It’s hard to pinpoint the moment we knew we needed to find carers to come and help my mother. That’s the nature of a progressive condition. Symptoms creep up on you, bringing new care needs just when you thought everything was working well.
After struggling with her balance for some time and suffering a series of falls, our mother, Jenny, was initially diagnosed with Parkinson’s around eight years ago in her mid-60s. As new symptoms presented themselves, the diagnosis was changed to progressive supranuclear palsy, which results in difficulty with balance, movement, vision, speech and swallowing.
Since then, my mother – already widowed at the time – my brother and I have tried to navigate the ins and outs of converting her home in Warwickshire and hiring home carers. Everyone’s circumstances are different and I realise we were very lucky in several respects: Jenny had savings and her teacher’s pension to cover some costs and her home was big enough to convert.
With that in mind, here is some of what we have learned along the way.
My mother is in the late stages of this awful condition and living at home with carers coming in from early morning until late at night. We employ four.
The first thing to do is seek advice from those with more experience. We’ve had help from specialist nurses, GPs and charities – specifically the PSP Association. Age UK was also a source of support for converting the house. My mother’s GP was able to point us to what help was available in terms of occupational therapists (for help with grab rails and the right bed), physiotherapists, speech therapists and nutritionists.
When it came to hiring carers, we initially employed some ladies via Age UK to come and do small jobs around the house that were a struggle for Jenny, such as ironing and cooking. When her dogs were still alive, the brilliant Cinnamon Trust set up a roster of volunteer dog-walkers.
As her condition worsened we looked to hire what are generally called “personal assistants”, or PAs – carers that come to your home.
Here again, it is worth looking for outside advice. Social services recommended we get help from a Warwickshire-based group called the Rowan Organisation, which also covers other counties. It has helped, for small fees, with recruiting PAs and with our payroll services. When advertising the roles, it advised us on what you can legally say in a job advert and at interview – for example, you can’t specify someone must be a non-smoker. We used its site and the Gumtree website to post job adverts. The payroll service provides payslips and calculates our tax and national insurance bill.
When directly employing carers, you need employers’ liability insurance to cover you if one of your employees gets ill or injured because of their work. You will need written contracts with each PA, you must adhere to national living wage rules and you may need to put them into a pension scheme under auto-enrolment rules.
When it comes to making a decision about who to hire, remember you will probably need weekend care as well as on weekdays. Carers, like all employees, are entitled to annual leave. Care hours can be unsocial, so you may want more than one carer and to share out the late shifts and weekends. Use the interviews to talk about this.
Carers may need keys to the house and will be alone with your vulnerable relative. So do the right checks and call their referees.
Finally, the costs of care at home are likely to rise with time, and while state support is available in some cases, in the form of continuing care, you cannot be sure you will qualify for it.
In short, there is quite a lot to consider – home care is not the cheapest option and it can all feel very overwhelming at times, leaving little emotional capacity to deal with the illness itself. But help is out there. My biggest takeaway from the whole process? Reach out to experts sooner rather than later.
Hiring a carer for my mother was a huge learning curve, but help is available
