Julie was always the mother, home-maker and the organiser. With 3 teenage children including a son with a developmental disability, she already led a very busy life. Julie was used to looking after her son Ryan, taking him to medical or therapy appointments and getting him to and from school in his wheelchair. That was until her husband, Simon, an adept and hard-working businessman, had a large stroke. After the stroke, Simon had a severe right-sided weakness and an acquired communication difficulty. He was 40 years old.

“The day Simon had the stroke, my world turned upside down. He was always the one who earned the money in the household and paid all the bills. I was always the one who looked after the kids, did the shopping, kept the house in order and made the meals for everyone. I was also the kids taxi service. But now I feel that I have to do everything, absolutely everything! We are so lucky that Simon had illness and disability insurance, but it was about 6 weeks before this started so we had to live on our savings for a while. I don’t know how I would have coped if it hadn’t been for the help and support of family and friends during those dark days”.

Switching roles with stroke – Carer in two senses

Julie, without realising it had extended her role as carer beyond her child to her husband as well. The emotional impact of this role change cannot be underestimated. The main emotional support she used to leaning on was not only gone, but now needed significant support himself. The changing dynamic from equal partner to carer changes the power dynamic in a relationship from emotional, financial, practical and sexual perspectives. This can place a partner like Julie under extreme stress and can, understandably, lead to anxiety and depression. Research indicates that carer stress is a significant burden in general in modern society leading to an increasing burden on mental health services.

Often the systems that are put in place to support the partners of people with disabilities to cope are critical to supporting the person with a stroke with the whole of their rehabilitation process. Overly stressed carers find it very difficult to support the person with a stroke to take achieve their independence. Some partners have more internal resources, experience and skills than others. For Julie, her experiences supporting her disabled son proved highly useful in supporting the rehabilitation of her partner, Simon. She often underestimated her role and found it difficult to see how amazingly resilient she was.  Each carer and each situation is different and the package of support required needs to be carefully considered in an individually sensitive way.

Time poor

Therapists often have expectations that family members will support therapeutic goals for the person with a stroke with daily practice of their goals. However, for Julie, who is so very time poor, unless the goals are embedded in everyday life there would be no chance of her supporting her husband to achieve them. The importance of an effective multidisciplinary team and particularly social work support to engage a range of social care services to enable her to manage her time effectively cannot be underestimated. Formal and informal respite care, to enable Julie to have guilt-free time for herself on occasion was also essential for her longer-term mental health and well-being.

Over time as Simon with the help of Physiotherapy and Occupational Therapy became more physically independent in his self-care and mobility, so the potential burden for Julie had begun to lift. However, despite this often carers can become locked into the safety and security of their coping systems. It can be that they do not see where or when they can step back a little and allow their partner to try to resume activities that their partner once used to do independently. This is most obvious for physical activities but can also be true for communication tasks such as answering the door or the phone, doing the family finances, or doing online ordering of groceries. For Julie, her dawning awareness of where she could encourage communication independence was a revelation.

“I’ve been doing the online banking to pay the bills ever since Simon had his stroke. Only the other day I noticed Simon looking over my shoulder at what I was doing, when I realised he wanted to try and do it himself but had totally lost confidence. I was in a hurry and thought to myself I don’t have time to do this with him now. But instead of just ignoring it, I asked him if he wanted to try to do the banking again, another day, with my support. He jumped at the opportunity. Afterwards I realised that if I supported him to do this for first few times by giving it some extra time, then potentially he could do it independently and this would free me up to do other things. It also would be great for his self-esteem. So, I was very pleased with myself for talking about it the way I did with him”.

A few years later, Julie and Simon were coping well. Simon continued to be motivated to do his rehabilitation and was doing more and more activities independently.

“I used to do the grocery shopping at the local supermarket but now Simon does all of our grocery shopping online. This has saved me about 4 hours a week and I am so pleased that I do not have to go through the checkout anymore with an overflowing shopping trolley! We’ve settled into a routine with it and it works really well .. Simon is now working to get his driver’s licence back and if that is ok then we will get his car adapted so he can get himself to his medical and therapy appointments independently.”

Power dynamic

Their life is moving forward in a smooth, albeit fundamentally different manner with the roles switching again but this time more positively with Simon doing more domestic tasks himself. The power dynamic in the relationship between the couple looks to continue to be on a much more even keel.

For more support and information try out our free stroke recovery speech and language course put together by our Iris Experts Team www.irisspeaks.com/stroke

By Kim Clarke, Speech and Language Therapist MRCSLT, MSPA, MASLTIP.