When Carole Ions' husband died just a month before their silver wedding anniversary, she agonised over whether she could afford flowers for his funeral. The former secretary had devoted more than 20 years to caring for Vic, who had Parkinson's disease, and to raising their two children. Yet two days after his death, she was horrified to discover that the family's benefits had been stopped. And five days later, she was forced to return their adapted Motability car.
Determined that other people should not suffer in the same way, Ions went to the annual general meeting of the Parkinson's Disease Society (PDS), the charity that helps sufferers and their families, and raised the issue of lack of support for former carers. Two years on, the 52-year-old widow is behind a pioneering scheme on Tyneside, aimed at supporting former carers as they struggle to cope with bereavement and the dramatic change in their circumstances.
"I would hate anyone to go through what I did - it was a horrendous time," says Ions, who is chairwoman of the Newcastle upon Tyne branch of the PDS. "I didn't know if I could afford to bury my husband. I have very good friends, but I felt so ashamed relying on benefit. And then when the benefit stopped, I had nothing. I felt I was begging for the right to live and the right to bury Vic."
She believes the former carers project in North Tyneside, developed by the PDS and the Princess Royal Trust for Carers, will fill the gap in services. A trained counsellor will offer support to former carers; advice will be given on benefits, and volunteers will help with the challenge of rebuilding lives.
It is hoped that the service could become a model for similar schemes nationally. Some 120,000 people in Britain have Parkinson's, the degenerative neurological condition characterised by tremor, slowness and stiffness, and 10,000 new cases are diagnosed every year. This week is Parkinson's awareness week.
Linda Kelly, PDS chief executive, says carers of those with Parkinson's may make a long-term commitment; 20 years is not unusual. As a result, the carer's whole life becomes built around that person. "When that person dies, the carer not only suffers the sorrow of bereavement, but often finds they have lost their main source of income [benefits] and their 'job'," says Kelly.
"They also lose their main social support, which is the paid workers involved in the loved one's care. Many are left feeling that they have no skills or interests of their own that they can use in their life after caring. Younger former carers may still have children living at home who are also affected by these changes. We want to do something to support them."
Ions, who has since received an apology from the benefits agency about her treatment, is actively involved in setting up the project alongside a current carer, a neurologist and a Parkinson's sufferer. She hopes that the scheme will be running by the end of the year. It will offer long-term support for former carers - over years, if necessary, rather than just the first few months after bereavement.
The project will take the form of a series of modules, such as bereavement counselling, confidence-building, financial advice, education, leisure and social support, volunteering and help with returning to work. Carers will be able to choose each module when they are ready. Throughout their contact with the project, however, they will be guided by a single support worker to ensure continuity.
The approach is welcomed by the charity Carers UK. "The problems carers face when their loved ones die are huge, and can involve loss of housing as well as loss of benefits," says Paddy Cullen, senior advice and information officer. "This is particularly true if the deceased was the claimant and the carer is not a spouse or partner. This kind of practical support could put an end to isolation felt by many."
Ions, who has two daughters aged 18 and 25, recalls: "After looking after someone for 20 years, I didn't know what I liked. I hadn't been on holiday, to the theatre or cinema. I was totally wrapped up in caring for my husband. I hadn't hidden behind him - it's just that everything revolved around caring for him.
"I was fortunate in that I had friends to rally around me when Vic died. And for the girls' sake, I kept on going. But I want to make changes for other Parkinson's sufferers and their carers so they don't go through what I did."
