‘A carer, what is that?’ I am a weight lifter. I am a nurse. I am a specialist. I am exhausted.

I didn’t really see myself as a ‘carer’. I saw myself as a mother who happens to have three wonderful boys, each with their own unique needs and – let’s face it – demands!

I don’t work outside the home, because I can’t. That’s the truth.

I have been living in a secret world for about 12 years now. A world where I don’t know how to answer that question; “What is it you do for a living?” I normally say “I am an at home mom”, which is met with the usual nods and the smiles. When I feel braver I say “I am a full-time carer for my son”. Why is that answer braver? Because it is. There are always follow up questions, “Oh, what does he have?” or “I’d have never known” or the really obnoxious reply: “Really? Wow. So you’re on the social.”

My day is not spent sitting and watching day-time TV, despite what an awful lot of society thinks. I don’t get a break when my two eldest boys are at school. My mornings are spent cleaning, hoovering, changing sheets, washing clothes, trying my best to dry them despite the weather, thinking ‘if I don’t have that duvet cover dry by this evening I’m unsure if he will sleep’.

When I’ve done all I can do with that side of the housework, I’ve to start the dinner, get all the kitchen cleaned and interact with my youngest toddling son, who, like most toddlers, cannot be trusted for two seconds.

While dinner is cooking, I’m wary of the clock. It seems to speed up once 12 o’clock strikes! I double-check my white board to ensure I know when and where I have to be for the rest of this week. Appointments are a must, but boy are they an inconvenience – especially the ones that require me to bring Ethan along so his team can talk to me while he runs wild. They always have to send me an email to remind me about what ‘we’ spoke about during the appointment—trust me, there is no ‘we’ in that conversation, unless I’ve a point to make.

I’ve to get Ethan’s clothes ready so the transition from uniform to casual clothes goes smoothly. I’ve to run up to ensure my middle son’s desk is clutter free and ready for the daily torture that is his homework—J has ADHD.

The boys come home at 3pm. The toddler is still up and very cranky, but in his wisdom, refuses a nap at every opportunity. Dinner is served. I spoon feed Ethan and my toddler while my side of dinner gets colder. If I remember something like ‘the cooker ring is still on’, we all must get up to check (it’s not safe to leave Ethan and toddler alone, for any length of time).

J begins the daily ‘torture’ and spends most of his time coming in and out of the room informing me of the random thoughts that pop into his mind. I try not to get annoyed. I’m not always successful.

Ethan and toddler are having some sort of pooping contest. I’m the referee and the cleaning lady. I’ve no choice but to participate. While cleaning the toddler, Ethan will want my attention or be so engrossed in his TV that he will start yelping and screaming, which used to frighten the toddler. However, now the toddler thinks that’s a perfectly acceptable behaviour and joins in. I have a headache normally by 5pm.

The torture of J’s homework ends around 6.30pm after much arguing about what he has and has not to do for his English, Maths and so on. Then daddy comes home. I have my second warm cup of coffee of the day, in peace.

I prepare the tea while I listen to the radio. I get all the medication out and prepare it for both the boys. I make lunches for the next day.

We have our tea. The boys go to bed roughly at 8pm. J objects and refuses to go. Ethan happily goes up and finally falls asleep about 9pm. Toddler just got moved into a ‘big boy’ bed – need I say more?! J finally gives up and is asleep by 11.30pm.

We go to bed.

I am exhausted

I’m up by 6.45am. I’m always trying to be one step ahead of Ethan, as Ethan is a ‘smearer’. I shower him slowly, trying not to upset him as his body is stiff from the night’s rest. He has just turned 13 and is built like a house, the last thing I want is to get a ‘smack’ from him, for not knowing he was sore. I dress him, which hurts my back as I’ve to manoeuvre him in order to get him dressed. I try to strip Ethan’s bed before the toddler announces that he is ‘weady for bekkie’ over his baby gate.

J leaves at 7.40am with his daddy. Ethan luckily has a bus collect him at 8.20am and I am very lucky to have remembered to have brushed my teeth by 10am!

I am exhausted. I am a weight lifter. I am a nurse. I am a specialist. I am a doctor. I am a teacher. I am an advocate. I am a mediator. I am a secretary. I am an occupational therapist. I am a speech and language therapist. I am a physiotherapist. I am a cook (not a great one). I am a children’s entertainer. I am a cleaner. I am clown, when I need to be. I am an encourager. I am a holder of secrets. I am a bottomless pit of information about children’s rights… Yet, I am insulted regularly by what ‘title’ is given to people like me. I am looked down upon due to being ‘just a carer’.

I am a mother to three wonderful boys; each have their own unique needs and wants. I am also a full-time carer… I am a writer… I am funny… I am sociable (when given the chance)… I am an optimist… I am far more than ‘just a carer’… I am everything to three little boys, while these boys are everything to me.

“So, what do you do for a living?”

This story first published on www.thejournal.ie (June 2015)

For more from Geraldine, please go to her blog, in which she writes about the challenges of being a carer to her children: http://geraldinerenton.com/writings/

 

Eilish’s Story

‘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.”

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.”

Article first published in The Irish Times (June 2015), written by Colette Sheridan.

http://www.irishtimes.com/life-and-style/health-family/caring-for-my-husband-i-don-t-feel-i-have-a-second-adult-in-the-marriage-1.2235751

 

 

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