Only carers of PwP who had entered into a care home during the study period were invited to take part in an in-depth interview. Ten carers (6 wives, 1 husband, 1 sister, 1 son and 1 daughter) were approached, all of whom consented to take part (Table 5.1). During the course of recruitment the largest possible variety of carers were interviewed. The researcher would have liked to have interviewed more carers who were husbands, siblings and offspring but no more were identified before the end of the recruitment stage.
All interviews were chosen to be conducted in their own home and each interview lasted between one and a half to two and a half hours. The
importance of note taking was highlighted when the third interview could not be downloaded due to a technical fault with the recording device and so the field notes were used to ensure the content of the interview could still be used. When quotes have been integrated into this results chapter they are identified by participant number and then transcript line number(s), for example (2: 33 – 34).
Table 5.1 Qualitative Carer Details Carer Diagnosis of
Person Cared For
Relationship to Person Cared For
Lived with the Person Cared For
1 PDD Wife Yes
2 PDD Husband Yes
3 PDD Wife Yes
4 PD Sister Yes
5 PD Wife Yes
6 PD Wife Yes
7 PDD Wife Yes
8 PDD Wife Yes
9 PD Daughter Yes
10 PD Son No
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Following multiple reviews (Appendix 7/8) a total of six themes were identified following analysis of the interviews:
1. The trouble with Parkinson’s (symptoms).
2. How we coped with the changing face of Parkinson’s.
3. The consequences of caring.
4. I can’t do this anymore…but all I need is a crisis point.
5. The need to care and worry continues.
6. The impact of not being an informal carer anymore.
The first three themes are related to issues of caring for a PwP at home and reveal more detailed information about the carer role, tasks undertaken but also describe the distressing and troublesome symptoms that they had to deal with and the consequences of caring. An overview of each of the first three themes is described below.
5.3.1 The Trouble with Parkinson’s (symptoms).
Carers described the initial symptoms that they noticed in the PwP, and how their lives changed very little initially post-diagnosis. In the early years carers were often lulled into a false sense of security and unaware of the life yet to come. As the Parkinson’s progressed, carers described more and more troublesome and distressing day and night symptoms developing, including apathy, aggression, disturbed sleep, personality changes and falls.
5.3.2 How We Coped with the Changing Face of PD
This theme encompasses some of the different methods and activities that occurred with this progressive condition to enable the PwP to remain within their own home. As the Parkinson’s progressed and symptoms changed, carers described a change in their role as they became a carer. They described how they took on a growing number of different tasks to help support the PwP. There was also a sense of increased responsibilities and decision making processes within their relationship and in the general
running of the household. The hunt for, and great importance of, information
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in planning, coping and caring was evident. Carers used a range of constructive and destructive coping behaviours and highlighted the levels and changes of support they received from family and friends and the role this played in coping. Maturation within this role was also influenced by previous care experiences and carers described the differences they felt supporting the PwP compared to their previous caring role. Carers also described expectations of the role, the level of time as a carer and for some, the acceptance of the role. Adaptations were often made to the home with increasing amounts of equipment needed to facilitate this. Carers talked about the need for different types of formal care for the PwP, and how this changed over time. They also spoke of the impact of formal care support they had been offered or received, along with the positive and negative aspects of formal care.
5.3.3 The Consequence of Caring
Carers described the consequences of being a carer. Carer fears and demands of caring often meant that people experienced changes in their quality of life. Carers experienced loss of future plans, and social and work lives previously enjoyed, as they were not able to leave the person they cared for unsupervised. Carers experienced new pressures and feelings, such as the pressure and expectation to care. The impact of caring led to frustration, helplessness and resentment, and the physical demands,
combined with disturbed nights, affected their own health. Carers described a whole array of negative feelings and fears due to being a carer and how they were coping (or not) with the changing situation. Money issues were also frequently raised as a point of concern.
Within this theme a sub-theme emerged about ‘The way you make me feel (about us)’. This sub-theme was about the change in the quality of
relationship from the husband, wife or daughter to the carer of the PwP.
Many carers described how they no longer liked the person they cared for and how the relationship had become strained. Other carers talked about a
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lack of quality time together and the loss of their partnership. This change to the relationship status at times altered the way that the carers behaved towards the person they were caring for, often in a negative way including changes in temperament.