**9. The confining nature of COPD for the patient and family**

People with COPD and their close family members live within a shrinking life-world (Gullick & Stainton, 2008). The physical boundaries of their life are diminished as the sick person begins to avoid taxing outings and spends the majority of their time within their own four walls. Mary explained of her husband, Keith: *"He could just walk on to the verandah and play with the dog a little bit, just in the confines of what you might loosely call the house. And then he just gradually stopped doing that"* (Gullick & Stainton, 2008).

People become socially isolated as they avoid environments and situations that may trigger breathlessness. Their consciousness of the socially unacceptable nature of their coughing and spitting makes them reluctant to enter new social situations. People reliant on home oxygen concentrators may be literally tied to an electrical power source and this increases isolation for the patient and the complexity of care for the family (Boyle, 2009b). People lose shared experiences with family and friends leading to loneliness, sadness and abandonment as they not only avoid social activities but feel they are avoided by others (Ek & Ternestet, 2008, Wilson et al., 2007, Leidy & Haase, 1999). Williams et al (2011) describe this experience as like living within a 'stagnant pool'. The physical stagnation

like an attractive option (Ek & Ternestet, 2008, Oliver, 2001, Lindqvist & Hallberg, 2010). Terry (72 ) recounted: *"As true as I'm sitting here, … I go to bed and I say, 'Tonight would be a nice night to die. Take me.' … Really and truly, what good am I? I can't take my wife down to the* 

Despite the extremes of emotions, people try to contain their feelings as emotional turmoil can bring on exacerbations of breathlessness that are difficult to recover from. This has long been recognised and described as living within an 'emotional straight jacket' with both positive emotions such as laughter, and negative emotions such as anger, leading to distressing dyspnoea (Rabinowitz & Florian, 1992, Dudley et al., 1980, Diethorn, 1985). Partners of COPD patients tend to avoid discussing problems, or subjects that could lead to conflict with their ill spouses, for the same reason (Ring & Danielson, 1997, Sexton & Munro,

Hypoxia may result in cognitive and personality changes that can further isolate people from family and others in the community. These may manifest as hallucinations, confusion, memory loss or unreasonable and unsociable behaviour (Gullick, 2008, Boyle, 2009b). Betty (73 yrs) explains of her husband, Terry: *"It's been hard… He gets very stressed and cranky over nothing… If anything goes wrong, I've done it… I know he's having trouble; he can't get about too much… It makes him more upset".* For carers, the mood and personality changes of their loved

We know that rates of depression in COPD are reported at around 40% (Yohannes, 2005, Wilson, 2006) and up to 57% for those on home oxygen (Lacasse et al., 2001). Depression is further tied up in self blame and the perceived blame of others as people acknowledge the burden of their care and their ineffectiveness (Barnett, 2004). Anxiety is suffered by around a third of COPD sufferers, is a predictor of hospital admissions, and impacts significantly on the person's quality of life (Yohannes, 2000, Jones, 1991) Despite our awareness of anxiety and depression, there remains a lack of access to psychology services that could ameliorate

People with COPD and their close family members live within a shrinking life-world (Gullick & Stainton, 2008). The physical boundaries of their life are diminished as the sick person begins to avoid taxing outings and spends the majority of their time within their own four walls. Mary explained of her husband, Keith: *"He could just walk on to the verandah and play with the dog a little bit, just in the confines of what you might loosely call the house. And* 

People become socially isolated as they avoid environments and situations that may trigger breathlessness. Their consciousness of the socially unacceptable nature of their coughing and spitting makes them reluctant to enter new social situations. People reliant on home oxygen concentrators may be literally tied to an electrical power source and this increases isolation for the patient and the complexity of care for the family (Boyle, 2009b). People lose shared experiences with family and friends leading to loneliness, sadness and abandonment as they not only avoid social activities but feel they are avoided by others (Ek & Ternestet, 2008, Wilson et al., 2007, Leidy & Haase, 1999). Williams et al (2011) describe this experience as like living within a 'stagnant pool'. The physical stagnation

one are often the hardest thing about living with COPD (Oliver, 2001, Wicks, 1997).

**9. The confining nature of COPD for the patient and family** 

*then he just gradually stopped doing that"* (Gullick & Stainton, 2008).

*shop, I can't walk from here to my barber who's just round the corner…"* (Gullick, 2008).

1985, Gullick, 2008).

these symptoms (Wilson et al., 2007).

through loss of mobility is likened to an imprisonment; there is a stagnation and staleness of self that highlights the disparity between what the mind wants to do and what the body is able to do.

The confining nature of COPD extends to the family carer. As the physical effectiveness of the ill person declines, the workload of close family members increases. In the case of older couples, the primary carer may be facing their own health and ageing issues and the role of caring can seem overwhelming. The fear that something may happen to their loved one in their absence means that they become bound, physically to the home and psychologically to the role of caring due to a perceived need for increased vigilance. Their need to closely monitor their loved one leads to the use of phones and intercoms, listening to breathing during the night, watching for early signs of exacerbation and using the current level of breathlessness as a gauge of capacity for tasks (Boyle, 2009b, Gullick, 2008).

The experience of caring differs between spouses and other family members. The reciprocal nature of most marital relationships places caring in a framework of the historical give-and-take between partners and is sealed with the understanding of "for better or worse". Amongst younger caregivers, caring may be challenged by the competing roles of working and parenting and a different level of perceived reciprocity (Gullick, 2008, Nicolson & Anderson, 2003). Children and siblings are more likely to find the caring burdensome, and to note the lack of caring input from other family members (Gullick, 2008). Those carers with a higher level of education may find it more difficult to accept the loss of independence (Nordtug et al., 2010). Family enmeshment also makes adjustment to illness more difficult. When people weave their identities and activities around each another so completely it is difficult for any one member to function independently (Kanervisto et al., 2007).

Carers often feel weighed down by their multiple roles and feel similar losses of shared social experiences (Seamark et al., 2004). The caring role may coincide with a time of both declining health and fitness and increasing heaviness of the work of nursing. Women caregivers in particular are prone to somatic symptoms and anxiety, and although taken for granted, the frequent interruptions to sleep can be wearing (Bergs, 2002, Nordtug et al., 2010, Boyle, 2009b). Whilst some carers manage to integrate caring with employment to provide some personal time and space, others are forced into an unwelcomed, early retirement (Boyle, 2009b, Gullick, 2008). It is known that for people who are unable to leave the home for some sort of personal pursuit, there is a higher perceived burden of care (Boyle, 2009b). These losses of social participation for carers may contribute to a loss of self-identity with some women becoming unable to separate a sense of themselves from their husbands. Their future hopes for meaningful pursuits and achievements, a relaxed lifestyle and personal freedom become lost in the daily grind of their present reality (Boyle, 2009b).

The majority of social interaction for carers is with the ill person; however, males with COPD tend to isolate themselves from conversation, have a reduced interest in things, and as a consequence, have little to talk about (Bergs, 2002). This loss of intimacy through conversation is parallelled with a loss of physical intimacy, including sexual interaction (Gullick, 2008, Sexton & Munro, 1985). Where intercourse is attempted it may be frightening with distressing breathlessness distracting both partners from the

Psychosocial Dimensions of COPD for the Patient and Family 163

health professionals or because of the actual attitudes of health professionals (Johnson et al., 2007, Burrows & Carlislea, 2010, O'Neill, 2002). For example, current smoking is a contraindication for many elective surgical procedures, including lung volume reduction procedures for emphysema. People are known to have been excluded on this basis without receiving the smoking cessation support that could facilitate their access to such interventions (Gullick & Stainton, 2006). Smokers are less likely to have visited a doctor in the past year (Fisher & Hill, 1990), and smoking is associated with non-adherence to

The context of self-infliction may create an underlying anger and resentment amongst family members, particularly where family have not struggled with an addiction of their own. This anger may make the caring burden harder to accept, but may also be intermingled with guilt over these emotions (Boyle, 2009b, Gullick & Stainton, 2006). Gary (38 yrs) explains of his father: "*They can hardly drag themselves across the room, but they'll still smoke. It makes it tough for families, you're doing everything you can, but you feel, 'What's the use of doing it if he's still smoking?' He tries to blame different things… infection in his lungs… exercise… which is so idiotic. If you had a tape, and … let him hear himself he'd probably go "Oh… Silly!"*

Those who accept the causative role of smoking in their illness experience regret and anger for their past inability to stop (O'Shea et al., 2007). However, only a small proportion of people with COPD attribute cigarettes as the primary cause of their lung disease (Hansen et al., 2007). In a large, early survey of older smokers with or without COPD, 47% didn't think quitting would improve their health and 45% did not believe smoking was harming them (Fisher & Hill, 1990). The fact that there may be COPD amongst other family members is usually explained away as a family predisposition rather than a shared family smoking addiction. Numerous studies demonstrate the widespread denial of smoking as the main cause of breathlessness. Rather, patients attribute occupational exposure, ageing, lack of fitness and 'bad luck' as major contributors (Wilson et al., 2007, Hansen et al., 2007, Burrows & Carlislea, 2010, Gullick & Stainton, 2006). The study of Boyle (2009b) demonstrated that spouses are also inclined to find explanations for the illness that externalise the responsibility from their partners to others. Knowing other smokers who do not have COPD

The self-talk around the impact of smoking sometimes extends from denial of harm to positive physical, social and psychological benefits (Schofield et al., 2007, Osman & Hyland, 2005). Some research participants report that smoking makes them feel better and eases their breathing and others recall shared social experiences around smoking with affection. The issue of the pure enjoyment of smoking to the addicted individual cannot be ignored. Cigarettes have been described as a 'best friend', providing comfort and companionship (Lindqvist & Hallberg, 2010). Research participant Terry recalls and craves the sensation of smoking: *"I enjoyed smoking, and even now… I'd love a cigarette. My son … goes outside and has a smoke. I say 'Sit in here and I can smell it.' I want the smell of his smoke."* (Gullick & Stainton,

Smoking is widely utilised tool for stress reduction. It is common for people who have succeeded in smoking cessation to later relapse due to extreme stress or bereavement (Schofield et al., 2007, Burrows & Carlislea, 2010, Gullick & Stainton, 2006). The findings that cessation does not automatically deliver better well-being adds to the problem. All ex-

pulmonary rehabilitation (Young et al., 1999).

reinforces their beliefs.

2006).

romanticism or eroticism of the moment. Whilst for many couples sex becomes less important, other forms of intimate physical contact is also avoided so that simple loving gestures such as cuddling or kissing may be lost to the caregiving spouse. Carer Claire, (55yrs) explained, *"you get used to not having those sort of things. You get used to being…not touched"* (Gullick, 2008).

Much of the caring literature on COPD focuses on female spouses. However, where both men and women are participants there appears to be a difference in caring styles and responses to caring. Women carers, in particular, take on a micro-management approach, arranging medical appointments and scrutinising diet, medication and exercise compliance and this differs from the more passive and delegatory style of male carers. Women try to play down the ineffectiveness of the sick person by secretly completing heavier jobs or slowing their pace whilst walking. They look for opportunities to promote a sense of effectiveness by leaving available the achievable jobs around the house, and only assisting with body care where it is absolutely necessary. Liz described her approach with her brother, Andy: *"I made every effort so that he didn't see a lot of the things that I did, so that he didn't know that he was incapable of doing it"* (Gullick, 2008). Women try to protect others in the family from seeing how bad things are. There is a sense of wifely duty reported, with women determined to 'walk the road' with their husband until the end. They can't imagine life without their partners after giving such intense care for so long. Women caregivers ignore their own health needs and become sad and worn out (Bergs, 2002).

There are a number of unmet needs amongst family carers in COPD, including the desire for better support with physical care and symptom control, and more useful information about the course of the illness (Currow et al., 2008, Bergs, 2002). Women carers are often too proud to ask for help from other family members (Bergs, 2002), whereas male carers more happily enlist outside help. Because of the intensity of carer engagement in COPD homemanagement, health professionals must seek the insights of carers during the patient assessment process, and educate and involve them when introducing new therapies. Carers may be the champions of patient motivation, but they are also known to actively eliminate treatment strategies they see as unnecessary or harmful (Boyle, 2009a).
