Loneliness as a carer is something that I’ve experienced as well as many others who I attend support groups with. My husband died 15 months ago. He was diagnosed with dementia and was in a care home for two years. You lose so much facing dementia; memories, free time, friends and even yourself.
Family carers need support
Family carers absolutely need more support. They cannot do it on their own. It’s so much like the aeroplane instructions where they tell you to put the breathing apparatus on yourself before the children – you cannot do much else if you are worn out and you go down yourself.
But people forget that dementia also leaves an impact when the person diagnosed dies. I still do feel as though there’s such a hole in my life, and the eight years of looking after him since diagnosis have certainly taken their toll on me. It can take a while for you to take stock and consider where to go to after this.
More and more groups
I’m really pleased to hear now that there are so many more groups than there were eight years ago; there’s dementia cafes, sing and song groups as well as support services offered by local churches.
But there is still more work to be done. I was fortunate enough to be supported by my specialist dementia Admiral Nurse, Rachel, who signposted me to so many respite services. They give you time to go out and shop, spend time on your own and see friends.
It’s important to stay healthy and connected
We talk about carers staying healthy and connected but it’s so important to keep that connection with yourself as well; to be aware of your feelings and to try to process them as best as you can. Rachel told me that it is ok to cry, shout and that I was doing a good job.
Building a network
As for where to go from here… I think we need to build up a network of carers, friends, families, health and social care campaigners and advocates for dementia care. We need a connected community where the health of carers is at the forefront. The more people we get talking to and about carers, the more money and training we put into things like respite services, the better.
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