‘Sometimes I feel like a prisoner in my own home’

Louise Mac an Tsaoi is married to Seán and has three sons – Fiachna (27), Cormac (25) and Liam (7).

The Galway woman takes care of her youngest child Liam who has lung disease and PKU, a metabolic disorder which means he is unable to process certain proteins so is PEG fed through his stomach. Born at 23 weeks, he had a bowel infection which resulted in a leg amputation and, this year, he was diagnosed with autism.

Her husband Seán (54) was diagnosed in 2016 with Pick’s disease (frontal lobe temporal dementia) and Parkinson’s disease and is now in a nursing home.

Despite all of these issues, the 51-year-old is upbeat and is positive about the fact that Liam will have his tracheostomy removed within a year and he has just recently had his dream come true when the Make-a-Wish Foundation granted him the wish of having a specially designed garden where he can play safely with his two big loves – trains and the great outdoors. His very own peaceful, accessible garden includes soft play surfaces, planting and a train for the young boy to call his own.

Five of the best apps to help reduce stress and anxiety

---

My Left Nut: ‘My testicle was so big, you could play it like a bongo’

---

How much physical activity should we undertake?

---

We spoke to this health hero to see what she thinks can be done to improve the health services in Ireland.

1) What is your proudest achievement?

"After exhausting every avenue meeting Ministers, TDs, councillors and finally turning to Joe Duffy (to get Liam home from hospital), I felt a huge burden had been lifted. We were no longer alone; our cries had been heard. Within a few days, all political parties were on board, promising that Liam would get home. We had been waiting for a transfer request to move him to Galway hospital, and were told it was in motion. The overwhelming support from the public at large did our hearts a world of good."

2) What motivates you in your work and life?

“I thoroughly enjoyed working as a school secretary but when Liam arrived 17 weeks early, my full-time role changed from being a secretary, to being Liam’s manager 24/7. I had to juggle my home life, my husband and my two teenage sons doing exams and being separated from them (while Liam was in hospital) with no end in sight. My family are my world and I am a very positive person and try to dwell on all the good things in life – but when sometimes I feel like it’s all crashing down around me, I just put up a brave front.”

3) What do you do to keep mind and body healthy and well?

“Now that we have a new garden, come hail rain or snow, Liam will be escaping to enjoy his space, and I will be running after him. Unfortunately, having had to live in Crumlin hospital for almost four years, I was unable to cook proper dinners but when Liam returns to school, I hope to start spending time looking after myself – like all mothers we put ourselves last in the pecking order.”

4) What are the most important factors to maintain a healthy society?

“All our citizens and refugees need to be treated fairly and with respect. We need to ensure that our sick children and vulnerable adults are nurtured and every effort should be made to ensure that they have early intervention so they can reach their potential.”

5) What needs to be done in Ireland to achieve this?

“Liam is home with us today as a result of a generous care package and we are grateful. But my husband is in a nursing home due to his complex needs so I can’t even go for a walk in the countryside or for a coffee as I must always remain with Liam in the house. Sometimes I feel like a prisoner in my own home. Countless families in Ireland are spending a huge number of hours caring for children and adults with special needs, or elderly parents and relatives and we need to ensure that these carers are given respite.”

6) What do you think is the most pressing health issue in Ireland today?

“Carers are not given enough respite and allowance as they are saving the health system millions of euros annually. Our job is not a 40-hour week – it’s every waking hour and when we can sleep, we are dreaming of better days.

“While I was caring for Liam for almost four years in the hospital from 7am to midnight and sometimes through the night when he was particularly unwell, I did not receive a carer’s allowance.

You are not entitled to this while your child is in hospital. I was unable to work, so I was not entitled to job seeker’s allowance. My child was in long-term care and I had to pay for the ‘emergency parents’ accommodation’ which used up a substantial portion of our income. There are no breaks for families like us. But we did not choose this path.”

7) How do you think the Minister for Health needs to tackle this?

“Management and resources in the HSE are not used efficiently. There is too much overlap, too little ownership and accountability, too much wastage of vital resources. Parents caring for their child in hospital should be given a carer’s allowance at the very minimum. Each family should be dealt with case by case, to ensure that necessary funds are used fairly and wastage is to a minimum.

Equipment for children with complex needs should be provided. We live in a rural area and Liam uses a wheelchair, but when I bring him for a walk on our country roads, I need a buggy, but the HSE will only provide one or the other. We fundraised for this buggy but it shouldn’t be this hard.”

8) What do you do to relax and unwind?

“I am sleep deprived, so a nap is an absolute luxury. As Liam commandeers the TV during the day, once he is gone to bed and the night nurse has arrived, I love nothing better than to catch up on a recorded soap on TV and then after a quick check on Facebook I’m off to bed, but being so exhausted it can be hard to sleep.

I love music and would love to go to a show, but this will have to wait. In a few years I will hopefully bring Liam to a musical, he would simply love it. The apple doesn’t fall far from the tree.”

9) What makes you laugh?

“A good joke, a witty card and Liam’s antics with my grand-daughter Hollie who we see a lot of. They are as thick as thieves and bring screaming and laughter and mess associated with their antics right into the house. I love visitors, baking, chats and stories. I love our pets, we have three cats; Luna, Oreo and Toffo and a dog called Rocko. They are the life and the soul of the party and Liam shares the limelight with them. What those pets have taught Liam is immeasurable.”

10) Where would you like to live other than Ireland and why?

“I love Ireland, especially Galway. We have an amazing country with outstanding natural beauty, but the health service and homecare are awful – so I would happily move somewhere with a fantastic health and homecare services for families with children like Liam.”

[ irishtimes.com/healthheroes ]

Our Health Heroes
1 - Martin Nevin: Even unwashed and medicated up to my eyes, Martin makes me feel beautiful
2 - Maureen Durcan: That so many live on the poverty line in Ireland is incredibly sad
3 - John Burke: Managing mental health should not be like climbing a mountain
4 - Derek Devoy: The Kilkenny taxi man whose drive saves lives
5 - Sarah Fitzgibbon: Society has to stop treating the marginalised and disabled as charity cases
6 - Kathleen King: I wanted to make sure no one else would have to wait nine years for a diagnosis
7 - Caoimhe Bennett: The schoolgirl raising understanding about young carers
8 - Ann Norton: Our hospitals are a disgrace. We are letting down our doctors, nurses and whole society
9 - Una McNicholas: My proudest achievement is being able to help care for my sister
10 - Catherine Cox: Family carers are a hidden army of exceptional people fulfilling a role they did not ask for
11 - Prof Rose Anne Kenny: Good friendships make for a healthy life as much as regular exercise and healthy diet
12 - Dr Robert O'Connor: Within my lifetime we could eradicate cervical cancer with the HPV vaccine and screening
13 - Claire Cahill and Michelle Long: Scoliosis campaigners battling to reduce waiting times for children
14 - Prof Donal O'Shea: The shocking fact is that most ill-health now comes from our lifestyle
15 - Nuala Geraghty: Every time we place a dog, it's like giving new life to each family
16 - Mavis Ubuntu: Cooking was a right that was taken away from us
17 - Krysia Lynch: A healthy society starts in utero
18 - Paula Robinson: The self-sacrifice that carers make on a daily basis is immense
19 - Joanne Farrell: 'I'm very proud of my team and our brain injury survivors'