Three's a crowd: Living with your lover and their carer
If your partner is disabled, they might also have a full-time carer. So how easy is life with an outsider always in your home?
"It took me a while to get used to waking in the morning to see a stranger lift my girlfriend out of bed and dress her," says Will Iles, a market analyst from London. He and his girlfriend Zoe Hallam were living in halls at Oxford University back then and the situation with the stranger, her care assistant, was made even more cosy because it was a single bed the couple were sharing.
Hallam, a charity worker, hasn't much strength in her arms and legs and, in order to live independently, employs a small team of personal assistants to help with the things she can't do. Funded by government and her local authority, she has people on hand 24 hours a day, most days.
End Quote Lizzy Gwilliam
It got to the point where my daughter preferred to be with her, than with me”
Before they got together, Hallam had deliberately not told Iles about her needs and support because she was trying to make a good impression. "But when you go from being friends to being in a relationship, that barrier has to come down," she says.
When a disabled person with high care needs starts to date someone new, thoughts turn to how to get privacy and quality time with that person without losing independence or dignity.
Just days into their relationship, Hallam had to make a decision that most people don't have to think about. "Would it be more awkward for me to ring my carer to come and help me use the bathroom," she says, "or for this guy, who I've only been seeing for a week or so, to have to do it?"
In a family home, things get more complicated. Lizzy Gwilliam, a mother of two from Devon, describes on her blog what her personal assistants do. "[They are people who] you rely on, not for administrative duties but for ordinary things everyone does… getting food for your daughter, helping you on and off the toilet in a supermarket, or putting your hair up so you actually look a little less hedgerow."
Gwilliam, like Hallam, has a muscle-wasting condition and employs a number of assistants to help.
Her partner, Tom Bunton, needs her to be as independent as possible because he works full time. They choose new PAs as a team, Gwilliam says, because Bunton will also have to share his living space with them, and an assistant will be close to the couple's very young children. "They have to understand that it is his life too," says Gwilliam.
Though they may come into contact with family members, a personal assistant is there to help the disabled person and to facilitate them in all their roles, be that as an independent human being, a wife or a mother, and to understand relationship boundaries.
"When my first daughter was born, there was quite an awkward situation because my then PA overstepped the mark as far as parenting was concerned," says Gwilliam. "My partner found it very frustrating because he knew I hated the fact that she could get down on the floor with the baby whereas it's much harder for me to do that.
"It got to the point where my daughter preferred to be with her, than with me," she says.
Gwilliam manages her personal assistants day to day, while Bunton helps out with the considerable admin which comes with employing staff, including payroll and organising holiday cover. She says her partner wants to get involved when he sees things going wrong but he knows that Gwilliam has to be the one who manages awkward situations when they arise.
Zoe Hallam has had similar problems and says that in the past she has let lots of matters go because she doesn't like conflict; she says disabled people get used to things not being quite right, or that don't quite work. "I'm selective in what I fight about," she says, "otherwise, I suck it up".
Now four years into their relationship and having to negotiate around her carer, Hallam says that her boyfriend still isn't sure about who does what chores in the house. "He always feels bad leaving the washing up for the PA, and sometimes he creates a lot of it when he's cooking." Hallam says that, to share the load and make their relationship more equal, she reminds him it's OK to leave some work for her assistant because she would do those chores if she were able herself.
In order to have some private time alone as a couple, Hallam chooses not to have an assistant in the house at weekends - this is when her boyfriend takes over in the care role. "He knows more instinctively what I need," says Hallam, "but I can't expect the same speed of response as I'd get with a PA who gets paid."
Half of Zoe Hallam's care package is paid for by the Independent Living Fund, a central pot of money which the government has announced will be abolished in 2015. The funds have been "devolved" to councils who the government now says should pick up all care costs. The money has not been ring-fenced for this purpose, however, and campaigners are anxious it may result in them having a lower quality of life or being moved into residential care.
Gwilliam appreciates that bringing someone else into your home causes extra difficulties but that help is essential to her. "My partner's favourite thing to say is that having PAs is weird," she says.
"It isn't just like having someone come and stay. They see you every morning when you still have messy hair and bad breath. They help me do Tom's washing, even his pants. We are just used to it now and we get on with it."Tell us your experiences of having a partner and a full-time carer. Email firstname.lastname@example.org