This journey of ours that we travel on with Parkinson’s is a challenging one. There is no denying that. If we have family who support us or partners that live with us, it is a joint experience and each affects the other as we learn what Parkinson’s means for us all.
I was reading a post in a Facebook page by a person with Parkinson’s (PWP) which voiced their concern about the effect of some posts by carers on them. They describe some posts as ‘venting’ about the impact Parkinson’s has on them. The author of the post found it distressing to read about the negative impact on the carer of someone supporting a PWP. They voiced that they felt that a separate page for carers might be a useful solution for all.
I absolutely get what they are saying and at times there is a thread that is posted by a ‘carer’ that is difficult to read. Often the posts are by people who have lived with Parkinson’s for some time and the needs of the PWP have started to have an increased effect on their lives. The author of the post – the PWP – made a good point in many ways. However, personally I feel that reading these posts for me puts in front of me things to consider for my husband for the future. Sure, it’s not pleasant to think of ourselves as a ‘burden’ – as voiced by the FB page author today – but it does illustrate that the carer role needs as much support as does ours as the person with the condition.
I usually read the posts on the FB page at least once a day, maybe more. I find that I am selective about what I read and if the subject matter of the initial carer post is something that I find challenging, I may choose not to read it. So too, the comments by other carers I may choose not to read either.
For me though, I have often been referred to as a ‘planner’ and I tend to look ahead and plan for whatever is happening – or likely to happen – in advance so that I look at the tools and supports I will need for whatever the situation may be. This is partly my nature and partly my training as a social worker. There is probably merit in separate carers and PWP forums to express thoughts, feelings and often fears. For me though, reading posts by carers – while they can be confronting at times – reminds me that I am not travelling on this journey alone. It reminds me to check in with my husband about how he is managing and what support he might need and talk through how this may be achieved.
Often when I have read a post on the FB page – whether from a PWP or their ‘carer’ – I will talk to my husband about the subject matter and ask about his experience in supporting me and whether anything contained in the post resonates with him. By reading the carer posts as a PWP it reminds me that this condition I have can have a significant effect on not only my husband but also my other family members.
In my work as a social worker, I remember talking to husbands, wives and family members of people with dementia in a previous role. Often those family members would refer – rightly or wrongly – to their person with the diagnosis as ‘selfish’ in that they no longer seemed to care about or consider others’ feelings. Anyone with a condition that affects the brain will experience changes over time in their cognition and other areas of brain function. Anxiety and depression are common for people with dementia, but also with Parkinson’s. I used to reframe the experience from using the term ‘selfish’ as that word to me infers a conscious act of refusing to see another’s perspective. Rather than labelling the person as ‘selfish’ I used to say that the person became ‘more inwardly focussed’. By that I mean that the person – due to changes in the brain – was not actively dismissing the experience of others affected, but that they focussed more on their own lived experience and were unable to fully comprehend what was happening for others.
I have heard from others who follow this Blog that they find reading some of the posts by carers challenging. That is understandable. However, for me it acts as a reminder that those in the caring role can struggle too and need to be considered. Those posts may be helpful in starting conversations between those with the diagnosis and those that support them.
I feel that an honest sharing of experiences in a partnership – such as mine with my very supportive husband – ultimately will strengthen our relationship as both gain an understanding of what each other’s lived experience is like.
Hearing about the difficult role of a carer may be hard, but it is a voice I very much need to hear.
My journey with Parkinsons 