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In sickness and in health

Stephen and Gillian Larkin, from Ballymena, had all to live for until she fell critically ill after giving birth to daughter Charlotte. Stephanie Bell hears how they and two other families cope with caring for loved ones

It’s a job which offers no salary, no holidays, no training and little support yet some 185,000 people in Northern Ireland have no choice but to take on the role of full time carer.

And while they look after the needs of their chronically ill or disabled loved one, many carers suffer themselves from social isolation, poverty and/or illness.

A new booklet highlighting the contribution of carers here has been launched at Belfast City Hall to mark Carers’ Week 2010 which runs until Saturday.

The publication aims to help people to recognise the value of caring, and to support carers’ rights to have the same chance as anyone else of a full life.

Margaret Campbell, chair of Carers Northern Ireland, says: “Three in five of us will become a carer at some point in our lives, providing unpaid care to someone we know who is ill, frail or disabled. It is important that the incredible dedication and devotion of our carers is not only recognised but that carers receive adequate respite care, suitable information and the practical support which they deserve.”

Bob Collins, chief commissioner of the Equality Commission, adds: “Caring for a loved one can be a source of great fulfillment but a caring role can, over time, take its toll. There can often be a negative impact on pensions, earnings, savings and career opportunities — with inevitable consequences in later life.”

For further information visit www.carersni.org . Advice is available from Carers Northern Ireland’s Enquiry Service, tel: 028 9043 9843

The husband’s story

Stephen Larkin (49) lives in Ballymena with his daughter Charlotte (11) and his wife Gillian (45) who needs 24-hour care. He says:

My wife Gillian and I have been together since we were kids; we dated for 10 years before we got married in 1989. We moved to England where Gillian worked as a primary school teacher and I was a manager for British Airways. We had a good life and lived it to the full.

When Gillian fell pregnant with our first child we were very excited at the prospect of becoming parents. But shortly after giving birth to Charlotte in March 1999, Gillian had a brain haemorrhage and needed emergency surgery. It was horrendous and such a shock and I don’t think I was even able to take it in at the time.

Suddenly she was being rushed away from me, unconscious and very ill. I was told there was a chance she might not survive the operation and the next time I saw her she was wired up to a whole pile of machines in intensive care.

It was hard to comprehend the gravity of the situation at what should have been the happiest time of our lives. Initially Gillian seemed to recover well and we were making plans to go home as a family when she contracted MRSA through the wound in her head. It went into her brain and spinal fluid and she got an infection right through her nervous system.

Two weeks later she had a massive stroke and went into a coma. Once again I was told that she might not come out of the coma alive. She spent nine months fighting for her life. I then spent the next four years after that campaigning on her behalf to get the care she needed.

My employers, British Airways, were very supportive and initially allowed me a year’s leave of absence. When it was clear I wouldn’t be returning to work any time soon, they offered a number of options, including a five year career break.

For me, looking after Gillian was a lifetime decision, so I accepted a redundancy package. My parents brought Charlotte home to live with them while I rented out the family home and followed Gillian round a succession of hospitals in England, seeking specialist treatment.

I was initially asked to put her into residential care and given a list of places, all of which I visited and none of which I felt were suitable as most of them were not geared for Gillian’s condition but instead looked after elderly people at varying stages of dementia. I felt this was not conducive to any quality of life for Gillian.

Gillian had profound disability with no voluntary movement. She couldn’t speak and had to be fed through a tube. It was heart-breaking and there were times when I would see a woman pushing a pram and find myself in tears thinking that should be Gillian.

I finally found the Holy Cross Hospital in Surrey, which was a long term facility for people with brain and spinal injury and their ethos was that the people they cared for should be able to live as normal a life as possible within the constraints of their disability. It wasn’t on the Trust’s list of approved care homes and I spent a long time campaigning to persuade them to agree to allow Gillian to go there.

Within her first week there I got to take Gillian out on a trip in a specially converted vehicle and I saw her eyes light up for the first time in four years. After that I’d take her to the theatre, concerts, cathedral services, the local pub, anywhere that would give her as normal a life as possible. From having no range of emotions, within nine months of arriving in Holy Cross she started to smile again and laugh. It made me realise that people like Gillian didn’t need to live in an institution and, with the right level of care, it would be possible for Gillian to live at home.

I started to think about reuniting our family back in Northern Ireland. I had been living in grotty flats and spending 90 hours a week at a hospital bedside. Not surprisingly, my own health suffered. I blanked out emotions as much as possible to protect myself from despair, but I also missed out on the joy that a new child should bring. I developed back pain, had operations for non-malignant melanoma and at one point became clinically depressed.

My parents had been bringing Charlotte over to England for one week every month but I was missing my daughter and realised we needed to try and live as normal a family life as we could.

It took me two years to get a community care package put together in Ballymena that would allow us to live together as a family, with support from the wider family circle, alongside services from the local health and social care trust.

I was determined that we would have a family life and I can’t tell you the elation I felt when I got home one day to find a voicemail from the chief executive of the Northern Board saying that they had finally agreed a care package and we could at last come home to Ballymena.

One of the hardest things about being a carer is that my whole life depends on the decisions and actions of others. If Gillian’s care package hits a snag, even something as simple as a care worker getting sick, then everything else in my life can fall apart.

I have so few rights as a carer and I feel very vulnerable about changes in health and social care personnel or policy.

My experience and expertise is not always recognised and I constantly have to assert my right to be involved in decisions about Gillian’s care.

There have been many difficult times, but I don’t regret any of the decisions I have made. I’ve learnt about what’s really important in life, and it’s not the material things — it’s family and the friends who stick by you when things get tough.

With a good care package for Gillian in place, and a whole new outlook on life, I’m now training to be a social worker. As a family we live as normal a life as possible. Charlotte tells Gillian all about her day at school and Gillian will respond appropriately by smiling. We get out and about every weekend as a family. It has been a long journey and a tough journey. The level of dependence we have on the Trust means we can never completely relax. If one of the carers is ill, the package can break down and I have already had to defer my degree by a year because of that.

If the package is ever cut it has the potential to ruin my life, Gillian’s life and Charlotte’s life. Carers don’t have enough rights written down in law and my ability to hold down a job depends on the flexibility of my employer which comes back to the dependence thing again.

Carers need more recognition for the work that they do and more understanding and support to manage the numerous pressures and disadvantages they experience because of their role”.

The mother’s story

Aileen Walker (48) lives in Newtownards with her three children Rebecca (6), Adam (10), who has severe autism, and John (11), who has ADHD and dyspraxia. For three years she also cared for her husband Derek, who died in 2009 from a brain tumour. She says:

My caring journey started six years ago, when Adam was diagnosed with autism. He still needs a lot of attention and hands-on help with personal care. He has speech and communication difficulties and also emotional and behavioural problems that are very hard to manage at times.

He still wears pull ups in bed and I have to get up at least once a night to change him and his bed clothes.

He has little understanding of the world and what’s acceptable and what is not.

John was then diagnosed. He also needs help with feeding and cleaning himself, and has real problems socialising and concentrating, so he needs a lot of support, too. He is due to be assessed for Asperger’s which is a higher form of autism.

My daughter Rebecca is also to be assessed. My worst time was probably about three years into full-time caring.

My husband Derek had treatment for a brain tumour that had been causing seizures, and seemed to be improving. Then I went out for a walk and was knocked down by a car. I was severely injured, and although I have recovered well, I have been left with long term mobility problems with constant pain in my neck and leg.

I had only just got back on my feet, with a metal frame on my leg, when Derek had a relapse.

It must sound like we’re a disaster of a family, but we’ve got through by all helping and supporting each other. I am the main carer, but the children are all as good as gold and help and encourage each other.

I’ve also met some lovely people, other carers, through a local carers’ support group. It really helps to know you’re not alone.

If I had one piece of advice for other carers, it would be to look after yourself. After all, if you fall apart, everything else will fall apart around you.

The daughter’s story

Aoife Goodwin (13,) lives in Belfast with her mum Anne (53) and dad Sean (58) who suffers from a form of dementia. She also has an older brother, Sam (20). She says:

There was a time when my dad was just like everyone else’s dad. I remember he used to take me to my dance class and then we’d go to the shop on the way home for an ice cream.

But then he started to change. He’d forget things, and he didn’t seem to understand things any more. Sometimes he’d go out and wouldn’t come home because he’d got lost — that was really scary.

The doctors told my mum he had Pick’s disease, a form of dementia.

It was a big shock. I don’t think I’ve got my head round it, really.

What it means is that, although he still looks like he always did, inside he’s very different. He gets confused and stuck with things.

Mum works full-time and leaves the house before I do, so I look after dad in the morning before I go to school.

I get him a cup of coffee and then I make sure he knows where everything is for the day.

He’s ok to be on his own, but we have to make sure he knows the routine, so I write down everything for him before I go, and make sure there’s food for him.

As I leave the house I run through what’s happening and tell him I’ll be back later. He goes to a day centre (a special bus service picks him up), or to art classes, but when I’m at school I worry about him, about whether he’s forgotten what’s happening or become confused.

As soon as I get home, I check that he’s ok. He’s always pleased when I get back because he doesn’t really like being by himself. It’s funny really because when we’re out we look like a normal family but the truth is different.

There are two adults in my family, but it’s my mum and me — my dad is the child we both need to look after.

I still love my dad as a dad, but it’s different now. He can’t help with my homework or give me advice or anything like that. If my friends call for me to go out, and my mum isn’t home from work, I have to say I can’t go, my dad needs me.

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