Mini-Chat
During twelve solid years of providing seven-day a week care for her disabled daughter and elderly mother, Maureen Oakes has had just one week's break when she was able to snatch a quick holiday with her sister. STACIA BRIGGS spoke to Maureen about the intolerable strain of being a carer struggling to look after the people she loves.
Maureen Oakes never feels as if she's off duty.
During the day, she provides essential care for her daughter Louize, 32, who has primary progressive Multiple Sclerosis - the most common disabling neurological disease affecting young adults in the UK - and for her mother, 89-year-old Joan Dick, who is diabetic. Both live independently, but need considerable help to remain living on their own.
At night, Maureen sleeps next to a pile of clothes she can jump into in a hurry if she receives a call for help from her daughter in the early hours of the morning. Relaxation simply isn't an option - and nor is illness.
"At Christmas I had flu and I could barely stand up straight, but I knew I had to keep going, because if I don't care for my daughter and my mother, who will? There were some days I was almost crawling out of bed to go and help them," said Maureen, who lives in Hethersett with her husband, Derek.
"I felt so desperate, so alone and totally exhausted. I felt like I was exploding, like I wanted to scream and scream. But you have to keep going for them, for Louize and my Mum, because none of this is their fault and they shouldn't have to worry about me."
Diagnosed in 1997, Louize fell ill at her 21st birthday party with an infection, and within months was finding it impossible to walk without clinging on to walls and furniture.
"In the February she had her party, by the Christmas she needed a wheelchair to get about in," said Maureen, "it was quite a fast decline, and it changed everything. Louize had been working in an office, but she had to leave her job, and I had been planning to go back to college to take some qualifications, but that had to go out of the window, too because I needed to be there for my daughter."
During the same year, Maureen's husband Derek, 67, was diagnosed with emphysema, a respiratory condition, and was forced to leave his job as a taxi driver.
"It was just the worst year, ever. It felt like our world was falling apart," said Maureen. ?"Luckily for us, Derek's doctor was able to get him on the right medication very quickly and stabilise his condition, but he had to give up work and that was very hard for him. By the end of 1997, I had Derek downstairs not being able to breathe properly and my daughter upstairs not being able to move properly. I could hardly believe it had all happened in a year."
In addition to caring for Louize and helping her husband, Maureen also provides care for her mother, Joan, who lives independently, but needs some help with cooking and shopping.
"When I'd been a carer for Social Services, I could leave my work behind and come home. Suddenly, my work was at home. I was struggling to do everything that needed to be done and just felt total and utter despair," said Maureen.
"I say it every day: 'I can't do this anymore', but then I find the energy from somewhere, get up and keep going. After doing this for nearly 12 years, I've learnt to put a face on, to look as if I'm doing OK.
"In the first year, my weight dropped down to six-and-a-half stone because of the worry and all the lifting and carrying I was doing.”
Maureen's days are strictly structured around the needs of her daughter and mother. Her last break of any kind was in 2003, when she went away for a week with her sister, Glenda, who from cancer died four years ago.
"I generally get up at about 8am and by nine I leave to go to my daughter's flat to get her the tablets she needs to take and to see if she wants any breakfast,” she said.
“She doesn't actually get up until lunchtime - we've found that if she does get up before her lunchtime carer comes, accidents can happen and she can take a fall and be waiting for hours until she's found on the floor.
"Several days a week I go to my Mum's after leaving Louize, then I nip home for a quick sandwich and then go back to Louize's to get her dressed. Four afternoons a week she has a carer come in to relieve me, but before that I was backwards and forwards constantly, up to five times a day."
Louize's care package began last August, after Maureen made a desperate call for help to Social Services. Her daughter had suffered a bad bout of stomach flu and had been admitted to hospital for treatment.
"I was disgusted at the way she was treated - we arrived at 3pm and nothing passed any of our lips for six-and-a-half hours, despite the fact my daughter was dehydrated and ill. In the end, we just took her home," said Maureen.
"By that time, I was absolutely at the end of my tether. I'd been trying to look after her with only nine hours of help a week and I was at breaking point. Louize had been assessed as needing 21 hours of care, but it just wasn't happening.
"In total desperation, I called our social worker and told her that I couldn't take any more. To give her credit, she did her best to help us, but even the help I'm entitled to just isn't enough.
“To get the help I should have, I've basically had to beg. If I wasn't here, Social Services would be picking up the whole bill for looking after my daughter. Obviously, I don't want to stop caring for her, because I want to look after her, but it comes to the point where you feel you just can't carry on any longer.
“Everything takes such a long time to happen. When my daughter was really ill, I asked for extra help for a little while, but the decision had to go to a panel, and that takes time. By the time decisions get made, you've already had to struggle through.”
With her days filled by looking after family members, Maureen has precious little time to herself. She finds she can only watch the news on television (“I just can't relate to dramas about real life anymore, they're so far away from my life”) and there's no time or money -she receives a derisory £55.55 carer's allowance from the Government each week - to go out.
"Before all this happened, I was someone that really enjoyed a good laugh. I loved going out, hopping in the car and going to the coast, having a meal or for a drink; all the normal things that normal people do,” said Maureen.
"Now, I feel very isolated and alone. Friends tend to fall away when they realise that the people you're caring for aren't getting better, and they worry that you're going to start leaning on them and asking for help.
"I've been let down in the past, and I won't ask friends for help now, I just get on with things and do them myself. It's made it very hard for me to trust people and to open up.”
A love of photography - Maureen has had one of her pictures published in the Evening News - and the Norwich-based chill4us website are lifelines.
Run by local carer Wendy Maxwell, the chill4us.com website offers 'a window to the outside world' for carers, offering opportunities to chat to other people in the same situation and to swap hints and advice to help in daily life.
"If it wasn't for the internet and the people I've met on chill4us, I think I'd go mad!" said Maureen, "I can talk to people who really do understand what I'm going through and who won't be angry with me if I'm a bit snappy, because they know what it's like too.
"Sometimes it helps just to know that someone understands you and that you're not totally alone out there.”
Maureen can't imagine a time when her days won't be filled with caring for others, and worries what will happen if, one day, she really can't go on.
“I can't really remember how it felt to have a normal life, or how it feels not to be tired all the time. And I think that's probably a good thing. Because if I could remember, it'd be even harder to go on.
“If I had more help, everything would be easier. I know it worries Louize and she feels guilty, but none of this is her fault, and I love her and want the best for her and for my mother.
“I just wish people realised how hard it is. And then perhaps they'd be more willing to help.”
James Bullion, Assistant Director Community Care, Norfolk Adult Social Services, said: "Norfolk's carers are the county's unsung heroes and the role they play in supporting and caring for friends and loved ones is invaluable. But often there is help and support available which they are not aware of, and we would urge people to call the Norfolk Carers Helpline on 0808 808 9876 to find out exactly what's out there for them.”
To meet other carers, visit Norwich-based Wendy Maxwell's chill4us.com website.
Maureen's Diary:
Sunday December 21: Carer is unable to come today, so I have no rest time.
Monday December 22: Have to do the shopping and all the things I couldn't do yesterday, am starting to get a sore throat.
Tuesday December 23: Not feeling too good, throat is very sore.
Wednesday December 24: Woke up today feeling ill. Head is spinning and I am weak. Have cooking and caring to do, bought some cold and flu tablets to help get me through, am like a zombie.
Christmas Day: Still feeling ill, nose and eyes running, no help today. ?Boxing Day: My head feels terrible, my eyes are stinging and I keep going hot and cold, but I still have to turn out in the freezing cold morning and night to de-ice the car before I go and get Louize sorted.
Saturday December 27: My head and eyes feel swollen today and my sinuses are blocked. I have no help whatsoever today.
Sunday December 28: I feel a little better today, still a way to go yet. I am so tired.
Monday December 29: Hit with a bombshell today. The carer that has been doing four afternoons a week for Louize suddenly says she can no longer do it. No warning or hint of it, so we got no afternoon help today. We phoned the agency the carer comes from and they had only just got the news themselves and weren't sure what to say to us. They phoned back within the hour, were very apologetic and said they have a carer who might be suitable to replace her. Now I have to go though showing her everything she will need to know and that's all I need at the moment as I'm still feeling tired struggling with the extra work load of Christmas while suffering from a bug.
Tuesday December 30: This isn't a life, it's an existence. When a paid carer is off work for whatever reason, some agencies have no replacement carer, the help time I have lost is never made up and it doesn't seem to matter if I'm ill, I still have to fill these huge gaps as well as the high input I put in seven days and nights a week, 52 weeks a year, for years on end. There is no one to call over weekends or holiday times, and if anything goes wrong I have to bear it and neglect myself just because there isn't enough help to go round. I feel I am taken for granted by the system. If I broke the law and went to prison, I would suddenly have human rights, but because I'm a carer, my human rights aren't considered important.
Louize Oakes wrote this poem for Maureen around three months ago:
CARER
Could someone please care for my mother
As I don't have a sister or brother
Respond to what's said
Else you'll make her go red
Respect those with hearts, not the others.
http://www.eveningnews24.co.uk/content/ ... 3A08%3A357
