Who cares for the carers?

Colm Fitzpatrick explores how former carers can be supported

 

With over 62,000 people having their time caring for family members come to an end every year in Ireland, a new booklet is promising to guide former family carers through experiences of grief and loneliness, as well as provide information on what steps to take next in their journey.

The Way Ahead: A resource to support family carers is an initiative by Care Alliance Ireland, which mainly seeks to help those who have completed their caring role, in the context of unpaid physical or social care to a family member with an illness or disability in the home for a prolonged period of time.

Speaking about why the booklet was created, Liam O’Sullivan, Executive Director of Care Alliance Ireland, said that many former carers haven’t always been “amicably supported” and that after completing their caring role find themselves in a position of isolation.

“For current carers, there are a good few supports out there, but what people would say is when a person passes away or perhaps they can no longer be cared for at home, suddenly there’s a void in people’s lives, that will kind of make them go ‘What about me now?’” explains Liam, adding that carers most susceptible to this tend to be among those supporting the traditional ageing spouse.

This was the personal experience of former family carer Annie McGuiness, who cared for her husband for six years.

“We were rarely apart in all that time. My whole focus in life was to keep my husband content, fulfilled and pain-free. Then last September my husband died suddenly. After the first few weeks of numbness and bewilderment I became very angry,” said McGuinness.

Enthusiasm

“The main question for me has been, ‘Who and what I am now that I am no longer a wife or a carer?’ Being the ex-carer of a spouse who has died has left me with an awful void on so many levels. I am always tired and have to pace myself each day. I have lost much of my enthusiasm for anything. I can’t commit to anything.  I have to push myself to leave the house. I am not keen to be in a group situation too long. At times it is hard to keep going to find a purpose.”

The booklet is designed to address existential questions like these, focusing on topics such as bereavement, finance and returning to work.

After the death of caring for a family member, carers can experience a wide range of emotions from grief to helplessness. The booklet explains that in these situations carers may also feel detached and almost in a dream-like state. How one grieves depends on a variety of factors such as the kind of person you are, the relationship you had with the person who died, and what support you have in your life. The booklet also outlines that grief can have physical effects too, leading to fatigue or difficulty in sleeping. Appetite may also change and energy levels may drop significantly.

According to Liam, many former family carers’ experience of bereavement is complex and not simply a “relief” as it is so often characterized.

“Relief isn’t necessarily the case. Now with some, perhaps an ageing parent who may deteriorate gradually, arguably there’s an element of relief to it”, says Liam, but he adds that many former carers find themselves in circumstances where they have supported someone they didn’t love, or chose to care for a spouse because they felt it was their religious duty.

“When you’ve cared for someone who you may not have loved, and the sense of stigma associated with that in terms of the spiritual or religious faith – you do your duty, together in sickness and in health – which is great and ties people together.

“But there is that sense that that’s what you do. You look after your husband or your wife because that’s what you’re committed to doing, but sometimes we don’t talk about the difficult parts that maybe they weren’t a great parent or they weren’t a great partner and the challenge is therein,” says Liam.

After explaining what a former carer may feel, the booklet then outlines what can help in dealing with these types of emotions. Some suggestions include asking for and accepting help or developing new routines, considering hobbies and becoming more informed about grief.

Many former carers may not have kept in touch with a relative or friend due to the time spent caring for their partner or child, and so a healthy way to deal with loss is to catch up with a missed one.

Another vital issue that the booklet addresses is how to deal with the financial aspects after a person who you have been caring for has died.

When caring finishes, practical matters need dealt with such as registering the death, and paying for the funeral.

Carers may need to get access to the deceased person’s money to help pay for the funeral, which can be more difficult if the will is in their name only. The booklet provides websites and information when dealing with these types of monetary difficulties.

Focusing on a similar theme, a section is dedicated to returning to work as many former carers need secure financial stability, and work may also help an ex-carer regain a sense of purpose and provide a new structure to their life.

Notably, many carers have acquired various new skills that may be attractive to an employer. For instance, carers must show initiative, be flexible, solve a variety of problems, and be empathetic.

Describing the booklet, Annie said: “Though not returning to work myself I was thrilled that the skills family carers have to offer an employer was set out in a clear and reassuring way for those contemplating going back to work. I really like the tone of the booklet. I found it gentle and had a personal feel as though it was just written for me.”

If returning to work immediately isn’t an attractive option, the booklet also suggests retraining and study. Learning something new may be an excellent opportunity to reinvigorate oneself after countless years of caring.

Acquiring news skills will also help build confidence and progress plans to enter further education. Numerous opportunities are suggested from a short evening course to a degree, or a DIY class to vocational/accredited training.

Some family carers also choose to volunteer after their caring is complete, such as carrying out fundraising activities and helping to deliver services.

As many carers enjoy the feeling of being helpful towards someone else, volunteering is the perfect opportunity to experience this feeling but in a different context. It is also a healthy way to cope with loss, interact with new people and find a more personal meaning to your life again.

Together with a number of not-for-profit organisations, brought together by Care Alliance Ireland, the booklet will be distributed to former family carers across the country.

For Liam, it is important that former family carers get the attention and support that they need, considering the indispensable role that they play in Irish society.

“I want to thank people for caring. That is an important part of our community that people do that, that there is such a wonderful tradition of people looking after each other,” he says.

The booklet is available free of charge to former family carers and available to download at www.carealliance.ie. Hard copies can be requested by email info@carealliance.ie