The research I did for my PhD was on stress and coping for family caregivers of people with dementia. I was particularly interested in the appraisal process and how that impacted burden. Stress and coping models suggest that events may not be stressful in and of themselves. How people think about an event (appraise it) can greatly influence if they experience something as stressful or not. Two different people may experience the exact same stressor and one person has a meltdown and the other simply takes it in stride. Though this is an oversimplification it does have some truth to it. How we think about an event can influence how we experience an event, and this can impact our behaviour. Albert Ellis was a psychologist who developed a type of cognitive behavioural therapy built on this idea. He wanted to help people overcome irrational beliefs and manage their emotions and behaviours. His ABC model helped people explore their irrational beliefs and make changes. The A was Antecedent (or activating event), B stands for Beliefs, and C stands for the Consequences of that belief (or emotional reaction). If one could understand their ABC process, they could break the irrational chain. The stress and coping models and Ellis’ ABC model come from very different places, but both land on the idea that how we think about an event or what our belief is about that event can increase our stress or negatively impact on our emotional wellbeing.
My research suggested that if a caregiver of someone with dementia was afraid that they were going to get dementia too, then the symptoms that came with cognitive decline were more stressful. Carers were more likely to think “this is what is going to happen to me too,” and they experienced more stress. An example from my years of supporting carers also demonstrates this point. Some carers would think that the incontinence of the person they were caring for was intentional. They would say things like John is just wetting the bed to annoy me. Or Margaret waits to defecate until after I change her on purpose. Carers would get so angry at their loved ones, or feel hurt or betrayed because of the belief that the behaviour was intentional. I had countless conversations with a range of carers describing the nature of dementia (or whatever other condition was responsible) and how these behaviours were symptoms of the disease and not intentional acts. When carers were able to get their heads around this, their stress levels would decrease, and it made it easier not to get angry or short with the person they were caring for. Sure, it was still a royal pain having to change the bedding (again) or to clean someone up (again) who was incontinent of bowel, but not feeling angry or hurt at the ill person for doing something unintentional lessened the emotional burden. Being able to reframe the behaviour as part of the disease rather than a personal attack was important.
I really understand all of this, and yet, when it is my own life, I somehow forget all of this. Though my husband does not have dementia, one of the conditions he has requires the use of a medication during a flare up that significantly impacts cognition. It takes longer for information to get into the brain, and longer for the brain to process, and longer still for a response to occur. The condition itself during a flare up can also really add to this deterioration. Age related hearing loss doesn’t help (especially if he ‘purposefully’ doesn’t wear his hearing aids), the cognitive processing is synergistically impacted.
Despite having some expertise in carers issues and also really understanding the condition and medication side effects, I found myself getting so frustrated, snappish, short, unforgiving and blaming. I ascribed all sorts of intentionality and became angry and resentful. I even heard my mother’s voice in my head saying, ‘after all I’ve done for you, you treat me this way…’ When this mental story is playing in my head, the caring feels like a burden rather the loving, supportive relational activity it really is.
Luckily now I do recognise this pattern, but sometimes I recognise it too late and say or do something I regret and feel guilty about. It helps to acknowledge the intentionality fallacy and to apologise for my snapping or my less than charitable behaviour or reactions – when I notice what I’m doing. My morning meditation practice also helps keep me centred and lessens the frequency of my stinking thinking. My regular exercise also helps me keep perspective.
One of the themes that is emerging across my blog is that knowing something doesn’t mean that you get to skip the experience. I wish that all my knowledge about carers meant I could care for my husband and be a long-distance carer for my mother without making any mistakes or by not having to experience some of the downsides. In my hubris I thought maybe I could escape all of that…but once again I get to learn a little humility and that I do have clay feet too. Strangely there is something reassuring about that.