**8. Changes in personality and mood**

There is an important temporal framework to the experience of COPD with the visions of past, present and future selves being held in constant comparison to each other. Nicolson & Anderson (2003) describe how these gradual changes from independence to dependence lead to loss of self-esteem, loss of self-image and loss of power. The disease creates an otherness where the more visible 'medical self' is separate from the real self. Several studies reveal the nature of patient storytelling with past selves portrayed as athletic and vigorous, and present selves being barely able to walk (Bailey & Tilley, 2002, Gullick, 2008). Their future is seen in terms of loss: loss of anticipated retirement, loss of hoped for relationships with children and grandchildren (Nicolson & Anderson, 2003), and loss of 'possible selves' which are no longer conceivable (Gullick & Stainton, 2009).

This loss of independence and loss of family and community roles frequently lead to frustration, irritability and depression (Elkington et al., 2005, Seamark et al., 2004, Wilson et al., 2007). Those with advanced disease may see their life as meaningless. They communicate hopelessness, worthlessness and resignation and this can make death seem

Psychosocial Dimensions of COPD for the Patient and Family 161

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

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

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

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

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

breathlessness as a gauge of capacity for tasks (Boyle, 2009b, Gullick, 2008).

body is able to do.

independently (Kanervisto et al., 2007).

(Boyle, 2009b).

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

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, 1985, Gullick, 2008).

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

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 these symptoms (Wilson et al., 2007).
