A friend recently asked me to reveal the biggest challenge of caring for a parent with dementia. In reality, there is no simple answer to that question. It’s been almost four years since my mum died, but when someone asks me a question like that it brings back all of the bad memories – the stress comes flooding back like it all happened yesterday.
There are many challenges of being a dementia carer of course, but in my mind, there are two main types. Practical and emotional. Practical means making sure that the person receives the care and support they need to get through the day safely. Ensuring they are fed and watered, feel safe, reassured and loved. Collecting their medication, making sure they take it when they are meant to take it and that they eat nutritious food and not out of date snacks that will make them ill. Ensuring they are clean and content – or as content as they can possibly be. Anything that needs to be done to benefit the wellbeing of the person is practical.
Then there are the emotional challenges, which can be equally difficult. The knowledge that you can’t share anything about your life with your parent, because they won’t understand. In the past, I used to share good news with my mum. I’d also share bad news. She’d say the right things and we’d either celebrate the good stuff or she’d reassure me when things went wrong. Either way, it felt reassuring. To not be able to share anything about my own life with my mum was very hard. Then there was the knowledge that I had become the parent and she was the child. That role reversal doesn’t feel natural.
There was also the fact that you never really relax emotionally when you’re a dementia carer. You feel like you’re on call. Even when you’re not with the person, you worry about them. Even if they are being cared for by someone else at that time, you still fear for their wellbeing. You can’t ever completely unwind. You can’t take a decent holiday – breaks become mini-breaks that are scheduled over a weekend or a short week and you have to put so many steps and processes in place to make sure the person is OK while you’re away that you wonder whether it’s even worth it.
Every time the phone rings you worry it’s bad news. You never expect good things to happen. You can go from being a positive ‘can do’ kind of person to being a tired individual who expects things to go wrong. Because they usually do.
You grieve for the person, even though they are still here. Because the person in front of you is not the same person. They look the same, they sound the same, but the personality you knew before has mostly gone. There are occasional glimpses of it, but it’s not really there. They can’t be the person you knew before.
You wonder how long it will last. You feel guilty for thinking that but you can’t help it. You worry you may be giving up the best years of your life. You wonder if you will still have your own health when the person is no longer here and whether you’ll be able to enjoy your own life. You feel guilty if you do one nice thing for yourself.
Believe it or not, I’m not saying this to be negative. Merely to illustrate the fact that there is an emotional side to dementia that people don’t always think about. The practical challenges are tough, but managing what’s going on in your head during all of this is tougher than anyone can imagine.
The reassuring message I do have, however, is that one day when it’s over you will look back on it and marvel at how you coped. You will become a stronger person. Perhaps even more patient, like me. And you will learn to value every minute of your own life because you know how fragile life can be. Never underestimate all you do for your loved one. Being a dementia carer is an amazing achievement.