Aftermath of Covid-19 for some families: ‘There really is no end to this’

Difficult decisions loom for cocooning families of children with complex care needs

Maria O’Brien has had to be so much more than a mother, all day, every day, to her eldest son, four-year-old Harry, since lockdown came early to their family home.

Nurse, physiotherapist, occupational therapist and specialist early-years educator are all roles she takes on as she cares for Harry, who was born with a life-limiting condition, along with his little brother Ben (18 months). She and her husband, Denis, who is working full-time from their home in Sallins, Co Kildare, are cut off from much of the usual support of services, family and friends as they continue to cocoon to try to protect their immuno-compromised little boy.

They made the "very hard" decision to stop the 40 hours a month of nursing hours they were receiving through the charity Jack and Jill, as those nurses were also working elsewhere. But as one of the two HSE nurses who were providing night cover was not working with any other family, they were happy that she alone came into their house to do the 11pm-7am night shifts, Monday to Friday.

Up to the first week of March, Harry, who is non-mobile, non-verbal, visually impaired and has complex care needs due to a very rare syndrome called Genitopatellar, was attending school five days a week – four at a specialist pre-school, Early Years in Newbridge, Co Kildare, and one at ChildVision in Drumcondra, Dublin, where he had weekly horse therapy.

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“He loves school and he loves the interaction,” says O’Brien, who decided to withdraw him from school and therapy a week before they were closed down on March 12th.

“Our everyday life before Covid-19 would revolve around schools, therapies, appointments. Now we are not doing any of that, it feels a bit strange.

“That was our kind of social outing as well. Even though they are therapists and nurses, you are still having one-to-one contact with an adult. We’re feeling it at the moment. We are missing our family.”

Her parents, who live in Belmullet, Co Mayo, haven’t seen the children since Christmas and Denis’s family are in Tipperary town.

No one in the house has even gone to a shop in the last three months. “I would be too petrified to go, even though there is social distancing,” says O’Brien, who has organised deliveries and is also helped by “fantastic” neighbours who leave shopping at the door.

"It is full on now," she says of her daily routine. "When Harry was at school and the Jack and Jill nurses came, it gave me a chance to go off and be myself." She would use that time to go for a walk, have her nails done, or maybe she and Denis would have a "date night" at the cinema.

“I know when you become a parent everything changes, but when you become a special needs parent, it’s double.” And then some.

“Some days are worse than others. I am uncertain, then, am I doing enough for Harry? He had all those specialists, so I don’t know if I am enough. It’s the mammy guilt, isn’t it?” she says with a laugh. There is also the worry about not having enough time for Ben.

“At least when Harry was at school, or with the Jack and Jill nurses, I was able to have one-to-one interaction with Ben. That’s a massive loss and I don’t know when it’s going to get back to normal – or if it ever will. You want some of that normality but you don’t want Harry to get sick. It is a big worry.”

At the start of the pandemic, about two-thirds of the 340 families supported by Jack and Jill in caring at home for children decided to stop those visits.  But the service continues to be a phone call away – and indeed some nurse visits take place through a window, or, now, at a distance in the garden.

Every family was left to make their own decision about cocooning with or without the invaluable, practical and emotional support those nurses bring into their homes.

"We tried not to influence it either way because every family is different; their circumstances are different, their support mechanisms are different," says Mary Joe Guilfoyle, the longest-serving of Jack and Jill's 15 liaison nurses, or case managers. They cover the 26 counties, meeting families to review care needs and to assist in the sourcing of nurses to provide hours, which the charity helps fund.

What neither the families nor the nurses realised in the early stages of the coronavirus pandemic, says Guilfoyle, is “that there really is no end to this”.  It’s dawning on families now that they need to start making choices again, about whether or not they will continue to cocoon to the same extent while the rest of society is beginning to reopen.

Guilfoyle, who “misses Harry’s cuddles and wonderful laugh”, says she and her colleagues are helping families to assess if they are ready to take the next step towards some sort of normality.  Many are grappling with similar issues: the “what ifs” of allowing other people into the home, yet realising if the pressure of continuing to manage alone becomes too much, their whole household scaffolding may collapse – and then what?

“We are trying to have conversations with them that say, ‘you have got to mind yourself in all of this because you are key to this continuing to work at home,’ ” says Guilfoyle. The charity expects at least half its families will be requesting home visits over the summer months.

The HSE has maintained nurse-led, paediatric home-care packages throughout the pandemic, except where families asked for them to be suspended.

“Once families requested this and their request was agreed, the providers maintained telephone contact with them throughout the suspension,” says a HSE spokeswoman. “Most nurse-led home-care services that had been suspended are now reinstated in full or in part at the request of, and by agreement with, the families.”  A small number of new packages were also approved during this period, she adds.

Jack and Jill also had new referrals, says chief executive Carmel Doyle, "some of whom were end-of-life cases that passed away within 48 hours of being home supported by the Jack and Jill nursing team".

Continuation of the charity’s work depends on constant fundraising and it is looking at the prospect of a €500,000 deficit by the end of this year, although Doyle refuses to accept this as inevitable.

“It would force us to reduce the number of hours we fund for families and prevent us from extending the age limit from five to six years of age, something we’ve been piloting this year,” she says.  “However, it’s a long way until December 31st and we are determined to counteract this drop in fundraising through our SOS Appeal and by signing up for every grant scheme and Government support open to us, such as the stability fund and the wage-subsidy scheme.”

The only in-home care help that Suzannah Kearney has for her son Che, who was born at 24 weeks and has complex health needs, comes from Jack and Jill. Although she was “terrified” at the start of the lockdown, she had no choice but to continue having the nurses coming in.

Every Monday, Wednesday and Friday, Kearney must go to the Mater hospital for a life-saving 3½ hours on dialysis. Suffering from a genetic kidney disease, she went into renal failure straight after Che’s birth in June 2017 and is awaiting a transplant.

A nurse comes in for six hours each of those days, covering her time out of the house and waits while she now showers and changes all her clothes on return, to minimise the risk of infection.

Separated from Che’s father, Kearney went into lockdown with her son on March 14th, bringing in her 73-year-old mother, who is a diabetic and has had a kidney transplant, to cocoon with them in their Finglas home. With Che being immuno-compromised, she already had a stock of hand gels, masks etc to help protect them all.

“The change was very difficult,” Kearney says. “I couldn’t settle down the first three weeks – I wasn’t sleeping, I wasn’t eating, just stressed.”

Not only was she cut off from friends and family who she and Che used to go and see regularly but she was also "completely terrified" about the potential risks from having to go in and out of the Mater and letting nurses, who also work in CHI@Temple Street, into the house. The dialysis staff were concerned at her losing weight.

She was constantly worried she would bring the virus back to her vulnerable mother and son. She doubts if Che, who has chronic lung disease, would survive a bad dose of Covid-19. While she was also anxious about the nurses coming into the house, she knew how careful they were.

After the first few weeks, her anxiety abated and their “little bubble” of three settled into the new way of life. Che’s father drops in any shopping they need and Kearney has found FaceTime great for contacting friends and family.  With the fine weather, she has been out in the back garden a lot, playing with Che and his toys.

“It has worked out really well,” she says of their cocooning. Che continues to be “the happiest little fella”. However, her wider family was hit by the death of her mother’s 75-year-old brother, due to Covid-19 illness.

“My Mam is trying to grieve for him but it doesn’t feel real. She couldn’t go to the funeral so it feels like he hasn’t died; there was no kind of finality to it.” Her mother has not been out of the house since the day she arrived in mid-March.

As for the prospect of their bubble reopening, “I am taking it day by day,” says Kearney, who can’t see herself feeling safe about having visitors in their house for another year, nor attending big family gatherings.

She will be “very cautious” about Che going back to ChildVision, resuming therapy at CRC and starting three days at the Daughters of Charity in Clonsilla, as was the plan from September. “I can only follow advice and guidance.”

The O’Brien family has also been wondering where it fits into the reopening Ireland roadmap. “It is very scary,” says Maria. “I am looking at phase two and going, ‘I will still be doing the same as I was in the second week in March’. Nothing is going to change for us.”

However, they are talking about having Jack and Jill nurses back in their home. They also hope that, now the rest of the population has got a glimpse into their world of being ever vigilant against infection, they will eventually emerge into a more understanding Ireland. “This is just another virus that we have to be on the lookout for,” Maria adds. “We are kind of hoping people will be a bit smarter going forward.”

Marooned in Dublin due to Covid-19 

Derek and Geraldine Ryan have been living in the Ronald McDonald House beside the children’s hospital in Crumlin since April 2019, after their first child, James, was born with heart defects and other health complications.

Already separated from friends and family back home in Swinford, Co Mayo, the start of the coronavirus lockdown cut them off from their new friends in the house as well.

“The communal areas were closed off so we couldn’t socialise with other parents,” says Derek. Only one person at a time is allowed in the kitchen area. No new families were coming in and those whose children were well enough went home.

“At one stage there was just myself and my wife and one other family left in the house,” he says of the residence that can accommodate up to 20 families.

All the parents in the house support each other “and all of a sudden that was taken away. You couldn’t sit down and chat to them.” There were two families “whose babies didn’t make it and we couldn’t sympathise with them”.

The Ryans have not yet been home with James, who was born on March 10th, 2019 at 34 weeks, weighing just 1.49kg. While they knew about his heart defects before the birth, afterwards it was discovered his upper airways hadn’t formed, which necessitated the fitting of a tracheostomy tube at two months.

The couple find it hard that Covid-19 restrictions mean only one parent at a time is allowed in the hospital, so they have to split the care between them.

“It has been strange that we can’t actually spend time together either,” he says. “It is tough being on your own, especially as our boy is 14-months-old and wants to be doing things.”

Worries about coronavirus were very intense for them at first and all hospital staff must wear full personal protection equipment (PPE) before entering James’s room. “He doesn’t get to see their faces and I think it must be very strange to him.”

But he and Geraldine don’t have to wear masks when in with James and they feel secure seeing all the measures being taken both in the hospital and the house.

Before the pandemic, Derek had started going back to work part-time as a commercial vehicle tester, while Geraldine, who is on unpaid parental leave from work remained in Dublin all the time and is not entitled to the Covid-19 payment. She has now heard that the newsagent’s she has worked in for the past 24 years does not plan to reopen.

The last time they saw any of their family was for a planned first birthday party for their son on March 10th. Unfortunately, James had to be taken into ICU that day, so they ended up having family and cake in the Ronald McDonald house, without the birthday boy.

In their “new normal”, either Derek or Geraldine goes over to the hospital from about 8am. Whenever James has a nap, sometime between midday and 3pm, they swap places. They might change again about 8pm and 9pm as one of them has to be there until James goes to sleep. Some nights that could be 10pm, other nights it could be midnight or 1am.

Yet they are not recognised by the State as their son’s carers because he has never been discharged from hospital, so they are not entitled to any financial support. “It is hurtful to think we are doing everything we can for him and you’re just not classed as being his primary carer,” says Derek.

On the upside, James has improved so much, they were recently able to bring him out of the hospital building and up to their room in the Ronald McDonald House. “It was the first time,” says Derek, “we could close the door and be a family for an hour”.

Like so many others, the Ronald McDonald House Charities are struggling to keep fundraising; people can donate at rmhc.ie or text HOUSE to 50300 to give €4.