Do you know any carers? If so, when you ask them how they are I’d be willing to bet the response is usually something like “I’m ok” or “not too bad”. How often, I wonder, do you dig a little deeper and ask them how they really are?
Carers are adept at putting a brave face on their situation in my experience. I have contact with many people caring for relatives with dementia, and all are quick to share the good times, the happy photos of mum, dad or auntie smiling or laughing. They talk of “having a lovely day” or “cuddles and smiles” and I often do this myself. We find it easier to focus on the positives, almost as though we fear the backlash if we say anything negative.
Sometimes, when we do share how we’re feeling – when we’re grieving for the loss of our parent as they slowly slip into another world of dementia, or struggling to cope with something, or are just tired and worn out, friends and family offer encouragement and tell us how well we’re doing and often say things like “it will be better tomorrow” and “this is just a blip”. Encouragement is always to be welcomed, but on occasion it is as though, well meaning as they are, these friends or family don’t want to acknowledge the way we’re feeling.
Let’s be realistic and honest though. It’s not all plain sailing, is it? Just take a minute to reflect on being a carer, 24 hours a day, every day of the year. That in itself has challenges and implications on the well-being of the carer. The pressure on an individual when they’re a carer is completely different to the pressure of looking after a child. In most instances then, children grow up and become independent, parents link up with other parents to share the responsibilities that come with being parents; babysitting groups, the lifts to football, the organisation of the school fete, etc. Year by year, children require less input and support as they slowly gain independence. When caring for a relative with dementia things move in the opposite direction. There is no happy group of similar caregivers with whom to share duties and tasks.
The carer may have other responsibilities: children to care for, paid employment to do, a spouse who’s disabled, in-laws to care for, their own ill health to deal with. They may have had to completely change their life in order to accommodate caring for their relative, losing jobs, friends, money, even feeling they’ve lost their identity. Behind the smiles, carers may be dealing with incredibly difficult situations, having to think on their feet and never knowing what each day brings.
Many carers of relatives with dementia also share joyous and happy times with the person they care for, and feel comfortable with their role and mostly happy that they have taken on the responsibilities. Some carers tell me it’s the best thing they have ever done, their reward is in seeing how happy their relative is, or in being able to make this time comfortable and safe for their parent. Others feel they’re harvesting the good days, storing them away for when times are more difficult so they can replay that day at the seaside or the picture of mum dancing in the kitchen.
The next time you ask a carer “how are you?” take a moment to look behind the smile and consider asking a more probing question, and letting them know you will listen and support them because it’s important to you to know how they are really feeling, and that you really care about the answers they give you.