“It’s Not Easy”: The Truth About Living With Someone Else’s Long Term Illness

Every family has their problems. I bet you can think of one of your own; sometimes it’s a rebellious teenager acting out. Other times it’s divorce, heated arguments or even the death of a loved-one. For my family, it’s long-term illness. My dad has had multiple sclerosis (MS) since before I was born, and while I don’t know any different, I am nevertheless aware that my life has followed a very precise path because of it.

Living with someone who’s unwell changes things. From not being able to have a rug in the living room (the wheelchair won’t go over it), to not being able to go on family holidays (the plane isn’t suitable), you start to see the world differently than someone whose family is healthy.

My mam left her job to be Dad’s full-time carer, and our home is filled with hospital equipment and medication. When I was on my J1 in the States, I had to book an emergency flight home because dad took a turn and ended up in ICU. And now that he’s finally qualified for home-help, an array of carers come and go from our house every single morning, making privacy a thing of the past. Throw in the heartbreak of seeing someone you love being so unwell, and you’ve got the makings of a stressful situation.

Almost 40 per cent of people in Ireland are living with a long-term illness, and by default, so too are their families. Adele, a single mum of three from Westmeath, is living with her son’s illness, as are her two daughters. Alex, who will soon turn three, was diagnosed with Pierre Robin Syndrome shortly after he was born, which has led to a variety of health issues for the tot. He had a tracheostomy inserted for 18 months to help him breathe. “Then he had the bigger bowel removed, as well as three triple bipasses and the hole in his heart repaired – all before the age of one,” his mum tells me.

“I moved my daughters up with me, and we lived in the Ronald McDonald house for a long time…”

“He has long-term feeding issues too,” she explains, “he can’t take anything orally so we got a peg put in,” which is a tube allowing Alex to be fed directly into his stomach. “They have that on a free drainage bag, so basically Alex can’t get sick out of his mouth, he gets sick into that bag. And he has a jejunostomy tube going into the smaller bowel, which I feed him through for 19 hours out of 24.”

His diagnosis flipped Adele’s world upside-down, and when asked what the biggest change has been, she tells me, “everything.” The young mother tried to move her life to Dublin while Alex was an inpatient at Our Lady’s Children’s Hospital, Crumlin. “I moved my daughters up with me, and we lived in the Ronald McDonald house for a long time. I put them into school in the hospital there, but I got into trouble with the Board of Education because the hours weren’t adding up.” Since then, the girls have been staying with relatives while Adele gets the bus, almost daily, from Westmeath to Dublin. “I haven’t seen one of my daughters in two months.”

“When Alex got his breathing tube put in, the girls’ dolls got one…”

But she somehow remains positive. “I have to do what I have to do”, she says, “It’s not easy but I do it because it’s my son. As long as he’s alive, I’ll keep going. I’ve stood by him from day one, I’ve never walked away. I try, I do try…” Seeing your loved one in pain is heartbreaking, and yes it makes you want to cry, scream, or sometimes even lash out. But it also teaches you to value the more important things in life. Being around someone who needs help makes you more aware of people’s needs, and in turn, helps you become a more compassionate person. Adele’s daughters, aged 5 and 9, have already learned to care for their brother without even realising. “When Alex got his breathing tube put in, the girls’ dolls got one. When Alex got his feeding tube, their dolls got one. So they were basically doing their training on their dolls. They’re very equipped – they can syringe up meds and flush, they do as much as I do.”

Psychotherapist Geraldine Mulpeter from MyMind.org says this open communication among siblings when a child is sick is a positive thing. “Reassurance and feeling supported will help young people express what´s happening at home and how it affects them. It can be a frightening time so an environment of openness where the child feels it’s okay to talk is really important.” Her colleague, Karen O’Leary, adds that, “Young caregivers have a greater understanding of the needs of other people, compared to their non-caregiving peers. They experience a positive reaction to being needed, which can promote feelings of being a worthwhile, contributing person, as well as an increased closeness to the person being cared for.”

The main difficulty for Adele is finding the right support to bring Alex home. He did get to leave hospital briefly, but the facilities promised to him never came to fruition, and now he’s back in Crumlin. “I was sent home from Crumlin with a homecare package,” Adele explains, “but unfortunately when we got home to our own community in Westmeath, they fecked everything up. They said we had refused the help. There was a lot of lies, there was an awful lot of fighting. Basically, they couldn’t fulfil the nursing space, so they tried to make me move house, but I fought to stay where I was. Now to get home-help, I’ll have to move from Ballinalack to Mullingar.”

“They don’t cover his transport to hospital, they don’t cover his appointments, I get no support.”

Adele isn’t entitled to respite until Alex is five, which means she can’t get a break to catch up on sleep or to spend more time with her daughters. “There’s nobody trained to care for him. I could put him into respite, but I’d have to go in and care for him myself, so there’s no point,” she says. “The HSE is a disgrace,” she continues, “They’re not giving him a chance. At the moment they’re threatening to put my son into temporary care because we’ve no home help. I’m obviously not taking that too well. I’ve told them that he’s not going into care, I’m well capable of caring for him. They just need to get me the supports to have him at home, or else leave him in hospital and I’ll go up and down everyday like I’m doing. I’m not looking for help seven nights a week. Even two nights a week, just anything… They don’t cover his transport to hospital, they don’t cover his appointments, I get no support. I’m paying taxis to pick up his equipment from the HSE stores. That’s how bad it is. Now the hospital has hit me with a bill of €1500 for sleeping there.”

One of the only organisations who has helped her is Cliona’s Foundation. “In April 2015, they sent us a cheque for €1500 and that helped an awful lot. What happened at that time was we were in the process of losing our house, because we were also paying rent in Dublin.” Without the charity’s help, Adele and her children could have lost their family home, so she’s incredibly grateful to them for it. “It was very hard, but it gave us a break from the hospital.” In many instances, charity is the only way families can survive a long-term illness. In my case, it’s the MS Society who provide respite for dad, not any government funding. Every donation made to organisations like these make a world of difference to families like mine and Adele’s, and every cent can quite literally be life changing.

Even with all of the difficulties, Adele is eager to offer advice to others who might someday find themselves in her position. “Nobody will ever understand until it hits their door. Believe it or not, I used to sit and watch Jeremy Kyle and see all those little babies with breathing tubes, and I never once thought that that would be me. My advice would be to not take a child home from the hospital until supports are in place.” She learned the hard way. When Alex was previously discharged without a homecare package, she says, “I fell apart – I lived on my sitting-room floor with him and went from 14 stone down to eight.” Now that her son is back in hospital, she refuses to take him home until the correct supports are in place. “It’s hard,” she advises, “but stay strong and keep them there.”

Living with someone else’s long-term illness comes with challenges, but it’s also an opportunity to take those challenges on and become stronger people in the process. While we struggle to see our loved-ones so sick, our experience of caring for them enables us to help other families who might find themselves in the same position. “No matter how hard it is, I’m there every day.”

Since this article was published in the October issue of STELLAR Magazine, Alex has had two more operations. His family are calling for urgent funding, and if you’d like to help, you can donate to his GoFundMe page here.