Caring for my husband: ‘I don’t feel I have a second adult in the marriage’

‘I don’t feel I have a second adult in the marriage,” saysEilish McLoughlin, whose husband, Ger Tobin, suffered a stroke in January 2009.

A healthy, non-smoking 30-year-old when he developed a blood clot on his brain, Tobin lost his speech and became paralysed on his left side. The stroke was caused by the spontaneous dissection of the carotid artery in Tobin’s neck. Some of the internal lining of the carotid peeled away and travelled up his neck, forming a clot.

McLoughlin regrets not taking her husband to Beaumont Hospital immediately, but he was transferred there from another hospital later that day.

“I still wonder how different things might be,” she says. “If only I had brought my husband directly to Beaumont Hospital, where he may have been seen by an on-call neurology specialist, and had the CT scan sooner, and might have been in a position to be given the clot-busting drug.”

Despite her regrets, McLoughlin, who gave birth to the couple’s second child three weeks after her husband became ill, has forged ahead. Tobin has made substantial progress and returned to work, and they have had a third child: Aoife is now two-and-a-half, her brothers six and seven.

Aoife marked the couple’s decision to look ahead and get on with life, post-stroke. However, McLoughlin says that in some ways Tobin, whose left arm remains paralysed, “is like a fourth child”.

“He has a lot of cognitive deficits in terms of his ability to reason or think ahead. He is able to do things if he’s set up for them. But he’s not good at planning and is always going to be dependent. He’s like a teenager who’s supposed to wash the dishes but never thinks of doing them.”

Tobin spent three months at the National Rehabilitation Hospital, where he received intensive physiotherapy, occupational therapy, speech and language therapy and other therapies every day.

“Once my husband was back home, it fell solely to me to co-ordinate and manage his neuro-rehabilitation,” McLoughlin says. “Every day I looked after him and the children, booking and attending appointments with consultants, physiotherapists, occupational therapists, and speech and language therapists. I wanted more than anything for Ger to regain the life he had and I believed he could do it, or at least come close.”

As a carer, McLoughlin learned “early on, that you can’t leave it to anyone else to advocate for your loved one and that you have to take charge of it yourself, no matter how daunting a task it may seem”.

She was able to manage, with invaluable help from two nurse friends and especially from her sister, who moved in on the day of Tobin’s stroke.

She was on maternity leave for the first nine months of her husband’s recovery. She wasn’t eligible for a carer’s allowance and never applied for respite, “as Ger prefers to stay in his own home”.

McLoughlin didn’t apply for alterations to the home to make it more user-friendly. “I made the bathroom accessible for Ger a month after he came home. I didn’t have the time to wait for grant approval. I did the kitchen in 2014. I didn’t think it would qualify under any scheme.”

Tobin finally needed full-time care after suffering two epileptic seizures. “I started to enquire about what was available,” she says. “I found out about ABI [Acquired Brain Injury Ireland]. I’m very grateful for the HSE support given through ABI. It was over a three-and-a-half-year period, and it went from one hour a week to a maximum of 24 hours a week.

“However, even with that, it still left 144 hours a week during which I had to provide care. This was especially challenging as I was working [as a physics lecturer at DCU] to maintain an income to pay the mortgage and childcare. It fell to me to do a lot of my work at night after Ger and the kids had gone to bed. I had to rely on favours from family and friends for a long time.”

Income protection

Having paid into an income protection scheme, Tobin received part of his salary from his employer, Intel, while out of work. He is now back, from 8am-2pm five days a week, doing data analysis and computational work. Seizure-free for three years, he is able to mind the children until McLoughlin, who works part-time, returns home.

Six years down the road, “there’s a sense of normality now”, McLoughlin says.

“I never thought I wouldn’t be able to cope. I had no choice. I don’t shirk responsibility. Some people thought I was mad having a third child. To me, it was a very positive thing to do and a very conscious decision. It sent out a positive message and it gave Ger focus. He had a stroke, but he wanted to put it behind him.”

McLoughlin says her job gives her an identity beyond that of carer. "Not being at home as a full-time carer is the hardest balance. But I think if I was at home all the time, I'd crack up. Ger is a lifelong responsibility. I need to have something else that I can get absorbed in so that my whole life isn't taken over." National Carers' Week is from June 8th to 14th. See carersweek.ie