If you’re a social media user, you might have seen the recent “By the time you’re 35, you should have…” meme. Well, by the time I was 35, I was the full-time carer for my wife, Trisha. Our wedding was in January 2005, we’d been married for just four months when she was diagnosed with multiple sclerosis. I’m 47 now and the intervening 13 years since her diagnosis have been I genuinely don’t know how to adequately describe how it feels. I could say ‘frustrating’, ‘challenging’, ‘sad’ – all those words people use when they want to underplay the seriousness of an issue – but none of those are really enough. Harrowing, exhausting, relentless – these are all much nearer the mark.
Trisha and I had been through the mill in the first three years of being together – dealing with the aftermath of previous relationships, legal issues, and my Dad’s terminal illness. When we decided to get married – and organised it inside twenty days! – it was supposed to draw a line under all the stress we’d felt and the happy life together that we’d dreamt of would really began.
Trisha had been having problems with her eyesight and walking which we assumed were stress-related and would disappear as quickly as they appeared. Nothing prepared us for the news that would completely redefine our lives and our relationship. We were actually relieved to hear a diagnosis of multiple sclerosis, given the alternatives we were told of. That relief was misplaced.
Trisha’s MS was severe and progressive from the start. She needed assistance with everything from the day her symptoms first appeared. I didn’t apply to be her carer, there was no selection process. It was simply a case of her needing help and I was the only person in a position to do it. However, being a carer is anything but simple.
I’ve helped her with the most basic of human skills: from feeding her to cleaning her (due to double incontinence) to carrying her around in my arms when she could no longer walk. I’ve dealt with her black-outs, pressure sores, infections and pain. As her cognition and memory deteriorated, she’s forgotten who I am, and I’ve calmed her down when she’s had hallucinations caused by weapons-grade pain meds. I’ve seen her suffer like no person should see a loved one suffer. Yet I’ve been absolutely astounded by her resilience and ability to never lose her smile, despite everything.
Living with MS cost us our careers and the possibility of being parents, and, as time wore on, it changed the very nature of our relationship. Being a carer can be a very lonely place. People we used to see every day would promise to be supportive but faded away. I can understand that to a degree, lives do diverge, but disability and caring is also among the tl;dr subjects of life – ‘if I ignore it, it’ll go away; it won’t affect me’. We discovered very quickly who our good friends were. Even some family members disappointed us.
The pressure of the responsibility caused me severe mental health problems. I’ve had countless panic attacks, which made me afraid of everything, of life itself. I came to assume – and still do, to a degree – that the slightest sign of illness in me or anyone close to me had the potential to be life altering. My lowest point was sitting on the sofa, staring out the window, crying my eyes out, and wondering ‘what’s the point?’. And I’d always berate myself for not coping better.
I struggled with it for over a year before my close friends and people from carer support groups suggested – urged and cajoled – that I get some help. Seeing my GP was vital. I was prescribed anti-depressants and, as Trisha’s condition worsened, I’ve had more than one series of counselling sessions. I made changes to my diet and started a fitness regime which helped with the physical burden of caring, but my mind was always vulnerable to the stresses of having someone’s life in my hands.
There were so many times that I’d wish that it would all go away, and immediately be overcome with guilt because what would have to happen to get that respite you long for is exactly what you’re trying to avoid. MS is incurable, so I’d either have to leave Trisha or the worst would have to happen to her. I felt guilty for thinking it, but the incessant frustration and exhaustion that providing 24-hour care brings made me think things I wouldn’t dream of thinking in other circumstances. It’s an even stranger feeling now it has stopped.
Trisha died last October, and I miss her. Her final days in a hospice were heart-breaking. The frustration and exhaustion now seem so trivial when set against knowing I’ll never see her again. I’ll never hear her say “I do love you, Simon”, which was her way of acknowledging what I did for her, as well as being a declaration in itself; this was the last thing she was ever capable of saying to me and I made sure that the last words I said to her were “I love you with all my heart”.
Seven months later and I’m starting to re-discover who I am. I hesitate to use the phrase ‘moving on’ because it implies a leaving behind, and I’ll never do that. Trisha has left an indelible mark on me. It’s only now that I realise that a good portion of the personality I have now is in no small part thanks to Trisha.
My close friends and family have been unflinching in their support. I’ve also become a member of WAY Widowed and Young, a support group for people under 50 who’ve lost a partner. I remember those final moments in the hospice, I felt like my world had collapsed. I thought I’d never find the strength to keep going. These connections, old and new, have made me realise I have so much still to give, still to live for. They’re vital.
Read more blogs by Husband for a Carer here
Find out more about WAY Widowed and Young, a peer support network for men and women who’ve been widowed before their 51st birthday, here