Caring is a tough role, there are days when it is wonderful, rewarding and connecting and others that it is just thankless and miserable. And sometimes this can happen in the same day. Carers can get things wrong, but mostly they are doing the very best that they can and are trying hard, turning up and being human. Mistakes can be learnt from, we all make them.
What makes the role even harder is when others, whether it is friends and family or healthcare professionals come to the situation and start criticising. What carers need is help, support and advice. They are often doing the heavy lifting of the care, if they downed tools and went on strike the entire health and care system would collapse in a small number of hours with the overwhelm. Unpaid family carers make up the biggest costs of dementia care.
I have seen the situation many times when someone turns up to the situation and the criticism begins. The primary carer then feels demoralised and unappreciated. And the criticism can come from the cared for person themselves, either they lack insight into the situation or disagree with the choice or the risk that is being taken. In my case, when I did something for my mother, within a few minutes of completing the task my mother would take the credit for it, as she thought that she had sorted that thing out, I never got thanked! But others have it far worse than I did and are actively criticised, I was lucky!
I have seen safety referrals made when a situation is difficult and in part, the referrers are looking at a low risk outcome, but this is not in line with the clearly expressed requests of the person being cared for. They might not want the low risk outcome. I’ve also seen family members struggle and do an amazing job for months on end, then when some tiny thing goes wrong, everything is put under the microscope. It is hard if not impossible to maintain ongoing good health for a person with a deteriorating condition, it is a matter of odds, sooner or later, something will go wrong. And then the issue is taken out of context and seen as a disaster as opposed to one incident in a long line of getting things right day after day and not requiring help and support, but when help is requested, they have failed. This does not encourage people to ask for support, when some help a little earlier might have made the situation better.
This is not to say that if someone is being abused by their carer that they should continue to care, abuse is not OK, neglect is not OK, but there is a difference between neglect and a mistake that they are trying hard to rectify.
Family carers work hard, they do it for no pay or gain, but for the love of their family member. They are trying really hard and one thing is for sure, that there will be days when it is really hard, yet they carry on and don’t complain, just stepping up day after day to do the right thing. What they need, even when they have made a mistake, is help and support, not criticism and condemnation. Smile at them, tell them that they tried really hard and that support will be forthcoming to ensure that if something went wrong, it won’t happen again, because they are supported.
Support for the carers is such a crucial part of the health and social care system, the kind words that are said to carers will ease the system and keep everything going. So my message to carers is – Well done, you are amazing and doing great. If you need help, ask for it, there is no shame is saying that support is a good thing!