Mary cares for her husband Peter as well as dealing with her own deteriorating health. She has experienced difficulties getting funding to help care for Peter, but now uses direct payments to help employ personal assistants.
76-year-old Mary lives in Bristol with her husband Peter, 74. Peter has Parkinson’s and his health has deteriorated over recent years. Mary now spends most of her time caring for him, despite having arthritis and being partially sighted.
“Life is pretty hard,” she says. “At 5 am I get Peter out of bed and he has his bath. Then I get his breakfast and feed him…this morning that took almost two hours. I do the lunch, something simple, and give him his lunch, then sit down for an hour or two if I’m lucky. Then I make his tea, which takes a long time again, and get him ready for someone to come in at 7 pm to get him to bed.”
Although Mary and Peter don’t have a lot of savings, they don’t get any financial support for Peter’s care as he had a reasonable pension. Mary finds it frustrating that that the Independent Living Fund isn’t available to people over 65.
“It’s insulting to say people don’t want to live independently because they’re over 65,” she says. “We are doing it all for nothing. I feel we are being punished because we worked hard all our lives and paid our dues.”
She is also worried about losing her Disability Living Allowance, which would affect things like their Motability vehicle. Investigating other potential sources of funding is difficult as they are constantly being passed between health and social services assessments, Mary believes.
They were advised to get home care for Peter, but decided against it as they would have paid the full cost themselves. They also felt home care would mean living round the timetable dictated by an agency.
“We’re both very involved in trying be independent,” says Mary. “We didn’t want to be ‘done to’, we want people to help us to do what we want to do. Because we’re old we’re not idiots.”
Mary thinks professionals should respect the knowledge of carers. No-one knows Peter’s needs as well as she does, but she feels that this is not always appreciated. She feels that professionals she deals with sometimes don’t understand what it is like to be a carer.
“You don’t know about the isolation and the worry unless you’re the one who does it,” she says.
Because Mary is disabled, she has been assessed as needing respite. For the last five years has received a direct payment for her respite needs. This helps to employ two personal assistants to care for Peter for a few hours each week, giving Mary a much-needed break. But they still have to use their pension to pay for much of the support they need.
The personal assistants also take both Peter and Mary out, giving them more opportunities to do things together. Because they have a continuing relationship with the same personal assistants, Peter is more at ease.
“I am very into direct payments,” says Mary. She thinks more older people could benefit from using them.
Their direct payment is managed by the West of England Centre for Inclusive Living (WECIL), a local Centre for Independent Living. Set up and run by disabled people, it runs the payroll for Mary’s personal assistants.
“I wouldn’t dream of doing it without WECIL,” she says. “They are very supportive. They know what they’re about.
“The advantages of direct payments are without any doubt the freedom it gives you. It is that independence…I don’t want to be told what time Peter’s going to get up or have his lunch…it’s a choice, it’s completely different…we choose what we want.”