Living with dementia magazine October 2011

Caring for a person with dementia, being a single parent and studying for a degree could all be full-time occupations in their own right. But Simone Daniel has become an expert at balancing all three with a little help from her family and friends.

Simone, 29, is the primary carer for her 90-year-old grandmother Daisy Pinnock, who has had Alzheimer's disease since 2003. She and her daughter Rael, 10, who helps to look after her great-grandmother, live with Daisy in Small Heath, Birmingham, in the house she has owned since the 1950s.

Looking after Nan

She admits that being a grandchild and primary carer is unusual but says that when Daisy was widowed in 2009, it was natural for her to step into the role.

'I have always been very close to my grandparents, I would go around their house every Saturday for dinner and spend a couple of hours with them.

'My grandparents were always a very independent couple and we let them do what they could do for themselves and they would just get on with it. It all changed when my granddad Alvin, who was her carer, was diagnosed with cancer - he died within four weeks of diagnosis.

'After he died I decided it would suit me best to care for Nan. It allowed me to give up my job as a pre-school teacher and go back to university. I'm used to the house and so is Rael so it made sense.'

Since then Simone has become used to a busy routine. This includes getting her daughter off to school, helping with homework, preparing meals and doing activities with Daisy as well as working on her degree in Professional Studies in Early Years at University College Birmingham.

She copes by keeping a flexible timetable and also has the support of her parents, uncles, aunties, cousins and siblings, as well as Daisy's day centre where she goes twice a week.

She says,

'I try and stay focused but I don't set a strict routine because sometimes you can get very stressed trying to stick to it. By remaining flexible, if something goes wrong it can be picked up again. It's all about making sure Nanny and my daughter are comfortable.

'I also have the support of my Nan's day centre, I can call them at the drop of a hat. If Nanny isn't having a good day they will come and sit with her. It is all about having these services and support networks in place that you can call on if you need them.'

Keeping active

For Simone and Rael it is crucial to involve Daisy in every aspect of their lives - she listens to music with them and helps them with gardening and housework. Simone brings her to the school gates to pick up Rael and to parents' evenings, takes her out on shopping trips and to conferences where she talks about her experiences as a carer.

She says,

'I want to make sure that Rael is not embarrassed to have an ill relative at home, so Nan comes to the school where she likes to say hello and pat the heads of all her friends. Nanny attends all of Rael's performances and all the school fairs and fetes.

'Rael plays a massive role - she cares for Nan in ways that she doesn't even know about. When she comes home from school she brings stimulation to Nanny and lifts her out of herself if she's depressed.'

Rael adds,

'We get on really well and make each other laugh and she likes to follow what I do. When she is tired but doesn't want to go to bed I will say to her 'Good night Nanny' and then she'll go straight to bed.'

Sharing experience

Since becoming a carer Simone has used her experiences to help other carers in the city as a member of Birmingham and Solihull's Mental Health Trust's Dementia Council and its carers' forum.

'I first approached the trust as a carer who was feeling isolated but going along made me feel comfortable and gave me a chance to meet other carers. It is nice to hear other people's stories and share information and advice.

'Being a good carer is all about observation. If she needs the toilet she can't communicate it so it's about noticing what the triggers are, she might be fidgety, or walking differently, so you can identify the problems.'

Simone even finds the time to do fundraising for Alzheimer's Society and regularly takes part in the Birmingham Flagship Memory Walk, including this year's event.