“I’ve had my three score years and ten. I really can’t complain – all the rest is extra.” These are the words of my father a few years before he died.

The number these days – probably even then – might not be exactly right when calculating the average life span, but the attitude is spot on.

When it comes to living, we all want more, more, more. But I think we should be pleased when we get those 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 – 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 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. They slowly aged together and one of them became afflicted with some problem or other.

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 them into a care or nursing home of some sort.

But this doesn’t take away the problem. All the worries of who will visit and care about them and how the ill or disabled person 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 see 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, 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 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, I had carried out some research on the problem of parents of adult sons and daughters with what are now called learning disabilities.

Many of the parents were in their late 70s and 80s and many of their ‘children’ were aged 50 and above. The study was ostensibly about what they saw as the best housing arrangements once their son or daughter moved from the family home.

But it soon became clear that the real issues that worried these parents were emotional – not practical – 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 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 of the research I ever undertook, with highly emotive interviews often ending with tears.

My colleague and I felt that we had no easy answers, but it was important to raise the question, which had been largely hidden. By bringing it out in the open, we hoped that both 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. I should mention that the book has not been updated since it was published, so if you manage to find a copy, please do bear that in mind.

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.

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.

Do you look after a family member with additional needs? Do you worry about what would happen if you were to die first? What steps have you taken to ease that situation?