My mum had the same dementia as Bruce Willis. This is what life with her was like

I was 20 years old when my mum was diagnosed with frontotemporal dementia, a rare form of the condition which impacts around one in 20 people with a dementia diagnosis.

Looking back, my family and I were completely naive as to what this would mean in terms of care at first. Even the period leading up to mum’s diagnosis was stressful. I was working at a law firm in London at the time and homeworking was not standard then, which meant I had to use annual leave to take mum to appointments as we were seeking a diagnosis, as well as making time after work out to help out around the house.

This was physically and emotionally draining, and as we did more research into what mum’s diagnosis meant, it became apparent that she would require full-time care towards the end of her life. We all wanted to do the right thing by her – thinking about what she would have wanted in terms of care – and it was important for us to do as much as we possibly could for her.

Frontotemporal dementia is different to other types of dementia – it’s less likely to impact memory and concentration in the early stages, but affects the frontal lobes of the brain which are responsible for personality, behaviour, language and speech. Mum’s personality change was quite rapid. She went from being completely independent, bubbly and outgoing to dependent, anxious and introverted very quickly.  

In the beginning, mum didn’t think there was anything wrong with her, and would cancel doctor’s appointments. She would go out food shopping multiple times a day and come back with nothing but junk food – something she usually avoided.

She also went from being a healthy, active person to sitting in front of the TV for long periods. This was out of character, but we left her to it as it seemed to make her comfortable. She didn’t like being around other people, and would leave the room to walk around the garden to deal with her nerves.

In the early days of caring for mum, I think we all felt a lot of guilt – her diagnosis had impacted our social lives hugely, but we felt guilty if we weren’t at home to care for her. Looking back, this was completely normal as we were coming to terms with her condition, but we came to realise how important it was for us to take time away from caring and to ensure some normality in our lives; especially during the pandemic when we were all at home.

Later on, we developed good routines to share the caring responsibilities and ensure we could have days off at weekends while someone stayed at home with mum. One thing I wish we had done earlier was speak to one of Dementia UK’s admiral nurses. We wanted to do everything we could to make mum comfortable; but we struggled at times, and it would have been brilliant to have someone we could ask for tips and advice about different situations to take the pressure off ourselves.

My friends were amazing during this time in my life. They checked in on me, recognising when I wasn’t being completely honest about how I was doing but respecting my boundaries if I didn’t feel up to being open about how I was feeling.

They never made me feel bad if I forgot something or missed social occasions. Their support was invaluable as they acknowledged my caring responsibilities but were also there for me when I needed – being patient, gentle and great at listening to my occasional rants.

Caring for my mum made me want to support others and share my experience of caring through my work. In my last firm, I was an active member of their Carers Network. Being a carer has made me more empathetic, emotional and caring and I am able to use these skills alongside my knowledge of caregiving in my new role working within social impact, diversity and inclusion.

Caring for mum was challenging, and we did need to call in additional help in the end, but I’m proud of the way my family worked together as a unit. We would create games and tasks to help her with simple household activities. But she struggled with these, and her condition began to decline rapidly.

My mum died from a brain haemorrhage – unrelated to her dementia – in November 2021. We were able to raise more than £4,000 for the specialist dementia nursing charity Dementia UK, which supported us with advice and guidance about FTD and how to look after our own wellbeing as carers.

We obviously missed mum and were grieving her after she died, but I also found that I was grieving the fact that I was not “needed” anymore. Caring is a full-time job, and I struggled to adjust to her not being there or not being spoken about as much. When you care for someone you love you make it your life to give them the care you believe they would want, and when that ends it comes as something of a shock.

It took me a little time to adjust to this and to accept that it was ok to grieve for both parts of mum’s life: the part before her diagnosis, and the dynamic we developed when we were caring for her.