Coronavirus and carers: ‘I am so scared right now’

All over the country, there are thousands of people in receipt of home-care packages from the HSE. These hours, which are not means tested, are available to everyone who has been assessed by a Public Health Nurse and deemed to be in need of service. It is part of an initiative that keeps people living in their own homes as long as possible. The HSE has 51,000 clients.

In addition to this, there are 195,263 full-time family carers in the country, according to the 2016 census. These are full-time carers, where one family member is the primary care giver to another. Family Carers Ireland estimate that the true figure is much higher – as much as 160,000 higher – as many family carers don’t identify themselves as such until a time of crisis.

In this unprecedented time, when people over 70 are being asked to stay at home, how are the carers – and those they care for – coping? These are three of their stories.

The Johnstones: ‘All Evan knows is that he was enjoying life, and now it has stopped’

The Johnstone family live near Kilmore Quay in Co Wexford. Jane Johnstone’s husband died five years ago, aged 50. She is now the sole family carer for Evan (19).

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“Evan is six foot four, completely non-verbal, has autism, profound intellectual disability, and poor vision,” she says. “As a carer, I would have spent a lot of time in the four walls of my home caring for the boys, so this kind of confinement isn’t new for us and won’t be for many carers. We are socially isolated and cut off from the world; we have had plenty of practice at it.”

Jane also cares for Daniel (15). He, too, has autism and attends a special school in Wexford. An older child, Ciara, who had been at college until it closed, is currently living back home.

'We thought we were starting to live a little bit again, and now this virus, to me, is like our world as we knew it has ended now'

“Daniel has some grasp as to why school has stopped, and we are at home all the time and why he has to keep washing his hands.”

It is a different narrative for Evan, whose day centre has also closed indefinitely.

“The way Evan understands the world is through structure and routine, and certain things happening every day. We know that the world as we know it has stopped, but Evan doesn’t have that abstract thinking. All he knows is that he was enjoying his life, and now it has all stopped.”

Prior to the shutdown of services, Evan had the help of a carer who got him up in the morning and dressed. Then, Monday to Friday, a bus took him to his day-care service. He was away from 9.30am to 3.30pm. That routine is currently suspended, leaving Jane with many challenges for which she had no contingency plans.

“We thought we were starting to live a little bit again, and now this virus, to me, is like our world as we knew it has ended now,” she says.

“Even in the good times, the mornings were a challenge. Evan has disruptive sleep patterns. He mightn’t sleep through the night for weeks. So if he’s up, I’m up.

“Evan has got very distressed on quite a few occasions since the routine changed. A few mornings ago, he was crying and shouting. He is a big guy, so we give him distance. He could lash out at any of us. He doesn’t mean to. He gets overwhelmed and he can’t cope. I was unable to console him. I was worried about his safety and for me and the other children.”

'I am not looking after myself. It's really hard to look after my own mental health'

The HSE provide a specialised care package for Evan, due to his high needs and being in a single-parent family. After Jane contacted them in distress, they sent two carers and a bus to take Evan out for two hours. It allowed Jane to briefly get out of the house to the beach with her other son with special needs.

“I am so scared right now. I am acutely aware there is a long stretch ahead of us,” she says. “It’s great that Evan was able to get out for those couple of hours, but what happens in a few weeks? He’ll need more, and he will get so upset at his routine gone.

“If I am honest, at the moment I am running on pure adrenaline. I am not looking after myself. It’s really hard to look after my own mental health.”

The Kellehers: ‘I know we are meant to be staying inside, but...’

“We made the decision that we wouldn’t hug. We have been married for 53 years and we are extremely close, but we are afraid to hug now. We don’t know the implications of it,” Dan Kelleher (74) says.

Dan and Maureen Kelleher (73) live in Cork city. Maureen is Dan's long-term primary carer; he has a chronic lung condition that requires him to be on oxygen, and has been in a wheelchair for some 13 years.

“I can’t be left alone in case I have a seizure,” Dan says. He also has two different carers who come in four times a week between them to get him up in the morning and attend to personal hygiene.

'We haven't discussed what would happen, because I am at the stage I don't want to know'

"I am dreading getting Coronavirus. I am afraid of my life of it. And I don't know what I would do if anything happened to Maureen and she got it."

The couple haven’t discussed what would happen should either become ill with Covid-19. “I think we are, both of us, are afraid to discuss it,’ Dan says. “I worry about how do we isolate ourselves from one another if Maureen gets it. If I get it, I will have to go into hospital. It is a very frightening time.”

“We haven’t discussed what would happen, because I am at the stage I don’t want to know,” Maureen says. “I am not as paranoid as Dan, but it’s him I am paranoid for. I have my own separate cup. We share a bedroom at the moment.

“If I got it, I would stay in the front room. If the carer who comes in got it, and couldn’t come any more, it wouldn’t bother me. I would just have to do those jobs myself for Dan.”

Is Dan worried that the home carers who visit him might unknowingly have been exposed to the virus?

“I do worry about that, but I am taking into consideration is that that they have other clients, but I am the first one they see in the mornings.”

'I have never done online shopping and don't know how to do it. I drive Maureen down to the supermarket... I don't know how to get the shopping done any other way'

Both Kellehers laugh when asked if they have been “cocooning” as Taoiseach Leo Varadkar recently advised older people to do.

“It’s grand for the Taoiseach to say that, but what are you meant to do for shopping?” Dan says. “You can’t do that unless you are in a very close-knit community, where people will check up on another. We don’t know most of our neighbours. And we haven’t seen our family since this started.

“What I would like is more information on how to go about getting things. We do have the internet, but I have never done online shopping and don’t know how to do it. I drive Maureen down to the supermarket, and wait in the car while she goes inside. I don’t know how to get the shopping done any other way.”

“I’m in and out of the supermarket. We go at 9am, before the crowds.” Maureen says. “I know we are meant to be staying inside, but I am stubborn and don’t want to ask my children for help.”

“It’s hard to ask for help,” Dan says. Maureen had a brain aneurism a couple of years ago, which is when they applied for home help in the morning for Dan.

“Maureen was against anyone coming in, but I insisted on it and I am glad I did because it really helps Maureen not to have shower me. I think anyone who has home help like us is very grateful to Family Carers Ireland for it.”

“This is going to carry on for months, there is no doubt in my mind about that,” says Maureen. “Family carers are only a number to the Government, but we should be listened to. I love my husband and will mind him as long as I can, but we should get more support at this time.”

Helen: ‘I am fearful of bringing home the virus’

Helen (not her real name) has been working as a home carer in Co Galway for nine years. Prior to that, she cared for a relative for six years. She currently has six different clients, of varying ages. some of whom she sees twice a day. “No matter what age they are, they all want to live,” she says.

Helen has a key for some clients’ homes. Last week, she let herself into the home of an 89-year-old woman, and found her lying on the floor. “I rang her son. I rang my own agency and asked would they ring an ambulance. She wasn’t brought to hospital, because of risk of infection. They just told her to get into bed. She never complained, but I knew when I went to turn her, it hurt her.”

Two days later, Helen called for the ambulance again. It came after two hours, and the woman was finally brought to hospital, where it was discovered she had a broken pelvis.

'Anxiety levels for clients have gone through the roof'

Helen herself is fearful of getting ill. “My husband has an underlying illness. I am fearful of bringing home the virus from work to him. I am going into houses and I don’t know who has been there. Some clients have more than one carer. There is one client I have been to and there are 12-14 different carers in a week. Some homes have an older couple, where both people are receiving care, from different carers.”

A couple of Helen’s clients live with one of their adult children and grandchildren. “I don’t know who the family members have been exposed to when they’ve been outside the home for shopping or exercise. There is no social distancing going on; the grandchildren are sitting up at the breakfast table with them.”

One family where the client was living with an adult daughter asked Helen to stop coming, fearful of infection. “Then I got called, saying the lady was very distressed, and would I come and talk to her through the window?” It emerged that the family were confining this woman to her room every day from 2pm, when her son-in-law came back from work, where he provides an essential service. They were afraid he might pass on infection. So Helen’s new job with that client is to talk to her at a distance through an open window every afternoon. “Her daughter says it is a calming influence.”

She reports that the “anxiety levels for clients have gone through the roof.” Some clients are also conflicted between wanting to self-isolate and being reluctant to have their family members providing personal care.

“They prefer us to do it. In many ways, we have a very close bond with our clients. It can also take a long time to be assigned a home help in the beginning, and people are very worried about losing their hours.”

[ familycarers.ie ]