Who cares for the carers?

I have written on Slugger in the past, about the challenges I faced during my treatment for breast cancer some thirty years ago. Written from the perspective of someone at the receiving end, it was relatively straightforward for me to put into words what my reactions were and how I dealt with the various ongoing issues any serious illness can impose upon an individual. A great many articles about ill health are from that personal point of view, but what is less common is a discussion around the challenges for partners or carers of patients, and for this piece, I’m thinking principally about men.

It may seem as though I am taking advantage of my audience by writing on this particular theme for Slugger (assuming that the readership on this site is predominantly male), but it is an important issue to address and maybe my thoughts will reassure a few of you gentlemen out there, who have experienced similar scenarios, that you are not on your own. Perhaps a good starting point would be how my own husband dealt with my diagnosis and ongoing treatment.

It honestly never really occurred to me in the early stages of my illness to ask how he was coping with it all and, in hindsight, it was a question that I was very remiss in omitting. We were living far from both our families / his job often took him away from home / our children were only small / there was the surgery, the radiotherapy, the chemotherapy / we were tired, tired, tired: I could forever justify the list of excuses I had for not asking the most important person in my life how he was actually doing. I’m not proud of it.

Then one evening when I was attending a support group meeting at the local hospital, a lady came along accompanied by her husband. As I remember, he didn’t say or do much except to hold on to his wife’s hand and smile embarrassingly when the black humour of the group’s conversation threatened to cross a line. I thought he was brave to be there and although he would not have been aware of it, his presence had activated a lightbulb moment in my head. When I returned home that evening, for the first time I asked my husband how he had felt when I had been so sick. His answer was unequivocal. “Totally helpless,” he said.

The point I am trying to make here is that it took me far too long to find that out, and if I’d missed this then what else had I missed? Was my lack of awareness because he was a man, and we’re all persuaded to believe from a very young age, that ‘real’ men shouldn’t be seen as weak, and should not openly admit to their insecurities? Or could it be that, as a woman, I easily unburdened my worries and fears in the company of my female friends, allowing me a certain amount of emotional release.

So, what does ‘helpless’ mean? Synonyms include: powerless, vulnerable, exposed, weak, unable – all of them words that I never imagined my capable, dependable and confident husband to be. And that, I think, is the crux of it – ‘weaknesses’ can be hidden because of an often-misguided belief that they may have negative effects upon the other person and conversely, giving the illusion of being strong is seen as bolstering the other person up. But where is the release valve then? Where can the carer go to help themselves and avoid the build-up of resentment that can often result from all the pretence? There needs to be some sort of backup for everyone involved, because illness of any sort is not only about the person who suffers it.

I often think about my mum when it comes to the subject of caring. My dad suffered and died from multi-infarct dementia and my mum was his sole carer until almost the end of his life. Rarely did I hear her complain about the challenges and hardships she must have gone through during those difficult times and, thankfully, she did avail of the empathetic and practical help she received from the Western Health Trust Social Services team. She may have accepted that help begrudgingly but she did accept it and I wonder, had the situation been reversed, would my dad have done the same? He was a kind and intelligent man but he was fiercely proud and I feel that he may not have acquiesced in quite the same way.

Thankfully, in more recent times, and because male issues have been rightfully highlighted in the media and elsewhere, it is more likely that men feel less restrained in asking for the emotional and practical help they need, when they need it. Sadly though, as we know with Covid, many of the services that could aid and assist carers have been either postponed or abandoned completely. Yet I’d like to think that, for those men who are presently caring for a loved one and finding the world a hard place to be in, platforms such as Slugger can have real value. For by opening up constructive and honest dialogue, burdens can be lightened in the most unexpected ways. It’s never too late – you only need to ask my husband.