Cycling brain injury: ‘I can’t put my 51-year-old husband in a nursing home. I think he’d die’

Last New Year's Eve, when midnight struck to welcome in 2020, Tara Dalton kissed her husband Des Vallely and said "it can't be any worse than last year" – because his widowed father had died in 2019.

A week later, their lives fell apart.

On the morning of January 8th, hours after Des had dropped their two children to their national school in south Dublin, he suffered catastrophic brain injuries in a fall from his electric bike in the city centre.

Daniel (12) and Ella Rose (9) didn't see their father again for another six months – and when they did, he was in a wheelchair, unable to speak and with a very large dent in his head where half his skull had been removed during life-saving surgery at Beaumont hospital.

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The outbreak of the coronavirus pandemic, which has brought grief and disruption to so many people, added another layer of complication to this personal tragedy. Recurring bans on hospital visitors made Tara feel that Des was being “locked away like a prisoner” from his family was doing him no favours for his rehabilitation.

He really regressed and it was awful

After a period of being able to see him daily in St Vincent's hospital, she had to go for a whole month without being with him in May, after he was transferred to the National Rehabilitation Hospital in Dún Laoghaire. He needed to stay in bed for much of that time too, to allow an infection site to heal.

“He really regressed and it was awful. After about a month they got me in; I was one of the first to be allowed in. He had stopped whispering, wasn’t swallowing anything anymore and he had stiffened up hugely. I believe it took him about two months, after I came in, to be back to where he was.” To her it seemed “a total waste of precious time”.

It was July before the children were reunited with him. She shows me the video she captured on her phone of those highly emotional moments as both children hug their beaming father – a smile, says Tara, that lasted 20 minutes and one she hadn’t seen before, or since.

When it was announced in mid-September that Dublin was moving to Level 3, reimposing hospital visitor restrictions, she resolved that she had to bring him home. “He needs us and we need him,” she says simply. But to make that happen is dauntingly complex – logistically, financially and emotionally.

She gathered friends with different, relevant areas of expertise to help devise a fund-raising campaign, Walk Des Home. Having worked out that costs for full-time care and nursing would come to about €400,000 for two years, she remembers telling a friend that's what she needed to raise and, while the friend didn't say anything, Tara could read the "are you for real?" expression on her face.

“I didn’t know whether I would raise €5,000 or €500,000 but it was amazing how well it went.” She feels the video that accompanies the gofundme appeal has helped drive it, to the three-quarters mark at the time of writing.

It’s at 3am when Tara feels most overwhelmed and plagued with doubts about what’s ahead. “I start to panic and think ‘am I doing the right thing? What if he gets sick?’.”

Despite all the “amazing” support of extended family, friends and neighbours, she knows everybody has to get on with their own lives. “You’re on your own at the end of the day.”

They look at years, not months or weeks

Although spared the ultimate bereavement, Tara and the children are dealing with many losses. Des, her husband of 14 years, co-parent, business partner and “my best friend”, has gone from her side and she is heartbroken for him.

“We had plans and dreams and they’ve all gone out the window. The reality of it is I don’t know if I’ll ever get them back. It’s really cruel for him. He is a big, active man, full of life, really positive. For that to be taken away from him; I actually don’t know how he’s coping.

“He does have a little bit of movement on the left-hand side and he has virtually nothing on the right-hand side, although he can wiggle his fingers and wiggle his toes, so there is a signal getting through. He can stand with bent legs but he can’t walk.”

She hangs on to the belief that “the brain is one of those organs that can do extraordinary things. Nothing might come but people have defied the odds over and over again when they [doctors] said nothing would happen”.

For now, Des communicates through whispers, blinks of the eyes when on video phone and uses a grid to type out words. On her last weekly visit to him before this interview, she asked him how he was feeling and he typed “okay” and she said no, how are you really feeling, are you sad, are you frustrated?

“He typed out ‘I am going to get better’.” She reckons he knows exactly what is going on and occasionally wonders would it be better if he didn’t. “But because he does know, he can work on it. There is a way to push it. If he didn’t know, there would be very little hope.”

While chatting to Des a number of weeks ago, he typed out: “What’s the plan?” Not knowing what he was referring to she asked, “what’s the plan for what?”. He typed “IVM”, which is their business, Irish Village Markets. He wanted to know what was going on with that.

People say 'you're so strong' and I just say 'am I'?

"For a brain injury it is still early days," says Tara. "They look at years, not months or weeks. There is still a lot of time to improve and he may have to go to England or Germany for more intensive rehab but the thing is to get him home for now and see how he improves. I know it is going to be very challenging but we have to give it a go and it will give him his very best chance."

She has very dark days, she says, her hazel-brown eyes above a blue face mask transmitting inner sorrow and exhaustion.

“I went through a phase when the anxiety was just unbelievable. I’d wake up in the morning and you get a couple of seconds and then I’d feel it creeping up and it just went on and on.”

Not only did 2020 bring Des's accident but then the couple's food markets business was brought to a halt by the pandemic; Des's younger brother died in a fall in Spain in April and the health of Tara's 88-year-old father deteriorated further after he had a stroke in his nursing home.

“People say ‘you’re so strong’ and I just say ‘am I’? I don’t have any choice. I have got two kids; I just have to get up and get on with it and try and make something out of it.”

She worries about how the children are coping, especially now they're having to move house so that Des can come to live with them, as their own home in Monkstown is not suitable.

“My 12-year-old is really struggling. Des would have coached his football team; he would have been a very strong male influence in his life. And I am struggling with him. I think he really misses Des but he won’t really talk about it. If anybody brings it up, he just changes the subject.

“My nine year old is a girl, she is easier to deal with. She has her moments, she cries, she misses Dad; we talk and she gets on with it. Kids are quite resilient; they learn just to accept and deal with what’s what. But I know it is having a big impact on them deep down.”

They have seen their father just four times since January and Daniel has made the big transition to secondary school since. “That was really difficult, just Des not being there.”

Tara too found the first few days after the schools reopened really hard. “You saw other parents congregating and laughing and I just felt so on my own. That was horrible actually.”

She feels Daniel and Ella Rose have been through enough trauma without uprooting them from their area and friends so, despite the "frightfully expensive" rents in south Dublin, she has found a suitable new property to rent in nearby Glenageary, where the builder offered to make a necessary adaptation. Her longer-term plan is to find a site on which they could build from scratch.

Although November 6th was the original date for Des’s discharge from the NRH, that has been extended while Tara gets his transfer organised and she hopes to be in their new home by the beginning of December. “So many people have told me that once you leave the NRH you’re on your own really. I need to have everything in place.”

The Royal Hospital, Donnybrook could be okay for him for step-down rehab, she says, but she believes bringing him home would be best and is adamant that the other institutional option open to him, a nursing home, is not on. “I cannot put my 51-year-old husband in a nursing home. I think he’d die to be honest. Even though I am really nervous and think I am well aware of the task in hand, I am really looking forward to him coming home.”

She recalls a comment Martina Cox made in a recent interview about missing the presence of her husband, Seán, the Liverpool supporter who suffered a brain injury in an assault by a rival fan, before she got him back into their Co Meath home. "I can really relate to that; even if Des isn't speaking, just to be with him."

Having grown up in Monkstown as one of two daughters of the local Church of Ireland rector, the Rev Kevin Dalton, and his wife Jennifer, she has found some comfort in that upbringing. "It's amazing how you start to pray when something like this happens. I am not overly religious, as my Dad would say I'm not 'gospel greedy'. But it's all you have to hold on to."

Her mother has described the situation as “beyond sad” and Tara says Des is “like the son she never had”. He had stepped in to help around her mother’s house when her father, who is 10 years older than his wife, had to go to a nursing home. “She’s really devastated as well.”

Tara, being “a very private person”, found it hard to put herself out there to launch the fund-raising campaign. “My even bigger worry was how will Des feel about it? I couldn’t really ask him because we didn’t have a choice, if we wanted to bring him home. But, again, Des wouldn’t want his private business out there and I worried if Des would want people to see him in a wheelchair and the situation he is in. But in hindsight it was definitely the right thing to do. Everybody has been so positive and so supportive. It has been amazing.”

She believes the simple but devastating nature of an accident “that could happen to anyone” resonated with people. Des was wearing a helmet but “it was just his head hit the wrong place” – a low concrete divider at the edge of the cycle lane.

Both her children ride bicycles and Tara has been terrified something would happen to them too. “Ella Rose only goes out with her friend’s mum and doesn’t cycle on her own at all.” But Daniel does “and I just have to swallow it. I can’t stop him cycling with his friends, that would be wrong. The other thing is he’s playing rugby…”, she trails off, nightmare imaginings of concussion or a broken neck left unspoken.

“You can’t let your own fears rub off on your kids, it’s not fair,” she adds firmly.

Despite her initial reservations, running the campaign has been “a blessing in disguise” because it keeps her busy. “You’re tied up in it and then you stop and it suddenly hits you why you’re doing it. I still haven’t fully got my head around what has happened.

“I still see him some days and get a shock that this is Des in a wheelchair, totally disabled.”

ACQUIRED BRAIN INJURY

An estimated 19,000 people in Ireland every year suffer a brain injury, classed either as non-traumatic, eg due to a stroke or tumour, or traumatic, through, say, a road traffic accident, fall or assault.

The effects range from a temporary setback to devastating life-changes for the affected individual and their family.

Neuro-rehabilitation is a relatively new way of working with brain injury survivors and in Ireland access to services is very much a lottery, says Karen Foley, the interim chief executive of Acquired Brain Injury Ireland. "It depends where you live."

The health services are focused on providing care but that, she points out, is a very short-sighted approach if an individual can be empowered to regain skills through appropriate therapy and support.

The Fair Deal scheme only applies to care in nursing homes, which are not suitable for many brain injury survivors. ABI Ireland believes the scheme should be extended to cover the provision of supports in the home.

The charity runs 15 residential rehabilitation services across the country and also has multi-disciplinary teams of professionals working both in the community and in private homes with brain injury survivors and their families.

A hidden impact of the pandemic, says Foley, has been the lack of access to services, activities and social connections, which are all vital for restoring cognitive abilities. There is a window of opportunity early on in brain injury survivors’ rehabilitation, in which they need consistent therapy to make gains.

“If there are gaps,” she adds, “it will impact on outcomes.”