Your support network comes in many forms, but what do these terms really mean?
You may have noticed recently that Parkinson’s SA&NT has started using the term ‘primary support person’ instead of ‘carer’. Here is a little insight into our reasons why.
Our vision is to enhance the quality of life for all people affected by Parkinson’s or other movement disorders.
Our purpose is to maximise choice, independence and wellbeing for people affected by Parkinson’s or other movement disorders through support, education and advocacy.
These defining statements embody our belief that the individual with a neurological movement disorder is primarily responsible for their treatment, care and wellbeing, whilst those around them play a support role to maximise their independence and quality of life.
A medical diagnosis of Parkinson’s often labels the individual as a ‘patient’, implying they need care. All too often relationships begin to change and the roles and expectations of a relationship, indeed even the balance of power, may be significantly altered.
Those closest to the ‘patient’ are now viewed as carers which implies a responsibility to make their wellbeing their core priority. Many who provide care and support will not view themselves as a ‘carer’. First and foremost, they will view themselves as a wife, a husband, partner, son, daughter, friend, relative or even a workmate.
In truth everyone impacted by a Parkinson’s diagnosis needs support and care and it is important to bring down any potential barriers to equality in relationships. When everyone’s needs in this circle of support are taken into active consideration the likelihood of one person feeling invisible or unsupported is reduced. ‘We’, ‘us’, ‘together’, ‘united’ are all words that convey an equality of purpose and importance.
As stated, the primary care role sits with the individual who has the diagnosis, they are responsible for their care plan; the rest of the family, friends, community make up the support team. Within that circle of support one person may take on the role of primary support person.
Who is considered a primary support person? It may be the spouse or partner, a child, friend, parent or relative. The person with Parkinson’s should negotiate what they want their support team to do and also how they will support their team, especially the primary support person.
Communicating needs and expectations within the support system from the very start will ensure the family, friendship circles and workmates are all on the same page moving forward as a harmonious team.
Regardless who is considered the primary support person, Parkinson’s SA&NT will always seek to enhance the quality of life of everyone affected in any way by Parkinson’s or other neurological movement disorder.
For support, please contact Christian or Maggie in our client support team on 1800 644 189 or email us at [email protected].