Who cares for the car­ers?

The Irish Times - Tuesday - Health - - Front Page - Padraig O’Mo­rain

“. . . Re­lent­less, ex­haust­ing and of­ten un­pleas­ant or de­mean­ing, with lit­tle or no sup­port, re­ward or recog­ni­tion.”

That’s a de­scrip­tion of the work of car­ers from for­mer carer Cather­ine Macadam writ­ing in Coach­ing To­day.

Car­ing is of­ten seen as an ex­clu­sively fe­male role, but Cen­tral Statis­tics Of­fice fig­ures tell us that four of ev­ery 10 car­ers are men. We think of car­ers as “won­der­ful” or “great” peo­ple who fly around per­form­ing good acts. On the con­trary, ac­cord­ing to Macadam, “it is com­mon for car­ers to ex­pe­ri­ence burnout, stress, ex­haus­tion, loss of con­fi­dence and self-es­teem”.

In other words, car­ers are just like the rest of us. They are or­di­nary hu­man be­ings who find them­selves pitch­ing in and do­ing what needs to be done out of love (usu­ally) or duty (some­times).

Most of us praise car­ers, as we should, but the role can be ut­terly chal­leng­ing. As Hugh Mar­riott puts it in his book The Selfish Pig’s Guide to Car­ing, “. . . the fact is that most of us ex­pe­ri­ence pe­ri­ods when we de­spise our­selves for do­ing it, hate [the per­son we care for] for be­ing the cause of our trou­bles and yearn for es­cape”.

When Macadam fin­ished car­ing in 2011, she set up a coach­ing pro­gramme at her lo­cal car­ers’ cen­tre in the UK. This con­tin­ues to give her an in­sight into the ex­pe­ri­ence and feel­ings of un­paid car­ers.

Car­ers not only look af­ter the per­son who needs care – some­times they are ex­pected to look af­ter ev­ery­one else in the house­hold as well. And it’s not easy to ask for space and help if one has taken on the per­sona of Su­per­man or Su­per­woman.

So one of the things car­ers need to do, ac­cord­ing to Macadam, is to direct com­pas­sion to them­selves and not only to oth­ers. That can lead them to ask for the help they de­serve.

In fact car­ers, where pos­si­ble, might need to prac­tise a form of en­light­ened self­ish­ness (my phrase, not hers) in which they let other, able-bod­ied fam­ily mem­bers cook their own meals and wash their own clothes and help with the work of car­ing.

Feel­ings of guilt

Be­yond what Macadam writes, two ad­di­tional points oc­cur to me. The first is that some­times other rel­a­tives vis­it­ing the cared-for a per­son in hospi­tal can be harshly crit­i­cal of the hospi­tal staff, per­haps to as­suage their own feel­ings of guilt.

It’s the carer, though, who is left to re­pair the re­la­tion­ship with the hospi­tal. Some­times crit­i­cism is jus­ti­fied, of course, but think be­fore you speak.

The sec­ond is that when the car­ing ends, typ­i­cally when the cared-for per­son dies, it can mean the loss of the whole world the carer has in­hab­ited for years. If you have built your day around spend­ing time in the hospi­tal with the per­son you care for and if you’re on first-name terms with other pa­tients and staff, then you ex­pe­ri­ence a dou­ble loss when your loved one dies.

Macadam also points to the un­known num­bers of work­place car­ers, do­ing a full day’s work and then go­ing home to care for a fam­ily mem­ber for the evening and week­ends. She de­scribes these as car­ers “hid­ing in plain sight”, un­able to talk to man­agers and col­leagues about their car­ing re­spon­si­bil­i­ties. Em­ploy­ers

Other rel­a­tives vis­it­ing the cared for per­son in hospi­tal can be harshly crit­i­cal of the hospi­tal staff, per­haps to as­suage their own feel­ings of guilt

can help a lot by mak­ing it pos­si­ble for these car­ers to re­main in their jobs.

On aver­age, car­ers pro­vide 39 hours of un­paid care per week – the equiv­a­lent of a full-time ca­reer. And it’s not just adults who do the work of car­ing. About 4,000 of our car­ers are chil­dren un­der the age of 15 and on aver­age they pro­vide 16 hours of care per week, ac­cord­ing to the CSO.

Car­ing isn’t sexy. You are prob­a­bly not go­ing to see the topic on the cov­ers of the glossy mag­a­zines in your lo­cal shop.

While car­ers are just or­di­nary peo­ple, it’s good to ac­knowl­edge that they per­form heroic acts – but they are still or­di­nary peo­ple and they still need all the help they can get from State and fam­ily.

Padraig O’Mo­rain is ac­cred­ited by the Ir­ish As­so­ci­a­tion for Coun­selling and Psy­chother­apy.

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