This blog is about how you can make sure you get the help you want. I had a miserable uncle who used to say, “People who ask don’t get.” But sometimes people who are not clear and about what they want, get something they really, really didn’t want.
Did you ever get a disappointing present? You exclaim with delight, “Just what I’ve always wanted!” while thinking, “Good grief!” You know the giver probably spent good money to try to please you. You tell yourself that it’s the thought that counts. You are grateful because after all, it was just a kindness.
But what if the thing you’re given is really significant, expensive, and interferes with your life? What if it uses up money that you need for other things? Are you expected to be grateful for that? I don’t think so!
If you are an unpaid carer, there is a whole bunch of people who decide what they are going to give you. The council, the government, social workers, health workers, politicians. They make up strategies for carers. They decide how much will be in the budget. They decide how much will be spent on each item like respite, or transport, or home equipment, or home care support workers. They make assumptions about what you want and need. They really do spend a lot of money on you (taxpayers’ money, so really, your money). The huge danger is they’ll get you something you would never have asked for.
One solution to unwanted gifts is having a gift list. It’s like a Christmas list, or the lists people have for weddings. You would give everyone an idea of what you’d like, and they might give you something off the list if they can afford it. I wonder what the list would look like for unpaid carers? Only you know. And how could you get that list of what you want and need into the minds of the decision makers?
The good news is that you can, here in West Lothian. There is a group called the Carers Voice Group – which does what it says in the title. It gives carers a voice so that they can be involved when plans are being made for them. Through them you can let the decision makers know what makes a difference to you, and your life. People who are not living with the sort of problems you face every day should not be allowed to guess. And if hard choices have to be made, you need to be at the table to tell them what it means in real life.
No one wants to be offered help they don’t need. Everyone has something that would really help their life caring for someone else. Find out now how you can join your voice to the Carers Voice Group, and make sure that what comes out is best suited to all our needs as carers.
Professor June Andrews LLB FRCN OBE is our patron. She is a successful author, nurse and professor who is an expert in dementia studies and aged care. She was the professor of dementia studies at the Dementia Services Development Centre at the University of Stirling. If you would like to find out more about her work, visit her website: www.juneandrews.net or follow her on Twitter: @profjuneandrews