Context and expertise based on experience

Although the context of this paper is UK-based, many of the themes identified have relevance internationally. Ageing is a global phenomenon, though its trajectory and the response to it is not. I have become ‘an expert by experience’. This term has been adopted in UK social care (Commission for Social Care Inspection, 2009) and social work education (Department of Health, 2002; Preston-Shoot, Reference Preston-Shoot2007) to value the lived expertise of contributors. These include people living with or caring for a person who uses services (Scourfield, Reference Scourfield2010).

McLaughlin (Reference McLaughlin2009) critiques this term by asking what criteria are used to define an ‘expert’ and their ‘experience’, and questions the unequal power position between a social worker (by virtue of their training) and an individual receiving services (McLaughlin, Reference McLaughlin2009). Further criticisms include a lack of diversity of contributors and an over-emphasis on negative experiences (Anghel and Ramon, Reference Anghel and Ramon2009). It has been contested, however, that ‘experience should be prominent in the conceptual base of gerontology’ (Bytheway, Reference Bytheway1996: 613). My ‘expertise by experience’ claims no universality, as I am not an expert on everybody's experience of caring for ageing parents. Ageing is unequal, as class and socio-economic factors, i.e. geography, culture, age, gender, religion and ethnicity, all play parts in how someone ages and indeed upon the care an individual older person receives (Higgs and Gilleard, Reference Higgs and Gilleard2020).

This commentary also draws attention to my social work educator role by examining possible relationships between my professional practices and my personal experiences emanating from my family of origin (Smith, Reference Smith2012). Social workers should not only be concerned with utilising formal knowledge, but also encouraged to examine personal knowledge critically and reflectively (Kwan and Reupert, Reference Kwan and Reupert2019). The self plays a critical role in how to ‘frame an ambiguously troublesome situation [and] impose a narrative structure through which the incoherent features of that situation are named and storied’ (Sellick et al., Reference Sellick, Delaney and Brownlee2002: 494).

Therefore, my own social location also needs to be acknowledged. As females, we are stereotypically credited with being innately caring and may be expected to take on the bulk of the caring tasks (Lewis, Reference Lewis2002). This fortunately was not my experience, with my brother and I sharing the emotional support, some personal care and all the practical, housing, legal and financial tasks/decisions for our parents. This continues on a daily basis. As a daughter and a professional I do, however, have competing demands on my time. For example, I found it increasingly difficult to accompany my parents on their many routine hospital visits. Geographic distance and time shortage were and are constant pressures on my caring role. Moreover, in analysing the caring relationships with my parents, I also need to consider that my personal needs may have ‘leaked out’ in unforeseen ways (Kwan and Reupert, Reference Kwan and Reupert2019), via the phenomenon known as ‘transference’ (Smith, Reference Smith2012; Butler, Reference Butler, Mantell and Scragg2018).

By using critical reflection, the power relations, interactions and the decisions made between me, my brother and my parents are explored (Hakaka and Holmes, Reference Hakaka and Holmes2017). Reflections were manifested through writing in a journal (Hickson, Reference Hickson2011). Boyd and Fales (as cited in Lam et al., Reference Lam, Wong and Leung2007) distinguish stages of reflective learning, which includes inner discomfort. At the beginning of my journey in caring for my parents, I experienced inner discomfort at the nature of the personal experiences I brought to my social work educator role. This included contemplating what others might think of these experiences and how I would integrate these positively with benefits to my own learning and practice (Smith, Reference Smith2012).

Tensions and contradictions exist between critical reflection and the cultures of objectivity and self-disclosure. The personal and the emotional in learning has been explored by Fook and Askeland (Reference Fook and Askeland2007), using their model of Critical Reflection. Critical Reflection can involve personal disclosure and acknowledging emotion, which may compete with the social work educator experience of being rational and objective (Fook and Askeland, Reference Fook and Askeland2007). I needed to be mindful and utilise critical social work to examine inequality and oppression, and be aware that notwithstanding its intentions to provide help to older people, social work practice itself might be oppressive and socially controlling (Healy, Reference Healy2012; Smith, Reference Smith2012).

The product of my critical reflective analysis of the impact of my personal life experiences is applied to seven cultural notions, or myths (Dixon and Gregory, Reference Dixon and Gregory1987; Sidell, Reference Sidell1995). It was argued that these myths exist with some basis in truth and fact (McInnes, Reference McInnes2004). However, they have become exaggerated and generalised, leading to stereotyping which can in turn promote oppressive practice. These stereotypes, or established lay or cultural beliefs, are maintained because there are elements of truth in them, but generally they over-simplify and stigmatise (McInnes, Reference McInnes2004). The following list of myths was utilised as an important safeguard, or check against prejudice, negativity, discrimination, inequality, oppression and misunderstanding of my parents’ lives.

The myth of chronology

The myth of chronology defines older people as a homogeneous group by virtue of their age, despite the diversity and autonomy in their lives. Several key points have emerged which all informal carers and professionals making decisions about those in the fourth age should understand. Arbitrarily designating chronological age to older people is not beneficial, as most people remain independent irrespective of their age, and enjoy good health and quality of life (Neuburger, Reference Neuburger, Cann and Dean2009). Furthermore, no matter what chronological age a person is, it is still worth treating health problems (Mitchell, cited in Davidson et al., Reference Davidson, Goodwin and Rossall2013).

My father was, and my mother still is, a unique individual. Both were fiercely independent, and my father did everything in his power to live longer than his parents, who both died at the age of 67. Taking self-responsibilty he kept his weight down by watching his diet (‘I eat to live, not live to eat’), not smoking and rarely drinking alcohol. He exercised on a regular basis until a hip replacement in his early eighties curtailed these activities. He was the more sociable of my parents and his social networks and friendships endured until his mid-eighties. However, once his mobility decreased and not fully embracing digital technology, he started to neglect his social networks. On the other hand, my mother has always been a ‘loner’ and seems quite happy with little human interaction. She continues to make few direct demands on anyone caring for her.

In their mid-eighties both my parents became exclusively reliant on their children as they lacked other significant relationships or social networks, and this was the time that my caring responsibilities increased. My father became very demanding as he did not have his friends to turn to and our relationship changed. Viewing having friends as important for all individuals, I encouraged our parents to maintain friendships and despite their lack of energy, or inclination to be proactive in this respect, it would be oversimplistic to attribute this simply to the ageing process. From a selfish point of view as an informal family carer, increased social interaction by my parents would have given me some respite, knowing that they had/have other people to talk to and draw on for support. Overall, the differences between my father and mother in their personalities, relationships and practices whilst advancing in years challenges the idea that all older people are similar by virtue of their age.

The myth of inflexible personality

This suggests that older peoples’ personalities change with age, in that they become more inflexible, intolerant and conservative. However, individuals often want to retain choice and control of their decision making. Moreover, they desire clear guidance and support from professionals and especially from family, who are often the first port of call for both accessing support and discussing decisions (Blomgren et al., Reference Blomgren, Breeze, Koskinen and Martikainen2012; Redding et al., Reference Redding, Gentry, Shand and Stuart2014).

My father up until his death tried to remain flexible. In his early eighties he adopted two dogs to help a friend out, ignoring the long-term consequences of his actions. My response was to become intolerant and inflexible, labelling my father as selfish, as I would have to look after the dogs if his health deteriorated. With hindsight I should have been more encouraging, since the dogs gave my father unconditional love and the support and company he was missing in later life from friends. This contradicts the often unchallenged assumption that there is no substitute for human touch (Jenkins, Reference Jenkins2017).

In the last year of my father's life my parents reluctantly agreed to move from their large detached home, in which they had resided for 50 years, into a small rented bungalow. They coped well with the stress of this huge life transition and the introduction of formal carers and telecare to enable them to reside at home. I was the one bereft for the loss of my childhood home. This links with Schillmeier and Domenech's (Reference Schillmeier and Domenech2009) reflections on ‘home’ and transitions, and on the processes of emotions and introduction of technologies to concepts of dwelling and space, for both older people and their families/carers.

Since my father was terrified of dying, unfortunately he ignored this prospect and did not take up opportunities to put his affairs in order; neither of my parents had wills, funeral plans or made any financial arrangements. When my father was in hospital before he died, a nurse described this as having a ‘Blitz mentality’, i.e. just get on with life and hope the issues go away. This was most challenging to my brother and I, and in the end, we probably limited their choice and control over decision making, by ‘swooping in’ and taking control. After numerous accidents in his car, as a result of which I expressed the concern that he may injure a child, my father declared ‘I don't care if I knock over a child, I need my independence!’ This uncharacteristic declaration was more than likely a result of his vascular dementia. However, with the luxury of time and the benefit of hindsight, I should have discussed with him his perceived loss of independence in more detail before I effectively banned him from driving.

The myth of misery

This asserts that because people are older, they are unhappy. Those in the fourth age may feel vulnerable and there is a perception that any criticism of a service will result in its withdrawal. Consequently, they may appear as being unhappy by default (Konno et al., Reference Konno, Kang and Makimoto2012). My father tried to enjoy his life until the end and I suspect the thought of not being as mobile, or as physically able after being hospitalised, precipitated his demise and eventual death. While my father was in hospital for the last time, my mother remained optimistic and positive with my father about his health up until the end. She also seemed to become more independent and caught buses and taxis by herself, for the first time in several years. She did not dwell on the negatives and got on with living.

It was myself and my brother who were miserable and often felt like we were living in ‘purgatory’, especially during the last month of our father's life. It was a constant battle to keep him in hospital where he was safe; I spent considerable time advocating on his behalf with the medical personnel who wanted to discharge him, as they needed his bed. Our lack of control was challenging, in that we could not know what the future would hold, and we assumed and anticipated the worst. We were the ones experiencing misery. Putting this into context, life beyond our parents still carried on, with all the stresses and pressures of day-to-day family living, professional lives, our own health issues, and our own social and emotional needs. During this period, having friends sit and listen was highly valued, and this is something that my parents were not fortunate enough to experience.

Informal carers for ageing parents are often at breaking point. The demands placed on them are immense and navigating the system and making life-changing decisions is often extremely challenging. As a society we need to establish what is reasonable for families to do and the help they can access to support them as carers. There is currently little appreciation of how much informal care many families are already providing for their ageing relatives. Asking families to do more will not fix the inherent problems in our health and social care systems. More support needs to be given to those who are carrying enormous amounts of responsibility for ageing relatives (Grünwald et al., Reference Grünwald, Damman and Henkensin press) so that stress reduces, positive caring can occur and relationships can remain intact (Tolkacheva et al., Reference Tolkacheva, Van Groenou, De Boer and Van Tilburg2011).

The myth of rejection and isolation

There are arguments that British society is ageist, uncaring towards and rejects its older people. On the other hand, there may be an expectation that health and social care services should be cost-free. The financial costs attached to these services can manifest in older people feeling rejected, isolated and ultimately stigmatised. This may consequently lead to an unwillingness on the part of the older person to accept those services (Konno et al., Reference Konno, Kang and Makimoto2012). Moreover, feelings of social isolation can occur even in the presence of a large number of other people (i.e. in a nursing home), and if we are to address those feelings we need to recognise the importance of social support via relationships with health and care professionals, despite the challenge in terms of the available time that professionals have (Redding et al., Reference Redding, Gentry, Shand and Stuart2014).

For many people, social interaction needs to continue, or indeed, increase when we enter the fourth age. However, others like my mother may value solitude and choose to only interact with and have a small number of contacts (Redding et al., Reference Redding, Gentry, Shand and Stuart2014). The fourth age is also a time of bereavement and loss, which may reduce older people's support networks; therefore, older people may need to be encouraged and supported to participate and engage (Mitchell, cited in Davidson et al., Reference Davidson, Goodwin and Rossall2013). Social relationships are as important as a healthy diet and exercise for mental and physical health and successful ageing (Bowling, cited in Davidson et al., Reference Davidson, Goodwin and Rossall2013; Pearce et al., Reference Pearce, Wlodarski, Machin and Dunbar2019).

My parents have not been isolated during the last five years and have had good relationships with their family and eventually their formal carers. My mother's choice not to have a wide social circle may have helped her since my father's death, in that she seems happy in her own company. She is not isolated in the sense that she has formal carers visiting her four times a day and she enjoys a chat with them all. She shares the experience of many older people in that her carers are numerous, but she has a core team of about eight females so there is some continuity of care. We are all individuals with different personalities: unlike my mother who enjoys solitude, I have consciously made friends throughout my life and nurture and sustain these relationships, and I look forward to maintaining these as I age.

The myth of dependence and unproductivity

This myth perpetuates the belief that because older people are not usually engaged in paid employment, they are not productive members of our society and they are therefore dependent upon others. It could be counter-argued that older people, by using the formal services provided by professional carers, instead of relying upon family and friends, are exerting their own independence and choice. Older people may not choose to give up their independence and still want to be involved in decisions about their lives (Davidson et al., Reference Davidson, Goodwin and Rossall2013). Essentially, it is the unmet needs associated with physical or mental ill health, and not necessarily age, which lead to a loss of independence and needing care from others.

There is a constant tension between independence and safety which is often ‘problem focused’ rather than looking at those in the fourth age as individuals (Redding et al., Reference Redding, Gentry, Shand and Stuart2014). They are often able to do activities that are important to them, to help maintain a sense of pride, achievement and identity, such as doing the washing-up, and may be disappointed when these everyday tasks are taken over by carers (Redding et al., Reference Redding, Gentry, Shand and Stuart2014). There is a need not only to be cared for but cared about when major decisions are made; e.g. trusting someone with Lasting Power of Attorney over decisions relating to one's care and finances (Lloyd, cited in Davidson et al., Reference Davidson, Goodwin and Rossall2013). Rather than being unproductive, Redding et al. (Reference Redding, Gentry, Shand and Stuart2014) found that most participants in their research referenced the future, putting plans in place for supporting family in their absence, e.g. with funeral arrangements.

My parents’ different personalities resulted in my father wanting to experience going out every day and this had a therapeutic effect for him. However, this was not without risks and it compromised our relationship as a result. Van Steenwinkel et al. (Reference Van Steenwinkel, de Casterlé and Heylighen2017) highlight the importance of freedom of movement and the balance between experiencing freedom and being bound to social (imposed by their children in my parents’ case) and physical (their new home) frameworks. They also challenge the idea of family-like group living (Van Steenwinkel et al., Reference Van Steenwinkel, de Casterlé and Heylighen2017) and indeed my parents’ desires were very different, with my mother wanting to stay at home and my father insisting on her accompanying him every day. Every Monday morning would result in a telephone call to me, with my father irate that my mother would not go out with him for the day. Because of my determination to reduce risks (Chalfont, Reference Chalfont2013), I felt the need to constrain my father in his home and reduce his movements, and often any person-centred care ground to a halt.

With hindsight I should have developed more ‘risk-assumed’ activities involving the whole family (Chalfont, Reference Chalfont2013). Furthermore, I should have viewed my father's wanderlust and desire to enjoy his freedom as focused and therapeutic, and ultimately improving his wellbeing (Wigg, Reference Wigg2010). I should have encouraged him to go out safely by incorporating surveillance technologies to monitor his whereabouts, thus increasing his experiences/opportunities and his quality of life and health. This would have challenged both the ‘medicalisation’ of this behaviour, as well as my tendency to underline its riskiness (Wigg, Reference Wigg2010).

With regards to dependence, we all have our own unique experiences, and I am aware that my parents were quite privileged as seniors, in that they had good jobs and subsequent pensions and could afford formal private care. I did involve a social worker initially to ask for help and support with my parents, but my mother's previous management role in social services made it uncomfortable for her to have social work involvement. Because of this, she became ‘resistant to care’ and cancelled services without my knowledge. When their house became neglected, and my parents started to miss meals and could no longer deal with correspondence, finances or any decisions, my brother and I felt forced to invoke a Lasting Power of Attorney and employ formal carers on their behalf.

Without the help of social services and not knowing where to access good reliable services, this involved endless telephone calls and there were several setbacks before a reliable service was found. With hindsight, I was not attuned to the adaption that my parents would have to make when formal carers came into their home. I was too engrossed with my own worries regarding their safety and probably ‘infantilised’ them (Hockey and James, Reference Hockey and James1993) to protect them. They were, in fact, just told what was happening, with little collaboration or participation involved. Their safety became the main issue at the expense of their choice, which retrospectively could be viewed as oppressive. In circumstances like these there is always the potential for intra-family conflict with decision making. I am aware of how fortunate I was in that I did not have to make any decisions alone and relieved that my brother and I have never argued about any aspect of caring for our parents. My experiences support findings by Romoren (Reference Romoren2003) in that the informal care given to older parents by sons is often underestimated.

The myth of physical ill health

This perpetuates the view that old age automatically involves deterioration in physical health and that illness is part of the ageing process. It is recognised that even frail people in their fourth age need ‘to get up and moving’ (Davidson et al., Reference Davidson, Goodwin and Rossall2013: 5), as mobility or functionality once lost is hard to recover. Whilst older people recognise the constraints that their health conditions sometimes place on their lives, they often focus on living and are not preoccupied with their health (Redding et al., Reference Redding, Gentry, Shand and Stuart2014). Many older people described as ‘frail’ dislike the term and want to be supported to be as independent as possible. Subsequently, services investing in ‘frailty’ strategies risk being rejected by the very people they are seeking to support (Redding et al., Reference Redding, Gentry, Shand and Stuart2014). Furthermore, there is often a ‘risk-averse’ attitude among both health and social care professionals and individual's families, which often results in older people being discouraged from participating in activities of daily living (Redding et al., Reference Redding, Gentry, Shand and Stuart2014).

Unfortunately, the last five years saw a decline in the health of both of my parents, which involved reduced mobility and increased medication. Antecedent to my father's death, both parents experienced a ‘revolving door’ into hospital, where they were ‘patched up’ and returned home. These hospital admissions often coincided with me just about to go on a work trip overseas. After one such episode, a respite residential care admission was sought for both of my parents, although on reflection this was as much about respite for me as it was for my parents. There are various ‘landscapes of care’ (Milligan and Wiles, Reference Milligan and Wiles2010: 736) and ‘care at a distance’ is difficult for all involved. However, during the times I may have been physically distant, I was still closely involved in organising care for my parents, with the added complexities of time differences affecting telephone conversations (Milligan and Wiles, Reference Milligan and Wiles2010).

The dual stresses of caring for my parents and working overseas may have impacted my own health issues and I was admitted to hospital during this time, and my father asked, ‘what will we do if anything happens to you?’ My own health needs were ignored until the resulting hospital admission, as I did not have the space to deal with them. The role of carer and my parents’ needs took priority, with me eating in the car after work on my way to visit my parents and forgoing exercise. This corroborates the research by Bauer and Soua-Poza (Reference Bauer and Soua-Poza2015), Kelly and Kenny (Reference Kelly and Kenny2018) and Pinquart and Sörensen (Reference Pinquart and Sörensen2007). It is so apparent that the physical health of informal carers and those being cared for are entwined in far-reaching ways.

The myth of mental deterioration

This suggests that older people deteriorate mentally and become ‘senile’ (Dixon and Gregory, Reference Dixon and Gregory1987), and that the presence of mental health problems presents challenges to communication. Mental health problems are often undiagnosed by health-care professionals, and the stigma surrounding these illnesses often makes people reluctant to seek help (Royal College of Nursing, 2018). However, it is important to note that not all people in the fourth age suffer mental health problems. In addition to physical and mental health, personality may be a factor affecting longevity (Davidson et al., Reference Davidson, Goodwin and Rossall2013).

During the last five years, unfortunately both my parents have suffered some memory loss and my father was diagnosed with vascular dementia. This has caused me some challenges and issues in my role as an informal carer. I have experienced feelings of guilt because there were times when I found it difficult to like being with my father, mainly precipitated by what I regarded as his self-centred and attention-seeking behaviour. However, we have also shared funny times and on both sides a sense of humour (Reilly et al., Reference Reilly, Harding, Morbey, Ahmed, Williamson, Swarbrick, Leroi, Davies, Reeves, Holland, Hann and Keady2020) and positive mental attitude were vital. Overall, despite my absolute commitment to person-centred care, I often became directive when my parents’ safety was potentially compromised.

The Mental Capacity Act sets out a regime which governs the making of decisions for people who lack mental capacity, based on what is in their best interests (HM Government, 2005: section 4). The key aims are empowerment, protection and support, balanced against physical risk, welfare and happiness, and the patient's wishes and values. It has been questioned, however, whether the best interests test is ‘fit for purpose’ for vulnerable older people (Szelepet, Reference Szelepet2018). Indeed, balancing protection and safety with my father's wishes and happiness created a huge challenge; a compromise had to be found between the intellectual and the emotional aspects of his care. As an informal carer it is difficult, if not impossible, to reconcile these stresses and the attendant feelings. Over the last five years, I had mourned the loss of my relationship with my father as I knew him. Therefore, I experienced feelings of relief when my father died, feelings which were ultimately tied up with anticipatory and post-bereavement grief and guilt (Aronson, Reference Aronson1990).