From our Special Correspondent...
It’s inevitable that as a relationship evolves the roles within it change, and change again and again. At different times during the life of a family we all take on different responsibilities and challenges in response to the demands put upon us. The growth of careers in the early years and then the nurturing and managing of babies, children and teenagers inevitably cause chaos and disruption. Despite these shifts in responsibilities the team copes well and life goes on.
Something the team won’t be prepared for is the diagnosis of a chronic disease. There will be a pause. Then when we’re through the initial shock there’s a period of time where everyone tries their very best to just carry on as normal. The first few months and maybe even years see small changes but everyone manages to continue in their virtually unchanged roles until one day there is a realisation that normal isn’t achievable anymore.
And then the roles start to change again, “the carer and the cared for”. The carer takes the responsibility in the relationship and this time it’s for life. As the carer it can be a tough realisation that you will be the lead in the relationship, you’ll be the driver. This can be especially hard if you have always shared the decision making or taken the backseat to your more confident partner. The thought of always making the choices, initiating the activities and taking the leading role can be exhausting. It could easily cast a shadow of bitterness on the perfect partnership or severely shake an already rocky relationship.
Just as you thought you were heading towards easier times with growing children becoming more independent and hard earned income making life easier here comes the curveball!
It wouldn’t be overstepping to say that a PD partner might begin to feel like a single parent especially to younger more active children. The chaos and noise of any age child can bring pleasure and anxiety in equal measures for the person with PD. It’s good to renegotiate the responsibilities but never excuse anyone from taking their share. Children need both of their parents.
A major swerve from the team plan comes when the career of a person with PD ends prematurely. This was never imagined and can throw the family dynamics into chaos. There may be sadness or emptiness, maybe a sense of never achieving the anticipated goals. Often there’s anger and frustration and a sense of worthlessness. The wonderful retirement that you once looked forward to feels very different when it’s forced upon you. What will you do all day? And how will you fit into the weekday home schedule that you were never meant to inhabit.
The loss of a salary will without doubt cause problems for most families. Now is the time to do some serious work on the planning of team finances, moving quickly and gathering of the available advice is essential. Hunt in the drawer for those leaflets you given at the time of your diagnosis. There are local groups, national groups and a host of experts to help. The fog will clear eventually. It will be hard but try to look for opportunities and the positives. It’s always worth remembering that no one has walked in your shoes but many have certainly been down the same road.
The diagnosis of any chronic disease will threaten to take any family off track. It can be confusing and sad for all and there needs to be a lot of conversations to ensure that everyone’s feelings are addressed and everyone understands the changes. No matter what happens there is still a role for everyone, finding those new roles might be challenging but who knows, you might find some hidden rewards.