- Make the most of what you have and be flexible in your response to changes in behaviour. Be prepared to put yourself second.
- Don’t go over the top trying to make your relative look as though nothing is wrong with them.
- Take care of your own mental and physical health. You need to be well if you are going to be able to continue to be a good carer. Accept help that is offered but don’t be upset if some people don’t altogether understand what you are going through.
- When you find yourself feeling down about the future, try instead to remember all the happy times you have had together.
- Be honest with yourself about your feelings. Professional counselling can be really helpful to you.
- Go on a course to learn how to nurse, particularly learn how to lift someone without injuring yourself.
- Find out as much as you can about the condition from books, internet, other carers and professional contacts.
- Contact The Alzheimer’s Society.
- Contact with other carers is one of the best sources of support.
- Tell people what’s happening. You will be surprised to find how many people have had similar experiences and can help you with sympathy, understanding and advice.
- Find out your rights and entitlements and don’t be ashamed to insist on getting them.
- Organise Power of Attorney sooner rather than later. It becomes much more difficult if you leave it until the illness becomes more advanced.
- Be sure to pass on to professional carers any strategies which you have found to be useful.
Music is well recognised as being pleasurable for many people with dementia. One carer regretted that she hadn’t mentioned to her husband’s carers that he still enjoyed improvising on the piano and other more unusual hobbies.
Advice for professional carers
- There should be a checklist to cover all the information a carer is going to need and someone should be responsible for making sure the carer has got a copy of this.
- All professional carers should be aware of the full range of available resources including the ones they are not personally responsible for.
- Don’t overlook the elderly isolated carer who makes few demands.
- Listen to the carer, no one knows more about their own situation than they do.
- GPs need to be encouraged to listen to carers who tell them they suspect a relative may be developing dementia.