A mother with Huntington’s Disease could be forced into a care home if council chiefs cut her 24-hour care to save cash. Bedbound Helen Smith, 61, relies on constant support after the muscle-wasting illness robbed her of her ability to walk, talk and feed herself.
Daughter Lizzie, 29, has also been diagnosed with the brain disorder and would have to quit her job to look after her mum if the vital lifeline is scaled back. Lizzie was also diagnosed with Huntington’s Disease, just months after it robbed her mum of her ability to walk and talk.
The devoted daughter, 29, knew it would happen – she had watched as the illness slowly ground her mother down. Lizzie had been forced to pick up the slack at home when she was just seven. She would start the day tidying and helping Helen, 61, get dressed, before heading off to primary school. Lizzie said: “My mum was a proud woman, with a good job, bringing up her family.
“She started showing symptoms not long after I was born: “She was uneasy on her feet and would stagger a little. “Then her eating habits started to deteriorate. “The muscles in her throat went and she found it really hard to swallow. “She eventually lost the power of speech and ended up in a wheelchair and then a bed.” Helen, 61, was diagnosed with the brain disorder in 1995. She had been struggling to move and would trip and sway from side-to-side.
Lizzie says, even before doctors discovered the awful truth, it was obvious something was very wrong. She added: “My memories are always of her being unwell. “A neighbour thought she was drunk and had even tried to get her moved. “Mum was a really strong and independent lady. “She was the manageress of a cash and carry and did well at school. She raised me and my brother on her own. “Having to give up her work must have been so frustrating for her. “Mum tried to do her very best by us. But the disease just took over.”
Huntington’s Disease is a progressive illness caused by a faulty gene and it kills off brain function. It can affect movement, thinking, judgement and behaviour – causing personality changes and mobility problems. Doctors say 12 people per 100,000 are diagnosed with the condition in the UK each year. It is hereditary and passed on through the generations – including from Helen to her daughter and son Richard, 33.
Lizzie grew up too young and found herself scrubbing the bathroom and kitchen when her pals were playing with dolls. “My day started early,” Lizzie revealed. “I was only a girl when I started helping out around the house. I’d start with the cleaning, a bit of shopping, but as mum got worse, I started taking on more. “I would do what I could before school, then come back in the afternoon. “When I was with my friends, I’d never go very far, not even to their houses. “I’d try and get them to come around to mine. I didn’t like to go too far, I couldn’t leave mum.
“It was really difficult watching somebody you love lose the things we all take for granted. It just became normal eventually.” Lizzie remembers trips to Canada to see relatives with her mum and grandparents when she as little. But her responsibilities to Helen have kept her from straying too far. The restaurant worker has never been on holiday and rarely ventures more than a few miles from the family home in Paisley’s Knowe Road.
Lizzie was diagnosed herself at just 21 and the pair rely on care visits funded through the council and disability benefits. “Mum has a doctor that comes out to make sure she is doing okay,” Lizzie continued. “Now, I see the same one. “I chose to have the test for Huntington’s Disease because I wanted to know if I would be passing it on to a child. “I’ve decided I won’t have a baby until they find a cure. “I try not to get my hopes up too much. “It scares me because I think I will end up going the same way as mum.”
Carers started visiting the family home twice a day to help with cooking, cleaning and dressing. Experts insisted this should be increased to 24-hour care in 2000. Helen’s condition kept getting worse and she lost the power of speech and the ability to walk in 2008. Lizzie had to learn how to hook up a feeding tube for her mum and how to handle the huge mechanical bed she has been trapped in. But the vital support put in place meant she could finally start a life of her own.
She explained: “I started to relax a little. “I was able to get a job and know that I could go out and mum would be safe. I worked at St Mirren selling pies on match days, then got a job at a restaurant. “I met a guy and we were able to spend weekends together because I knew there was somebody there for mum.” The carers have transformed Lizzie’s life – and even saved it.
She was rushed to the hospital after one of the visitors spotted life-threatening symptoms when she was 18. Lizzie added: “It was meningitis. I didn’t have a clue, but they spotted it and got me an ambulance. “I was put into an induced coma for three weeks. Doctors told me I would have been dead within a couple of hours.” The carers offer constant care to Helen.
But social workers have now revealed their hours could be cut in half – leaving the women with no help after 8pm. Lizzie fears a change could leave her trapped at home with her sick mum. She explained: “The carers offer a real lifeline to us – they become like family. “Mum loves them and spends more time with them than almost anybody else. “Cutting them would have such a huge impact on all of us.
“I’m 30. I have a life of my own too. I would need to be here all night to make sure mum is okay. I wouldn’t be able to make work, I wouldn’t be able to leave, I couldn’t go anywhere. “Social work says I should put her in a home, but that would devastate her. “Mum’s comfortable here, she likes her carers and watching her soaps at night. “They say it’s all about money. They’re making these big decisions for all the wrong reasons.”
A Renfrewshire Health and Social Care Partnership spokesman said: “We are working closely with Miss Smith to identify the most appropriate care, treatment and support package for her mother. “We undertake an assessment of each person’s requirements following which we offer a personal budget sufficient to meet their assessed needs.
“We work with the person and their family to use this budget to secure the most suitable method of care provision and continually review this to ensure the decision remains appropriate. “We must ensure that all care packages are financially viable to ensure we can provide the appropriate level of support to all service users who require care, which may result in alternative methods of care being explored, particularly for people with the most complex needs.
“We are continuing to support Miss Smith in ensuring the appropriate care is provided for her mother while we work towards a positive resolution.”