“I struggled to get Nan the care she needed”

Sara Phelps battled to get her nan Joan the help she needed at the end of her life. Things didn’t improve until Joan’s final days, when Marie Curie Nurses stepped in.

(back from left) Sara Phelps, her mother Anne and daughter Siobhan; (seated) Joan, Sara's nan
(back from left) Sara Phelps, her mother Anne and daughter Siobhan; (front) Joan, Sara's nan

When my nan was diagnosed with vascular dementia, I knew she wouldn’t want to be in a home. I am the only child of an only child so there was only me. In August 2014, I moved from Surrey to Yorkshire to look after her leaving behind my husband and kids. When I first moved in, I contacted social services but was told Nan wasn’t entitled to any care. So as a family, we decided to pay for a private carer. But while the carers tended to be nice they were not experts in dementia care. They just thought she was this sweet old woman and then couldn’t understand why she suddenly swore at them or got really upset and angry. So from the August until she went into hospital in November 2014, I was on my own. It felt like I was battling for everything and going round and round in circles dealing with social services. For example, I was given a crisis number as I was having a problem managing my nan’s aggressive behaviour. So I called it but they gave me a different number that then sent me somewhere else. It was very stressful.

Lack of help

There was also a real lack of any physical help. When Nan had a fall, the carer refused to lift her due to health and safety regulations. So I called 999 but was told it wasn’t a priority. So I called my mum over and together we managed to lift her up, but we both hurt our backs doing it. It was only when Nan was admitted to Castle Hill Hospital, in Hull, with a kidney infection that a social worker told me that she was actually entitled to some financial support. She also told us I qualified for an increased carer’s allowance. But I should have got it a lot sooner and it would have been really helpful.

Pain relief

Nan came out of hospital with a discharge care package. She deteriorated quite quickly and the GP advised that she needed end of life care. He made the referrals to the District Nurse and I asked him to make a referral for a Marie Curie Nurse too. It all happened in 12 hours which was really good. A hospital bed was brought around and they got the dose of pain relief right and made sure she wasn’t in any pain. I have no complaints about my nan’s care at the end as she was treated like an individual. But there were times before, when she was being looked after in the community, that it felt like she was a social embarrassment and I struggled to get her the care she needed. Sara’s experiences of caring for her grandmother Joan are shared by far too many people. At Marie Curie, we believe we need to change the conversation about terminal illness, so people like Joan can get the right care and support at the right time. Read more about our campaign