Have a care

I WAS A 28-year-old newspaper reporter when my father, a retired nutritionist, developed senile dementia following a stroke on July 21 1996, days before his 66th birthday.

Because I was living with my dad at the time he had the stroke, caring for him fell to me. I had moved into his two-bedroom flat about six months earlier so that I could pay off some debts and had been making plans to move out as my financial situation had improved. My parents had barely spoken since an acrimonious divorce nine years before, but as the years progressed I had begun to feel sorry for my dad - he was so afraid of ending up all alone. We grew close and he became emotionally dependent on me. When I was a teenager he used to say that when I get married I should come and live near him. It's as though he knew he would end up in need of care. Although I have four brothers, two younger and two older, I have shouldered almost total responsibility for his care.

My life has revolved around him since he left hospital in the late summer of 1996. In November last year, just after my 30th birthday, I left my job as a staff reporter to freelance from home. Combining caring with a demanding job proved too much. But being at home all day with my dad is also challenging. Soon after I wake up I get his breakfast and try to encourage him to get out of his nightclothes and have his bath but he usually refuses. He often spends the day staring into space, reading books, sleeping or watching TV. After dinner I give him the tablets he needs for his kidneys (he is diabetic). He takes them every day but he still asks the same questions: "What are these and why do I have to take them?" Then he sits there staring at them for half an hour and I have to periodically encourage him to take them. On Saturdays I do the weekly shopping. I also sort out his correspondence. Getting him to sign cheques to pay bills can be a nightmare because I usually have to explain what the bill is up to ten times before he understands. On Sundays I spend a few hours cooking for the whole week because I don't have time to do it any other day. My dad used to have a brilliant memory. Nowadays he forgets how many sons he has and thinks his mum is still alive. It's hard to have a conversation with him because he asks the same questions again and again.

Fortunately, I have had professional help since he came home from hospital. A home carer comes during the day to tidy up and help him get washed and dressed and another one comes in the evening to warm and serve his dinner. He also gets a lunch from Meals on Wheels every day and a nurse comes in the morning to give him an insulin injection and tablets for his kidneys. I get a break on aTuesdays, when he goes to a day centre and plays games and draws. My mum also helps me out. She lives a few miles away from us and comes round to take him to hospital for a check up once a month, sorts out some of his correspondence and sometimes prepares meals which one of my brothers bring round in his car. However she finds it difficult to cope with his dementia and when he doesn't seem to understand her or repeats himself she screams at him. She is concerned that I will crack up under the pressure of caring. But I refuse to get emotional about my responsibilities; if I did, I would be unable to cope. In fact, I would probably beat him up. He is stubborn as well as senile and this can take its toll on my patience.

There have been times when he hasn't had a bath for up to three months, despite my constant appeals for him to have one. Quite recently he really tested my patience when he refused to let his home carer help him get ready for the day centre. Finally he told us that he would if we left his bedroom. We got out and then he bolted the door and went back to sleep.

My life has changed dramatically since becoming a carer. I can't spend the night with friends any more because I need to be in the house to cook his breakfast first thing every morning - he won't eat if the carer makes it. I can no longer go on holiday twice a year as it's hard to get someone reliable to stay with him. Last March, I went to Portugal for a week-long holiday and asked one of my brothers to stay, but he only stayed for one night. When I came home my father was sitting in his front room looking really distressed. He thought I had run off and got married, even though I spoke to him on the phone every day. For weeks I felt punished for taking a holiday. He would go to the toilet several times a night and each time, he would interrupt my sleep by calling out my name. He just wanted to make sure I was in the house.

Last year I began to think about putting my dad in a home, because my brothers weren't being supportive. I was always calling them to come and see him and on the rare occasions they came they would end up playing video games instead of talking to him. The burden of caring was affecting my health. But I soon abandoned the idea when I read in a newspaper that dementia patients can be mistreated by residential care staff. My brothers help out more now, but still not as much as I would like.

In the evening I usually go out with my boyfriend or friends, but my father always kicks up a fuss. Sometimes we'll be sitting in the front room and out of the blue he'll say: "If you got married I don't know what I'd do." My friends think I'm strong to take him on and some reckon they would end up having a nervous breakdown if they were in my position. My boyfriend is very loving and supportive and knowing that I have him in my life gets me through tough days. My caring duties are a life-long commitment and I have been warned by nurses that my dad will get worse. He will forget who I am and how to read and write. It's a scary prospect but I just want to take things one day at a time. I'm optimistic about my future. I do want to get married one day and when I do my husband and I will have to live nearby. I already have visions of myself coming to see him in the morning to give him his breakfast then starting my day working from his flat.

Caught in the caring trap

A GROWING number of women in their twenties and thirties are carers. Around 16 per cent of women aged 20-29 are spending between 20 and 35 hours a week caring for someone compared to 8 per cent in the early Nineties, according to the Family Resources Survey. Few carers work from home and many are giving up work to care for someone. But as the Carers National Association points out: "The economic consequences are horrendous, because you lose an income now and build up poverty for yourself in the future. Don't be afraid to ask for help."

For help and advice, call Carersline on 0345 573369