Living circumstances and personal health situation of Jan
The health and social care sector contains a diverse range of services. Caring for a family member or friend is equally varied. This chapter begins by examining the purposes of caring practice, not as something cut and dried, but something shaped and defined by the unique life and circumstances of one individual and her family.
Jan is a 63-year-old woman living with her husband, a man 10 years her senior. After two knee-replacement operations, one joint became infected and was replaced by cement. A physiotherapist helped Jan to learn to walk with a stiff knee, though she still finds it difficult to get around. The walking frame helps, as do the adaptations made to her home by the occupational therapist, as Jan values being able to do things for herself. Previously, Jan did the bulk of the housework, but now her husband, who is not a proficient cook, does the best he can. She has a daughter who lives nearby, and a son who lives overseas and phones her frequently.
A wheelchair would help Jan get around, but she resists getting one as ‘she isn’t ready for that yet’. This frustrates her daughter, who plans to turn up with one some day to see how it goes down with her. Jan’s son thinks this would just upset and embarrass their mother. Jan and her husband don’t drive and so she doesn’t get out as often as she would like, but she ‘bumps along’ – enjoying her garden, conversations with visitors or getting to church with lifts from friends. She is also taking a distance-learning course in history, and her daughter types up her assignments.
Last year, Jan was diagnosed with stomach cancer. Upon hearing the news, Jan’s son decided to move back from overseas with his wife and baby son. He enjoys having a doting grandmother nearby to call upon for advice and help with babysitting. While Jan undergoes chemotherapy, her son visits a couple of times a week. He cooks her special meals so that ‘she can build her strength up’, provides treats such as new CDs, and pays for massage – it’s as helpful as pain killers.
Unfortunately, chemotherapy has little impact on the tumours. The doctor explains that they are so extensive that further treatment would not be effective and that she only has months left to live. Jan is very upset and at first does not want to know all the details. Over time, though, she realises that staying at home will be too difficult, especially since her husband is finding it all rather hard. Jan is not very confident talking to the professionals involved in her care, so she would like her son to be around when decisions are made about her next move.
What needs does Jan have and how are they met or not met?
Jan, like any human being, has a complex range of needs. She needs cures – a knee-replacement operation and chemotherapy. She also has considerable care needs. Physical care (such as the provision of food or washing) is the least of these. She wants to continue enjoying a social, intellectual and spiritual life, but needs help to do so. She has awkward feelings about the wheelchair, and these emotions need to be acknowledged. Her needs also appear contradictory. She wants to be mobile and independent but doesn’t want the wheelchair because it doesn’t fit with how she sees herself. She does not want to know all the details of her illness immediately, but she does need to make plans. She wants to make her own decisions but wants her son’s help. Looking deeper still, perhaps Jan also needs to feel like a grandmother who can still care for a young child. She is both carer and care receiver.
Also, some of Jan’s needs are developmental, meaning that she needs to make some changes in her life, and these require therapeutic input. For example, while Jan is healing following her knee operation, she also needs help to learn to walk in a different way. Jan is undergoing a significant life change, and she needs to adapt and learn to live in a different way – you may have wondered if she has received counselling to help her deal with her challenges. So ‘therapeutic input’ may focus on quite sophisticated changes. For example, mental health workers may help someone deal with negative thoughts, or support workers will build up the confidence and self-esteem of a person with a learning disability trying paid work for the first time. When seen in this light, care is far from simple and involves quite complex processes and sophisticated insights.
In the discussion above, curative activities were treated separately from caring activities. The philosopher and ethnographer Annemarie Mol (2008) argues that care and cure cannot be treated as distinct activities. Is feeding Jan care, or is it cure (providing nourishment to regain strength)? Is medication for pain relief care (the relief of suffering) or cure (for example, ensuring that Jan sleeps to help her recover)? Mol also argues that much caring work is concerned with making life bearable. She suggests that many of the conditions that send a person to the doctor are not quick fixes but incurable long-term conditions requiring medical interventions focused on making life more bearable – the painkillers Jan needs will not cure her, and so prescribing them could be termed care. Also, medical professionals argue that cure is inadequate unless accompanied by care. Empathy, shared decision-making and working with the whole person are as important as treating organs and limbs (Goodrich and Cornwell, 2008). Care is the essential ingredient to any curative process, and the two activities are inseparable.
Throughout this chapter, therefore, the term caring practice is used to indicate a wide range of activities in health and social care, whether curative, caring or developmental. Many people provide caring practice – paid practitioners working in a health and social care job, and informal carers looking after friends and family. This chapter attempts to move beyond the surface of health and social care activities – the physical labour, assessment and diagnosis, the dressing of wounds and provision of medication, the talk and the therapy – to get to some of the issues underneath.
How are the living circumstances and personal health situation of Jan likely to impact upon her quality of life?