Letters to the Editor: Burned-out carers let down by the State
Aisling McNiffe writes: We know that so many families who require respite for their loved ones don’t get any, or else they don’t get enough. I’m 'lucky' enough to be in the category of 'not getting enough'. Picture: iStock
I am writing to you regarding respite and residential care for those with additional needs.
We know that so many families who require respite for their loved ones don’t get any, or else they don’t get enough.
I’m “lucky” enough to be in the category of “not getting enough”.
I’m mum to two children, both now young adults: My daughter, 22, who has finished college and has just entered the workforce, and the other is my son, 21, who requires 24-hour nursing care. I am his sole carer.
Recently, my son, Jack, had a prolonged hospital admission for three months. Before that, his respite house was closed for renovations. I was due to take a week’s holiday in May while Jack was at respite but, because Jack was ill in hospital, I rescheduled it. When Jack is in hospital I need to be with him around the clock. I don’t have anyone to relieve me.
This is normal for our family and for so many others.
Respite is so important. I am 53 now and I am on a waiting list for a hip replacement. I have already had to have back surgery. It’s the wear and tear of being a carer unfortunately. And I am getting older! Eek!
We generally don’t get time to take care of ourselves, and often cannot attend hospital appointments or simply don’t have the means to pay for important appointments such as physiotherapy, dental, doctor, counselling, etc.
I have joined the gym/swimming pool a few times but end up not being able to go due to caring for my son. Swimming is so beneficial but it’s so hard to actually get time for yourself.
Recently, families, including ours, got a letter to say that a child was not collected from respite so that means that there will be no adult respite for the foreseeable future.
Our respite house alternate the weeks, so adults one week and children the next. The children will also be affected as there will always be one bed occupied and carers allocated to that child.
None of us blame the family in question for doing this as we all know too well that this family have probably been crying out for a residential placement and more support/ home help/ nursing/ respite for a long time. We stand in solidarity with them, it could be any of us.
But unfortunately we will all suffer. The State is negligent in not providing appropriate care for children and adults with additional needs including intellectual disability and autism. But it’s also negligent as now we have more families on their knees crying out for more help and more support, our family being one of them.
I want to ask the minister for health, the minister for disability, the Health Service Executive, the Department of Health, an Taoiseach and An Tánaiste what they are going to do about this situation. Otherwise, all of the carers who are burnt out are going to need residential places a lot sooner than you think. It’s not okay. This ties in with the ‘Before We Die’ campaign as it’s the same issue.
We cannot continue to care at home for our loved ones if we don’t have support. We are exhausted, burnt out, and so sick of begging for help and telling our stories publicly.
We also need regular respite and an individualised care plan for the future, not only when a crisis occurs. Nursing homes and hospitals are not the answer. It’s inappropriate.
Do you know I was offered respite for my beautiful son in a nursing home when he was 18 years old because he had aged out of Laura Lynn? I cried. Can you imagine being told that? I declined and waited the year it took for his new placement in a local respite house.
It is lovely, the staff are great but it’s no good if our children or adults cannot attend.
There is far too much form-filling, red tape, and obstacles, all of which I am allergic to.
So please I implore you to get this situation and all the others around the country sorted.
Our elderly are being excluded from society on a daily basis. People in their 80s and 90s are expected to use smartphones and apps to access basic rights.
If paying a bill or accessing bank account information requires the help of a son or daughter to go online or to press the various phone options, then Ireland is failing as a society. Technology should serve people and not exclude them. Imagine the elderly that have nobody to go online or advocate for themselves. Ireland urgently needs an Ombudsman for the elderly.
I was deeply disturbed to see my local TD, Cathal Crowe, dehumanising the teenagers who died in the M9 tragedy, branding them as “thugs” and arguing that “...our sympathies and concern should be for the victims.”
Compassion is not a limited resource that we need to triage. We can care about those victims who were seriously harmed by this reckless and inexcusable act, while also recognising that the death of these children was in itself a tragedy.
I understand that, in the wake of such a frightening incident, fear instinctively triggers our baser instincts. That anyone would so blatantly violate the norms that keep us safe leaves us yearning for vengeance — to punish those who have made us afraid. But the litany of failures that led to this incident require serious, dispassionate, reflection — not impulsive, emotional, outbursts. The price we will pay for feeding our wrath over our reason is a reinforcement of the very norms that led to this tragedy. Our leaders should know this. We should expect and demand better.
I share the shock and fear that most drivers feel upon realising this threat is something we may now have to face. It is genuinely terrifying. That being said, I worry that our collective response to this relatively rare incident has not been matched in scale or urgency by our response to the far more common threats that we each encounter daily — speeding, inattentive driving, and mobile phone use to name but a few.
These threats are omnipresent and it often feels as though we’ve accepted them as inevitable.
When we look to our leadership, is it any wonder Ireland’s roads have become increasingly lethal?
Tech companies have been allowed to flout the law by providing drivers with tools that allow them to detect and evade speed traps. We are experiencing the unchecked proliferation of cars that are getting larger and more dangerous. All problems that have emerged, and gone unchecked, under successive governments without any mitigative action.
We have built a culture around driving that prioritises personal liberty over collective safety. A culture that has led to road fatality figures growing rather than shrinking. A culture Mr Crowe himself contributed to with his suggestion, in May 2025, that people who are still learning to drive should be allowed to drive unaccompanied by a qualified driver.
As someone who lost far too many of my peers to our roads in my youth, I find it difficult to contain my anger at such recklessness from someone in a position of leadership. I find his pontificating on matters of road safety even harder to swallow.
Ireland’s relationship with driving is fundamentally broken. Rather than acknowledging private transportation as a privilege we must earn through responsible behaviour, we have framed the car as an inalienable right — to which our access must be protected at any cost. This attitude needs to change.
This is not a problem with a single solution. It is a complex problem borne of a multitude of failures, and we won’t solve them all overnight. What we can do is start the process by accepting and acknowledging that we even have a problem. Admit that we have allowed a culture of recklessness and impunity to take hold, and that our sense of entitlement around personal car ownership needs to end.
We are dangerously close to apathy, and learning to accept some road fatalities as inevitable and normal. Above all else we must catch ourselves before we allow this dangerous idea to take hold. We can fix this.
I wish to take issue with Paul Deane’s comments on the effectiveness of solar panels in the period October-April (‘Solar panels in Ireland: Could now be the time to cut your rising electricity bills?’ — , August 17).
We have 19 solar panels on our home and the amount generated in this period for the past 3 years was as follows:
- 2023/24 — 2,016Kwh;
- 2024/25 — 1,853Kwh;
- 2025/26 — 1,958Kwh.
This would equate to just under half an average household’s electricity used according to the Commission for Regulation of Utilities.
Mr Deane would want to do further research into the efficiency of solar panels before he comes out with comments like this especially as he is in a position of influence.
