I interrupted one of my many Zoom meetings this week to go outside briefly and stand with others as the hearse carrying the remains of a neighbour left his home for the last time accompanied by the small family group able to attend his funeral. I was saying goodbye to a man of quiet dignity and constant smile who had left his home for the last time just before the pandemic as his dementia worsened to the extent that he needed to enter a care home.
As I stood there clapping with others in memory and thanks I could not get out of my mind the words his now widow had spoken to me a few days earlier. I had met her and as I expressed my condolences she told me of how she had been unable to see him for four months until his last few hours. She had nothing but praise for the care home staff but she was deeply upset about restrictions that prevented them from being in contact as they had for virtually every day of their married lives. I parted with her words ringing in my ears. “Donald you have to sort it. His death certificate said he died of his dementia, but I wanted them to write in it that he died of a broken heart, but they wouldn’t. He died of a broken heart. I just know it.”
As the weeks have gone on fewer and fewer people thankfully have died from Covid19 in our care homes and this past week we have seen the lowest level since the start of the pandemic. But sadly, in the rhythm of time there are still people dying in our care homes as there always has been and always will be. Care homes as I have said elsewhere are increasingly hospices in the heart of our communities; places of living in fullness and love until the end; places which give solace, comfort and care as folks come to the end of their days. So, there is nothing new about death and dying in our care homes. Indeed, over the years the ability to get to know residents as individuals, especially those wracked with dementia and its horrific hold, have made care homes places capable of giving people as personal and as appropriate an end as possible.
During Covid19 the natural humanity of caring has been interrupted. Part of the rhythm of a death which is expected is the necessary and essential presence of family and friends, to give assurance, offer comfort and to simply be present. Being with the dying is our greatest gift to a human life; surrounding a life with love and memory, holding one another in our first steps of grieving are intrinsic to good bereavement. The times I have been privileged to be with someone as they have died will forever be etched in my soul, without diminishing the aching sadness and emptiness that those moments brought. I have learned more about life in the presence of death than from any textbook or any teacher.
“He died of a broken heart.” Living is not just the intaking of breath into the frame of a physical body of flesh and bone; living is not just the occupying of space and earth; living is not just being there. Living is about relatedness, knowing that you are part of a story, being assured that you matter, that your voice is heard and your personhood upheld. What is the point of simply continuing to be here when all that is of worth and meaning, of value and heart, is absent and held back from you. The number of our days are as nothing without a quality within those days.
So it is that I do indeed believe that there are many others just like my neighbour who have died and are dying in our care homes not because of the vicious virulence of a virus but because of the measures put in place to protect and save their lives. I am definitely not saying that actions taken to protect are misplaced or wrong, certainly not in the earliest days of this virus. But now we have entered the 20th week of lockdown in our care homes and with regretfully no immediate move to visiting indoors, I have to with all honesty and I hope with integrity and sincerity, question whether we are now doing more harm than anything else.
I cannot imagine what it is like to have been in love with someone for decades, to have so become inter-twinned with another, that your steps are as one, your memories wrapped up in an alongsideness so intimate that there is nothing to separate them – and then to be separated, kept distant, only able to touch through glass, or speak through a machine. I cannot conceive the agony that it has been and still is for so many hundreds of not being able to touch and hold and be with those you love. I dare not imagine what it is like not to be with those I love.
There are loads of attempts to find a vaccine for this virus. But what I want – in the sad awareness that this virus will be around for many many years to come and that a vaccine may not work for all – is that we put equal effort into finding ways in which we can better balance protection and presence; that we can devise ways in which families can be with their loved ones so that the scar of separation is removed from our care homes.
I have seen it before, and I know deep inside myself the truth that my neighbour spoke. It is possible to die of a broken heart; to turn your face to the wall because the voice that gives you confidence is not heard; the hand that strokes you in assurance is not felt; the smile that lightens your soul is not present. There is no science for such an assertion only the evidence of experience and the truth of knowing.
In the weeks and months ahead, we have to get better systems of Infection prevention and control for our care homes which are appropriate to their nature as a home first and foremost and not simply adopt measures and approaches from an acute hospital setting. In the coming weeks we have to give very serious consideration as testing techniques develop to appointing at least one relative for each resident to enable the continuation of contact and human presence throughout any future outbreak. Over the next few weeks we have to really start to hear and listen to the voices of those who have autonomy and rights. We have to stop doing to and for and start listening to the voice of resident and family.
We cannot mend a heart which is broken; we cannot bring back a life which is lost or fill the emptiness of the days which hundreds have experienced, but moving forward we all, I believe, need to commit to responding better and doing differently in the future of this pandemic.
There are few poems about loss and dying more beautiful than Maya Angelou’s ‘When Great Trees Fall.’ I end this piece with the last stanza of her poem because it reminds us that when anyone dies they leave not just a memory but a call to action based on their living. The hundreds who have died in care homes in the last few months, my neighbour amongst them, need action not memorials, they deserve change so that no more hearts may break, and to that I for one will commit.
‘And when great souls die,
after a period peace blooms,
slowly and always
irregularly. Spaces fill
with a kind of
soothing electric vibration.
Our senses, restored, never
to be the same, whisper to us.
They existed. They existed.
We can be. Be and be
better. For they existed.’
Donald Macaskill
