Why day care or respite at all, when in fact, many of us could have been supported like any other disAbled person to stay at work?
Of course, when we are in the later stages of dementia, our care partner may need a break, and we might have to go into respite care to support them, or we may even need residential aged care permanently, but day care, a place where small children go while parents work?
Many people with younger onset dementia are diagnosed much earlier in the stage of the disease process. It is not the disease we fear the most. In fact, it is rarely a disease we consider as a possibility. When I attended a Living with Memory Loss course not too long after diagnosis, it was suggested to everyone that we even considered trialling aged care respite before we needed it, to get used to it. This in no way supported me to live well with dementia, or to ‘fight for my life’ .
Personally, I find the volunteering I do, and the advocacy for people with dementia which includes attending and speaking at conferences and other events, is a far better form of respite than ‘Day care’ for everyone, especially my husband and I. This week I spent two days in Melbourne as a consumer (volunteer) for Alzheimer’s Australia, and buddied up with another person with dementia from Adelaide for his first time at one of these meetings. He agrees with me that living a normal life, is much more fun, far more rewarding, and about living well with the disabilities he/we have, than attending ‘activities or events for people with dementia’.
The photo above is of me representing Dementia Alliance International with two delightful women from the Alzheimer’s Society in Taipei, at the ADI2014 conference in Puerto Rico this year… so much more fun than “getting myself acquainted with aged care”, as advised to me a few years ago!