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No one tells you this, but caring is hard! Caring for a loved one with dementia is both physically and mentally challenging. But what is perhaps even harder to deal with is the social isolation – both for the person with the diagnosis, and their families and carers.
Mum was diagnosed with younger onset dementia in May 2015, although we had been noticing the subtle signs for two or three years before that. She was forgetting how to do basic tasks, becoming confused and having difficulties with language.
Mum’s GP had known her and our family for over 20 years, but when we described her symptoms he brushed them off. However, we are both nurses and knew something was very wrong. After three more visits to the GP and still no answers, we convinced mum to see another doctor and get a second opinion.
The next year was taken up by an array of tests and assessments, along with referrals to a geriatrician and neurologist. We held on to the hope that maybe they would find something curable that would explain what was happening to mum. But, despite there being no family history, we already knew deep down that she probably had some form of dementia.
The whole family went to the appointment when mum was given her diagnosis. We were devastated and relieved all at the same time! The symptoms now had a name, but no cure. We had advocated strongly for mum to this point, to ensure she got a diagnosis. But what next?
We joined the Alzheimer’s Australia NSW Younger Onset Dementia Key Worker Program, which has been amazing. Our key worker has supported mum and the rest of the family throughout the entire journey so far.
Accompanied by other family members, while she was still able to, mum attended get-togethers specifically for people with younger onset dementia. This gave her and us a place to relax and chat to other people who really understood the challenges of dementia and the love involved with caring.
Mum loves to chat! We always said she would talk to anyone. She has family and friends all over the state who used to call and visit regularly. Following her diagnosis, however, the calls gradually reduced and the visits stopped. It’s no one’s fault, but as mum struggled more and more with language, her social isolation increased.
A couple of family members and good friends do still visit regularly. Mum loves seeing them, although we understand how difficult it is for them. They are losing a friend, a sister and an amazing woman.
Following diagnosis, mum was already living with Emma and her family while dad worked interstate. However, her safety and wellbeing around the home became an issue. It started with little things like leaving hot plates, the iron or the grill switched on, forgetting to turn off taps and leaving doors unlocked.
Mum is now in full time residential care. She hates it and just wants to come home! However, we know it’s the best place for her. We visit all the time and take her shopping or to visit places and people. We are trying to normalise the experience as much as possible and to nurture the social relationships that remain.