To all you ‘carers’ out there…

Before I get into this post, let me say that I have a degree of reluctance to label those that support us as ‘carers’. To me, this takes away from the person’s identity as a husband, wife, partner or other family member who cares about us, but not necessarily identifies with the role of ‘carer’.

I am not really one for labels and at times they are not useful and can almost dehumanise us, lumping those that care into a homogenous group when – as with all groups of people – we are all different. The people we are can be very different from each other and as individuals we have individual needs that need to be addressed. The fact that we have – if we are fortunate enough – people who care about us is something to be valued and supported.

Personally, I count myself very fortunate in the support that I have available to me. My husband is my primary support on a daily basis, supporting me through tough times and good times. He is my rock and my strength. I have been married twice before and I often think what this journey might have been like within those other marriages. My second husband in particular would not have been supportive at all. I know that I couldn’t cope as well as I do with what life has thrown at me without my husband by my side, encouraging and supporting me in all that I do.

Now, I addressed this post ‘to all you carers out there’. For many of our supporters they may not be ready to have that label attached to them and I can understand why. So, too, I recoil whenever I hear the words ‘Parkinson’s sufferer’. I don’t at this stage feel I am suffering, so that word doesn’t fit for me.

However, even if those who support us do not feel ready to embrace the word ‘carer’ – if they ever do – when applied to them there is something I would like to say. Let me give the analogy of moving to our new house just over two years ago. I said to my husband that I wanted to make an effort to get to know our neighbours in our new community. Previously, we had pretty much kept to ourselves and hadn’t felt the need to. However, as I pointed out to my husband, we have moved to this house to see us through our retirement and ageing and progression of my condition. We will need all the support we can get and I also very much want to know that my husband has people close by that he can call on and turn to in the future if need be. So, we have been so fortunate that right from the beginning we have struck up a friendship with our neighbours. If we nurture that friendship and we all help each other out over the years, I know that we have created a support network that will benefit all of us in the future when we need it.

Just as we needed to establish a relationship with our neighbours before we might need support when my Parkinson’s progresses, we also need to look at other supports. I go to a monthly support group for people with Parkinson’s. It is a very supportive group and partners are very welcome and there are three of us women with Parkinson’s and two of the others bring their husbands. My husband works shift work and it can be difficult for him to attend because of that. I also sense though, that perhaps attending a group where he might imagine being labelled as a ‘carer’ might feel too soon. However, just as I felt that getting to know our neighbours from the beginning was important to establish relationships, I feel that attending as my husband and getting to meet and feel comfortable with the other husbands will be valuable for him. Getting to know them – before he might need their support – may build a foundation of friendship and connection of people trying to navigate this journey with the women they love.

Whether you are comfortable with the label of ‘carer’ or not, perhaps it is worth thinking about building connections and support networks that will support you in the future.

I will always be a person with Parkinson’s and whatever the label applied to him, my primary concern will always be that my husband is not overlooked and that he is supported on this journey of ours.

I am not in this alone and know I never will be and for that I will be eternally grateful.