What Being a Carer Can Look Like to Those on The Outside

Caring for a family member with dementia can be much tougher than it appears from the outside. It’s not just about completing tasks and making difficult choices; it's also about remaining vigilant and adapting to constant changes.

Whilst many may think that a significant portion of my day involves watching television with Mum, preparing meals, walking around our village, cleaning spills, and monitoring toilet visits, there are countless little things they don't see. These include the constant ups and downs to prevent Mum from bending our front door by yanking at the handle, following her everywhere in case she pulls an entire case of eggs off the sideboard, opening all the bananas in the fruit bowl while searching for food in the kitchen, or attempting to eat non-edible items around the house.

I also have to prevent her from pulling our oven door off because she thinks her reflection in the glass door is another person she wants to reach. I seize any opportunity she has for a nap to take a quick shower, all while keeping a camera set up to monitor if she wakes up, which often cuts my shower short. I need to drop whatever I am doing at any moment to ensure she is using the toilet correctly and not stuffing her hands or other items down it when the opportunity arises.

The need to follow her up the stairs to prevent her from invading others' privacy or picking up the soap bar to eat from the bathroom. I face physical and verbal abuse for the simplest of tasks, such as changing a wet sock or getting her to wash her hands after using the toilet. The list goes on...

Someone with dementia can experience rapid mood swings and changes in behaviour, which can occur at any moment and in any location, not just at home. Those on the outside may not realise that carers must constantly scan rooms or routes for potential triggers for their loved ones. What may appear to be a relaxing outing often isn't; we cannot prepare for everything that could happen while out and about; dogs barking, children shouting, loud bangs, sudden changes in weather, etc. We are continuously on high alert.

We often deal with irritability, a lack of interest in activities, aggression, frequent trips to the bathroom, or wandering around. Our loved ones can feel tense and anxious, which adds to the emotional burden for the family member caring for them.

Family carers often start their day feeling exhausted, as restful nights are quite rare. Even small noises keep us on high alert, preventing us from fully sleeping. During the day, there is hardly any time to relax or attend to our own needs because we must maintain our focus on the person with dementia, with little to no appreciation.

This constant need to stay alert can really wear you down, even if you’re not doing much physically. Over time, carers might start to overlook their own needs and desires, with their lives becoming entirely centred around what their loved one requires, often losing their own identities. This can lead to possible mental and physical health challenges for the carer themselves, whether it be PTSD, stress, deteriorating health, chronic fatigue, anxiety, or depression—the list goes on.

While time is important to everyone for their own reasons, for family carers, it is one of our biggest limitations. If we are fortunate enough to reclaim some of our own lives, we still live within the constraints of hourly paid help, the availability of family and friends; which can be hard to come by, travel restrictions, physical exhaustion, guilt, etc. Flexibility is a thing of the past, and spontaneity flew out the window a long time ago. There's no 'surely 5 minutes won't hurt, I'm sure she will understand' or 'can you ask the carer to stay an extra hour?' No, schedules and plans are paramount to our lives; everything needs structure and routine. It is far from relaxing to live, let alone survive.