It took Dad dying for Mum to get the help she needed

Standing in the church, I felt an overwhelming sadness. Not just because we were saying a final farewell to my beloved dad, Colin, but because my mum, Liz, didn’t know what was going on. She’d been staring blankly at his casket for a few moments, and then she finally turned to my daughter, Katie and said: ‘Who’s in that coffin?’. My heart shattered. She’d forgotten that her husband of 60 years had died.

My parents were diagnosed with dementia within two years of one another, though mum was the first to show symptoms. I first started noticing changes in Mum’s behaviour in 2018. She’d become increasingly anxious, which just wasn’t like her. I’d also seen that she couldn’t find the kitchen utensils or work out how to serve the food. For someone usually so switched on – she was formerly a member of Mensa – her vacant demeanour was really concerning.

However, getting an official diagnosis became a really time-consuming battle. We live in Orkney – a collection of beautiful islands off the Northeast coast of Scotland with a population of just 22,500 people. It’s extremely remote, meaning access to health and social care services is pretty limited. We didn’t have a resident dementia specialist that could make the assessment and had to wait for the specialist that made infrequent visits from the mainland.

Eventually, in January 2019, mum was officially told she had dementia. We were all devastated, and in complete shock. When we found out, we all just cried, but vowed that we would stick together. Not long after though, Dad’s symptoms started to come to light. He became easily confused and would often jump to old timelines. Or we’d be out for a meal and he wouldn’t realise that he hadn’t yet eaten so would say it was time for dessert.

Worried, I repeated the whole process I’d just taken Mum through, and in June 2021, Dad was diagnosed with dementia. Almost overnight I became a round-the-clock carer to my parents. A huge part of this was managing the admin; trips to the pharmacy, dealing with social care workers, visits to the doctor and setting up financial and legal support. Despite my mum being diagnosed first, Dad’s health deteriorated much quicker and he soon required a lot of hands-on support.

I gave up my job as a Housing Support Officer but even then I was barely getting any sleep. I needed help, but there was a huge wait list for home care services and no local spaces available for a place in a residential home. Desperate, I spent every spare moment on the phone just pleading for some kind of help. We managed to make do for a while in between sporadic visits from independent carers and trips to the local day centre under the guise that mum was ‘volunteering to support elderly people in the community’ – this lie was the only way to get her to go.

In the summer of 2023, Mum was admitted to hospital with delirium. When she came out, we were able to secure her a home care package with about four visits a day – but these were only 20 minutes at a time, so I was still picking up a bulk of the load. It felt relentless. We carried on like this for a long time, all while I was still campaigning to get at least one of them into a residential home.

Then, in May 2023, dad contracted COVID-19 and developed post-Covid delirium and psychosis. He became a man I didn’t recognise. Dementia UK recently appointed the island’s first ever Admiral Nurse. They continue to work in close collaboration with families across the archipelago to ensure they get the care and support they so urgently need. If you need advice or support on living with dementia, contact Dementia UK’s Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.org.

I physically couldn’t take care of him at home anymore on my own and at one point, doctors even tried to have him sectioned as he was so unwell. The only silver lining was that this meant his case was escalated, and we were able to secure him a place in a care home in February 2024. For a few months I got my dad back. He was gentle and kind. Sadly, a few months later, in July 2024, Dad died after suffering a stroke. His last weeks were the most distressing I have ever dealt with; I felt so isolated and alone.

I didn’t think my heart could break anymore, and then mum uttered those words at his funeral. The only thing I was certain of is that, now that Dad had passed, I knew there was definitely a space available in the care home for Mum. In the month before Dad passed it had become increasingly clear that it was no longer safe for Mum to be at home as there’d been a string of unfortunate events, culminating with her accidentally flooding the house.