breath was suspended. My siblings and I sat next to our mother. Lights flashed and alarms were turned off in the theatre recovery unit. Nurses and doctors with name badges and stethoscopes noiselessly checked how she and we were and acknowledged the uncertainty of dying. Her advance care planning had been to die at home, but an unexpected encounter had precipitated an alternative decision. I had gone out to walk the dogs and returned to find her fallen, wrapped round the toilet. She’d broken her hip, so it was a trip to the hospital. We made the decision to have surgery, because whilst frail and living with dementia, she had been living well until then and it was a potentially treatable, reversible situation. But, after her surgery, things changed and she lapsed into unconsciousness. My brother, sister, and family all sat quietly watching and waiting for her death to come, the rhythm of the machines in tune with her breaths. But then came a flicker of her eyelid, a gasp and a breath and her raspy voice asked for a cup of tea. Those hours by her hospital bed, in what we thought was the death vigil, were both wonderful and terrible. We all knew that death held no fear for her and that she looked forward to being with our Dad, so for both her and for us, there was a regret that she lived on that day. This is a difficult thing to say, that death may be a welcome friend.
Many breaths were used up, when we made the decision for Mum to move into a nursing home because I could not provide the round-the-clock physical care she needed. I was racked with guilt. She had lived with us for 8 years but I could no longer do it, and was on my knees from physical and emotional exhaustion. But it was not just that. During her hospital admissions, we came to realise that what she needed from me now, was not to be her nurse, carer or assistant, but to be her daughter, companion, friend and advocate. And pre COVID-19, many happy and content breaths have been shared because she has experienced the competent, kind, caring and companionship of both her family and nursing home team.
Recently, as I was wheeled into the same operating theatre as my mother had been in, two years previously, I considered all those taken, pushed, dragged, squeezed, suspended and used breaths. As my own breath was controlled with devices, interventions and medication, I thought upon the lockdown months behind and before us and the gradual erosion of my mother’s happy and contented breaths, that defiantly remained, despite the restrictions on care home visits due to the competing voices of biomedical, emotional, psychological, spiritual and social safety. Breaths that were always closer to her death than to her life.
Never mind a circuit breaker…...perhaps what we need to do more of is simply to take a breath.
Take a breath. There are inspirational examples from the care home sector of risk-aware innovations, enabling families to safely visit with each other in person or digitally. Learn from, support and do more of this.
Take a breath. Look and resolve the barriers to visiting such as insurance policies, access to personal protective equipment and testing for identified family visitors.
Take a breath… and work better across all the health and social care sector to enable safe care home visiting.
Take a breath. Really look at the distress, stress and isolation that care home residents, their family carers and the workforce are under – not just the months past, but for the long COVID-19 future in front of us.
Take a breath. Visiting someone in a care home is not an optional add-on. It is full of nuanced, intimate relationships which sustain the identity and agency of the individual person.
Take a breath. Ask for solutions from those who are experiencing challenges every day. Adjust and adapt those answers to make the difference.
Take a breath. Use the emerging research evidence of how to enable safe visiting. Now, not later; later will be too late.
Take a breath. In the years ahead, when we look back at these COVID-19 times, what will it say about us as individuals and as a society?
And as I see my mother over our daily Skype calls or fortnightly ‘through the screen’ visits and gently ask her to ‘take a breath in, take a breath out ‘….I wonder…how many unforgettable, magical or unforgiveable, uncontrollable breaths does she have left in these COVID-19 times?
Take a breath.
