Angry, afraid, tired, broke: The real struggles of being a carer

Caring for mum. Picture: Getty Images/iStockphoto (Image: Archant)

Amy: 'I've lost my business, money and social life but nobody cares'

This is Amy's searingly honest, and sometimes harrowing account of her life since she stopped work to care for her mother who, now in her late 80s, has advanced Alzheimer's disease. Some daily care is bought in but then it's over to Amy.

She's a highly articulate and intelligent woman and is frustrated and bewildered by the lack of help for people in her and her mum's positions. She is also exhausted and angry. Angry that she and the country's millions of carers are an invisible, under-funded workforce, deprived of money and quality of life.

She says: 'My mum couldn't get her words out. Her words and thoughts dissolved – she couldn't speak in public. That was the start of me taking more responsibility for her. In about 2010 I was becoming increasingly aware of her inability to speak and communicate. She couldn't remember where she was and where she had put things down.

Caring is stressful. Picture: Getty Images/iStockphoto (Image: badmanproduction)

Mum was referred (to a specialist) and we were told the appointment would be in three months – April or May. After four months, I got in touch and was told she had been put back on the waiting list and it would now be September/October. The diagnosis confirmed Alzheimer's.

In the time she has been deteriorating, she has never had a formal assessment of her needs and ability. She fell last March and was in hospital for seven weeks and was thought of as a 'bed-blocker'… 'bloody woman, taking up a bed.'

It was a horrible experience. Nobody cares… nobody cares. If she had had a heart problem or cancer, she would have had medical attention but she's on the 'too big to deal with pile'. She is on no one's list

As a carer, you are supporting, you're watching it all; you're hoping against hope that it will get better… and you start to hate the person you're caring for.

My mother is selfish, self-obsessed, violent and foul mouthed. She is not the person I know anymore. She has gone from being a kind, loving mum, to being an incubus. I get a carer's allowance of £62.40 a week, having given up everything to look after this person. You don't get free care until (the person being cared for) has £23,000 left. I have no money – the small sum I have goes to pay council tax and petrol. Mum's pension buys food and drink. You are always living on the edge, waiting for the next problem, not knowing where the next penny is coming from. The washing machine broke and I have been washing by hand since last March… last March! I have just now got my carer's money, having been visited (for assessment) last September. I have lost my business. It got to the point when I couldn't work anymore. I tried to work at night but now mum doesn't know when it is day and when it is night.

And, meanwhile, I am watching the dementia take over. I have had her trying to stab me with the end of a coat hanger – she is angry and frightened.

I and people like me have done our job, we have cared. We have taken the burden off the state.'

I ask Amy if she feels her future been stolen from her?

'I feel my present has been stolen from me as well as my future. I have no life and no way of securing my future. I have no sense of myself.

I have never been more miserable or more resentful of my mother and there's no one I can turn to. I used to plan a day ahead, now I live 15 minutes at a time. I haven't had a bath since before mum went into hospital, last March. I wash in the sink and, very occasionally, manage to have a shower.

The situation I and so many other women find ourselves in is abrogation of women's rights. Why isn't (Alzheimer's) considered medical? Why hasn't it been defined in that way? The Government is hoping we (carers) won't challenge them on this. The social contract is not being met for people with dementia.

It never ends, not for a minute. One day, the carer was taking mum for a drive and it took me an hour to persuade mum to put her clothes on. By the time the carer arrived, she'd taken her clothes off.

I do look at care homes but dementia care can be as much as £5,000 a month so I have to weigh up when it is the right time to go down that route. The GP says mum may well live for another 10 years.

I don't know how I feel about mum any more. I loved the person I have lost.'

Two weeks after our conversation, a distressed Amy spoke to me again.

'After a couple of weeks of mum being very upset and unsettled at night and singing at the top of her voice for two or three hours, I was really at the end of my tether. I got some medication to help her sleep and that has been extremely challenging. One morning, mum was being difficult and contrary, and spiteful. I gave her half a tablet.' Amy described how she has to get the tablet into her mum's mouth because it has to dissolve behind the teeth.

'It didn't affect her at all so I gave her another half a tablet - she bit me.'

Amy, hurt and shocked reacted in the instant and hit her mum 'once on the shoulder and twice on the bum. I was horrified - mortified.'

Amy phoned two care homes in the hope of getting urgent respite care. At 5pm that day (Thursday), she telephoned social services. 'My case worker wasn't there. I left a message to say what had happened.I got a telephone call back at 9.45am on Monday morning.'

Jenny's Story: 'I feel so alone in this'

'We were a happy small family of five. My husband loved his work and I had worked my way up the ladder to be the operations manager for a leading insurance company. Then cancer struck. After a long battle, we sadly lost him.

We had always looked after our son, who has Fragile X Syndrome*, as a family with every member playing a part, but when my husband died one of my girls had already left home to study professional dance while my youngest was about to secure herself a place at university in London. My son and I would be left alone.

In my mind I had three choices: employ a carer and carry on working, place my son into local authority care or give up my career and care for him myself. I chose the latter.

The main problem after doing so for me was not money - I had a small widow's pension and was fortunate to have reached the age where I could take my occupational pension as well. It was the loneliness. I went from a very sociable role where I was interacting with multiple people every day to being alone in the house - especially when my son attended his placements. I was lucky in that I still had the confidence to reach out and find voluntary work to fill that void but I know that not everyone feels they can do this.

There are also very few part-time employment opportunities for carers as most jobs now require rotating shifts or unsociable hours. Carers however, whether they care for the old or the young, are saving this country a huge amount of money and deserve far more recognition and help.'

*Fragile X Syndrome causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females.

Emma's story: 'I never relax'

Emma, who is widowed, has not given up work to care for her dad but she has become her dad's main carer since her mum died several years ago. While she is determined to hold on to her full-time job and has some support from her siblings (who do not live nearby), she is equally determined to carry on looking after the dad she adores. He is nearly 90 and has a form of dementia that has not made him aggressive. He also has prostrate trouble and suffers badly with acid reflux.

She speaks honestly and without self-pity.

'I live quite near him and I go and see him every night, after work. I do all his shopping, cleaning and hoovering. Sometimes you're driving after work and you've had a bad day and you think, 'I wish I could go straight home tonight', but you can't. Your whole life is taken over by everything. I had a hard day yesterday and dad wasn't well. The doctor came and they were going to take him into hospital. I stayed with him until about 11pm; until he fell asleep.'

Last year, says Emma, there were occasions when her father went out for a walk and the police had helped to find him.

All of it is made worthwhile, she says, when her dad says of her: 'I have got my lovely daughter.'

A few years ago, Emma lost her husband, her brother and her mum within little more than a year. 'I feel as if I haven't grieved,' she says. 'I have counselling and I am on anti-depressants… I'm quite vulnerable but,' she adds with resolve, 'I mustn't be. There's no alternative.

'Last night I was meeting up with friends but I had to tell them I wouldn't be there until later in the evening because I had to go and see my dad first. It seems like I'm always rushing.'

But Emma cannot envisage any other options. She doesn't want to give up work.

'It just boils down to the fact I have to remember he's my dad and he's an adult. I don't want him to lose his dignity. I don't want him to feel abandoned.

'I know it's taken a toll on my own health.'

She doesn't know what she will do if she gets too ill to help her dad. 'There is no one else. I never relax. I'm already thinking about going to see him tonight. I'm always tired.

'When I was asked to look after my small grandson I said I couldn't stay too late. I took the afternoon off to look after him and then went off to my dad for 6pm. However long my dad has got, I want it to be as nice as possible for him. I don't want ever, ever to regret anything. I have put my life on hold.

'There's no help like your own family, if they are able to be there.

'I often wonder what I would be doing if I wasn't doing what I'm doing.' Emma allows herself a small smile as she considers that.

'The hardest part for me is seeing someone you've known all your life, change.'

Gerald's story: 'Being a carer made me ill'

Gerald, a gentleman with a keen sense of humour, cared for his mum until she died, nearly eight years ago. But he feels the experience of this and becoming ill, has wrought irrevocable change in a man who, he says of himself, was once 'easy-going' and 'placid'.

'I would urge people in a similar position not to soldier on. I have lost both my parents – my father in 1997 and my mother in 2011. Losing my father, though it was tough, mother was mobile and we shared the responsibility. In 2006, mum was diagnosed with heart trouble which required surgery and while she was in hospital she picked up MRSA (a serious bacterial infection).'

Gerald had been working as a truck driver on continental routes but when his mum became ill he changed his job so that he could work the night shifts, get a couple of hours sleep and then be there for his mum to 'do all the domestic stuff' in the daytime.

'She became increasingly more dependent on me. The longest I got to sleep was three hours – I was on my knees.'

When his mum was alive, his experience of the care services varied but it was not always happy.

'One thing that got up my nose was once when the district nurse called at lunchtime. I sat down to lunch, as I always do, at the table with a glass of wine – the nurse asked my mum if I was an alcoholic and was I aggressive!'

Gerald feels that because he was 'a fella' no one told him a thing about how to manage. 'They (the care services) left me to get on with it. And then I had a series of heart attacks and a stroke… so now I'm disabled too. My mum died in May 2011 and the consequences (of caring for her) live with me.

'I think it did affect my mental health. I used to be quite placid and easy going. I got tenser and more sarcastic. I'm afraid it does change one's personality.'

Who cares for the carers?

It appears that those who work in the salaried care sector do what they can but do not have the resources to meet the ever-increasing needs. And so, a member of the family steps in and takes up the strain. At this point, it seems, they become invisible.

In Suffolk, over 26,000 older people provide upwards of 20 hours of unpaid care a week and 17,000 of these provide at least 50 hours a week of care (Hidden Needs Report 2010).

Jo Reeder, head of fundraising and marketing at Age UK Suffolk: said: 'We know that in Suffolk, there are a large number of older carers looking after loved ones in their own home. This can be both challenging and isolating for these carers and there is a great need to ensure that there is provision both for the carer and the cared for.'

Figures from a UK Carers Report provided by Norfolk Community Foundation reveal there are currently almost 10,000 unpaid carers in Norfolk – their work contributes around £1.6m in savings to local services each year.

A survey of carers in Norfolk showed that more than half suffer themselves from a chronic physical or mental health condition.

Carers UK is calling for the government to introduce statutory care leave, bringing in a new right of five to 10 days of paid care leave, which could save the UK economy billions of pounds a year in unplanned absences and improve employee retention.

Helen Walker, chief executive of Carers UK, said: 'Better workplace support for people juggling paid work with caring for a loved one is becoming an increasingly important issue, with a growing need for employers to improve flexibility and, with an ageing population, support people to keep working for longer, contributing to better productivity.

'With 15% of the population now working and caring, there is a real social and economic imperative for UK businesses to adopt carer friendly workplaces.'

Have you had to give up work to become a carer? If you'd like to share your story write to us.