Beautiful connections form at care group

Caring for a loved one with an incurable disorder takes a toll on family members.

Support groups are one way for carers to connect and share their experiences, and at Epworth Camberwell in Melbourne, people who care for loved ones with Parkinson's disease are finding strength together.

For Graeme Adam, the group represented a chance to help others, after his wife Marcia was diagnosed with the degenerative neurological condition in 2014.

Initially, Marcia's speech became more difficult, and they laughed together about ways to communicate.

"Early on, we joked between ourselves," Graeme said.

"I told her to get elocution lessons so I could understand her.She told me I should get hearing aids.

"I fulfilled my part of the bargain and got the hearing aids, but I am not sure she ever got the elocution lessons."

Epworth HealthCare's rehabilitation service has a multidisciplinary team that specialises in Parkinson's disease.

It includes a rehabilitation consultant, neuropsychologist, clinical psychologist, social worker, occupational therapist, speech pathologist, dietitian and physiotherapist.

The support group for carers of Epworth Rehabilitation patients living with Parkinson's disease started in 2019.

Graeme said Marcia's condition appeared to be further advanced than most of the others in the group when he joined.

Marcia was first diagnosed by her general practitioner, who had some concerns after watching her walk out of his clinic following an appointment. She did not have the tell-tale tremors usually associated with an early Parkinson's diagnosis.

"I was able to help with more information," he said.

"For all of us in the support group, it was about spending time with other people who were going through something similar.

"The main thing from the carers' group was the realisation that you aren't the only one going through this. That was the greatest benefit."

The group was established by Epworth Rehabilitation neuropsychologist Alicia Dymowski and social worker Natasha Twist due to a gap in support for carers.

"It's really beautiful watching connections form," Natasha said.

"Some members have taken up things like dancing and singing lessons together and frequently catch up with one another, outside of the group."

The group members support each other and discuss the impact of the caring role on their lives, while sharing information that supports each person.

Every meeting starts with an opportunity to connect with other carers over afternoon tea, followed by information sessions covering topics such as community resources, changing relationship roles, communication issues and managing disease progression.

These sessions are delivered by Epworth clinicians with experience in Parkinson's disease.

For Graeme, the past few months had been increasingly difficult, and sadly his wife of 61 years died in September 2023.

"Marcia's disease was attacking her speech and swallowing functions," he said.

"She always had a quiet voice but understanding her became difficult and our conversation almost disappeared.

"I was receiving one-word answers if I was lucky. Feeding her also became a challenge as she was struggling to swallow."

He said hearing other people's experiences in the carer support group had been helpful.

"Everyone in the group was going through something different. Some were caring for people who had the characteristic tremors, others were on different treatments, including deep brain stimulation, so everyone's focus was different," he said.

The Parkinson's Disease Carers' Support Group meets atEpworth Camberwellon the fourth Thursday of each month from 2pm-3.30pm.

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