IT’S THE MID-1950s, you are young, with your whole life ahead of you, marrying your sweetheart. You both pledge to be together in sickness and in health for as long as you both shall live.
It never even enters your head that when you get older, your need for services will separate you and dash your hopes of spending your later years living in the care of each other.
This is exactly what has happened to Michael and Kathleen Devereaux, aged 90 and 85 respectively, married for 63 years.
Speaking earlier this week on RTE’s Liveline, Michael and Kathleen told the story of how they had both applied for Fair Deal but only Michael had fulfilled the criteria. Kathleen had been deemed capable of continuing to live independently, leaving her to live at home alone for the first time at 85 years old.
Plea for humanity
Over the last few days, both the Minister for Health and the Taoiseach have condemned this mistake of bureaucracy and it looks like Michael and Kathleen will be reunited. This is good news. They deserve to be together. But to achieve this response, they had to take to the national airwaves to make an emotional plea for humanity.
People who are older or who have disabilities don’t just need care, they need compassion. In fact, compassion can reduce their need for care. Michael and Kathleen will have a far better quality, and maybe even quantity, of life together than they would apart.
The HSE is a large bureaucracy. But it is made up of people, capable of compassion, who if given some discretion, can make the right decision ̶ one which makes people’s lives better rather than just keeping them safe. There’s a difference between being looked after and being safe. We need a far greater emphasis on kindness and compassion in our policies.
Look after each other at home
Greater diversity in the menu of supports available for older people and people with disabilities is required. The Fair Deal scheme for nursing homes is a statutory scheme, so it gets priority, but it is possible that people like Michael and Kathleen might be able to look after each other at home with the required support and for similar cost. It will be interesting to see the proposals for a new statutory home care scheme expected to be published for consultation by the new Minister for Older People, Jim Daly TD in the coming days.
The trouble is, Michael and Kathleen aren’t alone. Throughout the country, decisions are being made for financial or administrative reasons which negatively affect people’s natural supports, their relationships and their families.
Loneliness has a cost which needs to be recognised by decision-makers. A report published last year by the Institute of Public Health, Loneliness and ageing: Ireland, North and South found that loneliness amongst older people may be linked to depression and anxiety, increased stress, heightened risk of heart disease and stroke, and cognitive decline.
The impact on relationships
These are big situations which are similar to the one the Devereaux family found itself in, but there are other smaller decisions taken every day which have a big impact on families. Something small like making a decision to get a person with a disability a hospital bed at home, to make it easier to administer personal care, means the double bed the person shares with their partner has to go. Little consideration is given to how decisions about delivering care impact on relationships.
Ultimately, it is from relationships, love and compassion that we most derive our quality of life. For a person with substantial care needs, the support of strong, personal and family relationships can help to overcome the indignities of care and give a sense of value by boosting self-esteem and self-worth.
Health and social care policy needs to preserve and nurture these relationships in people’s lives. People will be happier. Their quality of life will be better and the cost of supporting them will almost certainly be lower.
Sonya Felton is Head of Public Affairs and Advocacy with the Rehab Group which provided nearly 198,000 hours of home support to people in their homes and communities in 2016.
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