Carers need time for hobbies and a social life
By Sue Jackson
It took a casual conversation with my friend’s Mum about what I’m up to these days, to make me realise that I’m no longer a wife, but a carer and that my once interesting life rich with travel, hobbies, and interests, has shrunk down to doing my job, housework and running around after my husband. I felt ashamed and close to tears having to admit that all that remains is my love of books because I can manage to fit a bit of reading in round everything else. That conversation helped me to realise that the anger and resentment I’d been struggling with are not because I’m a bad person, but because I’m no longer able to live my own life. I’ve been reduced to supporting someone else to live their life instead.
For nearly six years I’ve been a carer for my husband who had a brain injury followed by a stroke which has left him with some mild physical impairments and quite a few cognitive problems. When people think of caring, they often seem to focus on the physical support that someone needs, but living with someone who needs support for their cognitive function is challenging. It’s a 24/7/365 day a year role. If I’m with him, the chances are he’ll need me to do something for him. There’s no telling what it might be: it could be something he’s forgotten, something he can’t find, something he wants to use but he can’t remember how it works. It can be relentless and at times I feel like I’m a walking/talking Alexa. It doesn’t help that his cognitive function isn’t stable; it can dip because he’s tired, because he’s dehydrated, because he’s stressed, because he’s feeling overwhelmed, the list goes on.
Caring is tough; the emphasis on patient-centred care means my husband is convinced that everything is always about him. As far as the healthcare professionals are concerned, his needs are always paramount. No healthcare professional involved in his care has ever asked me how I am, how I’m coping, or if I need any help. They just tell me what needs doing and assume (without ever asking if it’s possible) that I’ll do it. Finding time for myself is very difficult. I’m self-employed and I work from home, so a short commute (yay), but if my husband’s having a bad day, he can interrupt me several times an hour. There are some days when something that should have taken 10-minutes has taken twice that — repeat that for all the jobs I’ve got to do (whether for work or the house), and I can end up working very long days. I often finish the day with my head in a whirl, worried that I’ve done something wrong.
Work/life balance is an utterly meaningless when you’re a carer living with the person you’re caring for. Healthcare professionals expect me to support my husband to engage in meaningful activities. And I totally agree that he needs to do those things, but what about my need for such things? I think the attitude of the healthcare professionals can be summed up by the psychiatrist who said that as long as my husband is happy, nothing else matters. Hmmm. Right.
As a carer, healthcare professionals will hold me to account if my husband’s care isn’t up to scratch and that includes his ability to pursue his hobbies and interests. If he complains that he’s not been able to do something, someone will have a go at me, but they’ll never ask my why it hasn’t happened. I could have been working, I could have been ill, we could have done it, and he could have forgotten. Person-centred care seems to mean that my husband’s account of what’s happening is always taken as gospel, and I’m always treated as a nuisance and a workshy liar.
Does it matter that reading is my only hobby? It’s educational and entertaining. It can cheer me up and give me things to ponder outside myself and our situation. I used to do handcrafts, but I need to be able to have time and to concentrate to do them, whereas reading can accommodate a few interruptions. I’ve loved books ever since I learned to read. I occasionally think about what it must be like to live in a world where there are no books and where if you’re female you’re not allowed to be educated, and I find it frankly terrifying. I’m not sure who I’d be, or how I’d be in the world if I couldn’t connect with other minds through reading. I appreciate how fortunate I am that I can see it as a meaningful activity, and it fits well with my health conditions. It can also be done on the cheap, and I can connect with other book lovers remotely.
The reality is that getting my old life back is just not possible as things stand. I’d need to be a whole lot richer to be able to buy the kind of support that would free up my time. That we, as a rich nation, cannot afford to provide proper care for our sick and elderly without sacrificing the lives of their families is shocking. What’s even more shocking is that as a society we don’t complain about it more. The situation I find myself in could happen to anyone. How many of you reading this would be satisfied with some books and the occasional catch up with a friend over coffee as your only forms of respite and relaxation?