Bouncing the laundry basket and other coping strategies in lieu of exercise.

by Sue Jackson

Just lately I’ve been giving a lot of thought to how, as a carer I’m supposed to look after myself. When my husband first returned home after his stroke, as his sole carer I was doing well if I managed to find the time for a shower. Six years on, while I’ve nailed showering, I still struggle to find time to exercise. Six years is a long time, but during that period I’ve had to relearn my husband’s character and personality and work out how his various cognitive deficits can be supported and ameliorated so he can have a meaningful life and I’ve been project managing the building work required on our house to make it fit for purpose both now and in the future.

As a sole carer, I have to fit whatever I’m doing round my husband’s care needs, and that often means I’m having to do things at strange times. The brain injury he suffered disrupted his sleep-wake cycle and the subsequent stroke has made that worse. He has trouble sleeping, so if he’s in bed, I feel like I can only do quiet things to give him the best chance of resting. I don’t know when he’s going to get up, so I have no idea when he’s going to need assistance (for instance, yesterday he wanted lunch at 3pm). In addition to which, he’s prone to panicking if he gets up and doesn’t know where I am and can’t easily find me. While leaving a message to say that I’ve popped out for a walk by the bed or in the kitchen can work sometimes, if he’s very stressed, he can’t see the messages and gets himself in a right tizzy.

My health is also something of a problem. I have back problems courtesy of a car crash and a work-place accident. The pain and stiffness vary — some days I’m fine, but other days I move like a geriatric tortoise that’s taken a sleeping-pill. Added to which, I’ve had migraines all my life — some of them are so severe that they bring me to a standstill for several days. If you’ve never had one, be grateful. It’s like someone’s stuck an ice-pick in my head usually through one of my eyes. I get at least one most weeks, but thankfully these days not so many of the very severe ones where I really can’t do anything at all. Where once I would have been able to go to bed to try and sleep it off, these days I’ve got to try and keep going. And no, I don’t have a martyr complex, but I don’t enjoy being woken by my husband because he needs something during the night, and that goes double if he’s woken me when I’ve got a migraine, it somehow makes the pain worse. Through self-experimentation, I’ve found that as long as the pain isn’t too bad, I can use mindfulness techniques keep going with simple things done slowly which has the merit that I don’t fall too far behind with things when I’m not feeling well. I’ve had to accept that my husband’s memory is so poor he can’t remember how I’m feeling, so his disturbing of me isn’t going to stop.

I’m self-employed (because despite Government rhetoric and employment law no other employer is going to give me the flexibility I need), provide care for my husband, do all the cooking, shopping, washing, ironing, cleaning, etc, etc. Hoovering and dusting are not my favourite things — to such an extent I used to have a magnet on the fridge telling people they could look at the dust but please not to write in it. My mother told me it was slutty and to get rid of it, and to make friends with my duster. The fridge magnet had to go when we got the new kitchen because I’ve not got anything to stick it to anymore, but my relationship with the duster needs more work.

Doing tasks you don’t enjoy, and feeling like you’re being forced to do them week in week out while the other person who lives in the house seemingly does nothing but spend time on his hobbies and interests can feel profoundly unfair at times. That’s part of the reason I keep working — I’m very fortunate to be able to enjoy how I earn money even though the constant unpredictable interruptions I’m subjected to can leave me feeling frustrated and angry. I’ve learned I can’t express that in front of my husband; if he sees me getting stressed or distressed by something, then he gets panicky which negatively affects his cognitive functioning.

Over time I’ve discovered that I can reduce the mental ranting about how difficult my life is by making up songs with which to serenade the cat. I’m currently working on ‘The Cat with the Golden Paws’ to the tune of ‘The Man with the Golden Gun’. When it’s finished Garfield won’t enjoy it, but I will and that’s what matters. The need to vent out some of my anger has led to some interesting coping strategies. My husband doesn’t like gardening and will only spend time in the garden if it looks like Garfield and I are doing something interesting, like playing chase round the camelia bushes in the front garden. If I’m out there on my own, I’ve discovered that weeding and ripping the top off dandelions using a considerable amount of force while sustaining a sub-vocal rant is a very effective way of venting out some frustration.

On a similar note, I’ve discovered that if I’m interrupted while doing the laundry, an item of clothing that’s been balled up and launched back into the laundry basket with sufficient force will cause the basket to bounce. The angrier I am, the harder I throw, the further it goes (as long as I get the launch angle right). My record is three bounces. I once had an interesting discussion with an anger management specialist who told me that all expressions of anger should take a positive form. Hmm. For me, living with someone with a brain injury, I think there’s a case to be made for finding ways to vent some out safely. Besides which, watching the laundry basket hop along the landing reminds me of the Luggage from Terry Pratchett’s Discworld series and that takes me to reading. As a distraction it doesn’t come much better for me; books are portals into different worlds and a way of getting to meet a wide range of interesting characters without having to leave home to interact with them. Exercise requires effort and planning and when I’m tired and out of sorts at the end of the day, collapsing on a sofa with a handy book and a snuggly cat just feels right.

Thanks to the state of social care in this country, my life has to revolve around my husband’s care needs. As a sole carer I have to do all of what he requires all of the time. There’s no respite, and no help. But woe betide me if I slip up and get any of it wrong. The authorities that have no interest in helping me, will cheerfully throw the book at me if I fail in any aspect of my duty of care. My husband’s lack of insight into his own condition means he has no idea what it’s like for me living with him. Being on call 24/7, earning the money, having to pretend that I’m OK when things are stressful or difficult, and being responsible for keeping the house and our social life functioning all while living with what the World Health Organisation describes as one of the ten most difficult long term health conditions is challenging. No wonder I struggle to find the time to go for a walk or for any strength training or yoga practise.