UMEÅ UNIVERSITY MEDICAL DISSERTATIONS NEW SERIES NO 1087 – ISSN 0346-6612 –ISBN- 978-91-7264-265-2

From the Department of Nursing, Umeå University, Umeå, Sweden

Living in consolation while growing very old

Regina Santamäki Fischer

Umeå 2007

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Copyright © 2007 by Regina Santamäki Fischer Front cover illustration: Regina Santamäki Fischer

ISSN 0346-6612 –ISBN- 978-91-7264-265-2

Printed by: Print & Media, Umeå, 2007:2002845

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CONTENTS ABSTRACT 5 ORIGINAL PAPERS 8 PREFACE 9 INTRODUCTION 9

The Umeå 85+ Study 10 The Consolation Study 10

BACKGROUND 14

Growing very old 14 Suffering and the need for consolation when growing very old 13 Consolation 14 Consolation and the very old 16 Rationale for the study 17 The purpose for the study 17

THEORETICAL AND METHODOLOGICAL FRAMEWORK 18 PARTICIPANTS AND METHOD 18

Research context and the participants 18 Methods of data collection 20

Interviews 20 Self-transcendence scale 20

Methods of analysis 21 Phenomenological hermeneutics 21 QualitativeContent analysis 22

Ethical considerations 22 FINDINGS 23

The meaning of growing very old (Studies I and II) 23 The meaning of consolation when growing very old (Studies III and IV) 24

COMPREHENSIVE UNDERSTANDING 25 Consolation as Being carried 27 Consolation as Being supported 28 Conclusions 29

CRITICAL REFLECTIONS 30

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METHODOLOGICAL CONSIDERATIONS 31 IMPLICATIONS 34 SVENSK SAMMANFATTNING 36 ACKNOWLEDGEMENTS 39 REFERENCES 41 PAPERS I-IV APPENDIX DISSERTATIONS FROM THE DEPARTMENT OF NURSING 54 DISSERTATIONS FROM THE UMEÅ 85+ STUDY, 2006-2007…

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ABSTRACT

This thesis is part of the Umeå 85+ Study, a study that takes a salutogenic approach to aging by describing the conditions that promote good aging and the conditions that threaten good aging. This thesis is also a part of the Consolation Study carried out at the Department of Nursing at the Umeå University. Growing very old into late life means increased suffering from prolonged and multiple bodily ailments, new diseases, and increased risks of disadvantages and losses in life; however, living for a very long time also means one has the opportunity to mature and gain wisdom. It is anyhow the sufferings that may lead to despair and call for consolation. This thesis looks at the lived experience of very old people and aim at illuminating the meaning of growing very old and the meaning of consolation when growing old. The participants were 85, 90, or 95 years old or over, living in the county of Umeå in the year 2000. Further criteria included the ability to answer questionnaires of Likert-type and the strength to participate in narrative interviews. The thesis comprises four studies with data from thematic narrative interviews that are analysed using a phenomenological hermeneutic method (Studies I, II, IV) and qualitative content analysis (III). Study I illuminates the meaning of lived experience of growing very old with respect to losses and gains. The transcribed interviews of 15 85-year-old people were analyzed and disclosed growing old as: maintaining one’s identity in spite of the changes that come with aging—that is, being able to balance change with feeling the same. This was based on four themes: balancing weakness and strength, balancing slowness and swiftness of time, balancing reconciliation and regret, and balancing connectedness and loneliness. Very old age means a life that has significantly changed and has an effect on the lived experience. In Study II, interviews with 12 people between 95 and 103 years old were analyzed. The comprehensive understanding of the meaning of being very old was interpreted as living in hope and being on the move, based on two themes: Being in stillness and in movement, which involves being in one’s aged body, unable to move, and being in the stillness of the inner person occupied with remembering and reconciling life; and Being at the threshold ready to let go, which implies being at peace and feeling confident despite the anxiety of dying. Studies III and IV concern the phenomenon of consolation. Study III describes how 90-years old and older people perceive consolation. Qualitative Content analysis of 49 interviews revealed four categories perceiving consolation connected to God, others, self, and things and presented in two themes:

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“Living amidst consolation in the presence of God” and “Seeking consolation”. Most interviewees referred to religious consolation as religion had been so closely connected with the word “consolation” all their lives. Study IV examines the meaning of being consoled when growing very old. The interviews with 13 people over 85 years who scored high on a self-transcendent scale were analysed using a phenomenological hermeneutic method. A comprehensive understanding of the meaning of being consoled is an immediate experience of being carried and embraced by God and supported by the loving care and affection from others and the world, being relaxed, peaceful and full of joy and experiencing hope. The interpretation was based on the main theme Feeling whole, comprising the following themes: Being connected to self, with the following sub-themes – Living in a spirit of happiness and joy, Submitting to pain and fatigue with confidence, Thriving in calmness, relaxation, and peace; and Being in reminiscence, thinking, and praying. Feeling whole also includes the theme Feeling connected to fellow beings and the world, with the following sub-themes – Receiving love and support, and Being outpouring, and the theme Feeling connected to God, with the sub-themes Living in confidence; and Living in fidelity. The meaning of growing very old and the meaning of consolation when growing very old point at a way of aging into late life interpreted as living in consolation. When balancing the changes in body and life that cause suffering, there may be a temptation to fall into despair. However, when growing very old with a present and available attitude, open to what ever passes in life and submitting to sufferings and losses with confidence, there is a possibility to overcome despair. Reminiscence, reflecting on life, and transcendence are resources when growing very old that were interpreted to being related to consolation. Thus growing very old and living in consolation is to transcend and come in communion with the sacred; with goodness, light, joy, beauty and life and hope, carried by a connectedness to God (e.g. Higher power) and supported by a connectedness to fellow beings and the world. Key words: aged, aging, phenomenological hermeneutic, transcendence, consolation

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ORIGINAL PAPERS

This dissertation is based on the following papers which in the text will be referred to by their Roman numerals, (I-IV). I Santamäki Fischer, R., Norberg, A. & Lundman B. Aging as an balancing act: Meanings of growing old as narrated by people aged 85. The Umeå 85+ Study. Submitted manuscript. II Santamäki Fischer, R., Norberg, A. & Lundman B. (2007) “I’m on my way” – The meaning of being very old as narrated by people aged 95 and over. The Umeå 85+ Study. The Journal of Religion, Spirituality and Aging, 19(2). In press III Santamäki Fischer, R., Nyberg, B. Lundman. B. & Norberg, A. Living amidst consolation in the presence of God. Perceptions of consolation among the oldest old. The Umeå 85+ Study The Journal of Religion, Spirituality and Aging, 19(3). In press. IV Santamäki Fischer, R., Nyberg, B. Lundman. B. & Norberg, A. Feeling whole: The meaning of being consoled as narrated by very old people. The Umeå 85+ Study. Submitted manuscript.

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PREFACE

It is possible that my interest for both growing old and for consolation started in my childhood as I was a daughter of a Salvation Army officer. I used to follow my father to visit old people in their homes, where he was reading the Bible to them and praying for them. Then I became interested in how old people lead their lives. What is it that keeps us going on and what happens to us through our lives and how does that affect us when we grow old? When working as a nurse in a nursing home, many years later, I once happened to help a very old woman in her bed. She was wrinkled and grey and frail and in her nineties. Above her bed there was a photograph of a very beautiful woman dressed in a velvet gown watching me with dark eyes. It was a portrait of the old woman in her youth. I looked down at the woman in the bed, on the wrinkled old face and back again to the photography. I could see the resemblance. Where was this beautiful young woman now? She was here behind the wrinkles and the grey hair. This short moment stunned me. In an instant I could see the change – from being young to being old. I understand how my own idea of old people as some special entity – different from me – how it could affect how I met this old woman in my work as a nurse. In this instant I also realised that I will become old myself. Many years later, I was given the opportunity to take part in an investigation in being very old at the Department of Nursing at Umeå University. I realised that I now had a chance to go further in my thoughts on aging and on life. I was interested to know from the old persons’ perspective, how it is to grow old and to be at the end of life.

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INTRODUCTION

In almost all Western countries more and more people are living to advanced age. In 2006 in Sweden 17.5% of the population are over 65 years old and those over 85 years old constitute 2.5% of the population. In the year 2010, it is estimated that those over 65 years will be around 22.5% of the population (SCB 2006). Among them the very old sub-population is growing faster than any of other age group. This demographic change will lead to a society with many elderly people that are in good health and good condition and many very old people in poorer conditions and in the need for significant help. For those that grow very old, the aging process is marked by both losses and gains. The losses come from declining body-mind and from losing family members and friends through illness and death. It is possible that the attitudes in society towards elderly people may become harsher conveying a disregard and loss of status. Although there are gains related to the developmental processes in aging such as gaining wisdom, the losses are more profound and the need for help and care to manage life increases. When people are suffering, they need consolation to endure and find steps to go on in life. Consolation in very late life is important when facing losses and death. There is a need to learn more about the meaning of the lived experience of growing very old and of consolation related to experiences in late life.

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The Umeå 85+ Study

This thesis is part of the Umeå 85+ Study, a study that takes a salutogenic approach to aging by describing the conditions that promote good aging and the conditions that threaten good aging. To examine these conditions, this thesis looks at the lived experience of very old people. The participants were 85, 90, or 95 years and over, living in the county of Umeå, a medium-sized town in northern Sweden during 2000. The study is a multi-professional collaboration between the Department of Nursing and the Department of Community Medicine and Rehabilitation, Geriatric Medicine, Occupational Therapy and Physiotherapy Units, at Umeå University. The study is also multi-methodological and includes data for various qualitative as well as quantitative analyses. The data in this thesis consists mainly of thematic narrative interviews collected among the very old (Bergdahl et al. 2005, Nygren et al. 2005, von Heideken Wågert et al. 2006). The focus in this thesis is the meaning of the lived experience of very old person and the aim is to illuminate the meaning of growing and being very old. The Consolation Study

This thesis is also part of the project “The Consolation Study”, a study that is carried out at the Department of Nursing, Umeå University. The project embraces interview studies on consolation with personnel from various professions (Norberg, Bergsten & Lundman 2001) as well as studies on consolation for sick children (Brännström Ångstrom et al. submitted), for persons suffering from advanced dementia disease (Norberg 2001), for persons having attempted suicide, their relatives, and care givers (Talseth, Gilje & Norberg 2001, Talseth, Gilje & Norberg, 2003, Gilje, Talseth & Norberg 2005, Talseth, Gilje & Norberg 2007), for persons suffering from malodorous exuding ulcers (Lindahl et al. 2007) and for self-comfort (Dahlqvist et al. manuscript). This thesis also aims at illuminating the meaning of consolation when growing very old.

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BACKGROUND

Growing very old The lived experience of aging involves that old people adjust and adapt to their changed circumstances. Emmy Gut (1998), a Swedish psychologist who in her eighties wrote about aging from her own experience, concluded that two matters dominate aging: crisis and adaptation. The crisis comes from changes in life and the body, and the adaptation is the developmental process that gives meaning to the process of aging. The developmental aspect in growing old is studied and described. In his theory of human development, Erikson (1982) described a process by which the person’s developmental maturity grows through eight crises (developmental stages). The last stage of life concerns the crisis between integrity and despair to gain wisdom and avoid disdain. Tornstam (1996) developed a theory on the notion of spiritual maturity in aging called gero-transcendence, a concept that describes growing very old and may lead to a shift in perspective from a materialistic and rational view to a more cosmic and transcendent one. According to Reed (1991a), to transcend self is a major developmental resource in aging: “The expansion of one’s conceptual boundaries inwardly through introspective activities, outwardly through concerns about others’ welfare, and temporally by integrating perceptions on one’s past and future to enhance the present” (Reed 1991a p. 5). Studies on the lived experience of being very old have found various aspects on the phenomenon growing and being very old from various parts of the world. In Korea, growing very old was something one wishes to avoid although accepting it as a part of life (Shin, Kim & Kim 2003). In USA, family relationships and health was important when being very old (Easely & Schaller 2001), and the lived experience of rural elderly was shaped by historical, cultural, and environmental contexts (Hinck 2004). In Scandinavian settings, growing and being very old was to experience joy or to resign oneself to old age (Nilsson, Ekman & Sarvimäki 1998) and found ranging from self-realizing to despairing and withdrawal (Ågren 1998). Nygren (2006), who studied the good aging among the very old in Northern Sweden, found inner strength to be of importance when growing old. Although positive developmental changes of growing old occur, it is the destructive decline that causes suffering. Losses when growing very old include physical, psychological, and social loses. Submitting to adversities and decline often increases as one ages. Physical abilities gradually diminish (Andersen-Ranberg et al. 1999, Yi &

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Vaupel 2002). Many very old persons suffer from multiple chronic and acute diseases (Buckley 2001). The deterioration process also causes suffering in areas that affect daily living and possibilities to manage life. Fractures through falls are common and cause pain (Wehren & Magaziner 2003) and fear of falling (Kressig et al. 2001) limits the ability to move. Very old people may also be in danger of dehydration (Sheehy, Perry & Cromwell 1999), malnutrition (Guigoz, Lauque & Vellas 2002), and have problems with urinary and bowel incontinence (Lekan-Rutledge 2004, Tariq 2004). The proportion of person with cognitive decline increases with age (Femia, Zarit & Johansson 2001, Black & Rush 2002, Park, O’Connell & Thompson 2003). Alzheimer’s disease has the highest prevalence of neurodegenerative diseases estimated at 1.450/100 000 and the incidence and prevalence increases with age. Between the age 80 and 85, the prevalence is estimated as high as 30% of the population (Vandenberghe & Tornoy 2005, SBU 2006). Depression is common (Serby & Yu 2003, Bergdahl et al. 2005) and strongly associated with functional disability and cognitive impairment (Stek, et al. 2004). For some, depression may be one cause for suicide. Erlangsen, Bille-Brahe, and Jeune (2003) found that the suicide rate remained stable among the very old, not decreasing as in other age groups, and that more determined suicide methods were used. Further reasons for suicide are anxiety (Scocco et al. 2001, Preville et al. 2005) and wish to maintain control over the dying process (Courage, et al. 1993, Somogyi-Zalud et al. 2002). The end of life and nearness of death are notions that affect old people and are ambivalently perceived. Elder people’s views on death and dying seem connected to the readiness to talk about death and dying, anxiety for death, balancing being a burden for others, and a worry about the end of life phase (Hallberg 2004). In older people, death anxiety is greater if they have low ego integrity, more physical and psychological problems, no religious beliefs, and are institutionalized (Tomer 2000). For most very old people, the end of life is a time of acceptance and preparation for death (Carrese, Mullaney, Faden & Finucane 2002). For example, Nakashima and Canda (2005) interviewed 16 oldest of the old hospice patients and found them to be engaged in a dialectical tension between defiance and surrender, fighting the illness but welcoming death. Losing family members and friends through death and illness results in aloneness and feeling lonely (Van Baarsen et al. 2001–2002). Feeling

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lonely is associated with increased mortality and need for health care (cf. Routasalo & Pitkala 2003, Stek et al. 2005). Further losses are the loss of social status caused by ageism, systematic stereotyping, and discrimination against elderly people (Butler 1995). Older people in television and movies are often portrayed as physical, cognitive, and sexual ineffective stereotypes, preferably in comic roles (Zebrowitz & Monteparte 2000). Ageism is considered widespread and perceived frequently in modern societies such as in North America (Palmore 2004), and perceived as fear that elders consume scare recourses and that it is depressing to see disease, dependence, and death (Tomer 2000). Consolation thus reasonably is important when growing very old. Suffering and the need for being consoled when very old When growing very old, adversities may convey pain, frailty, and loneliness. Suffering causes alienation through the loss of community with others and the sense of connectedness that is not being part of a whole. When suffering, loneliness is acute and alienates the sufferer from others. It makes one a stranger to others (Younger 1995). Weil (1986) describes suffering as experiencing nakedness, fear, and distance from others. For the very old this is to meet the ageism from society. Suffering also removes an individual’s inner purpose: “it makes us not ourselves” (Younger 1995). When growing very old, the changes may distort the feeling of being oneself. The sufferer resists and endures to find meaning in the suffering as long as it is bearable. If a suffering person does not receive consolation and the suffering and the alienation increases, it becomes unbearable and the person gets in a position of or a risk for affliction of the self (Weil 1987). To be relieved through comfort helps one overcome difficulties and find steps to go on in life. Weil (1986) proclaims that “in the bottom of the hearth of every human being there is an expecting…that good, not bad, will be done to him” (p. 71). When growing very old, losses in life are common, ranging from losses in health to losses of family members and friends. For the elderly, the sufferings may be afflicting and lead to despair if they do not receive/find consolation.

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Consolation The concepts of comfort, solace, and soothing are partly or totally overlapping the concept of consolation used in everyday talk as well as in research. Horton (1988) argues that the concept comfort is associated with such things as comfortable mattresses and solace is connected to pain, especially existential pain and soothing is related to teddy bears and such. The concept consolation is associated with loss. In a semantic analysis, Matsson-Lidsle and Lindström (2001) noted that the Swedish term “tröst” was connected to confidence, encouragement, and help. Kolcaba (1991) in a concept analysis found that the concept of comfort is connected to the concepts of consolation, soothing, reassurance, and support (Kolcaba 1991), and that dimensions of comfort are relief, ease, and transcendence (Kolcaba 1994). Comfort is also described in nursing as an opposite to discomfort (Tutton 2004). The concepts consolation and comfort are in the literature often used as interchangeable. In the studies, in this thesis the concept consolation is used. Loss and grief are unavoidable parts of life and people need consolation all their lives (from the cradle to the grave) and people are being consoled from various sources ranging from the pacifier in infancy to feeling connected to the Holy when dying. The first loss humans experience is the detachment from the mother. As a child ages, the child’s attachment to the mother is replaced with an attachment to an object. It may be a pacifier or a blanket or even a melody or a word. Having this object near, gives a fantasy of the mother and gives comfort. This transitional object is a link to the space between the inner world of the child and the outer world. It is a link to the mother-memory within the child. Being connected to this transitional space gives consolation. As the child grows even older, the child no longer needs the transitional object. The transitional object is replaced by illusions, symbols, and other objects to be consoled (cf. Winnicot 1953). Symbols and fantasies may give consolation to adults and especially to the very old. People have always used various ways to find consolation. People may have consoling experiences by being in contact with nature. For example, experiencing the wilderness was found to convey feelings of timelessness, solitude, oneness, and humility (Borrie & Roggenbuck 2001). Consolation from the relationship to the landscape may be intense when, for example, one paints the landscape (Wood 2002). The attachment between animals and humans is a source for consolation. For example, pets are consoling and benefit health (Brodie & Biley 1999). Art (Horowitz 2004, Wheatley

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2004), literature (Pearl 2001) and music may provide consolation. Stein (2004) describes how music has been important for grieving victims of September 11. Consolation from others is also important. When grieving for his wife, Troy Organ (1979) found that the best consolation was given by “active love” from people who listen, touch, and invite him to their homes and who weep with him. In addition, thinking, remembering, and creating a memory of the loved one gives consolation (Anderson 1993). Spirituality and religion are ways to find consolation (Melley 1998). Boethius (c. 480-525) wrote a consolation book after being jailed for treason, a charge that would eventually lead to his execution. He found consolation by being in a thought dialogue with Lady Philosophy who gave consolation by reminding him of what philosophy had taught him and what was important in life, regaining the belief in a righteous world order (Duclow 1979). Similarly, Levin, Wickramasekera and Hirshberg (1998) suggest that certain religious cognitions, emotions, and experiences have self-soothing psycho-physiological functions. Women seek religious consolation more often than men, who seek it for a wider range of problems (Ferraro & Kelley-Moore 2000). Consolation from religion is often described as religious coping and some authors describe phenomena as “consolation” (e.g., Krause et al. 2001, Maynard, Gorsuch & Bjork 2001, Meisenhelder 2003). Religion can shape coping activities, and religious coping includes “looking for spiritual support from clergy, participating in religious rituals, looking for comfort from God, working with God as a partner, deferring to God’s will” (Bush et al. 1999 p. 250), and religious coping is also described as “seeking strength and comfort from God” (Tix & Frazier 1998 p. 411). The art of religiosity seems to form the consoling effect. Park, Cohen and Herb (1990) found that a high intrinsic religiosity, a personal sense of the importance of spirituality, and religion in contrast to extrinsic religiosity, merely expressed and experienced as frequent attendance of religious services, showed a consoling effect for Protestants. Consolation when grieving from having a child suffering from cancer or the death of a child can be found by meeting close friends and relatives to discuss hopes and fears and to engage in religious activities (Hurwitz, Duncan & Wolfe 2004). By experiencing a vision of the child playing after death was comforting (Davies 2001). Rasmussen, Jansson and Norberg (2000) described dying people at a hospice finding consolation as “becoming at-home in the midst of dying”. Talseth, Gilje and Norberg (2003) studied consolation in connection to suicidal patients and describe a process of becoming ready for consolation.

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Öhlén and Holm (2006) describe a mother’s lived experiences of having dependent children and suffering from breast cancer and their ways of changing desolation into consolation. Consolation has also been studied among health care professionals. Söderberg, Gilje and Norberg (1999) illuminated the ability to turn difficult ethical experiences found in nursing into consolation. Rasmussen, Jansson and Norberg (2000) studied nurses lived experience of caring for dying patients and found that wholeness and communion was experienced in a consoling hospice spirit while a desolating hospice spirit resulted in feelings of alienation and fragmentation. Furthermore, Norberg, Bergsten and Lundman (2001) developed a model of consolation where consolation is described to occur when a suffering person in communion with a “consoler” feels connected to the sacred. Roxberg (2004) in her thesis describes that a consoling and health-bringing rest presents itself by giving up what is tied to the suffering.

Consolation and the very old When growing very old, consolation may be given by a comforting touch (Halbrook & Duplechin 1994, Edvardsson, Sandman & Rasmussen 2003), which may improve the elder’s sense of well-being and self-regard (Butts 2001) and improve health status and communication for cognitively impaired older adults (Bush 2001). Soothing music consoles and helps relaxation and sleep in older people (Lai 2004, Lai & Good 2005). As remembering and creating a memory gives consolation, reminiscence therapy is found to be comforting for elderly (Pittiglio 2000). Pets can also provide consolation for the elderly (Sable 1995). Sensitive and patient-focused care gives comfort (Hamilton 1989, Taylor 1992). Likewise, people with advanced dementia disease need consoling care that gives bodily, psychological, and spiritual consolation (Norberg 2001). Furthermore, swinging was found to significantly improve relaxation and give comfort to people with advanced dementia disease (Snyder et al. 2001). Many studies on consolation among old people have to do with religion. Elders may seek religious consolation when facing hard times (cf. Ferraro & Kelley-Moore 1994). In today’s society, the rituals for grieving are shortened; elderly find it more difficult to be consoled when grieving (Horacek 1988). Faith and rituals linked to faith can console old people (cf. Eisenhandler 2004). Religion is found to be important in late life (Van

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Ness & Larson 2002) and religious involvement seems to continue through out the last months of life (Idler, Kasl & Hays 2001). Holroyd (2002) describes how the elderly in Hong Kong seek religious consolation when they need to adapt to social change.

Rationale for the study Aging in late life is demanding. In his theory on human development, Erikson (1982) noted eight stages in life. By the eighth stage, a person can develop integrity and gain wisdom and avoid disdain. Later on, his wife, Joan Erikson, added a ninth stage in which the aging in late life is marked by the demanding dystonic aspects of aging. She describes, out of her own experience, how decline of body and mind may lead to a diminished self-confidence and self-esteem, threatening independence and control. All this conveys that despair follows close throughout the last stage of life (Erikson & Erikson 1997). Also, Baltes and Smith (1999) discuss the life at “the fourth age” as something that is heavily marked by the deteriorating effect of aging and that possibilities to develop when very old are limited. This may be true for some. However, it is possible to experience life as good despite suffering when growing very old. It is by studying the meaning of the lived experience of very old people that these qualities in late life can be unveiled; this is the purpose of this thesis. The purpose for the study The over-all aim of this thesis was to illuminate the meaning of growing old and the meaning of consolation when growing old. The specific aims of the papers are as follows: Study I: to illuminate the meaning of living with gains and losses when

growing very old as narrated by people aged 85. Study II: to illuminate the meaning of being very old as narrated by people

aged 95 and over. Study III: to describe how very old people perceive consolation. Study IV: to illuminate the meaning of being consoled narrated by very old

people.

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THEORETICAL AND METHODOLOGICAL FRAMEWORK The aim of this thesis is to illuminate the meaning of growing very old and the meaning of consolation when growing very old. The theoretical perspective is in the life world of the very old. The interpretations in Studies I, II, and IV are predominately based on the French philosopher Gabriel Marcel’s work (1889-1973). Marcel was an existential Christian philosopher. His philosophy is a concrete philosophy and his thinking is based on the lived experience of human beings. Marcel’s thoughts on religiosity and spirituality are non-dogmatic. They are also close to the ways of describing experiences of growing very old and of experiencing consolation in religious terms narrated by the participants in these studies. The methodological choice was also based on the aim to illuminate the phenomena growing old and consolation out of lived experience. The lived experience is grasped through narratives. To meet this aim, a phenomenological hermeneutic method was used. This method is described by Lindseth and Norberg (2004) and inspired by the philosophy of Paul Ricoeur, a follower of Marcel. Ricoeur claimed that lived experience will always remain private and that the meanings of lived experience can be communicated through speech. He further states that every person carries a wish to tell her/his life-story; narrating one’s life is to accomplish life (cf. Kristensson Uggla 1992). The method used in this study is based on transcribed interviews. Thus the interviewers who interpret transcribed interviews have memories of the speech situation. Furthermore, it has been possible to listen to the tapes. The participants in our study gave long and rich narrations on their experiences of growing old, which conveyed meanings of growing old and were suitable to be interpreted with this method.

PARTICIPANTS AND METHOD

Research context and the participants The participants constituted a sub-sample in the Umeå 85+ Study in northern Sweden. The inclusion criteria were being 95 years of age or older, being 90 years, or being 85 years the year the study was carried out. The Umeå 85+ Study started in the year 2000. The participants were identified through the National Tax Board in Sweden. All those aged 95 or older, all aged 90, and every other individual among those aged 85 were included. In total, 363 people out of 527 agreed to participate. Further

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inclusions criteria were having the ability to complete Likert-type questionnaires and participate in a narrative thematic interview. For the Umeå 85+ Study, 125 people took part in completing questionnaires and in interviews. In Study I, the participants were a sub-sample of the Umeå 85+ Study. Interviews were conducted with15 persons out of 46 aged 85 who were selected on basis of their richness and variation in narratives concerning experiences of growing very old. In Study II, the participants were also a sub-sample of the Umeå 85+ Study. Interviews with 12 persons out of 23 between 95 and 103 years old were selected on the basis of containing rich and varying narratives of the experience of being very old. To gain a variation in information concerning the perceptions of consolation among the very old (Study III), text from interviews with 49 persons among the 90 years old and 95 and older participants were purposefully selected. The text concerned their answer and narration when asked about their perception of consolation. The text contained about 90 pages. In Study IV, the participants were 29 of the 125 persons who answered the Self-transcendent scale (STS) with the highest scores (52p-60p). Out of these 29 interviews, 13 interviews were selected. These interviews contained rich and various narratives, as the participant could verbalize feelings, narrate, and reflect freely, and tell narratives that revealed experiences of being consoled. The participants in the studies all grew up in a sparsely populated part of Sweden. They had few years at school and had, from their early years, the aim to manage and support them. The women had mostly been working as housewives, in farming, or in a service job. The men worked with farming, building and construction. The participants over 85 years of age now lived in an urban area in their own house or apartment, managing most of their activities of daily living by themselves. Those over 90 and 95 years of age were in greater need of help with their daily living. Characteristics of the participants in the studies are shown in Table 1. They were grown up and lead their lives in a community influenced by a strong faith in God and a close contact with church (cf. Wikström 1975).

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Table 1. Characteristics of the participants

Characteristics Study 1 n 15

Study 2 n12

Study 3 n 49

Study 4 n13

Sex Women

Men

10 5

8 4

32 17

9 4

Age

85 y 15

95 y 6 >95 y 6

≥95y 21 90 y 28

85 y 7 90 y 1 ≥95 5

Living circumstances Living alone

10

11

45

10

Housing Ordinary housing

12

6

35

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Barthel’s index1, mean (±SD)

19.1 (±2.8) 19.7(±1.2) 19.0 (±1.5) 18.6(±3.1)

MMSE, mean2 (±SD) 28.1(±1.2) 26.4(±2.9) 26.1 (±3.4) 26.2(±3.2) 1Assessing personal ADL, with a maximum score of 20 (Mahoney & Barthel, 1965) 2MMSE = Minimal Mental State Examination, with a maximum score of 30. Scores below 24 indicate impaired cognition (Folstein, Folstein, & McHugh, 1975)

Methods of data collection

Interviews To gain qualitative data about the life world of the very old, thematic interviews (Kvale 1996 pp. 129-131) were conducted. The participants narrated various perspectives on life, important life events, and the experience of aging, experiences of loneliness, spiritual experiences, difficult and positive experiences, and experiences of consolation. The interviews, which lasted 30-90 minutes, were tape-recorded and transcribed verbatim including notations of non-verbal expressions such as silence and laughter. The Self-transcendence Scale (STS) The STS identifies intrapersonal, interpersonal, and temporal experiences that are characteristic of later life and reflect expanded boundaries of self. It was developed by Reed (1989) and it contains 15-statements that describe how one sees oneself as a person at this stage of life. The answers range from 1 (not agree) to 4 (fully agree). The possible range of scores is 15-60, with 60 representing the highest degree of self-transcendence (Reed 1989). The reliability and construct validity of the Swedish version of the STS have been evaluated and reported in a paper for a masters degree, and

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the internal consistency of the Swedish version was found to be 0.70-0.85 (unpublished data). The STS is presented in the Appendix. Methods of analysis Phenomenological hermeneutics To reveal the meaning of becoming and being very old, the transcribed interviews in Studies I, II, and IV were analyzed using a phenomenological hermeneutic method (Lindseth & Norberg 2004, see also Rasmussen, Norberg & Sandman 1995, Söderberg, Lundman & Norberg 1999, Sundin, Jansson & Norberg 2002). When people express their feelings, thoughts, and experiences, they express their lived experience. This experience is always personal and private, although its meaning can become public when transferred and passed on through interpretation to others. In this way, it is possible to come to understand the life world of human beings (Ricoeur 1976 p. 16), in this case the meaning of growing and being very old and consolation. The interviewer is the author and the interviewer is a co-author who takes part as a listener but also who encourages the interviewer to narrate by giving questions that are supporting but avoid dominance. It is essential that the interviewer feels free to relate the lived experience so the interviewee’s voice is heard in the interview text (Lindseth & Norberg 2004). The aim of the interpretation is through a dialectic process between the text as a whole and its parts, between understanding and explaining, and between what the text says (the utterance meaning) and what it points to (Ricoeur 1976 pp. 12-79). Phenomenological hermeneutics was used in Studies I, II, and IV. The first step was a naive reading where the interviews were read through several times to obtain a naïve understanding. This was the first interpretation of the text to get a sense of the whole and to get a first idea of the meaning of the phenomenon under study. The second step, the structural analysis, which was done to explain the text and to validate or invalidate the naïve understanding, involved a process in which each interview text was divided into meaning units, which could be anything in length from a phrase to several paragraphs. Next, the meaning units were condensed while still preserving the core. After this, sub-themes and themes were developed through further condensation and abstraction. In the third step, a critical interpretation,

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based on the naïve understanding, the themes, the researchers’ pre-understanding, and appropriate literature were done to formulate a comprehensive understanding. Qualitative content analysis In Study III, qualitative content analysis was used to describe how very old people perceive finding or receiving consolation and was performed according to a description by Graneheim and Lundman (2004). In qualitative content analysis, the unit of analysis can be various objects of study, such as texts from interviews and observation protocols. The analysis focuses on both the manifest and latent content in the texts (Downe-Wambolt 1992). The texts are divided into meaning units, words or statements that have the same meaning. The next step is to condense the meaning units while still preserving the core. After this, the condensed meaning units are abstracted interpreted to a higher logical level. Parts of texts that deal with a specific issue are a content area and can be parts of a text that address a specific topic in an interview. The condensed meaning units are then coded and understood in relation to the context and thereafter gathered into categories, a group of content that has something in common. At this point in the analysis, underlying meanings are linked to the categories in themes that go through the condensed meaning units, codes, or categories on an interpreted level (Graneheim & Lundman 2004). In Study III, each interview was read through and the text related to the questions about consolation was extracted. Next, the text was divided into meaning units, which were condensed, and abstracted into tentative categories. A process of reflection and discussion in the research team resulted in five categories. The meaning of the text in all the categories was interpreted and formulated in three themes. The interviews contained narratives and descriptions in various areas that are relevant for how the participants understand consolation. For this study, only descriptions and narratives given as a direct answer to a question about finding or receiving consolation were analyzed. Ethical considerations Interviewing very old people is a delicate task. The participants were all very interested in sharing their experiences, thoughts, and feelings on becoming and being very old and about consolation. Their openness revealed much information on painful events in their lives. They were all

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informed that they could abstain from answering the questions, which sometimes occurred, and to stop the interview if they felt tired or were content. All interviews were held in their homes and were understood as an invitation to their homes. For the interviewer, it was important to take in consideration their health and well being and conduct the interview in a respectful and caring manner. The study was approved by the Ethics Committee of the Medical Faculty, Umeå University (§326/99), Umeå, Sweden.

FINDINGS The meaning of growing very old (Studies I and II) For the elderly, adversities and decline in health may result in feeling slow and standing still. Anyhow, growing very old seems to be an act of balancing. One can still, despite adversities feel as if one were young and strong and continue living life as usual. One can regain health after a broken leg and also have a positive feeling about growing old and even to be proud of being old. It means balancing weakness and strength. Time is also experienced differently as one grows old, dragging or passing swiftly by. One is forced to balance slowness and swiftness of time. Reminiscence is powerful. The memories from the past are vivid and sometimes overwhelming. Both good and bad memories emerge and demand an ability to balance reconciliation and regret. Becoming very old means to loose one’s spouse and friends or even an adult child and face loneliness. One may also find new friends and make new acquaintances, having contact with friends and family that still are around and with those that have passed away in vivid experiences of their nearness and thus balancing connectedness and loneliness. The meaning of growing very old was then interpreted as balancing to preserve the self to maintaining one’s identity in spite of the changes that come with aging—that is, being able to balance change with feeling the same (Study I). When one becomes very old, life changes even more dramatically. One’s body is immovable, tired, fatigued, and heavy to use. The stillness these very old people are in is also a stillness of the inner person, the quietness of the soul; however, the image of movement is still profound. The very old is occupied with remembering and reconciling life being in one’s thoughts moving along “the avenue of one’s memories” and engaged in inner dialogue. The meaning of being very old is interpreted as Being in stillness and in movement. It is to be on the doorstep to a new and different experience. Being very old is to be on the move to a better place, land, or

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dimension – towards something light that is full of hope. It is the spiritual and religious beliefs that give the confidence despite adversities and anxiety for dying and the possible sufferings. Being at the threshold and being ready to let go is to be between life and the life hereafter, balancing and being on one’s way to life hereafter, on the move with an hopeful attitude (Study II). The comprehensive understanding was that the meaning of growing old and being very old is to balance between what one was and how one has lived one’s life and to reshape one’s perception of self to restore self and one’s identity and to live in hope and being on the move ready to let go when there is time to go. The meaning of consolation when growing very old (Studies III and IV) The meaning of consolation gives an image of being consoled in an overall manner. Belief in God, religion, and spiritual rituals are essential for both the perception of consolation and the experience of consolation. The perception of consolation concerns four categories: God, others, self, and things. Two ways of perceiving consolation is how these entities are experienced as consoling. In other words, the way God, others, self, and things were perceived as consoling varied and was revealed in two different ways. Living amidst consolation in the presence of God interpreted as receiving consolation, being embraced by trust, and being confident in one’s belief. God, others, self, and things all give stability and security in life with the effect of God’s presence experienced as self-evident. The theme “Seeking consolation” is interpreted as being in search of consolation. Consolation is something that one turns to when in distress and that will be found outside oneself. God, self, others, and things give consolation when turned to or when reached out for. However, sometimes consolation is not found (Study III). The meaning of being consoled was interpreted as Feeling whole. Feeling whole is described as the phenomenon being consoled that emerged in the interpretation. It is distinguished from feeling in the form of sensations. Feeling whole is Being connected to self described as living in a spirit of happiness and joy, submitting to pain and fatigue with confidence, thriving in calmness, relaxation and peace, and being in reminiscence, thinking and praying. Feeling whole is Feeling connected to God, living in confidence, receiving consolation in the form of strength and love from God and living in fidelity to the beliefs that are coherent with believing in God. Feeling

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whole is also Feeling connected to fellow beings and the world as mutual connectedness that concerns family, friends, and others that one depends on to manage life. It is to receive love and support and also to be outpouring, being generous and loving towards others. The comprehensive understanding of the meaning of being consoled was interpreted as an immediate experience of hope, being carried and embraced by one’s beliefs in God and supported by the mutual loving care and affection from others and the world, experiencing consolation in the present, being relaxed, peaceful, and full of joy – feeling whole (Study IV).

COMPREHENSIVE UNDERSTANDING The meaning of consolation when growing very old is understood as living in consolation. Consolation as a phenomenon is understood as connected to reflection, reminiscence, and transcendence. Consolation by Norberg, Bergsten and Lundman (2001 p. 544) describes consolation is occurring when a sufferer and a “consoler” are in communion “that brings about contact with the sacred dimension that human beings share and thus with goodness, light, joy, beauty and life”. Consolation entails a shift in perspectives that enables one to experience meaning in spite of the suffering that comes from growing old. In this thesis, the comprehensive understanding of consolation while growing very old is consolation in an over-all manner, living in consolation. Growing very old and being influenced by the deteriorating effects of aging that cause suffering may tempt one to fall into despair. However, through reminiscing, reflecting on life, and transcending and coming in contact with goodness, light, joy, beauty, and life, it is possible to overcome despair. The findings in this thesis point at the reflective activity as a part of growing very old. The reflective activity is found in the balancing act when growing very old. To remember one’s life is to be in contact with oneself, the unchanged part of one’s identity and concerns the perceived body, time, reminiscence, and loneliness (I). This finding can be understood with respect to Ricoeur’s writing about the indirect relationship man has to himself, a dual core of personality. Idem is the part of identity that is alike; it is a sameness that is permanent in time and unchanging. Ipse is the part of identity that is changing; it is a selfhood that is fluid and socially constructed: “Ipse announces itself as idem” (Ricoeur 1992 p. 121). The indirect relationship enables a person to reflect self over self. This gives an understanding of the balancing act in aging that is described

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in Study I where the meaning of growing old is interpreted as balancing sameness and selfhood. In Study II, the reflective activity is understood as stillness with an inner movement, described as an inner dialogue. The reflective activity occurs in a positive and loving atmosphere that is directed to the future in hope. Reminiscence includes reviewing and reconciling life that may change one’s way of reflecting on oneself, one’s relations to others, to spirituality, to God, and to the universe. Studies I, II, and IV reveal a changed form of reflection that appears close to what Marcel (1960) describes as secondary reflection, being in a state where life is enhanced as a mystery, as something that surrounds one and that one stands open to, open to whatever comes. Apprehending life as a problem is to see life and things connected to living as something that bars one’s way, a problem that should be solved (cf. Marcel 1960 p. 83). The primary reflection dissolves the unity of experiences, and life and aging are experienced as problems and broken connectedness. The secondary reflection is a re-establishment of the broken connectedness; it establishes continuity and brings things together (cf. Marcel 1960). It is related to “recollection, inwardness, ingatherness, freedom, imagination and agape” (cf. Randall 1992 pp. 146-150). Secondary reflection is a part of feeling whole and experiencing life and growing old as a mystery, not a problem. Presence means being available in the situation. In an encounter with another being, a relationship arises that “is grounded in a realm of total spiritual availability” (Marcel 1956 pp. 38-40). Marcel further describes that it is the soul that is the key to availability. Unavailability means that the soul is closed off and may collapse into “pessimism, determinism, despair and sometimes suicide” (cf. Randall 1992 p. 187). Availability is directed to everything in life, in the open attitude to others, family, to one’s changed body, time, past life, to one’s attitude to death and to life after death. Marcel means, according to Randall, that human wholeness is grounded in transcendent relationships: “I become most wholly ‘I’ in the presence of Thou through the mysteries of love, faith, trust, fidelity, commitment and hope” (Randall 1992 p. 138). Reminiscence is in the studies interpreted as an important reflective activity when growing old. Remembering oneself as one used to be and being embraced by memories consoles and enables feeling whole. This is vividly described as sensations of “floating back”, “watching a movie”, “being in my childhood”. Being in reminiscence is to reflect and to reconcile with life, to come to a closure. To review and revaluate one’s life

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allows one to work through and integrate self (Coleman 1986) and allows one to confirm a fruitful or regretful life (Kovach 1991). Transcendence is understood as a vital phenomenon in consolation. To transcend self is a human recourse and considered by Reed (1991a) to be specific to very old people as an expansion of their “conceptual boundaries, inwardly through introspective activities and outwardly through concern about others’ welfare” (Reed 1991b). For old people to transcend means to reach out from limits and disability of the body and to find meaning in life. To transcend self is possible through transcending vertically. Vertical transcendence according to Marcel, interpreted by Randall, is to go “beyond communion and to another level of mystery’ (Randall 1992 p. 288). Love is a way to be in communion with oneself and other fellow beings and with the absolute Thou (cf. Randall 1992), in the interview texts often labelled God. It is within love and hope that it is possible to experience vertical transcendence. The vertical transcendence enables horizontal transcendence, a transcendence towards others and the world, nature, and universe. Living in consolation is to transcend both vertically and horizontally: “horizontal transcendence experienced in communion is grounded in vertical transcendence” (Randall 1992 p. 290). On the other hand, Norberg, Bergsten and Lundman (2001) state that one reaches vertical transcendence through horizontal transcendence. Reasonably, horizontal and vertical transcendence is intertwined. Consolation as Being carried The interview texts revealed that to transcend vertically is to be connected and carried by one’s faith in God through confidence and fidelity. Confidence and fidelity are understood as a bond that embraces and gives comfort and consolation. This bond is strengthened by confidence that God’s love will give strength and prayers will be heard. This love is rendered by fidelity – being true to God. Living in consolation is interpreted as being secured and connected to the holy (to love beauty and goodness) “up there” (see Figure 1) through faith that is inclusive and where one is not alone and to whom one is “putting trust in and being-faithful-to” (Cain 1995 p. 168). Connectedness and love are expressed in piety. In accordance with Wust (1964), whom Marcel (1965 pp. 240-241) is referring to, piety is this connectedness that unites man, nature, and the

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spiritual world and is a relation of the soul. It is piety in a childlike attitude towards God, a link that re-enacts on a higher level. According to Wust (1964), “piety reaches its highest point when it is given to the Creator Spirit…as the absolute centre of all ties, woven between particular beings”. The texts reveal piety as fidelity, to be true to one’s beliefs and to uphold the connectedness to God and to others through prayers.

Figure 1. A model for living in consolation while growing very old.

Consolation as Being supported Transcending horizontally is to be connected and supported by fellow beings and connected to the world, to nature, to the universe, and to earth. Receiving love and being outpouring is to be embraced by a bond of love that gives comfort and consolation. It is mutual love and care, rendered and given. Marcel (1982) describes not only connectedness but also an atmosphere of joy and receiving and giving of love that is situated in openness. Living in consolation is also interpreted as being secured and connected to the Holy (to love beauty and goodness) “down here” in nature and the earth (See Figure 1). Goodenough (1998 p. 73) also finds a resemblance to the connectedness to the holy “as man has always sought connectedness with higher powers in the sky or beneath the earth”, recalling the Latin word religio, which means “to bind together again”. Vertical and horizontal transcendence is also an awareness that the earth is our home; we are part of the universe in which we can experience mystery and at-home-ness. Vertical and horizontal transcendence may also sustain

BEING CARRIED

Feeling connected to God

Living in confidence Living in fidelity

FEELING WHOLE

Living in consolation

Receiving love and support Being outpouring

BEING SUPPORTED

Feeling connected to fellow beings and the world

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the very old with a sense of awe and reverence (cf. Otto 1950 p. 13, Kalton 2001 p. 199). This connectedness is revealed in the texts as experiencing God in nature and longing for the earth. Goodenough (1998 pp. 73-75) describes the connectedness as “blessed ties that binds . . . and anchors us. We are embedded in the great evolutionary story of planet earth . . . and this means that we are anything but alone”. This connectedness also resemblances Marcel’s thoughts of fraternity, which links all men together. Connectedness is experienced in openness. Love is unconditional; it opens up and sets free: “The fraternal man is linked to his neighbour, but in such way that this tie not only does not fetter him, but frees him from himself“ (Marcel 1982 p. 147). Living in consolation is to be free, free from the agony of the declining body, free although dependent on others, free to let go of life, free to love: “It is the inwardness (recollected being) we regain through an action which is not only free. It’s freedom itself. The inwardness must be a reciprocal it is a relationship of one individual to another, of I to a Thou. Authentic freedom is experienced in the presence of the other” (Randall 1992 p. 151). Study IV focuses on this issue where the theme feeling whole compresses this attitude. The secondary reflection, the openness and availability, enables one to be connected and consoled. Conclusion The meaning of growing very old and the meaning of consolation when growing very old points at a way of aging into late life interpreted as living in consolation. When balancing the changes in body and life that cause suffering, there may be a temptation to fall into despair. However, growing very old with an attitude of presence and availability opens one to whatever passes in life and allows one to deal with sufferings and losses with confidence. It is possible to overcome despair. Reminiscing, reflecting on life, and transcending are resources when growing very old that were interpreted to be related to consolation Thus growing very old and living in consolation is to transcend and come in communion with the sacred (transcend), with goodness, light, joy, beauty, life, and hope, carried by one’s connectedness to God and supported by the mutual love and affection from fellow beings and the world – feeling whole.

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CRITICAL REFLECTIONS

The idea of movement and activity, despite the straining effect of aging, revealed in Studies I, II, and IV and the developmental aspect of the change in reflection have been addressed in previous studies. Black and Rubinstein (2004) describe that suffering in late life starts a process of re-evaluating and re-integrating self and suffering by maintaining the roles that gave meaning to identity and by shaping a new identity by narrating it. Chater (2002) notes, that in aging, like in a sudden illness, people reshape their understanding of themselves to maintain their identity. Balancing being changed and yet feeling the same coincides with Atchley’s continuity theory (1989). It states that a grand adaptive strategy in aging is to preserve and maintain existing internal and external structures and that continuity is not a static unchanged stage. “..change is integrated into one’s prior history without necessarily causing upheaval or disequilibrium” (1989 p. 183). In Study I, findings describe this attempt as a balancing act in reaching and upholding continuity in the experience of self as identity. The findings are further comparable to the movement between life crises in the integrative understanding of human development described by Erik and Joan Erikson describe (1986). Perceiving one’s body’s weakness and strength is to find a balance in encountering what Erikson calls syntonic and dystonic elements in the last life crisis. The dystonic elements are the changes in body, in time perception, in dealing with bad memories, and in not being connected to others, all changes that can cause despair. Also, Tornstam (1996) in the theory of gero-transcendence describes a final stage in a natural process of aging, a shift in meta-perspective from a materialistic and rational perspective to a more cosmic and transcendent one. In aging, according to Erikson (1997), the foothold to depend on is the basic trust all living humans are graced with. This helps reaching the last stage of development, finding ego integrity and balancing despair and mistrust with integrity and gaining wisdom. Nygren (2006) in his thesis on good aging describes activity as part of an inner strength that is seen in the ability to choose the golden mean – to choose what is good for oneself as well as for others. To grow very old is also discussed as a phase in life when the decline and adversities increase and cause suffering that makes further development impossible – the fourth age (Baltes & Smith 2003). However, Baltes and Baltes' (1990) theory of selective optimization with compensation (SOC) also points at an ability to reflect and adapt and change depending on the

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specific personal and societal circumstances individuals face and produce as they age. Joan Erikson (1997 p. 113) describes the ninth stage of development “when the dystonic elements win out as time goes on; despair is in attendance” and becomes a close companion. She further writes that the basic trust every living person has is a confirmation of hope. To come to terms with the dystonic elements at the ninth stage makes gero-transcendence possible. The findings in the studies in this thesis show that to grow very old and live in consolation is one possible way to experience life when growing very old. It is possible to transcend adversities and live life in a very joyful, relaxed, and positive atmosphere.

METHODOLOGICAL CONSIDERATIONS

The trustworthiness of a qualitative study depends on credibility, reliability, confirmation, and transferability of the findings. According to Morse et al. (2002), trustworthiness calls for rigor in every step of the process of research. This may be reached by verification strategies inherent in each qualitative design. On the other hand, Morse also points out that it is the research text’s quality that counts: “excellent inquiry is stunning: the arguments are sophisticated, complex yet elegant, focused yet profound, surprising yet obvious” (p. 51). How this is achieved is not mentioned. The process of designing and planning The Umeå 85+ Study took place before the author of this thesis was part of the research group. The initial process was a theoretical investigation on the literature concerning aging and aging experiences and developed into using several scales assessing lived experiences relevant for aging and an interview guide with issues related to growing old. In a qualitative study, it is important to find an adequate sample that provides the researcher with data that is rich and varying. An appropriate sample is to have participants who best can supply information of the phenomenon under study (cf. Polit & Beck 2004). The quality of data in Study I is trustworthy taking into account that the 15 participants were all 85 years old and they were therefore regarded having undergone a progress in aging and perhaps sharing similar as well as different experiences that would give good narratives on growing very old. In Study IV, the sampling of interviews from those very old people who scored highest on the STS

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was done to find rich and deep interviews. This selection may however have given information about perceptions and experiences of consolation less varied in breadth. Further studies on interviews with people rating low on the STS probably will contribute to a wider understanding of consolation. The findings in the studies presented should be considered credible and reliable when taking into consideration that the participants’ health was rather good and they all were cognitively alert, although they all were marked by very old age and all had subjected themselves to various tests and assessments of their health that may had been tiresome. Although loneliness, ailments, decline, and death anxiety darken the life of many of the oldest of the old and suicide is a real choice for some, these aspects of aging were not prominent in the studies. It should be pointed out that the interviewees for Studies I-IV were not chosen for their positive outlook on life. Although it was not the intention to look for the healthiest and happiest people, it can be assumed that those who agreed to participate in the interviews enjoyed life in a different way than those who did not choose to participate. To gain qualitative data about the life world of the very old thematic interviews were conducted. The interviews took place in the very old people’s homes and mostly developed into a conversation and in a spontaneous atmosphere (cf. Kvale 1996) to lessen the asymmetry of power between interviewer and the very old person. Interviewing very old people can give an impression that they are vulnerable and easily subject to the interviewers intentions. The very old in these studies were active participants. Russell (1999) found in a study on interviewing older people that they exercised considerable power over the interview and were reluctant to end the session. Also Gibson and Aitkenhead (1983) found that physical and mental frailty led to few difficulties and the old interviewees easily talked about emotional and threatening topics. They were also highly cooperative and interested in taking part in the interview. Kvale (1996) states that an interview can be a rare and enriching experience for the interviewee when it is well conducted. It is also found that older adult’s narratives are of better quality than younger people’s narratives (Pratt & Robins 1991). This was also the experience in most of the interview sessions with the very old participants in this study. The interviews were of good quality taking into consideration the advanced age of the participants. The dialogue during the interviews was free and unstructured and often led to long narratives about the old person’s life. As interviews are created jointly with the interviewee

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(Mishler 1986), there was an effort from the interviewer to be open and receptive to what the very old person was sharing. It also required listening to the narratives without interrupting and being prepared to sit for a long time and listening to the silence in the room or the tick-tock of the clock on the wall. Silence can sometimes be very informative, creating an atmosphere that gains the quality of the interviews. A considerable explication about the findings of religious content is that the very old were brought up in religious surroundings. Many participants were members of Christian churches and congregations, although not all were churchgoers. This was revealed in the interviews although it was not especially asked for. In this area of northern Sweden, there is a strong religious tradition. Many beliefs and values in the oldest generation have been shaped by a faith in God and close contact with the church, especially the revivalist movements in this area during their childhood and adolescence (Wikström 1975). In Studies III and IV, it may be considered that the word “consolation” (tröst) was associated with religious consolation since the word “consolation” had been so closely connected to religion all their lives. Until 1942, in Swedish liturgy the minister thanked God for the Word that consoles, teaches, and warns human beings (The Church of Sweden Lectionary 1942). Consequently, the term “consolation” is often used in religious and spiritual writing. Many hymns also are about consolation, giving the word its religious connotation and its connection to religious faith. This may also explain why the interviewees who talked about absence of consolation in some cases regretted that they had no faith. In phenomenological hermeneutics, the aim is to illuminate the meaning of phenomena. Thus the subject is not in focus. The interpretative process of explication and understanding of what the text talks about has it aim to uncover and illuminate the phenomena and give a direction for a possible way of being in the world. This thesis focuses on being very old and how consolation works when being very old. The illumination of the phenomena started in the interviews with these very old people and end through the analytical process: naïve understanding, the themes in the structural analysis, the critical interpretation guided by the researchers pre-understanding and appropriate literature in a comprehensive understanding. This understanding may be de-contextualised from this context and further re-contextualised in another context. The meaning cannot be transferred as such (Ricoeur 1991 p. 289).

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In phenomenological hermeneutics, pre-understanding is considered an asset. To account for pre-understanding, Gadamer (1997) adopts an approach that let the world show itself and challenges existing horizons and prejudices. In this thesis, the studies challenged the researcher’s prejudices of aging and of growing old. From being dominated by perceptions of growing old as a process of deterioration to perceptions of aging as a complex and demanding as well as thriving stage in life. It was important to be open to what the participants wanted to tell about their lives and experiences of growing old and of consolation. Pre-understanding has its ground in tradition and context that is familiar to the researcher and it may encourage and hinder understanding (Nyström & Dahlberg 2001). This author’s religious background in childhood has facilitated the understanding of the religious language that was used by the participants. This background may also hinder understanding and shaded over other possible ways of understanding the meaning of growing old. Implications Growing very old means to be dependent on others, this perhaps leads to frequent encounters with various caring organisations. Attitudes towards aged and aging in nursing are decisive for how the old person is met. Consoling care is to be open and available in the situation when meeting the old person. It is important to see the person behind the mask of aging. It means giving time and place to meet and open one’s heart to listen and feel the old person’s needs also to be open to what one perceives. What happens to me now when this old person is looking at me? Do I really know what she/he wants and needs or am I assuming something out of my own prejudices? Nursing care may cause suffering besides that what comes from aging or diseases. Consoling care means to act so that one is protecting the old person’s capacities. For nursing, there is a task to find means to counteract ageist attitudes. This can influence further research on a professional and an organisational level by looking into the knowledge of aging and attitudes towards old persons. The religiosity and spirituality found in the studies are seemingly of importance. To deepen the knowledge about spirituality, its occurrence, and nature among very old persons, and also taking in account in gender perspectives - both in and outside religious terms- may be an important area to investigate further. There is also a need for actions that encourage one to experience late life as rewarding and positive. On a personal level, the old people may be

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offered possibilities to learn about ageing and “how to grow old” – e.g., the importance of reminiscing. Developing health centres for old people and creating living conditions that help them live in surroundings that support connectedness are also important. Furthermore, by encouraging activities that support transcendent perspectives on life, the elderly can experience life in a positive way. This may encourage spiritual and religious activities besides Christian activities, activities such as art, music, literature, film, and being in nature.

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SVENSK SAMMANFATTNING

Denna avhandling är del av Umeå 85+ studien som har en salutogen ansats och avser att beskriva det goda åldrandet och hot mot ett gott åldrande. Avhandlingen är även del av en större studie om tröst vid Institutionen för Omvårdnad vid Umeå Universitet. Perspektivet i denna avhandling är den levda erfarenheten hos mycket gamla människor. Att åldras och nå en mycket hög ålder innebär att eventuellt lida av både långvarigt och omfattande kroppsligt och själsligt förfall, tidigare och nya sjukdomar och en ökad risk för svårigheter och förluster i livet. Åldrandet kan trots det även innebära en möjlighet att utvecklas, att mogna och nå visdom. Det är dock det lidande som förluster och svårigheter i åldrandet medför som gör trösten viktig i åldrandet. Det övergripande syftet var att belysa innebörden av att bli och vara mycket gammal och innebörden av tröst när man blir och är mycket gammal. Deltagarna i studien var personer som fyllt 85, 90 eller var över 95 år gamla och som bodde Umeå år 2000. Vidare krävdes för deltagande att deltagarna klarade av att besvara ett frågformulär av Likert-typ och att de hade krafter och förmåga att deltaga i narrativa tematiska intervjuer. Avhandlingen omfattar fyra studier baserade på dessa intervjuer. I studierna I, II och IV analyserade texten från intervjuerna med hjälp av fenomenologisk hermeneutik. I studie III analyserades data från intervjuerna med hjälp av kvalitativ innehållsanalys. Syftet för studie I var att belysa innebörden av den levda erfarenheten av att bli mycket gammal relaterad till de förluster och vinster som finns i åldrandet. Femton intervjuer med personer 85 år gamla analyserades. Den sammanvägda förståelsen av innebörden av att bli mycket gammal är att : bibehålla sin identitet trots de förändringar och förluster som åldrandet för med sig, vilket innebär att balansera i en tillvaro av förändring och ändå känna igen sig själv - att vara förändrad och densamma. Denna förståelse baserades på fyra teman: att balansera svaghet och styrka, att balansera att tiden går långsamt och samtidigt rinner bort, att balansera försoning och ånger i livet, att balansera samhörighet och ensamhet. I en ännu högre ålder har livet förändrats och påverkar den levda erfarenheten. I studie II analyserades intervjuer med 12 personer som var mellan 95 och 103 år gamla. Den sammanvägda förståelsen av analysen tolkades och formulerades så att: innebörden i att vara mycket gammal är att leva i hopp och att vara på väg. Denna förståelse baserades på två teman.

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Temat, Att vara i stillhet och i rörelse, vilket omfattar att vara i sin åldrade kropp, oförmögen att röra sig och att var i en stillhet inom personen upptagen av en inre rörelse i form av att minnas sitt liv, tänka, reflektera, försonas. Temat, Att stå på tröskeln, vara på väg, redo att släppa taget innebär ett varande av fridfullhet och ha en känsla av förtröstan trots en ängslan inför döendet. Studierna III och IV omfattar fenomenet tröst. I studie III beskrivs hur personer 90 år och äldre uppfattar tröst. Genom en kvalitativ innehålls analys av svaren på en specifik fråga om tröst framkom att uppfattningen om tröst kunde fördelas på fyra kategorier, nämligen: att få tröst från Gud, att få tröst av andra människor, att trösta sig själv och att få tröst av saker. Kategorierna kunde dessutom organiseras under två teman: Att leva omgiven av tröst i Guds närhet och Att söka tröst. De flesta intervjuade uppfattade tröst som en religiös tröst. Detta kan förstås ur perspektivet av att de var uppvuxna under en tid och i ett område där religiositeten varit starkt förankrad. Ordet ”tröst” var därför nära kopplat till religion. Syftet för studie IV var att belysa innebörden av att vara tröstad när man är mycket gammal. Intervjuer med 13 personer över 85 år som svarat på en själv transcendens skala och fått höga värden analyserades med fenomenologisk hermeneutik. Den sammanvägda förståelsen av att vara tröstad är: en påtaglig erfarenhet av att vara buren och omsluten av en högre makt, Gud, understödd av den kärleksfulla omsorgen och tillgivenheten från andra och från världen - avslappnad, fridfull och full av glädje och hopp. Tolkningen baseras på huvud temat: Att känna sig hel, som omfattar tre teman. Temat Att vara i kontakt med självet, som baserades på fyra subteman, nämligen, Att leva i en anda av glädje och lycka, Att vara i förtröstan underkastad smärta och svaghet, Att blomstra i lugn, avslappning och frid och Att vara i sina minnen, tänkande och i bön. Vidare, temat Att känna sig förenad med sin nästa, andra varelser och världen, som omfattar två subteman, nämligen, Att ta emot kärlek och stöd, och Att vara utgjutande. Slutligen temat Att känna sig förenad med Gud, baserad på två subteman: Att leva i förtröstan och Att leva i trohet. Innebörden av att bli och vara mycket gammal och innebörden av tröst tolkades till att leva i tröst. Det lidande som kroppens förändringar innebär kan vara förenat med att komma i förtvivlan. Dock, kan innebörden av åldrande som att leva i tröst – förklarad som att leva i en atmosfär av närvaro och öppenhet inför vadhelst livet kommer att bära med sig och underkastad lidande och förluster med förtröstan på en Gud, eller högre makt - förekomma förtvivlan. Att minnas, att reflektera över livet och att transcendera är resurser som i åldrande till hög ålder tolkades vara relaterade

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till tröst. Således är att bli och vara mycket gammal och att leva i tröst att komma i kontakt med det heliga, med godhet, ljus, glädje, skönhet, liv och hopp. Buren av kontakten till Gud ( eller en Högre makt) och understödd av kontakten med medmänniskor, andra varelser och världen.

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ACKNOWLEDGEMENTS

This study was carried out at the Department of Nursing, Umeå University. I am very pleased to have this opportunity to express my gratitude to so many persons who directly or indirectly have been a great recourse for me during completing this thesis. First, I would like to express my gratitude to the participants in the Umeå 85+ Study, especially to those very old women and men who took part in the interviews and for inviting me in into their lives and shared there experiences, thoughts and reflections on life and aging. I would further like to express my sincere gratitude to my supervisor Professor Berit Lundman, thank you for believing in me and for being of great support during these years. I always felt strong and encouraged after every meeting with you about the studies, and when writing this thesis. To my co-supervisor Professor Astrid Norberg. Thank you for sharing your knowledge and your expertise. Working with you have been very important for me and for my development as researcher. To my colleagues Lena Aléx, my room mate, thank you for your support and for the many laughs and discussions we have had. To Björn Nygren, one of my co-authors in paper III, thank you for the support and encouragement I always have felt from you. To all doctoral students with whom I have shared so many seminars. Thank you for contributing with your time, reading manuscripts and with your encouraging interest and significant questions. To Professor Yngve Gustafson and other researchers and doctoral students involved in the Umeå 85+ Study. Thank you all for interesting discussions and a good time at our meetings. To researchers and doctoral students involved in The Consolation Study, Anna Söderberg, Vera Dahlgren, Charlotte Ångström Bergstöm and Elisabeth Lindahl. Thank you for sharing your knowledge and for inspiring discussions about consolation.

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To Inga Greta Nilsson, the one and only, thank you for how you always having time for listening, doing, arranging and for knowing ‘Everything.’ To all the staff at the Department of Nursing, among you I have found so many friends. Thank you all for the laughs and stories we have shared at the coffee-table. I have felt your support in every “How are you?, “How is it going?”. Thank you, Åsa Hörnsten, for your encouragement. Thank you Ann-Lousie Glasberg and Outi Häggqvist my fellow-countrymen, for your friendship and support. Last and most of all my family. Thank you, Christian, my teen-age son, who helped me with completing some tables and figures on the computer. To my husband Bruno, the best choice I ever made in life was to meet you, my fellow wanderer in this life and –I am sure - beyond. Thank you for your unshakable belief in me and my possibilities to bring this thesis to a conclusion.

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