My mum and Alzheimer’s: caring for her at home

Angela Sheehan’s mum Barbara was able to die peacefully in the comfort of her home thanks to Hazel, a Marie Curie Dementia Clinical Nurse Specialist who offered support at a difficult and frightening time for the family. 

Big and lovable: Barbara enjoyed spending time with Wilson, one of the family's three Great Danes

Angela describes her family as incredibly close-knit. When her dad died 14 years ago, her mum Barbara came to live with her in Hertfordshire. And when Angela and her family moved to Norfolk, her mum came along too.

Angela says: “Mum was a lovely, gentle and sweet lady – not a bad bone in her body. When Mum was well, she used to help with childcare while I was at work and help with the chores. She was also into knitting and gardening.

“Then we got the dogs – three Great Danes and a Golden Retriever – they all adored her and she loved them too!”

Facing her own fears

About three years ago, Barbara was diagnosed with Alzheimer’s.

Angela cared for Barbara at home, where she wanted to be, coping well in the first couple of years. But everything became more difficult when Barbara was diagnosed with a rare form of throat cancer in the last year of her life.

Angela became increasingly concerned about the prospect of her mum dying at home.

Angela says: “I wanted Mum to be at home with us all, but I was really scared of the thought of my mum dying at home and if that would somehow affect how I felt about living in my house afterwards.”

It was at that crucial point that Hazel Temperton, a Marie Curie Dementia Clinical Nurse Specialist, stepped in to help.

Angela (left) with Hazel, Marie Curie Dementia Clinical Nurse Specialist

Expert support is invaluable

Hazel specialises in caring for people with advanced dementia in their home, helping them to live well, discuss their wishes and plan ahead, while offering advice and support for their families. 

Having Hazel’s support as and when she needed it gave Angela new-found confidence to be there for her mum, right until the end. She could talk to Hazel about her fears and concerns, as well as ask for advice and tips on looking after her mum at home, and support in coordinating care.

Angela says: “Hazel became the intermediary between me, our doctor and arranging anything we may need. She just dealt with everything. She’d also been at the end of the phone if ever I felt that we needed to talk.

“Hazel helped me understand that, with Alzheimer’s, it may be difficult for Mum to express how she felt. She helped me recognise the signs of agitation that meant she was uncomfortable, and would liaise with our GP to work out the best pain medications for her.

“It made me feel confident that we could keep Mum comfortable at home, which was a huge relief. Hazel was really lovely, and her support was invaluable.”

Happy together: Barbara with Theo and Wilson

“As peaceful as it possibly could be”

In the end, Barbara was able to die at home, where she felt safe and comfortable.

Angela says: “Mum didn’t have to go into a home or hospital – she was here and that was because of Hazel. It meant that Mum didn’t have to die in an impersonal place.

“I find it quite comforting to think she died here. It was as peaceful as it possibly could be. I’ll always be grateful to Hazel for giving me the confidence to be able to provide that for my darling mum and for taking away the fear of her dying at home.”

A little sunshine: Barbara with Skyla

Hazel’s nursing role is a new service funded entirely through the sales of the limited edition ‘Norfolk’s Own Cookbook’, an amazing local fundraising project that raised over £100,000 for Marie Curie. 

New research by Marie Curie has also highlighted the need for better provision of specialist care from healthcare professionals like Hazel for people living with advanced dementia, and their families. As Angela’s story shows, advice and support from a specialist nurse can have a big impact on helping people with advanced dementia manage their care needs, plan ahead and improve their quality of life.