How I handled free time

In the beginning, it was possible to have some free time for myself, but only once Mum was asleep and settled. I used to leave notes around the house incase she woke up for any reason and forgot where I was, reminding her that I was out and when I would be returning home. These notes were helpful in the early days of her diagnosis.

Over time, she began waking up in fits of panic, realising I was out, leaving the house to look for me, locking herself out, and needing assistance from people in the community. I would be called back home from wherever I was, which left me no choice but to install cameras around the house so I could communicate with her during these times and monitor what was happening while I was away, theoretically reducing my leisure time.

Most recently, it became impossible to leave her unattended, and I needed to be visible to her at all times while she was awake, or her anxiety would spike.

I was often advised, “You need your time; get out when you can,” but this was far easier said than done. I couldn't lock Mum in the house for safety reasons, and other measures were becoming ineffective. So, in 2024, I sought out a private carer who provides me with 2 hours of freedom a week.

I am very fortunate that there are places in my local community I can utilise during my hour; otherwise, a walk would be the only option, and if the weather was bad, I would be limited further.

Being a sole carer is extremely challenging and demanding, especially as the disease progresses and new difficulties arise. Therefore, having ‘my’ time is crucial. To this day, I am proud of what I managed on my own, knowing I did everything I could until I couldn’t anymore.

Initially, going out filled me with guilt and anxiety, and the more fun I had, the worse I felt. Knowing I couldn’t go home and share my experiences with Mum, who was once eager and engaged in our conversations, made my enjoyment feel less meaningful. After all, Mum loved to hear all my stories and was happy that I was living life to the fullest; it was almost as if she lived through me.

My outings soon turned into unsolicited therapy sessions with friends, where I explained my struggles as Mum's carer and how I was losing my own life in the process. I felt like I was dampening my downtime. I was too exhausted to enjoy life as I used to; late nights took their toll, and I certainly didn’t want alcohol to become a crutch for my stress.

Having people over to socialise became more difficult, as Mum would become unsettled with guests in her home, leading to shorter visits. Despite our best efforts to be considerate, these gatherings were not as relaxed as I had hoped.

I know this is a process—getting back on track and stepping away from being a carer from time to time. It's important for me to accept that I may not be able to switch off fully.

Everything takes time to adapt to, and I recognise that this journey is about finding balance.