I can’t imagine having more empathetic bosses

But by the start of 2019, we were properly worried. That’s when we saw a neurologist for the first time. And in 2022, Helen was diagnosed with young onset Alzheimer’s disease at the age of 51.

I didn’t feel comfortable leaving Helen

I work at Sky and in 2019, around the time that Helen saw a neurologist for the first time, I was meant to go to Netflix in California for a few days, but I was concerned about Helen. By this time, she couldn’t work out how to open the side gate to put the bins out. I spoke to my boss, Paul, and said, “I don’t feel comfortable leaving Helen and going 6,000 miles away,” and he was absolutely brilliant.

Paul protected me then and has done ever since. I work for a fantastic company – the management in particular have been so supportive, which has enabled me to keep working full-time while also caring for Helen, with flexibility as well.

In August 2023, we went to Spain for what I knew would be our final family holiday. Once we got home, we were on the edge of disaster for a few months. Helen became psychotic and was sectioned in a psychiatric hospital in October 2023. We had been so tight as a family unit, and having her literally dragged away from the house into an ambulance was traumatic.

Then in January 2024, Helen moved from the hospital to a care home in the village, less than a mile away. She’s been there ever since.

When they heard that Helen was in hospital and then in the care home, some people said, “You must be relieved,” but it’s a lot more complicated than that. I could speak for hours and days about how complex everything is, and the emotions and challenges.

My daughters are young and Helen leaving home was a seismic change in all our lives and I effectively became a single parent. The dynamics of the family and handling the emotions around seeing Helen became very different.

I can’t imagine having more empathetic bosses

Throughout this awful situation, I’ve had Paul and then two other amazing managers. I honestly can’t imagine having better, more empathetic bosses. When there were issues at home, I would just say, “I’ve got to go.” In my team, everyone works really hard and there’s a mutual trust and respect that you’re going to get the work done.

I always look for the positives, and knowing my managers believe in me and understand that I’m doing the best job I can in the circumstances means everything. It’s sustained me and meant that I want to repay it as well.

I tried to update my bosses and team about what was happening with Helen so they understood if I was not quite with it or a bit emotional, but I didn’t want it to become the dominant thing. I wanted them to know that I was going to balance it, and it wasn’t going to distract my team. Nevertheless, they could see the impact it was having on me.

In the last few years, the culture at Sky has changed for the better. We worked flexible hours even before Covid, and I only go into the office three days a week. Helen is normally asleep after lunch, so I start work earlier in the morning and then I can leave mid-afternoon and visit her. I sometimes have to rearrange meetings, but I can move things around and then I do more work later.

I think that if it was 10 years ago, it would have been much more difficult for me to have that flexibility.

Be open, honest and transparent

Recently I’ve had an on and off lack of sleep, and last week I missed a meeting with my boss because I was talking to Jac*, our dementia specialist Admiral Nurse. I lost track of time because I was so into it, and it was so important. But I just said to my boss the next day, “I’m really sorry, these are the circumstances, it was quite personal and it overran.” I should have been a bit more careful, but it was an exception and he was fine.

My advice to other people who are working while caring for someone with dementia is to be open, honest and transparent with management. Ensure that the HR Team is aware that you are a carer and it’s written down. I’ve got a great boss but if he were to leave and I had someone new in charge of me, it could all change, so make sure you get everything you can agreed in terms of flexibility.

I’ve been the sole earner throughout Helen’s illness. The burden of earning is all on me, as well as essentially being a single parent and having three dependants rather than two. The pressure is huge, but you can’t put your head in the sand and run away – you have to be stoical.

* Jacqueline Riddles is a young onset dementia specialist Admiral Nurse hosted by the charity YPWD covering Berkshire and Surrey.