The Most Poignant Situation: Dying When Someone You Love is Dependent on You

Thought for the Fortnight

“I’ve had my three score years and ten. All the rest is extra.”  These were the words of my father a few years before he died over twenty years ago.

The correct number for the average life span these days – probably even then – is much higher, but the attitude is spot on. As I move inexorably into my mid-eighties, I feel pleased for these extra years of life. They should be valued and savoured as much as the years before.

But my father had a much more serious problem than simply dying soon – he was deeply concerned for the welfare of my mother, who had vascular dementia.

If he died first, who would look after her when he was gone?

Older people

Many of us older people these days find ourselves in the surprising role of carers (or ‘caretakers’ in the US). There is the occasional carer for a parent – the children of all those centenarians, after all, are not exactly young.

But much more common are the older people caring for a spouse with a serious disease or disability. A couple slowly ages together and one of them becomes afflicted with some medical problem, from small to large. Their children often do what they can, but may not live at all near. In my case, there was a whole ocean between us.

The remaining spouse generally does what he or she can for a period. If things become too difficult to manage, the overwhelmingly stressful decision may be taken to put the person into a care or nursing home of some sort.

But this doesn’t take away the problem. All the worries concerning who will visit and care about the person – and how he or she will manage – in the case of their death still remain.

In my father’s case, the situation was eased because they lived in a retirement community and, when he could no longer cope, my mother was moved to the ‘assisted living’ – and later, the ‘nursing care’ – part of the same complex.

Moreover, he had hired a wonderfully attentive woman to give extra attention to her needs for some hours every day. She helped my mother to dress, talked to her endlessly and took her out for walks. 

She had a marvellous combination of practicality, intelligence, good sense and great warmth. She undoubtedly eased the lives of both my parents in their last years.

And yet this did not solve my father’s problem of dying before my mother. 

He broached this issue with my brother and myself on several occasions and we assured him that, in the event of his death, we would continue to do what we could – and to pay for the extra help for as long as it was needed.

Other people with disabilities

I had already been very familiar with this problem. Many years ago, as part of research I was undertaking, I had carried out a series of interviews with parents of adult sons and daughters with what are now called intellectual disabilities living in the parental home. 

Many of these parents were in their late seventies and eighties, with their ‘children’ aged 50 and above. The study was ostensibly about what they saw as the best housing arrangements for their sons and daughters when they moved from the family home.

But it soon became clear that the real issues that worried these parents were not practical but emotional ones.

First, the tremendous family bond meant that they didn’t want their son or daughter to move away to be helped by anyone else. They would miss their children and they feared that no one would love them or care for them in the same way.

And second, they were deeply, deeply worried about what would happen after they were gone.

This was probably the most emotionally stressful of any research I have ever undertaken, with highly emotive interviews often ending in tears. Indeed, we left the telephone number of a local social worker with each parent interviewed, in case they needed to discuss the issues further.

My research colleague and I felt that we had no easy answers, but it was important to raise the question, which had been largely hidden from discussion. By bringing the issues out in the open, we hoped that both the parents – and the professionals who worked with them – could begin to make appropriate and thoughtful decisions.

We published a book called Letting Go, which got some attention at the time (1989) but is long out of print. (The odd copy is available on Amazon, but some readers will find the correct terminology at the time - ‘mental handicap’ – to be out-of-date and offensive.)

The problem of dying

I want to come back full circle to where I began. As we age, we naturally begin to think about death and its implications for ourselves. 

This is normal – and healthy ­– and I hope everyone can find their own peace.

But spare a thought for those who have that additional worry of what will happen to someone they love when they are gone. They are the ones for whom we must have the utmost sympathy.

Postscript

My father did die first. But my mother died only three months later. We continued to pay for her companion, who was enormously helpful to the end. Indeed, it was she who soothed my mother’s last hours as neither my brother nor I lived close by.

At my father’s request, we gave her an extra sum after my mother’s death in thanks for her devotion to my mother. 

And I learned some years later that she used this sum to pay for nursing training, got her diploma and has since become a nurse, a lifelong ambition.

A version of this post was first published on Sixtyandme.com