When the parent-child role reverses

As I write this article, my mum is dying. By the time it is published I’ll be living in a world she is not. And in these final days, I tend to her as I have done over the past five years, roles reversed as I was suddenly forced to care for the person who had always cared for me.

Losing a parent is one of the most personal and private experiences we can imagine, and yet it is one of the most common. We are all orphans in waiting, a stark fact many of us, understandably, don’t like to think about. But with parents living longer, many of us will not only face the loss of a parent, but very possibly have to care for them first. This role-reversal from child to parent of our parent can be an extremely difficult time that has both challenging practical implications as we juggle care of a parent with our own family and career needs, and emotional consequences as we often have to grieve while caring.

As Ireland's ageing population grows, projections by the Central Statistics Office (CSO) show that by 2021 the number of elderly people in Ireland will have grown by 200,000. One in every five people walking down Grafton Street in 20 years will be over 65.

Dramatic changes

However, changes for the group aged 80 and over are even more dramatic. In 30 years, the number of people in this age category will have risen by 250 per cent. Ageing on this scale is unprecedented in Irish history and it is not only having an impact on society and the health system, but also on the families who are caring for them.

In addition, the trend is for women to have their children later and we are seeing a whole generation of people – aptly coined the Sandwich Generation – caught in a maelstrom of care, looking after both children and parents. According to a recent study by Trinity College Dublin, a third of all women in Ireland are considered the Sandwich Generation. With an inevitability that can't be ignored, do most of us know how to prepare to care?

Bookshelves are groaning under the weight of guides on raising children, but very little attention is given to how we care for our parents or elderly relatives. Yet for many of us, it will be a very real and challenging experience and often not something we consider until it is a problem.

Like many women, I expected my mum to care for me while I got used to being a mother and cared for my own children. I never cleaned my cooker top, because when my mum came to visit, she always did it for me.

But four days after the birth of my third baby, my mum read my other two young daughters a story and kissed them goodnight.

Then, as she sipped her glass of wine, she had a massive brain haemorrhage. In an instant, this glamorous, fit, socially active woman was rendered permanently paralysed, doubly incontinent and brain damaged. I spent the next year spoon-feeding both my mum and my baby, changing their nappies and communicating through their eyes. Five years later the baby has started school, and my mum is at the end stage of her life.

Overnight my father became a full-time carer of my mum, and I became a part-time carer of them both.

Sometimes the role reversal happens suddenly, arriving by ambulance. Other times, it will be a slow gradual reduction of independence, and greater need of support. And that greater need can be a shock to the adult children who have to learn to adapt to the role-reversal of caring and looking after the increasing needs of a parent.

According to Eamon Timmins, chief executive of Age Action, nearly 40 per cent of its calls are from adult children looking for guidance on how to care for their parents.

Conversation

Timmins advises that one of the most important things you can do is face the situation together. “Many people don’t become a carer by choice. It is not a vocation, yet many people find themselves in that position. The more open and honest that process as a family can be, the better,” he says.

Avoidance tactics are understandable, as people fear offending or upsetting their beloved parent. But it is never too early, or too late, to sit down and start discussing practical issues over care. Asking your parent about their wishes, values and needs enables them to have a say in any eventual care.

Practical questions are simple but easy entry points to this conversation. They can include what do your parents feel they need? How will we pay for those needs? Can we improve the practical infrastructure of their house? Who will help them shop? It doesn’t matter who starts the conversation – child or parent – but what matters is that the family is able to make decisions together and, in a way, make death a part of their life.

When my mum had her stroke, we were lucky in many ways. When the doctor sat us down, telling us to prepare for the worst, he asked us if we wanted to resuscitate my mum. My dad and I didn’t even look at each other, as we both said “no”. We knew what mum would have wanted, because she had told us often enough. The doctor had meant death of course, but my mum survived and the worst was still to come.

She recovered enough to not die, but not enough to live. She was incapable of doing anything except lift her left hand. She needed 24-hour care. Frank conversations about who, what and how were forced upon us very quickly.

Since then we have had many ongoing conversations with my dad. My brother has been given power of attorney, even though my dad is still very fit and healthy. It just means things will be easier for us to manage should that stop being the case.

We also know exactly what his needs and wishes are about his future care options. These might seem like difficult conversations, but with three in five people becoming a carer at some point in their lives, they are conversations that need to be had.

There are an estimated 187,112 family carers in Ireland and the number is on the rise (by 28 per cent by 2021). The majority of these carers are women, the majority are married, and aged between 45 and 65.

Ireland’s ageing population – in parallel with most European countries and the US – represents a real challenge for governments, communities and families to ensure systems and supports are in place, not only for those needing care but for the carers. Timmins believes building supports around the carer are vital. “Self-care is the most important thing to consider.

“Who else can be brought into the circle of care? Look at what support you can build up for yourself, and make sure you look after yourself. Carers are the heroes in our society. They don’t get a lot of support. But I always say, treat it like an aeroplane emergency, and always put your own gas mask on first.”

Implications

Dealing with the care of our parents should begin, in theory anyway, long before they start to need that support. But “care” can mean a large variety of things. It is loaded with practical implications, from making sure someone has their shopping and meals, to feeding that person and keeping them alive.

It could mean helping to clean their house, to being responsible for cleaning their bodies, teeth, hair, ears, mouth, every day. It means caring for their emotional and mental wellbeing as well as their physical health. It can mean arranging care to ensure they are fed, washed, and changed, sourcing help and managing many aspects of their life including financial, legal and practical, as well as being a full-time nurse.

It means being responsible emotionally as well as physically for someone you love. It can be a fine balance to tread, with resentment on both sides, from the parent being told what to do, and on the child’s side with a parent refusing to acknowledge the new dynamic.

With a prognosis of a progressive illness or a slow deterioration, there is time to plan. That time can be used to assess the physical infrastructure of the home, talk to doctors, inform yourself and do some research to know what lies ahead for your family. “Knowledge is power, so thinking in advance about what is needed rather than constantly firefighting is really important,” advises Timmons.

“Then look at resources to pay for that. Think about what family will kick in, what external supports can be sourced in terms of grants and respite.”

Home help

Once my mum was well enough, we transferred her home to Belfast where an excellent community care package enabled us to look after her at home. However, in the Republic home help hours available are still on a par with those in 2006.

“The situation is still very patchy in Ireland,” explains Timmins. “Our research shows two people with the same conditions and needs will get very different supports depending on where they live. There is simply not enough home help packages available.”

Age Action is campaigning for a Minister for Older People at cabinet level to ensure the needs of our ageing population will be given the necessary focus.

There is no doubt the role reversal of caring for a parent is a challenging experience. But, as I have learned, there is no greater privilege than to care for your parent. I also learned, however, you must not minimise the need to care for yourself.

Prepare to care: practical steps

1 Have an open and honest conversation This can be over a period of time and, of course, can be difficult if the relationship is not close. But it allows everyone to have a say and plans can be put in place.

2 Plan ahead as much as you can If you have warning of a degenerative disease, arm yourself with knowledge and talk to experts. Knowing what lies ahead, where possible, makes the process a little easier. For example, make changes to accommodation before they may be needed.

3 Build up your own supports Make sure the support circle is wide, and that everyone who can, plays a part. Acknowledge that this burden can take a physical and emotional toll and self-care as much as possible.