Who is caring for the carers?

In 2024, the Australian Bureau of Statistics reported that there were 3 million carers in Australia representing 11.9% of all Australians living in households.

The contribution, generally unpaid or underpaid, of families who care for a loved one is overwhelming when looking at the statistics in Australia and beyond.The lived experience of every carer is different. Over many years there are a lot of organisations that have been established to support carers in lots of different ways. When my husband was diagnosed with CAA, and as it continued to impact his and our lives, I looked for avenues that potentially could assist me and where I could share my experiences. But where....? There are support groups for people with aphasia and their families, support groups for people who care for someone who has had a stroke and support groups for carers of loved ones with dementia. 

All of these were relevant in part to some of the issues that I was dealing with. However, none of them really resonated for me as a person who was caring for someone with all of these elements but not the additional aspect of caring for someone where you never know when the next stroke will occur. It's the "when not if" of the future which is so unknown, seemingly random and completely uncertain.

The only thing I have been able to find is a Facebook group called Cerebral Amyloid Angiopathy Support Group and Chat.  I am not really a user of Facebook but intend to take a look at this soon.

As I go into surgery myself in the near future, I find myself so grateful for the loving family support that I have and that of friends, knowing that my husband will be well supported while I am away. As he is at the moment, I know that he will be fine ie I hope he will be fine because you never know when the next stroke will come and how big it will be. Is it going to be tonight, this week, next month, next year or in 5 years. You just don't know. 

Here's a call out to all carers who are having to deal with their own health issues that require time out for medical attention. I hope that you too have the support that makes your decision to have that treatment easier. 


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