“As a carer you’ve got to stop feeling guilty”

Family members and friends of someone living with dementia often find themselves in the role of a carer, even if they don’t identify themselves as such.

For some, the adjustment to this role can be harder than expected.

Lyn, whose husband Mike lives with Alzheimer’s disease, said the caring role did not come easily and there had been many times when she felt angry.

“I've always been fairly independent and sometimes I feel stifled,” she said.

She said it was important for carers to know that even though their role could be difficult, there was also joy.

When she is feeling overwhelmed, Lyn finds it very helpful to visit friends and take time to read.

“You can carve a little life out for yourself,” she said. “You’ve got to stop feeling guilty.”

Maintaining your wellbeing

Dharsh (pictured above with her mother Mallika) agreed that maintaining social connections and continuing with activities you enjoyed can help.

“It’s so important to engage in exercise especially when you are a full-time carer, as caring for a loved one living with advanced dementia can take a massive toll on your physical and mental health,” she said.

Dharsh takes her mother Mallika, who lives with dementia, along to her regular gym sessions.

While it sometimes can be difficult, she said it was important to have time for herself to help her manage the challenges of being a carer.

“It was a hard thing to take her but I kept doing it because that was my time and it helped Mum to socialise outdoors,” she said.

Managing challenges when becoming a carer

For Lyn, another challenge was that her husband Mike had a hard time understanding and accepting his diagnosis, blaming his symptoms on old age.

She found this difficult as he didn’t want to accept that sometimes he needed care and couldn’t be left alone.

Memory loss has exacerbated many of the challenges they faced and Mike is sometimes unable to remember his grandchildren or daughter-in-law, something their whole family has found difficult.

Changes in their relationship were also challenging for Lyn.

“We used to talk for hours, that is how I fell in love with Mike,” Lyn said.

“We used to sit in the car and talk until two o'clock in the morning when we were courting. We don't have conversations anymore.”

For support as a carer

Dementia Australia provides practical and emotional assistance to families, carers and friends at every stage, from pre-diagnosis onwards.

Contact the National Dementia Helpline to find out how we can support you.

The Helpline operates 24 hours a day, seven days a week, 365 days a year on 1800 100 500 or visit our website.