For a long time I was in denial about my role as Finn’s carer. He was able to do most things on his own such as washing, dressing, and eating. The kinds of things you typically associate with caring. I convinced myself that the increased burden I had taken on dealing with our joint but also individual finances due to his aphasia was merely me acting as his wife. Similarly, I believed that the role I assumed as his personal assistant creating, rescheduling and taking him to appointments was also part of my wifely duty. I became his chauffeur taking him to see his friends, running him to the shop if he wanted to put the lottery on, or taking him to the barber. I helped him to say what he needed to when words failed him or I helped him to prepare what he wanted to say in advance if he preferred to try something independently. I would send him to the doctors with a handwritten note so that they would be sure to know whether it was a sick note or a prescription he needed. I provided a listening ear or a shoulder to cry on while he questioned why him, why now? I learned to remain calm (most of the time) when he snapped at me in frustration.
Trying to balance all of that with a full time, high pressured job took its toll on me. Eventually I was failing at my caring and wifely duties because I was throwing myself into work to escape. With the daily commute included I was away from the house from 7am until 7pm most days, sometimes longer. By the time I got home I was exhausted from the day and collapsed on the sofa. If Finn tried to talk to me I did my best to hold the conversation but most of the time I just couldn’t face it. I’d either have to ask him to stop or my mind would wander, losing track of whatever he was trying to tell me. The result of this? Feelings of failure, isolation, loneliness, frustration, guilt and anxiety for both of us.
I’ve realised now that although I might not look like a carer when you see me out and about with Finn, that doesn’t mean that I’m not one. I don’t know why it took me so long to see it. Yes, of course I am acting in my capacity as Finn’s wife and I have vowed to be there for him in sickness and in health. Yet if you remove me from the equation Finn would still need the support that I offer him. For that reason I shouldn’t be belittling the effort I put in to help him keep as close to a normal life as possible.
Reflecting on the last few months since Finn’s second stroke I can see the benefits that have arisen from my increased presence at home. For Finn his mood has improved, his expressive speech has shown great improvements and he has been able to start new activities to help with his general fitness and rehabilitation. More personally I have managed to regain control of my anxiety and depression. I didn’t realise how badly I had been suffering for the past 19 months until I took some time to look after myself and finally feel more “normal”. I haven’t felt this positive or happy in a long time. I don’t feel guilt for not being around enough and I don’t worry about having to take time off work to take Finn to appointments or support him after a seizure. I haven’t got that niggling feeling in the back of mind wandering how I would know if anything had happened to him. We have a pendant alarm in place but even if he thinks to press the button it would still take me an hour to get home to him from work.
I’ve only given you a glimpse into the thousands of concerns and negative thoughts that constantly flew around my brain while I balanced work and caring. It was exhausting to just exist back then. To constantly listen to myself and not see a way out. I succumbed under a pressure that I had placed on myself. No-one else was to blame – only I could make the decision to plough through as I was or make a change. It’s unfortunate that I had to reach such a low place before I realised all of this but I am happy that it has forced me to refocus my priorities.
I no longer hang my sense of identity on my career. I have handed in my notice and I don’t regret it. Money is important but it is not life. I look forward to selling our home and finding somewhere smaller, cosier and most importantly, cheaper. Somewhere we can start a family, create memories and keep fighting. I’d rather spend our money on experiences rather than a new designer handbag (don’t get me wrong, when our financial position improves I’m not saying I’ll never buy another handbag…just less of them!).
Finally, I am glad that this experience has pushed me to share our story. I’ve been extremely honest and open in this blog because I feel like I needed to hear something like this when I was first going through it all. I found blogs but nothing that gave me what I was looking for. So I thought I would put it out there myself. I’m so grateful for all the messages and support that people have offered since and I mean it when I say that both Finn and I could not have gotten to where we are without the support of our family, friends and the kindest of strangers. Please continue to comment or contact me through this site and I hope you continue to read and share our experience with us. Feel free to share if you like the blog 🙂