Who are these parents desperate to outlive their children?

Résumé détaillé

It feels like we agree on so little in Ireland right now, but we all agree on this: the worst thing that could happen to a parent is to have to bury their own child. It is a grief…

It feels like we agree on so little in Ireland right now, but we all agree on this: the worst thing that could happen to a parent is to have to bury their own child. It is a grief that seems impossible to look at directly. While we can talk about a person who loses a parent, or the wife who loses a husband, or the loss of a sibling, our language fails us in trying to discuss the parent whose son or daughter dies before them.

A 66-year-old mother spoke to the Irish Examiner about hoping her daughter would die before she would, acknowledging “it’s not what any parent should say, or even think”. Last September, the Dáil heard that among the ageing parents of adults with intellectual disabilities, those unspeakable words are becoming common to the point of turning into a refrain. “I hope they go before me.”

Who are these people wishing for every parent’s worst nightmare? What could possibly make a parent hope to outlive their own child? The truth is, these parents are no different from the rest of us. They are simply people who have looked at what the Irish State has prepared for their children after their own death and concluded that their child’s premature death might be the kinder option.

What the State has prepared for them is similar to its preparations elsewhere in healthcare, social care, education, transportation and defence: absolutely nothing.

This becomes clear when looking at the data. About 2,000 adults with intellectual disabilities live at home with a parent aged over 70. More concerning, in the case of about 500 of them, the parent is over 80. When the parent collapses or even dies, a bed needs to be found for their adult child. Like much of Irish healthcare, it is often with a private provider, and one that is far from the home they have known.

These adults who lose their mother or father will simultaneously lose their bedroom, their hometown, their routine and all the faces they have known – all in the same week.

One father who spoke to The Irish Times…

Some…

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