Bill is 97. He lives alone in a pretty bungalow in a Lincolnshire village.
Anne is 94. She lives in a care home in the city of Lincoln itself.
He is all-but-blind, very deaf, uses a frame to walk short distances with, and last September was diagnosed with a tumour in his lung. A couple of weeks ago he had a ‘minor’ stroke (TIA). Last weekend, he had another one.
He fought in Burma in the war. He’s a conscientious, gentle man.
She struggles to walk at all, is crippled by osteo-arthritis, endures frequent infections, and has creeping dementia.
She was a Land Army girl. She has long been a dedicated, loving mother.
These are simple descriptions of two remarkable people who are also my Mum and Dad. Although I’ve known them all my life, my relationship with them continues to evolve. Over the last few years, my role in relation to each of them has changed significantly.
For I’m not just a son any more, I’m now also a carer.
What follows is a little bit of the story of me as a part-time carer. It’s a single scene from an epic and sometimes action-packed drama.
Over the last few years, my sister, brother and I have established a rota whereby one of us visits Dad each and every weekend. I live 120 miles away, and am the nearest of the three siblings.
Our visits ensure that he is able to visit Mum in the care home, and they enable us to check that he’s in reasonable shape domestically: he has enough food (which isn’t past its sell-by date!), his laundry is under control, odd-jobs around the house are taken care of etc.. They also reassure us that he’s safe and as well as he can be.
Between visits, I call him on the telephone each day if I can, and so do my sister and brother. It’s another way of checking he’s OK, and at the same time of giving him a sense of being thought about and loved. He and my Mum have been married for nearly 65 years, and the day she was admitted to the care home as a permanent resident was the day my Dad’s life started to empty out. It’s hard for me or for anyone who hasn’t experienced it to imagine what 60+ years of everyday companionship is like when it comes to an end. ‘Loneliness’ probably doesn’t do it justice.
As his children, I feel it’s the least we can do to help him cope with both this profound loss and with the awful relentlessness of his physical decline. It’s a function of our love that we want to reduce the impact of his vulnerability and of his understanding that things will never be as they once were.
There are many men and women like us doing much the same these days, across the globe. Perhaps you’re one of them?
Over the past decade or more there have been a series of medical emergencies involving Mum, and over more recent years a similar pattern has started to emerge with Dad. Each time it’s much the same: urgent phone calls and text messages, plans hastily agreed between us siblings, the dash up the A1, the hours waiting in Lincoln Hospital, the conversations with medical and social service professionals, the shock of the present moment, and the fear of the future. And those private, most delicate thoughts: “is it the end this time?” and “what will be required of me?”
I’ve lost count of how many times I’ve spotted the DNR (Do Not Resuscitate) notice at the end of the bed.
The most recent crisis occurred just a couple of weeks ago. I called Dad at the usual time, just after 6.00pm. It was meant to be a typical brief chat, just a couple of minutes of checking-in with each other. I’d established the habit some years previously of only having brief chats on the phone with Dad. That way I could be reassured that he was OK and yet still protect my own time and life.
For this is one of the hardest aspects of being a carer for someone you love: the threat it poses to the quality of one’s own life, away from the caring situation. Caring encroaches into living in quiet but irresistible ways.
In any case a brief call suits both our personalities; neither of us have been great telephone chatters! And these days, with his deafness and physical decline, he can’t really cope with much more than a brief phone call with anybody.
So it was to be an ordinary, typically-short conversation.
Instead it very soon became a phone call I’ll remember for the rest of my life.
Almost as soon as he picked up I sensed something was wrong. His voice was….different. There was a peculiar register to it, a strange tone. And the words he was saying didn’t quite make sense. He had to correct himself time and time again. He even seemed to be making up words in an effort to express what were essentially simple ideas. He seemed to have lost control over his ability to talk.
My heart started to beat like a piston. I feared immediately what was going on, but couldn’t be sure and didn’t want to raise any false alarms. (On reflection, perhaps I didn’t want to accept the truth?) The carer who pops in to give him his tea at 5.00 pm had long gone.
My Dad was having a stroke at the other end of the phone, and I was 120 miles away. The frozen sense of helplessness was visceral.
I tried to calm him down, by helping him appreciate his situation. “It’s OK Dad, you seem a little confused”.
He knew this.
“Yes,” he said, “don’t know what’s…it doesn’t quite fit. Nothing fits….together”.
In an effort to normalise, I asked him if he was watching the News (I could hear it on in the background).
“I’m not sure,” he said.
Then I knew I had to act.
“Dad, I think you’re not feeling very well. I’m going to call the doctor.”
In truth I didn’t know exactly what to make of it, or what to do. I had no choice but to tell him I was going to get help for him, and I put the phone down. As I did so I wondered what on earth it was like from his perspective, in that moment. How alone and frightened must he be……
The journey by car from my home to my Dad’s usually takes about two hours. After more than thirty years of travelling it on a regular basis, I know the route very well indeed: every roundabout, every filling station, every speed camera. A few minutes after ‘that’ phone call, I was driving it once again. And once again, I was wrestling with a myriad thoughts and feelings as I did so. My driving robot took over, the environment sped by unrecognized; in my mind I was dealing with the situation that I was travelling towards, even though I couldn’t know what it might be.
Many years ago I was taught some mental exercises to help keep myself balanced and calm through the day, and these have served me well in various times of crisis. I applied them again through that drive. I’m not sure how I would been without them by the time I arrived at Lincoln County A & E; not sure how my capacity to be of any real help would have been effected if I’d been even more adrenalin-filled than I already was when I parked in the dark, half-empty car park.
My Dad was sat up on a gurney, a tube plugged into his arm. He was wearing one of those awful hospital gowns, which alone connote illness and fear. He was pale and wide-eyed. We all become children again in the face of our own medical trauma.
From somewhere, a nurse’s voice told me he was “OK”.
Through his near-blindness, my Dad recognised me.
“Son!” he said, and gripped my hand. There was a smile, and a palpable exhalation of relief. Perhaps there was a bad joke shared between us, I don’t recall.
What I do remember is the waiting. A familiar, numb-inducing attendance, while the machinery of NHS care whirred somewhere far away, deep in the heart of the town they call a hospital.
I knew from experience that eventually all the questions would be answered. I also knew it would be a slow process of finding out. Will my Dad die tonight? If not, will he be able to carry on living at home as before? What will be the long-term implications? What will become of my life? When should I let my own children know?………
Dad is home again now. He was in hospital for just a few days. He’s weaker than before, and the stroke (or TIA to give its proper designation) kick-started another small army of helpers who are now implicated, to varying degrees and in varying ways, in his daily life: more professional carers, doctors, social workers, community nurses, vicars, neighbours, delivery drivers, even shop assistants in the local Spar. All are even more present than before to help my Dad maintain a reasonable quality of life.
And my sister, brother and I are more present too. Our commitment to his welfare has ratcheted up a little further, the impact on our ‘other’ life has increased another notch.
After each time of emergency we think it can’t get any worse, and each time it does.
Each time we know his condition can’t be any more fragile, and each time it becomes exactly that.
Each time we become a little bit more aware of his vulnerability, and we recognise that the time of his passing is closer. And each time we are reminded that our own lives are still full of this awesome, frightening, demanding, privileged, always new and unique thing called ‘caring’.
I’ve often found myself struggling with the emotional impact of caring. As much as I try to do the responsible, mature thing in all situations, as much as I try to be calm and patient and considerate in the face of all these unexpected demands presented by my ageing parents, still there are times when it feels too much. It feels like a burden.
Sometimes I catch myself being impatient with my Dad or my Mum. I may say something a bit snappy because he didn’t hear me for the third time! I may pull his slippers on a bit more roughly than usual because he just won’t move his feet enough! There are a thousand and one things to which I might react badly in the course of any particular caring day.
And almost as soon as I do, then of course Guilt makes a grand entrance. I feel guilty for saying or doing something not worthy of an elderly man who can’t help his own condition. How bad a son am I?!
But much worse that this, late at night, worn out by the driving and the making of meals and the bringing of drinks and the rushing to the bathroom and and and….I can find myself dealing with flashes of some dark ideas, that look very much like the fringes of wishing for the end to come as soon as possible.
Although thankfully not too frequent, this kind of thinking is a disturbing symptom of the need to disengage somehow. It’s a sign, clear and bright (well, dark and bright perhaps!) that it’s time to look after myself a bit more.
Each crisis that pulls my mother or father deeper into the crevasse of old age also produces more burden for those who are holding the ropes that stop them falling.
Sometimes we need to tie the rope to something solid and walk away for a while – emotionally or otherwise.
Mature carers of one or more ageing parent experience a profound double-whammy that impacts at every level: we not only carry the burden of responsibility for managing the care and welfare of someone we love unconditionally, we also and simultaneously experience the gradual, silent grief of watching that person fall slowly to their passing. We attend to their needs in the present moment as best we can, and yet feel them slipping away from us, moment by moment, into a dimension where they can’t be reached. In some ways we are closer to them than ever, yet feel they are always moving away.
We look after them and mourn them at the same time.
This is a profound matter, and can’t be underestimated in its effect or significance on our own perspective on life. It can have a huge impact on our emotions and on our understanding of ourselves. It has the potential to be a major learning experience, but I’m not sure that we all know how to maximise this rare opportunity.
And that’s partly because it’s also a phenomenon that is experienced largely in a solitary, almost shy way. It doesn’t get talked about, it’s hardly even recognised as a ‘proper’ issue. The sensitivities and complexities of caring for those we love in their final years are monumental, but this in itself tends to repress our usual search for understanding and recognition.
The challenge of caring isn’t just about time, though that is one of the greatest demands. It’s not just about personal energy, though that’s drained too, sometimes hugely so. It’s not just about financial or career cost, though that can be very significant.
It’s also about who we are as people, about the kind of person we want to be; about who we are both as children and as adults – perhaps mothers and fathers ourselves – with all our interests and needs and hopes and desires. It’s about being as human as we can and trying to lead our best life, and learning to accommodate the care for someone else’s life into our own.
It’s about the need to be pioneers in territory only we will ever go. We do what we feel we must in circumstances for which there are no rehearsals and no training available, and yet at the same time we have to learn to balance all of that within our already-full lives.
To achieve this balance effectively, we have no choice but to look at ourselves with clarity and honesty. We have to observe and question our own behaviours, our own attitudes. We have to try to make the right choices, when sometimes any choice at all is very difficult. Through the intensive demands of caring for ageing parents, we encounter ourselves in never-to-be-repeated ways.
There’s a measure of courage required in this: every caring situation is unique, and so there are no answers external to our own circumstance. Our choices are ours alone, and there’s no one to tell us we’re right (another reason we don’t talk about it much). We are responsible for the quality of life of another, just as we are as parents.
I believe that being a carer for a member of our own family is a unique privilege, and one that needs to be grasped fully. I believe we do well to acknowledge this, consciously as it were, and act accordingly.
Caring for our own relatives is one way of observing a true measure of ourselves.
Ironically, a crucial aspect of this is to accept that being a carer for a relative is also a real burden. We must accept the importance of looking after ourselves, the carers, as well as those we care for. This means being able to rest, and to lead an ‘ordinary life’ too.
It means maintaining for ourselves a sense of purpose and progress within the context of our own aspirations, despite the demands that caring can bring. Sometimes it means allowing our aspirations to change shape in the light of what we learn from our caring role.
Above all, we need to remember that we used not to be carers, and one day we won’t be again.
Perhaps we need to prepare for that too.
(This post was originally published in 2014, and although some elements of the situation described have altered since then, the essential ingredients and the underlying themes remain the same. My father is now, at the time of writing, 100 years old, and has recently moved into the same care home as my mother, who is 97.)
First edition August 2014
Revised December 2017