The Hardest Thing

Next week, 11th to the 17th June, is Carer’s Week in Ireland. We’re delighted to have Guest Blogger Gemma Donnelly Cox writing about being a Carer and how she balances life in the ‘here and now’ while also planning for the future.

Caring, for me, is about enabling and empowering my husband to live the life of his choosing to his highest potential. Simple, eh? I’m not so sure. 

Over and over again, I am torn between goals that, at times, conflict. And I’ll bet this happens to every carer; maybe not the same goals but tension nevertheless. Currently, the ones that preoccupy me have to do with timing and with attitude. When I say timing, I mean whether to focus on the present or the future. A whole lot of enabling and empowering is about making the most of every day; doing today’s work today. 

Right now, I’m typing this blog and Alexis, my husband, who is quadriplegic with progressive MS, is using voice control software to work on his computer.  Our son has just left the house to go bouldering at the climbing gym up the road.  We are all enjoying the here and now this afternoon.

Much of the time, however, I feel as though my focus is planning for the future, leaving little room for the present. So much thought goes into what I know lies ahead and also to planning for the unknowns.  What if Alexis’ voice starts to weaken further and he can’t use voice control software? Should he be using eye control now, just in case? But what if his eyesight starts to fail? Worries about the future can rob you of ‘the now’ as you flail around trying to prepare for what might emerge.  But if you only stay in ‘the now’, you could very well end up not being ready when one of these MS issues suddenly rears its head. 

Right up there with timing is attitude.  It seems to me that so much of what is joyous in life is about knowing when things are good, celebrating them and being grateful for them.  Like right now blogging about how it feels to be a carer.  A lot of the time, however, gratitude for the good things can be in tension with putting mental energy into staying vigilant and being ready to advocate. For example, Alexis was recently invited to a dinner with people who know a lot about MS. I was looking forward to going with him and slacked up on my usual advocacy of making his requirements clear to the hosts. I figured that people in the know would get it right. Wrong. The hosts invited a quadriplegic guest seated in a large wheelchair to a venue where the tables were way too low for his chair. The path to the (too small) space at a table- in the middle of a room, full of seated diners- was impossibly narrow. It does not have to be like that folks! It’s hard to be grateful for a nice night out when your husband can’t reach the table and your advocating would have made it different.

When I feel I’m getting the balance right managing the tension between timing and attitude, I am far happier and more confident in my Carer role. But before I sign off, I’d like to add one more tension, the one that can arise between caring and self-care.  During Carer’s Week, we’re reminded that Superwomen and Supermen stay sharper when they take care of themselves.  I was reminded of this back in the autumn when I was away for the weekend by myself (a super duper self-care step) and I came across a young couple in their 20s.  The carer in the partnership was a real Wonder Woman.  But she was wrecked tired, more tired than I remember being at her age and stage. I had time on my hands and tried to help out.  She knew I was up to the job but she simply couldn’t let herself stop. Carers, none of us last forever but if you want to be in for the long haul and really make a difference for your loved one, you’ve got to take care of yourself too. For many carers, I guess that’s the hardest thing.

Gemma and Alexis Donnelly live in Dublin with their son Finn and Labrador Retriever, Elmo.  In 2016, Alexis joined the Scientific Steering Committee of the Progressive MS Alliance.  His carers have supported him to fulfil his role in the Alliance. For more on the Progressive MS Alliance and the exceptional work that it does in pursuit of its aim to understand and overcome some of the biggest barriers to treatment development for progressive MS, see www.progressivemsalliance.org