Phil and Aimee Stockton share their reflections on caring for two parents with dementia for almost a decade.
Phil says:
I cared for my parents, Phil Senior and Ann from 2014 to 2023. Nine years. They both had dementia. From day one, it was so hard.
Being a carer for someone with dementia, you often feel totally on your own – as if there's no support out there. That changed when we got care through the Marie Curie Palliative Dementia Service in South West Wales, after years of struggling.
Mum had Alzheimer's disease, and in 2014, when she was 72, things had started to get worse. She'd argue about taking her tablets; or forget she'd had them and take more. Sometimes she was aggressive towards Dad.
Dad was struggling to care for Mum – he was developing dementia too
He was doing his best, but it was horrendous for him. I didn't realise at first, but he was also developing dementia. He was struggling to manage the medication for Mum, he was getting confused when we were out.
One day I arrived to find he'd called the police because he thought I'd attacked him. After speaking to us at length they realised he was unwell. A few months later, he started going missing, at first for hours, then for days.
He was taken to a hospital assessment unit and ended up staying for nearly nine months. They thought he might have had a transient ischaemic attack (a mini stroke).
He was very distressed, begging me to get him out, asking why I'd put him there. Then there were moments when he'd know something was wrong and say, "I feel awful confused, boy, better if I was dead".
Dad found it all very distressing, he wanted to come home
It was very upsetting. I wanted him home too. My parents were my life. I loved them dearly. We made changes to the house to make it suitable, and we finally got him home in September 2015.
Over the next five years, there were never enough carers. At one stage we went nine months with no support. Dad was finally properly diagnosed with dementia with Lewy bodies in 2018. Dad couldn't be left at all, and was often physically violent due to his dementia. Meanwhile Mum's condition was also worsening. I was washing and dressing her, which I found distressing.
It became incredibly difficult. I was at breaking point, beyond exhausted, living on adrenaline. We finally got Marie Curie care in my parents' home in 2019, but sadly the pandemic hit shortly afterwards, which led to them both deteriorating.
We think Mum must have had a small seizure as for the three months of her life she was shouting, day and night. She couldn't get upstairs, so she and Dad were sleeping downstairs, Dad with his earplugs and headphones on. I slept on their floor.
Our Marie Curie Nurse was the light in the night – she understood
Our Marie Curie Nurse, Angela, was the light in the night, the only one helping us. She was wonderful. She understood everything and explained it to us, so we knew what to expect about things like eating and drinking, and the final weeks and days. Mum died in my arms in November 2020. After that, I rarely left Dad's side. He died May 2023.
Aimee says:
Through all the many crises, Angela was our guardian angel. At the most unexpected – and desperate – moments, she'd turn up. It was as if she knew when we needed her. And she was always at the end of the telephone. She was outstanding.
Marie Curie was there for us all
Angela built a real rapport with Phil senior and Ann. There were small but important things, like putting her fleece on when she came in, because uniforms scared Phil.
But she also understood how to support us all individually, both to get the best outcome for Ann and Phil Senior and because she was there for us all. She might sit with him, so Phil and I could get out of the house for a bit. The few times we got away and had respite carers in, she'd check things were ok and let us know, to reassure us.
A multi-disciplinary team was set up with the GP surgery, and having Angela as our link to that, with her expertise in palliative dementia care, was so helpful. She kept us updated on what we needed to plan ahead, and she could also liaise with the team when we needed something. She was our go-to for everything.
We're learning to live with our grief
Losing Ann and Phil Senior has been a very difficult transition. We talk about them all the time, and Phil struggles with grief every day. But having Marie Curie support has made a huge difference. Angela came to the funeral. She was so professional, but she's also part of our lives now. She has been there through thick and thin.
If you, or someone close to you, is living with dementia, you can get practical and emotional support through our Support Line and online resources, and our Companion service.
We provide care in our hospices and in people's homes across the UK, whatever the illness, and through our specialist dementia services in some areas in Wales. You can help us provide more expert end of life care to people living with any terminal illness, including dementia. Donate today.
