Support for carers of people living with Parkinson’s disease

Marcia Adam didn’t have the telltale signs of tremors that are commonly associated with an early Parkinson’s disease diagnosis.

In 2014, it was her GP who first suspected a problem, as he watched her walk out of his clinic after an appointment.

Marcia’s husband Graeme soon became her carer, as her condition deteriorated.

Initially, her speech became more difficult and they laughed about ways to communicate.

“Early on, we joked between ourselves,” Mr Adam 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 Rehabilitation has a multidisciplinary team that specialises in Parkinson’s disease. The team includes a rehabilitation consultant, neuropsychologist, clinical psychologist, social worker, occupational therapist, speech pathologist, dietitian and physiotherapist.

Carers of Epworth Rehabilitation patients living with Parkinson’s disease are given the opportunity to attend a carer’s support group that started in 2019.

Mr Adam joined the group and said Marcia’s disease appeared further advanced than others in the group.

“For most of the people who were at the carer’s support group, their loved one weren’t as advanced in their illness as Marcia. I was able to help with more information,” Mr Adam 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 carer’s group was the realisation that you aren’t the only one going through this. That was the greatest benefit.”

Mr Adam said everyone in the group had different experiences to share.

“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.”

The last few months were particularly tough for Mr Adam.

“Marcia’s disease was attacking her speech and swallowing functions,” Mr Adam 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.”

Epworth Rehabilitation Neuropsychologist, Alicia Dymowski and Social Worker, Natasha Twist established the Parkinson’s Disease Carers’ Support Group because of a gap in support for carers. 

“It’s really beautiful watching connections form,” Ms Twist said.

“Some members of the group 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 member. 
  
The group meets at Epworth Camberwell on the 4th Thursday of each month from 2.00pm – 3.30 pm

Each 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. 

Graeme and Marcia were married for 61 years. Marcia passed away in September this year. 

Learn more about Parkinson's disease.