Tag Archives: Caregiving

The Intentionality Fallacy in Caring

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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. 

Liebe und Arbeit – To Love and To Work. Retirement Reflections

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According to Elms (2001), Sigmond Freud never said that love and work are the cornerstones of what makes us human or that the ability to love and work is the hallmark of a healthy life. However, the idea that to love and to work were key to mental health or normality were not foreign to Freud and could be seen to be the point of psychoanalysis. The idea has moved way beyond psychoanalytical thinking and permeates much psychological thinking, popular culture, and self-help movements. Even the early social model of disability movement placed great emphasis on work as a core concept. There is undoubtedly some truth to these ideas. However, there are critiques of the idea that work makes us human and linking humanness or worthiness to work (productivity) reeks of ableist and capitalistic ideologies. We are more than what we do. I know many people who do not currently work and some who have never worked who are very human, have meaning and purpose and have contributed to my growth and development. Still, there is something important about the place of love and work in psychological health, and I have thought a lot about the apocryphal saying of Freud since I retired one month ago yesterday.

I know for myself that I need to feel a sense of productivity, getting things done, making a contribution to others and society. Every job I had as part of my social work and academic career was an embodiment of that need. As the comments people made at my virtual leaving gathering evidenced for me, I did make a difference and contributed to the development of others. In my own way I have helped make the world a little bit better. But now that I am no longer working, what happens to that need to feel productive, to contribute, to get things done?

On a very micro level getting things done can include activities like those that took up yesterday: completing a long list of household chores, baking some bread, doing some needed shopping, cooking a healthy dinner, exercising and meditating. I hate those days when I footer about and get nothing done or accomplished, and yesterday was definitely NOT one of those days. I crossed off most of the items on my to do list and that kind of productivity feels good. However, that type of productivity will not sustain me over time. It’s not enough.  

A lot of the chores I did yesterday also fall into the “to love” category as they were things I need/want to do in my role as a caregiver. Caregiving considerations did play an important part in my deliberations to retire early, so my balance of to love and to work have shifted. But as important as the caring and the loving are, being focused on only that ‘side’ of Freud’s apocryphal love and work equation would be bad for my mental health.

The initial shape to my retirement life I’m creating does support the sense of accomplishment I need to feel each day on the micro level. I’m still finding my feet regarding the larger sense of feeling productive/contributing to society.  So far in my 1st month of retirement I have engaged in doctoral supervision, blogging, reviewing manuscripts for journals, beginning reading for an article I am writing, and beginning to do a small piece of work for Irish Social Work professional and regulatory body. I’m also exploring doing a very small amount of volunteering with an LGBT+ organisation. Time will tell if these activities help me to feel productive and to feel like I’m contributing to the greater good. I also wonder if my need to feel productive will wax and wane as I continue this journey into retirement. I have been reflecting on my sense of doing versus my sense of being, so who knows. But I am pretty certain I will always want to find a way to contribute to my community and my society. Just what that shape will be is anyone’s guess at the moment. For the time being, I am content to continue exploring and see what happens next. 

Elms, A. C (2001). Apocryphal Freud: Sigmund Freud’s most famous “quotations” and their actual sources. In Annual of Psychoanalysis, XXIX, pp 83-104. Hillsdale, NJ: Analytic Press. 

Reflections on Retirement

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As I have just retired, I thought I would use my blog to share and reflect on my transition. I doubt there will be any earth-shattering discoveries or anything particularly new about my experience, but sometimes reading someone else’s experience can be helpful. I am sure that my reflections will be helpful to me. I tend to think and figure things out as I write. I am certain my brain is really in my fingers. 

One of the other things I am sure will emerge in this journey is that my experience will likely fit into the research or theoretical understanding of retirement and early old age transitions. One of the things that frustrates me is that I am not special or unique. As much as I want to be different or want to not have to experience things because I ‘know about such things’ – I can’t seem to escape being human like everyone else! For example, years ago I was doing a talk/workshop in a geriatric hospital where I was working to a group of caregivers whose spouses were currently in the psychiatry or dementia wards. My partner at the time had bi-polar illness. As I was giving the workshop about self-care all I could do was think…I should be sitting in the seats with them! Just because I knew about the stresses and strains of caring, didn’t mean I could escape all the stresses and strains. Another example, I have reflected on my life at regular 10 -15 year intervals and built new structures to prepare for the next phase of life….just like Daniel Levinson wrote about in his normative research on the Seasons of a Man’s Life. Because I’ve spent my career looking at ageing and life transitions, I think I should be exempt from having to experience the uncomfortable parts and just get to the good stuff. Sounds ridiculous, doesn’t it? Well that’s what goes on inside this brain of mine. I get to learn the lesson of humility on a regular basis.

I’ll make regular posts about my transition, but I’ll make this first blog post about the decision to retire. It’s a bit historical now, but it will set the scene for future retirement posts. 

My Decision Making Process

My husband and I have been together for just over 20 years and he is 8 years older than me. I always planned on retiring a bit early so we could have good healthy years together in retirement. Prior to this relationship I had always thought I would be one of those academics that was found dead in their office at 85 years of age. But then, before this marriage, I was married to my job. One of my pensions allowed for retirement at 59½ without penalty so I knew that was the earliest I could retire – never thinking I would retire that early. But knowing that date set an early financial parameter.

Two years ago (just before the pandemic) we took a 3-week holiday over Christmas and New Year and booked a cottage on the Kyle of Lochalsh. I hadn’t had such a long period of down time in 20 years. I used this time as a ‘taster’ for retirement. Could we stand to be in the same place all by ourselves for this period of time? What would it be like to have a long stretch of unstructured time? Would I get bored? I also used this time to start some serious retirement planning. I’d done a lot of reading and some financial planning previously, but this was now done in earnest and with the potential reality on the 4-5 year horizon, rather than something abstract. This three-week period was really useful and a couple of things emerged. The 1st was that we really did like each other enough to survive being cooped up in a cabin all by ourselves for 3 weeks (The 1st lockdown confirmed this even more). The 2nd was that I was okay with unstructured time. I wouldn’t want to do it indefinitely so I would need to develop a structure and pattern when I retired (duh…that’s that all the research says).  Finally, I outlined what I needed to do to get ready to retire and get a firm plan. This included some serious financial planning with our financial advisor and doing a proper retirement planning course. At this point two years ago, I was still thinking of a retirement date 4-5 years away, but knew I wanted to get the planning started now and done soon. I put those wheels in motion. Then the pandemic hit. 

Despite the pandemic I was still able to have a planning session with my financial adviser (virtually of course) and also enrolled in a great online retirement planning course that covered every aspect of retirement. It was well worth the money. Through both of these processes I discovered I really could retire at 59½ if I wanted to. I still loved my job and was getting great intrinsic reward from it. The pandemic made things a bit more stressful, but I’ve always thrived in a crisis (one of the benefits of growing up in a dysfunctional family). Being a good leader and helping my school and staff survive and thrive themselves while also providing excellent education despite the pandemic was rewarding, exciting, but also VERY exhausting. 

Though I was still thinking of retirement being 4-5 years away, we decided to start making changes to prepare for retirement.  Again, some of the research talks about the importance of planning and getting structures in place prior to a transition. I wasn’t thinking about the research, but I can be so normative. Anyhow, we loved Dundee and the Tayside region. It is one of the most beautiful places on the planet and the City of Dundee is a small vibrant city in the midst of a remarkable transformation. It’s simply an amazing place. Yet, it wasn’t quite right for us in retirement. We decided it would be better for us to retire to Glasgow for a range of personal reasons – including being close to family and friends who could help out with caregiving and being part of a larger gay community. We decided to move before retirement so we could establish a good social network and be part of the community. And that’s what we did. We downsized further and bought a small flat in the City Centre, close to all amenities and travel links. (Sounds like a retirement planning cliche)

During this time there had also been a series of leadership changes at the University. Previously I had been very influential within the University and was making a very positive contribution both to my School and the wider University. With the changes in leadership I began to feel pushed aside. Having been central to many important developments and having a lot of influence over a number of years, it was painful and frustrating. I know that universities across the world do these sorts of things from time to time – in with the new and out with the old – and it is not personal. But it is still sore and feels personal at times. There was also a period of considerable moral distress when processes were occurring that were wrong (in my opinion) and I was unable to influence the processes to be fit for the light of day. It also became apparent to me that my face did not fit for future leadership roles. There was great sadness about this. I also knew myself well enough that if I stuck around in a lesser role, I would turn into one of those people that could be destructive rather than facilitative. In my family of origin, I learned how to be fantastically passive-aggressive. Luckily, I have a very good Superego that keeps that sociopathic ID-driven part of my psyche well controlled. However, occasionally that passive-aggressive side does break through my defences. I worried the temptation to be a snide, snarky grenade thrower would be too great. I didn’t want that to happen and wanted to leave my career with integrity intact. I went back to my financial advisor to discuss moving up the timeline, and there was no real financial reason to delay retirement. 

At this same time, I was approached by two head-hunters for other senior posts in two other universities – I was the ideal candidate for both. Head-hunter’s always butter you up, and it feels nice. At the same time, they also can talk straight about how you sit in the pool of potential candidates.  They were both really keen on me and said both universities were keen on me too. In the end I decided to not go forward for either of these positions, even though it felt fantastic to be wanted by two good institutions when I felt pushed aside by my own. I believe if you go for a senior role, you really need to commit to at least 4-5 years to the job or its unethical to go for it or take it. With my husband’s decreasing health and my increasing need to provide care, I knew I couldn’t realistically commit to that length of time. This brief interlude did help with my discernment process, and I decided to make the decision and actually retire early. 

Once I made that decision a huge weight was lifted, and my stress levels plummeted. Ironically, a new senior appointment was made at my university who quickly began to fix the processes that were so wrong in my opinion. I had a momentary twinge of…did I jump too soon? But quickly realised, no I haven’t jumped too soon. This is the right decision for me and my family. I have had a long discernment process, did a lot of planning, and made changes to support the transition. I feel prepared and eager, and I believe I have built the structures that will support the life I build for the next life stage.  

My next retirement blog entries will chronicle the transition as I go through it. 

So when did I become a caregiver?

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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!

https://carers.org