Carer's Stories

More than 350,000 people across Wales are caring for a friend or family member. A survey for National Carers Week showed many felt the role was affecting their relationships and they needed more help.

Alice Mitchell, 14, from Pontyberem in Carmarthenshire, explains how she helps care for her mother Debbie who has Multiple Sclerosis.

"My mum was diagnosed with multiple sclerosis or MS in 1993 and I've been helping to care for her since I was five.

I help mum every day, in the morning I get her clothes ready. Dad does it sometimes, but he picks some strange colours like brown and red.

When I come home from school, I help with the cooking and the washing.

Because mum uses a wheelchair, she can't always reach things in cupboards or up high and she gets tired quite easily.

I have to help mum because if she tried to reach something and she fell out of her wheelchair, that would be a big disaster.

It's really unfair that mum has been forced to use a wheelchair, she really doesn't deserve it.

Before she was ill, she used to love sport like netball, squash and swimming and she can't do those things now.

She's the adult - and that means not having to rely on others, but now has to rely on me.

She says she feels as if she's robbed me of my childhood. She says she'd love to be able to walk the fields of our farm with me, but she can't do that now.

When she thinks about the things she'd like us to do together, it makes her cry.

I don't always like caring. I definitely have my off days, when I don't want to do things for my mum.

Sometimes I don't want to empty the dishwasher or help to prepare food. Sometimes I just want to relax, but I still have to help - it can be a bit of a pain.

I go to a young carers group run by the charity Barnardo's.

It's great because we don't have to talk about how we look after the one we care for, we can just have a night off and have fun.

And that's what we generally tend to do. Have fun.

I want people to know about young carers. If we didn't exist, the government would have to pay out loads of money for real carers.

I think that Barnardo's shouldn't have to be a charity - the government should put the money into free activities for us. I'd like people to realise what we're doing.

I do feel proud about what I do. When other kids at school talk about how they're making an effort to help someone who lives next door or something, they'll only do it for about a month maximum.

I do it full time. I feel good about the fact that I'm helping mum and also helping the government by preventing them sending out a real carer."

Source: BBC News Wales Copywrite BBC MMVII

For Jonathan Rhodes, "it's like I've been living for so long in a dark tunnel that gets narrower. Now I've reached the light at the end and I feel completely blinded by it." Jonathan has been my sister Gillian's carer for 27 years, ever since she was diagnosed with multiple sclerosis as a young woman. She died last month, aged 55.

The theme of this year's Carers' Week, which begins next Monday, is My Life as a Carer. Jonathan epitomises that statement. Unlike most men of his generation whose career took centre stage throughout their 30s and 40s, his was always sidelined. Almost all of his adult life has been centred on caring for his wife.

They met as teenagers in London towards the end of the 1960s and, to begin with, theirs was a storybook romance. Gillian finished university before Jonathan's work took them to Paris for a year. On their return to the UK, they continued their careers, bought a house and, a little later, started a family. But after the birth of their second child, Gillian was diagnosed with multiple sclerosis when she was 28.

Physical effects

Researching the disease, they discovered it is so wide ranging that no one could tell them what the future held. Some sufferers go into a steady decline; others have remitting waves of the illness; yet more are fortunate in being able to maintain their lifestyles with relatively little physical effect. We all kept our fingers crossed as Gillian and Jonathan continued to enjoy their lives without thinking too much about what lay ahead, and had a third child.

Within a few years, though, it was apparent that Gillian was in a slow but progressive decline. As the children grew, she couldn't play with them, nor return to work as had previously been planned. Before the children reached their teens, she could no longer drive with confidence and became housebound, reliant on Jonathan to do the shopping as well as most of the household chores.

"We were lucky in a way," Jonathan says. "It was different from a stroke or accident. With Gillian's MS, it was a long slow illness, so we could plan for the future."

Like other young couples, they had their dreams of travelling when the children were older, but, unlike others, knew that these were just dreams. Once they accepted Gillian's increasing limitations, they weren't profligate with money and saved for what they knew could be difficult times ahead. Jonathan worked for the NHS, helping people with learning disabilities live independently and had a lot of contact with social services. He knew what provisions were available and how to access them, but also how stretched services were. And they were both adamant that Gillian's care would not become the responsibility of their children. But with her mobility reducing, it became increasingly difficult during the day, when Jonathan was at work. "I found it so worrying when she was using a frame and falling over," he says. "I was terrified for her."

When she could no longer walk, in some ways it was better; he knew she would still be in the same position when he came home in the evening as she was when he left in the morning. But still Jonathan grieved with his wife as she took each downward step - walking stick, two sticks, Zimmer, wheelchair, permanent catheter. Finally, he was grateful when offered the chance of redundancy.

At 48, he was too young to qualify for early retirement, but it was obvious that Gillian needed full-time care. The redundancy package paid off the mortgage of their house in the south-east, and the move to a bungalow in Weymouth left them with a small nest egg. They entered their 50s with the comfort of knowing there was enough money in case of an emergency household bill, or a major problem with the car.

No longer working outside the home, the first few years on the south coast were pleasant. Without the constraints of a career, Jonathan took life at a gentle pace and enjoyed taking Gillian for walks along the seafront or trips to friends and family. Gillian hated her disability but still cared about how she looked and Jonathan remembers with affection his efforts in applying her eye make-up. "How was I supposed to know how to put on mascara?" he says with a laugh.

Emotional wellbeing

Despite her decline, apart from a few back pains, Jonathan found the physical side of caring for Gillian relatively easy. Coping with the vagaries of a woman's menstrual cycle was an education, but the personal attention Gillian's care required didn't bother him. "Although she didn't like me having to change her catheter or encourage her bowels to open," he says, "it didn't affect our intimacy. It was her emotional wellbeing that was more difficult to handle."

Gillian's periods of anger and depression became more acute and extremely distressing. The only arguments Jonathan can remember was when she demanded he help her to commit suicide. Eventually, there was a decline in her mental capacities, with the loss of her short-term memory, along with increasing bouts of terrifying auditory and visual hallucinations.

Life became more challenging. In recent years, Gillian's mobility was reduced to zero, and even when she found the strength to talk, her speech was so slurred that it was very difficult to understand. The change in their relationship was desperately sad for Jonathan as he gradually realised that, in everything but body, he had lost the woman he adored. They were no longer man and wife, but man and child. Friends still visited, but as Gillian's health deteriorated, Jonathan became more isolated and lonely in grieving for his wife.

Though children and family encouraged him to obtain additional help in looking after her, he remained determined to manage alone. He appreciated the excellent support from his doctor and district nurse, but started to recognise his limited quality of life. Gradually, he became depressed and wondered how much longer he would manage to retain his sanity and morale.

Finally, just a few weeks ago, it was bronchial pneumonia that gave them both release, and Jonathan is still reeling from its effect - the realisation that he is free and still has time to build a new life.

"Here I am at 55, no responsibilities, the kids grown up and independent," he says. "But what am I to do?" For the first time as an adult, he has no fixed boundaries or routine to frame each day. Despite being fit in mind and body, in addition to his grief he feels overwhelmed, confused and scared. Like many carers, despite living in his own home, he has been institutionalised by the demands of his occupation. He is now dazzled by the limitless possibilities for the future.

It is just a year since the death of my disabled daughter, Sophie, and I empathise with Jonathan's dilemma. I've been in that state of feeling laden by the opposites of grief and freedom, guilt and happiness. But, like all ex-carers, over time he will assume their weight, get used to the brightness of living, and go forward.

· More information about Carers Week (June 11-17) at http://www.carersweek.org

Source: SocietyGuardian.co.uk © Guardian News and Media Limited 2007

After 41 years of marriage and 20 years of devoted care, James McGee was horrified to hear the county council suggest his wife might be better off in a home.

Mr McGee, 62, of Holbrook Vale, Melksham, has been looking after his wife Mary, 61, who has multiple sclerosis, for the past two decades.

She is confined to a wheelchair, has little movement, has to be fed and cannot be left alone.

Agency support workers visit her five times a day and for the rest of the time her husband is her carer.

Now the Department of Adult and Community Services at Wiltshire County Council has told the couple changes must be made to her care package.

It has suggested she either goes into a nursing home, that Mr McGee be given a direct payment to arrange her care or that live-in care be provided.

Mr McGee said he is upset at the options put forward and is calling on all carers to stage a 24-hour strike to show the strength of feeling against changes being made to care packages across the county.

"There's no way I'm going to agree to any of these options," he said.

"I want Mary to stay at home and things stay the same.

"We have shared our lives together for over 41 years and looking after her is part of my responsibility as a husband.

"If I couldn't manage I'd understand but at no time have I said I can't manage."

His wife added: "I couldn't bear the thought of going into a home. I'm horrified."

Mr McGee is angry to learn his wife's day care will be cut for two mornings a week.

Mrs McGee has been going to the Greathouse Cheshire Home, in Kington Langley, giving her a chance to enjoy a social life and her husband vital respite time.

The couple have now been told funding is not available for her transport.

"Respite is very important to support workers and myself. We all need a little break and I'm going to lose that little time," Mr McGee, who believes the changes to his wife's care are being made because of the financial problems facing the council, said.

At the end of March it was announced that the council was facing a £10.8m overspend and that cutbacks would be made across the budget.

Cllr John Thomson, deputy leader and portfolio holder for DACS, denied the suggestion of moving Mrs McGee into a home was due to financial difficulties.

"We review everyone's packages of care every year and this review has got nothing to do with financial matters," he said.

"We're looking at how we can support Mr McGee's wife as her needs are changing and the different ways this can be provided."

Mr McGee said he will continue his fight and is asking other carers in similar situations to contact him on (01225) 705141.

Source: Wiltshire Times and Chippenham News © Copyright 2001-2006 Newsquest Media Group

I would like to share with you the ups and the downs of living with my disabled Mum. I don't really remember when I first knew that Mum had MS; I suppose it just grew on me. When I lived in London me and my Mum would go everywhere together, even if it meant jumping in a taxi to get there - she hid the fact well that she couldn't walk far.

When we moved up to St.Annes, up north near Grandma, my Mum bought herself an electric Scooter. I suppose this is when I first noticed that my Mum had MS. She seemed different to other Mums.

I remember going to school after the weekend and my friends were saying what they had done with their parents. I then knew Mum was different because she couldn't do as much physical stuff with me like skating, bowling or swimming. Mum would get tired quickly.

Sometimes I get angry because if my Mum falls and hurts herself I run to see if she is alright, but most of the time she screams and doesn't want me near her.

Mostly I am happy though because my Mum really respects me and tries her best to make sure I get the best in life.

I know that Mum uses a scooter to get around, but I don't think that I missed out on anything. My Mum always tries to give me the best in life and took me to many different places. Although she can't drive, if I wanted to go into town for McDonald's, I used to sit on her knee and she'd take me without even thinking.

Now that I am grown up a bit, we do different things. We go on bigger trips now because she knows that she can trust me.

I think I do so much more than other children. Because my Mum can't go out whenever she wants to, I get to spend more time with her to play games or watch DVD's together.

If we're planning to go out on a shopping trip, there's a lot we have to take into consideration. If we're going locally she can just go on her scooter, but if we are going on a big trip then we have to take the wheelchair. I like to make sure she's comfy and that we know where all the local toilets are - this stops Mum from getting irritable with me.

At the end of the day we have a laugh and she is my Mum. I don't get embarrassed because my Mum has MS, but I do just wish she wouldn't kiss me in front of my mates - that is embarrassing !!!!

Jack

Mum already had MS for four years before I was born, so I have always known her as disabled. But I don't think of her as disabled in the usual sense, just as not being able to walk very well. My friends think that it's a drag for me that I have a Mother who is disabled.

They feel awkward talking about her, so they use her three-wheeled walker as a talking point. I am only really aware of the fact that she’s disabled when we go out somewhere, and people behave differently to her than they do to other people.

When my Mum asks me to go on errands or to go to the shops, I used to think it was because she couldn't do it herself and it was a real nuisance, but I found out that all Mothers ask their children to do this sort of thing!

I started to think about whether there was anything actually good about her having MS.

One thing that is good is that she spent a lot more time with us than other Mothers seemed to do with their children. It was really good fun when my younger brother and I were smaller, and now it is very useful when I need help with homework! Because she can't play sports with us, she organises us to do a lot of things like sport and drama, which is great.

I think compared to other kids my age, I'm not so scared, and find it easier to talk to disabled and old people, and I don't find it so hard to recognise if they need help and I have an idea of what help they need. I can see that it’s difficult for Mum being disabled all the time, but she doesn't moan about it very much, and it makes me think that if I have any problems, I’ll be able to deal with them too. My Dad is really kind and helpful to my Mum without making a big deal about it, and I learn a lot from this too. If I have an accident or become disabled when I'm older, I know that it doesn't have to be the end of the world.

People are always saying that because we've got to think about Mum, it brings out the best in my brother and me. I don't know if they are right, but I like to think they are!

I was about 14 when I started caring for my Mum for real. My Dad was slipping further and further under the control of alcohol and, unknown to him and myself, my Mother was seeking a divorce, which was granted. She was divorced a year later, and then was struck by cancer, which she beat. All this after being diagnosed with MS a few years prior.

I've never really minded caring for my Mum, which I do full time. It comes as second nature to me. At one point, I thought of becoming a nurse (after all my other plans to become a ballet dancer, actress and astronaut!)

But things changed, as they do, and after a year or so of suffering depression, I found I could express myself and make sense of things through words and poems. So now I hope to become a writer. I've written several poems and have nearly completed my first novel.

I don't know if anyone else out there feels the way I do about caring. Of course I hate to see my Mum suffering and feeling increasingly frustrated that she can't do up her own shoelaces or walk up a few steps.

And of course, I get frustrated myself, fed up and lonely. Sometimes (though I know it's not true) I feel as if I am the only young carer in the country. But knowing I am helping her makes me feel good. I believe that what I am doing is right.

I do all of the cooking and cleaning and Asda delivers all the shopping. My Mum has a go at everything, like having a shower, but I finish her off. She can do quite a lot for herself. She can't go out on her own, so I go with her everywhere.

It does have some effect on my social life, but I see all my friends and I'm not one for going out. My Mum always encourages me to have a life of my own.

But, there are always buts. What really upsets me about caring is the paltry pay a carer gets in benefits, and people's hurtful remarks. Time and time again, I've been made to feel insignificant in this crazy world. I've had people say that because I'm at home looking after my Mum, I'm 'a lady of leisure'. It actually hurts.

What I do is very important. For me, for my Mum, for my family and for the Social Services. After all, I'm saving them a few bob.

Also, I'm fed up with people presuming that carers are elderly people over 60. Perhaps most carers are over 60, but for young carers like myself, receiving letters from the Benefits Agency about claiming ICA if you are over 60 is a bit off-putting if you're only 19!

She describes a typical day in their life.

Paul sleeps on an inflated ripple mattress it is three foot six inches (1.06m) wide and lies on top of our five foot (1.52m) double bed.

I used to sleep in the one and a half foot gap left on my side of the bed.

About four years ago I retired to the floor and have remained there ever since.

At least I can roll over in the night, something we all take for granted, but something impossible for Paul.

I need to be near to Paul to hear him, when he wakes me up to move him, or suction out his excess liquid in his throat which he can't swallow.

Routine is key

The alarm goes off at 7am. Can I hear Paul breathing? Yes. Relief, then disappointment for him, (he doesn't want to wake up) and another day begins.

Routine is what keeps Paul alive, and living with us, me and our two daughters Ella, age 13, and Hannah, age eight.

But we all live with the time bomb, knowing one day Paul won't be here.

I switch Paul's radio on, and take off Paul's quilt, straighten his legs.

It's hard work because they are stiff, they have been in the same position all night, bent up to his right side.

A little pressure down on the legs stops the spasms.

I dip a pink mouth sponge into a water paste, which looks like thick wallpaper paste and pop it into his mouth to refresh it.

Thickened liquids are easier for the throat muscles to deal with because it moves slower. Paul is not meant to have anything by mouth.

I lower the inclined bed that is raised to 45 degrees to flat, so I can pull Paul up the bed.

I put my hands under his arms and pull, making sure I don't pull the shoulder sockets out - there are no longer any muscles keeping the bones in place.

I elevate Paul's upper body again to 45 degrees to prevent Paul's lungs filling with fluid.

I wipe the muck from each eye, -he can't sleep with his eyes properly shut anymore and they don't clean themselves as they should do.

Drug dose

The skin on his face gets very sore, a reaction to body temperature so Paul prefers to live in a cool environment.

Then drugs, which are put down a PEG, a tube which goes straight into his tummy.

Most drugs are now in liquid form and there are drugs which Paul absorbs through the skin to reduce his own fluids and prevent choking of the lungs filling with liquid.

I empty the urine which has collected overnight in the drainage bay.

Then I set up a balanced liquid feed which is fed through a pump at a certain rate, straight into his tummy via the PEG. It will last until 6pm.

Just before leaving for the school run with our youngest and my part time job at her school, I bend Paul's legs up again and put a pillow in between the two legs to prevent pressure sores.

I then leave Paul to listen to the radio until my return at 12.45pm.

Bath days

Monday and Friday are toilet and bath days.

The bladder is far easier to manage than the bowels. Paul has been using a catheter for over 15 years.

The first few times Paul cried. So when I get back from my paid job, I give Paul the once over. Then I start the toileting procedure.

I lower the bed flat, while I roll Paul from side to side to place a bath sling under his body, pull off his underpants and using KY jelly put suppositories in Paul's bottom to induce the lower bowel to work.

Then I have my lunch and tell Paul news. I have a moveable hoist, so after a while, when things start to move I attach Paul's sling, which will support him in the hoist.

I steer the hoist through to the bathroom then I run a not-too-warm bath.

I take Paul back into the bedroom which is large but full of boxes of feed, medical equipment, my female nick-knacks, Paul's Chelsea regalia, etc.

Paul is now toileted and clean, but exhausted. I clean and bleach the bath. Paul has had MRSA before and we all use the bath.

Desperate sorrow

I'm off to pick up our youngest from school. The girls and I will be in and out to see Paul in the course of the evening.

Paul will only be able to observe the practising of musical instruments by the girls or being talked at etc.

Paul, when he is in good form, can mouth a few words, raise his eyebrows, laugh silently which will cause him to choke, or screw his face up in desperate sorrow.

When Paul's not so good, it's hard to understand him and a slight flicker of the eye lids is a yes or no in answer to our questions. All are exhausting for him.

At some convenient moment in the day I will put Paul's splint on his left hand for a couple of hours.

This is to prevent his hand clenching into a fist permanently.

Paul has more drugs at 6pm and I'll stop the feed and switch the TV on.

Hydration

At 9pm, I put on a one-and-a-half litre plastic bottle of water into the pump so the water goes through the PEG to hydrate Paul overnight. I am convinced this is what keeps Paul alive.

At 10pm, there is another round of drugs then I bend his legs up into his sleeping position and put on his quilt.

As I'm lying on my mattress trying to get to sleep, I'm conscious of the noise from the pump and the ripple air mattress and Paul's erratic breathing. After a while we fall asleep.

We have made it through another day, and I'm wondering if it's tomorrow, when our life will change. Will it be worse?

Paul was diagnosed with MS when he was 29. At first the vision in his eye had been affected.

He spent a year going to Moorfield's eye hospital. By the end, he had started to have pins and needles in his arms and hands, and started to stumble when walking.

Excellent support

I remember picking him up and him telling me the good news: "He didn't have a brain tumour."

Paul was permanently in a wheelchair from his 30th birthday.

He continued to work by applying for and obtaining jobs according to his progressive disability, up until our youngest daughter was two.

We have excellent support from our local hospice St Joseph's, where Paul goes for respite, so I and the girls can escape the constraints of caring.

Paul is not so lucky - he can't escape.

We have jointly agreed as a family, that caring for Paul at home, with the risks of leaving him alone for a maximum of four hours, and the strain it places on us as a family is better than our home (a ground floor flat) becoming a focal point for constant comings and goings of care professionals.

However, every Tuesday for three-and-a-half years we have a devoted Marie Curie nurse.

Carole comes for seven hours. Very fortunately for Paul a fellow Chelsea fan.

This might seem like one big moan from start to finish, and a lot to bear for the girls and myself.

But Paul has shown such courage, great humour and compassion for other people with bad diseases.

We have never considered giving up. This is where he belongs, with us.

Paul and Heather Oakley told You and Yours their story as part of a week of reports on Multiple Sclerosis.

Source: BBC News Health Copywrite BBC 2006