Tonight I have been looking around at other Blogs about Parkinson’s and amongst them found some Podcasts titled ‘When life gives you Parkinson’s’. I listened to one on the subject of Carers or Caregivers and how the person with Parkinson’s and their wife feel about the label of ‘Carer’. I found myself reflecting on this as I listened and it struck a chord with me. They came up with a term ‘Partners in Parkinsons’ and I like that.
As a Social Worker, having worked for several years with patients/clients and their families, we are taught a thing called ‘systems theory’. This is explained as follows:
‘Family systems theory is an approach to understand human functioning that focuses on interactions between people in a family and between the family and the context(s) in which that family is embedded’ W.H. Watson, in Encyclopedia of Human Behavior (Second Edition), 2012
In simple terms ‘Systems Theory’ acknowledges and recognises that all members of the family ‘system’ impact upon each other. So, in working with someone with a health condition we very much look at who within that system supports – and also – does not support the person with the health condition. The strength of that support system or indeed the weakness of that support system has significant impact on the person who is directly affected by the condition.
The use of the term in the Podcasts of ‘Partners in Parkinson’s’ resonated with me for that reason. In my case my Partner in Parkinson’s is predominantly – on a daily basis – my husband. What effects me effects him and vice versa. But, I also have a wider system of my adult children and in many ways my grand-children. What happens to me impacts on them not only now, but in the years ahead. How I manage my Parkinson’s and how it affects my interactions with them is integral to my relationships with all members of my family.
I want my family to know me as a person first and foremost, but Parkinson’s is a part of my being that will have an impact on all within my family system in one way or another. My role within that system is to endeavour to do my best to have the best health I can for as long as I can. To ward off the worst of the effects by eating right, exercising and learning as much as I can to help myself and in doing so, I help everyone involved in the family system. It is important to me for my family to look back and know that I did my best and for me to be able to actively engage as part of that family system.
The word ‘carer’ has connotations to me of someone delivering a service if you like. Of one person being the ‘giver’ and the other being the ‘receiver’. I’m not sure it will ever be a descriptor I will be comfortable with to be attached to my husband. We are a partnership. We have been since we first got together. We are an equal partnership, making decisions large and small together.
Partners in Parkinson’s… I like that!
My journey with Parkinsons 
This topic is extremely important. My experience in a family where the father had Parkinsons, none of us saw ourselves as “carers” but rather family doing as family do. The label sounds impersonal. However when “carers” were needed to supplement family support in later years, that was a very explicit relationship with: task descriptors and timetabling. When that time came it was much appreciated by everyone.
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I agree. Carers does imply some formality to me and that puts to one side the previous relationship and replaces it with a role description that changes the dynamic. I have often said to family members of my patients who have to make the big decision for the person affected to go into residential care, that rather than doing the hard yards of the ‘carer’ role they can reclaim their role as daughter, son, wife, husband etc. A hard decision nevertheless.
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