I spent the past two years being a full-time carer for my partner, who was terminally ill. Slowly losing the love of your life is incredibly tough, but on a practical level we felt lucky and privileged because, despite our situation, he was able to live at home with me in relative comfort.
He died a few weeks ago and since then the issue of unsupported carers in Ireland has been highlighted in the media. It's obvious from the reports that the Government and many people in Irish society neglect and ignore carers, especially those like the very brave Johanne Powell, who look after their disabled children for far longer, and in exponentially more difficult circumstances than I experienced.
The 200,000 unsupported care workers in Ireland are saving taxpayers four billion a year. One third of the HSE budget. Every citizen in the country should be on their knees thanking them for their sacrifice, because without it our healthcare system would cease to function.
It is time the Government took action to support carers by immediately (1) setting up a statutory register of carers and (2) creating a system to identify carers.
Statutory register
Towards the very end of my partner’s life I felt that we weren’t going to be able to cope at home so I sought support from public and private health providers.
The repetitive assessments with different administrators, useless meetings, research into charities, nursing homes and private care providers, form filling and paperwork were frustrating and time consuming. The only thing freely on offer was counselling, which I didn’t need. A person to help with the housework and his personal care would have been far more useful.
The Department of Health should immediately set up a well-funded proactive statutory register so that any of the 200,000 people working as carers can register their requirements. Carers need to stop being advocates for themselves and get on with the business of caring. They are the experts on their specific situation and know well what their families need in terms of support, whether it is home help, respite, or long-term residential care.
The fact that carers are unpaid workers with no status is grossly unfair. People don’t become carers by choice: they do it because the situation arises and they feel a moral responsibility. Often other family members can’t or won’t help and the burden falls on one person. The carer’s allowance isn’t sufficient and doesn’t reflect the economic value of the work of carers, many of whom are also in full-time employment and thus unfairly excluded from receiving benefits.
We have allowed yet another unpaid, exploited group to emerge in Irish society. Students, children, employees, disabled people and citizens over 66 have statutory rights. It is time that carers were given the legal recognition they deserve, along with statutorily defined benefits that reflect their contribution to the economy, including pension entitlements, paid leave from work, access to free travel, a medical card, a parking permit, a card that allows them discounts and anything else that is fair and helpful.
Becoming visible
Carers often say that they feel invisible. There were times when I had to be brusque (perhaps by skipping a queue or leaving places suddenly) due to my partner’s illness. If I had had a recognised way of signifying what I was doing it would have obviated the necessity to continually explain his condition and my behaviour in public.
Carers who wish to be identified should be encouraged to wear a specially designed badge with a carer symbol. A well co-ordinated media campaign by the Government or a private sponsor would give this symbol recognition and allow people in shops, the workplace and other public places to recognise carers and ease their day by automatically extending them patience and courtesy.
Carers are a valuable resource for the medical profession and other professionals who interact with people who are disabled or ill. They often act as advocates or channels for important information. During consultations in medical and other official environments I had vital information to impart about my partner’s condition, as his speech was impaired. Occasionally I was overlooked or ignored, so wearing a symbol of my role in his care would have been helpful. If such a symbol were available to carers, it would help to ensure they were consulted, recognised and respected in those environments.
Obviously these suggestions need political will and resources, so it is up to the media and the public to put pressure on politicians to act on this issue. We don’t have a great record of treating vulnerable people fairly in this country, so it’s time to put some order on the chaotic, unsupportive system that is unfortunately the status quo.
As the population ages, there will be a need for more people who care. If they continue to be unsupported they will at the very least be resentful and suffer a poor quality of life because no one took action to relieve their burden. If things get worse for carers, I have no doubt that there will be more stories in the media about uncared for people being found dead in their homes because they were abandoned by their families, neglected or something far worse.