Tag Archives: Disability

The Intentionality Fallacy in Caring

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. 

So when did I become a caregiver?

lot of hands form the word caregiver

Since I became a social worker in 1986 I have had a keen interest in carers – though back then and in the States we called them informal, unpaid or family caregivers. Here in the UK we use the term carer. I think caregiver and carer are terms that can be confusing as these words are also used for nurses, nurses aids, paid care workers, etc.  One of my doctoral students has started using the words caregiver to mean  informal/family carers and occupational caregivers for all those whose jobs it is to provide care for another person. I really like that distinction and will use that here (thanks Marianne). Anyhow, as I was saying, I’ve always had a keen interest in caregivers and worked hard to support them while I was in practice and as a doctoral student my research focussed on stress and coping in caregivers. One of the things I discovered in my doctoral research was that knowledge was important for coping, but that knowledge could also increase stress. If as a carer you don’t know that much about dementia, for instance, but learn what the disease progression can look like while the person you are caring for is in the early stages, you can get scared out of your wits! By and large knowledge is a good thing and even though stress might increase at first, I find having access to good information when it is needed is a key component of the support carers need. 

Later in my career I was involved in research about how to identify caregivers early. The idea was that we should identify caregivers as early as possible to make sure that they received the supports needed early in the caring trajectory. It was shocking to hear how often caregivers were not identified as a such. Other times they could be ignored or seen as a hinderance to the professionals’ roles. So we wanted to see if we could help professionals recognise earlier when someone was in a caregiving role and offer support. 

Interestingly one of the things we began to hear from this early identification work is that many caregivers reacted negatively to the label of carer or caregiver. They objected because they did not see themselves as caregivers – they were simply a wife, husband, partner, parent, sibling, daughter or son doing what any spouse, parent, child would do. And yet, many of these people who initially objected to being called a carer would at some point begin to identify as such. It’s this transition from being ‘just’ a spouse (or whatever relationship descriptor that is appropriate) to being a caregiver. On a personal level, that is what the rest of this blog post will be about. I’ve recently realised that no longer am I just a husband, but I am also a caregiver, and I’m not exactly sure when that happened.

Certainly as a spouse I have taken on a wide range of caring behaviours and I have altered my life choices in the interest of the relationship. I’ve also nurtured, supported and cared for my husband when he was ill or injured. He has done likewise. This ebb and flow of support is part of any mutually supportive and healthy relationship. Even during periods of intense caring behaviours, it all felt part of ‘normal’ caring…. the kind of thing you do in a relationship. 

There was an event some years back and a deterioration in mental well being that necessitated me taking on significantly more responsibility in our relationship, but even then I didn’t feel like a caregiver. Again, it was just what you did as a spouse in a committed loving relationship.

There was that first chronic illness that began to impact on functioning and a reduction in his working. That made me the primary bread winner and gave me another thing to worry about, but still I didn’t think of myself as a caregiver, though looking back I was increasing my caring. 

Then there was the 2nd chronic illness that came with pain and fatigue…but being a caregiver never crossed my mind…despite increasing worry and providing extra support.

There was the realisation that my husband was ageing and no longer middle-aged and signs of declining mobility and functioning were beginning to emerge more. I was doing more of the lifting, jar opening, heavy chores…but still I wasn’t a caregiver.

Then I noticed I was getting irritated, grumpy and short over little things like why few (or no) chores were done while I was at work, or mistakes were made, or I was having to clean up dribbles off the toilet seat everyday, or I had to repeat myself for the 12th time because he still hadn’t put in his hearing aids yet, or that I was making more and more choices to accommodate his increasing needs. I found myself getting a bit more angry/irritated about such things.

And then I thought….damn I recognise all of this. I am a caregiver. When did this happen? I have no idea when that happened, but I woke up one morning and it dawned on me. I knew it did not happen over night, but I couldn’t put a finger on when it happened. Somewhere along the line I became more than just a loving, caring and supportive spouse – I became a spouse who was a caregiver. That realisation made such a difference to me as so much of the resentment, irritation, blame I had been feeling for a while just kind of drained away. Suddenly it all made sense. 

And then I had to laugh at myself a wee bit. As I wrote earlier, since 1986 I’ve either been supporting caregivers in practice, researching caregiver’s issues, or teaching about caregivers and how to involve them in health and social care…..but despite being an expert in the field – I didn’t recognise what was happening to me and my relationship. 

Having knowledge really does help. Now that I know I am a caregiver, things are much easier for me emotionally. Sure I still get frustrated, but I know that I am consciously choosing to do this. I no longer am accidently falling into being a caregiver. That strangely gives me a sense of control. You would think after all that research I would have figured it out for myself quite a while ago!


Thank you Miss Mary – What do MG & IDS know?

Note: This blog post was initially made back in 2013. In the relaunch of my blog I decided to keep this on as it is one of my favourite pieces of writing.


I made good ole Suthin Biscuits this morning for breakfast. I haven’t eaten any for years, and it has been even longer since I made any. For all you folks not from the Deep South (and I’m not talking about SE England), Suthin is how to properly say Southern. Biscuits from that fantastic part of the world are not sweet twice baked confections. Rather, they are savoury, fluffy, light and can be served with breakfast, lunch or dinner. They are a truly gorgeous, simple and versatile foodstuff. If Moses had been lost in the pine forest in my home state of Georgia for all those years, I’m sure biscuits would have rained down instead of manna.

I’m not sure what put the notion of biscuits in my head, but as I thought of making them I was transported back to the late 1980s when I was running day programmes for mentally ill older people based on the psychosocial clubhouse model. This is where Miss Mary taught me to make biscuits. I spent this morning thinking back about this client (that’s the term we used back then instead of service user). Miss Mary was the child of slaves and lived through all the Jim Crow laws. Her entire life was marked by extreme racism, sexism and oppressive poverty. She worked at one of the few jobs available to her – as a domestic in someone’s home: low pay, no benefits and no taxes. As an older person she developed a chronic mental illness and was unable to work to support herself. Miss Mary became dependent on the state that had sanctioned oppressive systems that caused her dependency.

Recently Michael Gove attacked social work education again and suggested that university lecturers are teaching idealistic students to blame society rather than teaching them to make people take responsibility for their own actions. Gove’s comments rubbish C. Wright Mills’ concept of private troubles and public issues and the rather large evidence base regarding the negative impact of social inequalities on the lives of individuals. I thought of Gove’s comments while making the biscuits this morning and wondered what Gove would think of the woman who taught me to make them. Would it be wrong to consider that the very difficulties she was experiencing as an older ‘negro’ woman were perhaps caused by the society in which she lived? Would it be wrong to teach students to help Mary while also working to bring about social change?

I also thought of Mary again when reading the article in the Observer this morning about Iain Duncan Smith’s latest cuts . I also thought of the thousands of disabled people I have worked with over my career, who like Mary required support from the state. Many of the disabled people I have worked with have faced a lifetime of oppression, harsh social systems and dehumanising treatment. The messages coming from IDS continue to add to the dehumanising experiences of disabled people. These messages are often couched in terms of savings through individualism, privatisation, and the evils of public services. The messages I hear from the Westminster government suggest that people who are poor, disabled, ill, old and fragile, unemployed, experiencing difficulties in living or facing stressful life conditions are responsible for their own lot in life and therefore need to pull themselves up by their own bootstraps. People who fall into these categories are a drain on society and have little value – people like Mary.

And yet, here I am nearly 30 years later still thinking about and reflecting on what Mary taught me. This women who was a daughter of slaves, poor, ill, disabled, had no economic ‘value’ and was a total drain on society. Yet, she taught me to bake biscuits despite being psychotic, delusional and demented. More importantly she also taught me how to be a better social worker. That second lesson I took with me into all the work I have done since. So in many ways Mary has influenced and touched thousands of people because of what she taught me…..and the biscuits are pretty darn good too!

I think the coalition knows the cost of many things, but the value of little.