Ms Sinead Tighe:

While financial aid is essential in supporting family carers, access to vital services such as respite, including emergency respite, is critical. Respite is crucial to family carers as it helps prevent burnout and protects physical and mental health and well-being. It is not a luxury; it is a necessity. Despite this, 72% of carers surveyed in the State of Caring 2024 report have never received respite.

I am a mother, carer and advocate for my beautiful son, Daniel, who is now 18 years of age. he has a rare genetic condition, Sotos syndrome, which causes overgrowth, severe intellectual disability and epilepsy. Dan is non-verbal, incontinent, visually impaired with behaviours that challenge, has low mobility and feeding difficulties and requires 24-7 care, which is very difficult. I have to facilitate everything for Daniel from washing, dressing and shaving to anything you can think of that a man has to do for himself.

In the summer of 2024, I had been caring for 17 years and became so ill that my GP thought I was having a stroke. I could not hold my head up and my arms were aching. I was a very active woman but all of a sudden my body and my mental health had failed me. I was later diagnosed with physical and mental burnout and was told I had to learn to care for myself. It has taken two years to bring myself back to the person I once was. I had to go to psychotherapy. I had to go to regular GP appointments to have my bloods tested. I had to go to a gynaecologist to check the time of life I was in, because I was ignoring that. As carers, we do not look after our health. I had to go to psychotherapy to learn to deal with all the grief and everything I had kept inside my body for years. He reckoned the stress of dealing with that grief and the fight I have had for my son had burned me out completely. I learned a lot in that journey about how to care and how to look after myself to sustain the life of caring.

One of the most important things in that is respite. Respite care is crucial to me as it gives me a break from caring. It allows me to focus on my physical, mental and emotional well-being. I can spend time with my immediate family, meet friends and, more importantly, concentrate on self-care, which is impossible for me to do when caring for Dan. It also gives me peace of mind that Dan is being looked after by professionals who can tend to his every need just like I can. All full-time carers should have a right to appropriate, free and regular respite based on their needs and the needs of their loved one. Without this, it puts carers at a much higher risk of burnout and other medical problems.

We need a respite strategy that includes an audit of respite provision and needs across the country, together with funding to respond to those needs. We need to know that if we have an emergency in our lives we have someone to call on to provide emergency backup and that is why the emergency respite provided by Family Carers Ireland is so important. I hope I never need it but I need to know it is there for me if I do, especially now as I am getting older and health issues may come in time. It also needs to be fully funded and guaranteed.