INTRODUCTION
Spouses of people with amyotrophic lateral sclerosis (ALS) are faced with an increased burden, as the partner becomes increasingly handicapped (Chio et al., Reference Chio, Gauthier and Calvo2005). ALS is a neurodegenerative disease that causes impairment of motor function, including paralysis in the upper and lower limbs as well as the bulbar muscles. Weakness, spasticity, dysphagia, dysarthria, and respiratory failure are common symptoms (Wijesekera & Leigh, Reference Wijesekera and Leigh2009). There is still no cure, and survival is limited to a few years (Chio et al., Reference Chio, Logroscino and Hardiman2009). This causes a great deal of stress among spouses, who must provide physical, psychological, and existential support to the ill person throughout the course of the disease. To cope with this, spouses need to find strength and meaning in their life situation. These aspects need to be highlighted, so that nurses and other staff can obtain tools for providing care and support to the whole family.
Issues of meaning and meaninglessness are the central domain from a spiritual, religious, or existentialistic point of view (Ferrell et al., Reference Ferrell, Smith and Juarez2003; Yalom, Reference Yalom1980). Clinically, meaning-related issues have drawn much attention during recent years (Breitbart et al., Reference Breitbart, Gibson and Poppito2004; la Cour & Hvidt, Reference la Cour and Hvidt2010; Mackinnon et al., Reference Mackinnon, Smith and Henry2014), as meaning seems to be the strongest predictor of quality of life (QoL) in palliative care settings (Brandstatter et al., Reference Brandstatter, Kogler and Baumann2014; Cohen et al., Reference Cohen, Mount and Tomas1996). Meaning is also strongly connected to such concepts as sense of coherence (SoC) (Antonovsky, Reference Antonovsky1987). Elements that facilitate meaningfulness may include comfort, hope, the possibility of retaining one's everyday life, and being an active person (Milberg & Strang, Reference Milberg and Strang2003).
Spouses are in a vulnerable and stressful situation when caring for a seriously ill family member; they must handle both their own and the patient's sorrow. To add to the substantial practical problems, this may be the spouse's first concrete encounter with death and dying (Andershed, Reference Andershed2006). They experience being quite unprepared for the suddenness of their new role and the level of responsibility entailed in caring for a seriously ill family member. They also feel inadequately prepared for the unpredictable nature of the illness (Melin-Johansson et al., Reference Melin-Johansson, Henoch and Strang2012).
Being a spouse of a person living with ALS is demanding. Spouses need to manage everyday life to cope with their life situation; they consider that this is facilitated by living in the present (Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012; Oyebode et al., Reference Oyebode, Smith and Morrison2013) as well as by acceptance, understanding, and support from family, friends, and authorities (Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012). Some feel they have gone from being a spouse to being a carer (Aoun et al., Reference Aoun, Connors and Priddis2012). Burden, lack of free time, and deficient support from others might hinder their managing of the situation (Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012). These spouses show lower QoL than the general population (Jenkinson et al., Reference Jenkinson, Fitzpatrick and Swash2000; Olsson Ozanne et al., Reference Olsson Ozanne, Strang and Persson2011). Their mental QoL might deteriorate over time, and, compared to the patients, they show less satisfaction with important aspects of life—marriage, family, and friends (Olsson et al., Reference Olsson, Markhede and Strang2010a ). The burden increases when the patient's health worsens and the need for care increases. Spouses lose their former lifestyle (Chio et al., Reference Chio, Gauthier and Calvo2005; Mockford et al., Reference Mockford, Jenkinson and Fitzpatrick2006), worry about the future (Whitehead et al., Reference Whitehead, O'Brien and Jack2012), and might feel anger because the disease hinders them and robs them of their future (Oyebode et al., Reference Oyebode, Smith and Morrison2013). Feelings of hopelessness are common. The disease is sometimes described as removing hope even more than cancer does, since no cure exists (Aoun et al., Reference Aoun, Connors and Priddis2012; Whitehead et al., Reference Whitehead, O'Brien and Jack2012).
Our study was inspired by Antonovsky's concept of sense of coherence, which is the core of the answer to the salutogenic question. Comprehensibility, meaningfulness, and manageability are all hallmarks of SoC. Meaningfulness, as examined in our study, implies that people have something in life that engages them and is important in both the emotional and cognitive sense (Antonovsky, Reference Antonovsky1987). Since ALS affects all family members, not only the ill person, it is necessary to support them all (Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012; Williams et al., Reference Williams, Donnelly and Holmlund2008) from a holistic viewpoint with psychological, spiritual, and physical support (Nolan et al., Reference Nolan, Kub and Hughes2008). Manageability and coping strategies have been examined, but there is still need for a deeper understanding of how spouses of people with ALS find meaning in life, in order to increase understanding and develop the care of these families. The aim of the present study was therefore to illuminate the experiences of finding meaning in life among spouses of people with ALS.
METHODS
Design
This study is part of a larger project aimed at illuminating the three aspects of SoC—manageability, meaningfulness, and comprehensibility—among people living with ALS and their spouses. Previous studies have examined manageability among the spouse–patient pairs and finding meaning among patients (Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012; Ozanne et al., Reference Ozanne, Graneheim and Strang2013). Our study was performed to reveal experiences of finding meaning among spouses of people living with ALS. It is a qualitative, descriptive study, based on qualitative content analysis of individual interviews.
Participants
The participants were married to or cohabited with people with probable or definite ALS according to the El Escorial criteria (Brooks, Reference Brooks1994), treated by an ALS team at a hospital in southwest Sweden. They were recruited from a previous study (Olsson et al., Reference Olsson, Markhede and Strang2010b ). The inclusion criterion was being a spouse of a person who had received a diagnosis of probable or definite ALS at least six months before entry, without any other terminal disease, and without being in a late terminal stage of ALS with severe respiratory insufficiency or loss of intelligible communication. Some 19 spouses were eligible for the present study. Repetition in responses began to occur after 10 interviews, but to avoid losing additional information, the number of interviews was extended to a total of 13 spouses (8 men, 5 women). Participating spouses were 38–87 years old (median = 68 years), and all lived with the ill person. The range of disease duration was 2–13 years.
Data Collection
Data were collected during the Spring of 2007. Interviews were semistructured, tape recorded, and conducted by the first author (AO). Questions were asked concerning meaningfulness, for example: “What gives you meaning today?” and “What do you experience as being especially important in your life?” The interviews lasted 20 to 83 minutes (median = 48) and were performed in a place chosen by the spouse; either in an undisturbed room at their home or at the hospital.
Analysis
The interviews were transcribed verbatim by the first author (AO), and the text was randomly doublechecked against the tape recordings by the last author (SS). The text was subjected to qualitative content analysis, focusing on similarities within and differences between parts of the text (Graneheim & Lundman, Reference Graneheim and Lundman2004). The analysis was performed in several steps. First, the text was divided into meaning units, with each unit related to the same central content and context. Meaning units were then condensed and labeled with codes. The codes were sorted and abstracted into eight subthemes, illuminating threads of meaning running through the codes. Next, subthemes were abstracted into two themes, and finally a main theme was formulated. Trustworthiness was ensured by an ongoing process of reflection and discussion between all authors throughout the analysis, involving a movement back and forth between the whole text and its parts.
Ethical Considerations
The study was approved by the regional ethics review board in Gothenburg, Sweden (approval no. 297-05). Participants received verbal and written information about the study, and their written consent was obtained.
RESULTS
Struggling for Meaning at the End of a Dark Tunnel
The spouses were struggling for meaning at the end of a dark tunnel. Their feelings of limitations and isolations hindered their ability and strength to find meaning in their present life situation and for the future after the partner's death. The main theme was based on two themes: “feeling limited and isolated in the proximity of death” and “finding meaning despite the proximity of death.” These are presented in the text below, and an overview of the main theme, themes, and subthemes is given in Table 1.
Overview of the main theme, themes, and subthemes
Feeling Limited and Isolated in the Proximity of Death
The spouses described how they had been adversely affected by the disease situation and how this hindered them from finding meaning in life. Living with a person who had ALS, and who would probably die in the near future, limited and isolated them from the life they wanted to live. This theme was based on four subthemes: “living an imprisoned life,” “feeling lonely,” “considering life unfair and incomplete,” and “mourning a lost future.”
Living an Imprisoned Life
Freedom was limited for the spouses, and they felt that they lived an imprisoned existence. Because of the disease, they could not get out and be as active as they used to be. It was difficult to get out by themselves, since the ill person needed help at home, and it was difficult to go out together, because the physical consequences of the disease hindered them. Activities such as spending time in nature or traveling were now limited, causing sorrow and a sense of a reduced life.
The spouses felt locked into adapting to their partner's needs. Some chose not to seek support, since they knew that there were no good accommodations for their partner; this decision made them feel even more restricted.
The spouses deprioritized having their own time even though they really needed it. Sometimes there was a desire to just get away and relax. However, the focus was on the partner, and spouses often felt guilty when they complained about their own needs. They lived under daily pressure and felt it was most difficult to set limits. Visits to other family members and friends were obstructed due to the disease, and the spouses worried about not being able to get out at all in the future when the disease had progressed:
You feel limited in a lot of things. You can't do all the things you did before—spontaneous excursions and things like that—but everything gets so tedious. [interviewee]
Feeling Lonely
Knowing that one's partner had ALS brought great sorrow, but also anger that the disease would affect the whole family. The spouses partly tried to hide their sorrow from their partner, because they did not think seeing it would help the ill person. They might cry from loneliness, and they were afraid that they would not be able to take care of the partner in the future. They were also afraid of being left alone when the partner passed away.
Feelings of existential loneliness appeared when spouses did not feel that their partner understood them or when they felt that it wasn't possible for them to talk and share grief with each other, with family, or with friends. They felt they had no support; others did not have the strength to listen to them as much as they needed to talk. Some felt that the marriage was negatively affected when the partner just wanted to have a good time and not talk about the disease and the situation. They wished they could find a way back to each other. Sometimes the spouses were met with anger and silence when they wanted to talk about their difficult life situation. Some also felt that they should support everybody else in their sorrow, but that they got no support themselves. They were standing alone in an exposed situation without the possibility of sharing with people close to them, and were afraid of not getting the support the family needed. Feelings of loneliness also appeared when their adult children did not have the strength to be there for them, but also because the spouses did not want to burden their children with their sorrow. Previous experiences of not getting enough support from family and friends frightened the spouses and made them feel alone:
I probably didn't do anything special then, as I said, cried a lot, without showing it to my wife. [interviewee]
Why was it that you didn't show her that you were sad? [interviewer]
I thought it wouldn't help her. [interviewee]
Considering Life as Unfair and Incomplete
The spouses described feelings of unfairness, since the whole family was affected by the disease. Sometimes questions arose about why the partner had got the disease: “He had been so kind” or “What evil had he one?” The disease was undeserved, and they felt it had destroyed their lives. The meaning of life was questioned. Their thoughts were occupied by feelings of being cheated out of life, and having lost their security. They described negative feelings: life was no longer fun, and most of the parts of life were negative. They felt a great deal of sorrow, and some expressed hatred toward the disease.
Some spouses described a negative ethos even before the disease and said they were weighted down by their “baggage.” If life had been uneventful before the disease, they might feel that they had lost something in life and that they had sacrificed themselves to do things they did not want to do:
I was pissed off and thought life was unfair, why would it hit him right on? (. . .) [crying] because he has always thought of everyone else and been very, what can I say— The family and our child and grandchildren have always been put first, and my parents and his parents and all that. [interviewee]
Mourning a Lost Future
The spouses described how after the diagnosis they were totally devastated and frightened, and their thoughts revolved around when the partner would die. They were constantly reminded of how long it would take and how the journey to the end could unfold. Ambivalent feelings overwhelmed their lives; they partly wanted the ill person to live at any price and partly wished for a the process to be short and without suffering. It was a sorrow to know that the partner would soon die and leave them alone. The disease was a constant threat, and every new symptom caused fear of what would come next. Some spouses associated ALS with a rapid death because of knowledge from other people dying of the disease. They had not anticipated that death would come so soon but also be a long journey.
It could be difficult to think about the future because of uncertainty about how and when the disease would develop. This ambiguity also postponed important dialogues. Some spouses thought they would perhaps think more about the future if they had a different time perspective. They did not care about the future, since there was only one way. At the same time, they also tried to live in the present and not look too far forward.
It was difficult to think about the future because there was nothing to look forward to; it was hard to visualize life after the partner's death. The spouses felt that living life alone would probably be terribly lonely, and some felt they had no strength to live after the partner's death. While the partner lived, the spouse must survive; but when the ill person had passed away, there would be no demands. Life without the partner would be boring, and thoughts arose about why they themselves should live. They said they needed to live on because of their children and grandchildren, but also said they could not live for other people. It was difficult to find meaning in life if they had to be alone. Many things had lost significance, and the spouses did not plan ahead. They also described fear of how they should manage their lives after the partner's death. Some thought it would be better if they were fatally ill themselves, since they had no will to live. They experienced little hope, but much mourning. Some felt that other incurable diseases could suggest hope, but ALS removed all hope:
It's hard to think of the future? [interviewer]
The future, yes, that's what— (. . .) Yes, because the only thing you know for sure is that it can't get better, that there's only one way. [interviewee]
Finding Meaning Despite the Proximity of Death
The spouses found meaning in life despite the proximity of death. Life was more than just the partner's disease. This theme was based on four subthemes: “cherishing one's own life,” “gaining strength from fellowship,” “accepting the present,” and “believing in meaning after the partner's death.”
Cherishing One's Own Life
For the spouses, meaning in life arose partly from getting time for their own activities and having possibilities for recreation, relaxation, and reflection. They needed to get away alone and have their own time, even though this was difficult to put into practice. In order to cherish their own lives, the spouses needed to prioritize what they thought was important for them. Relationships rather than material things were illuminated as meaningful, and they needed to focus on this to maintain quality of life. Becoming stressed over unimportant things was not worth it. The spouses got another perspective on life after their partners became ill, which could be both positive and enriching, despite the negative aspects of the disease. Nature was one important way to attain another perspective; silence and calmness made it possible to set aside feelings related to stress.
Increased understanding of others' life situation and disability grew after the partner became ill. Some spouses also experienced an increased belief in God. Faith could give hope, support, and breathing space in the proximity of death.
For some spouses, their job was an important part of life; it made them happy, and the connection with other people was seminal. For others, work totally lost its importance:
So the forest and nature and stuff are still very important for me, and getting out into nature, preferably alone, and philosophizing and thinking a little, a little more like this. It's a different perspective in a way, with the quietness and proximity to nature. [interviewee]
Gaining Strength from Fellowship
Fellowship and relationships were a high priority for spouses. The family, including children and grandchildren, was a great source of happiness and meaning in life. This gave them the strength to continue to live despite the proximity of death. Not being alone with the disease was a great advantage; they pointed out that it would be worse if they did not have a family. It was also important to know that their children and grandchildren had and would continue to have a great life.
The marriage was highly esteemed. Despite the threatening situation, the spouses found happiness and positive interchange with their partners. It was important to “seize the day” and have a good time together. Meaning in life could come from trying to provide the ill person with as good a life as possible. If the spouse helped the partner to feel better, this increased their own well-being. The spouses and their partners supported and shared thoughts with each other; they found out how important they were to each other.
Friends were also important for spouses' well-being. Friendships imparted meaning and gave the spouses someone to vent with and obtain support from. The spouses appreciated and were made happy by friendships that remained unchanged despite the disease:
So, therefore, I believe we have a great interchange with each other. It's not just a job—it isn't. It's companionship. We have a lot of fun, too, both when we are on our own and also when we meet our friends, and we joke and talk like before, so things are very funny, too. [interviewee]
Accepting the Present
Despite the difficult situation, the spouses could experience a relatively good life. They liked to be at home, they found happiness in their lives, and they had some positive things to look forward to. They thought it was important not to feel sorry for themselves, and they tried to have a good time for as long as possible.
Once some time had passed after the diagnosis, it was possible to enjoy the sun and rejoice with others again. An earlier good life also made it easier to accept the present. The disease created immediacy over doing things such as traveling, which they knew might be impossible at a later stage.
The older spouses thought that it was easier to accept the disease at an older age, since one could expect some disease to arise sooner or later. They were pleased that their own and their partner's health had been good for such a long time, and as long as they both were as healthy as possible and did not get worse, the situation was fine. Some spouses also thought that fate decided what would happen and that all they could do was go along with it.
Even though the spouses accepted the present, they had not abandoned hope. The course of the disease could possibly turn and the condition not deteriorate; the situation could remain acceptable for a long time, and life was not yet over:
But as I said, this destiny— I still think it's a bit decided how it will be and work out, so that it's mostly just to keep up with life. [interviewee]
Believing in Meaning After the Partner's Death
Experiences of a lost belief in the future and no wish of having one's own life after the partner's death changed after a while, and thoughts of a continued life arose. The spouses wavered back and forth in this process, but eventually came to believe in meaning. The decision to live was demonstrated by, for example, acquiring a pet or deciding to keep a summer house.
The spouses could also feel a responsibility to live on because the ill person had tried to make things as good as possible for the spouse, or because they felt they had to carry on due to children and grandchildren. The feeling of being so loved was a positive one, but it could also make it more difficult to end their own life if they wanted to:
But now I feel, now I find out stuff like that (. . .) if my husband's not there anymore, then I'll buy a puppy. We've talked about it many times, because I think I'd have to take care of the dog then. [laughs] Yes, that kind of ridiculous stuff that pops up, because I know my husband would think it's good, this kind of stuff. [interviewee]
DISCUSSION
Our results show that the spouses struggled to find meaning in an exposed situation. They felt isolated in the proximity of the partner's death, and this made it difficult—but not impossible—to find meaning in life.
The spouses described a struggle to find meaning at the end of a dark tunnel. This illuminates the fluctuation between the opposing experiences of feeling limited and isolated in the proximity of death, and finding meaning despite the proximity of death. Some spouses felt they lived an imprisoned life; it was difficult to get out and do things both on their own and together with their partner. They also worried about leaving the partner at home alone. This is in accordance with a previous study illuminating spouses' concerns over the patient's safety and the difficulty of leaving the partner alone at home (Oyebode et al., Reference Oyebode, Smith and Morrison2013).
Meaning and meaninglessness are central from the spiritual, religious, and existentialistic points of view (Ferrell et al., Reference Ferrell, Smith and Juarez2003; Yalom, Reference Yalom1980). Meaning seems to be the strongest predictor of quality of life in palliative care settings (Brandstatter et al., Reference Brandstatter, Kogler and Baumann2014; Cohen et al., Reference Cohen, Mount and Tomas1996), and it is also one of the important domains in a sense of coherence (Antonovsky, Reference Antonovsky1987). It is therefore necessary to study how the spouses of people living with ALS might find meaning in life, as well as the circumstances that might complicate this. Only when these aspects are illuminated will it be possible to support these people on the basis of the situation they are living with. As shown in our study, the quest for meaning is complicated by many aspects: the feeling of living an imprisoned life, loneliness, considering life unfair and incomplete, and mourning a lost future. However, spouses could find meaning if they cherished their own lives, retained good fellowships, accepted the present, and believed in meaning after the partner's death.
Mourning over a lost future occupied a large space in spouses' minds. They were afraid that the partner would die and leave them alone, but at the same time they wanted a short dying process with as little pain as possible for their partner. These results can be compared with a review describing existential, social, and emotional loneliness (Ettema et al., Reference Ettema, Derksen and van Leeuwen2010). It was difficult to see a meaningful life after the partner's death, and it took time to reconcile the imagined experience of being alone. However, for some spouses, it finally became possible to believe in a meaningful life after the partner's death. Other studies show the difficulty with anger and fear about the future (Oyebode et al., Reference Oyebode, Smith and Morrison2013; Whitehead et al., Reference Whitehead, O'Brien and Jack2012), as well as feelings of possible relief over the shortness of the process, because of fear that the patient would suffer (Whitehead et al., Reference Whitehead, O'Brien and Jack2012).
Ozanne and colleagues (Reference Ozanne, Graneheim and Strang2013) also examined meaning in life among the patients in our study. These results were compared with the present study. Uncertainty over what would happen, and when, was found among both patients and spouses. However, the patients worried more about the journey toward death, with aspects such as respiratory problems, while the spouses worried about their future after the partner's death (even though they also worried about the journey). Both patients and spouses experienced hopelessness, and thoughts about death took up a substantial place in their minds. Further, the patients felt that they were prisoners within their own bodies, that they were afraid of losing physical control, and that they were disappointed about being dependent on others. The spouses felt that they were imprisoned in their own homes, that their lives were limited, and they felt guilty if they prioritized themselves in any situation. Both patients and spouses experienced feelings of unfairness over being affected by the disease, but guilt and shame due to the disease were only described among patients. Both patients and spouses experienced existential loneliness if they could not talk with each other. However, fellowship with family and friends, accepting the present, and cherishing their own lives were all important ways of finding meaning in life.
The quest to find meaning can be long when one's partner has ALS, and some might not make it all the way. It is therefore important and necessary to help spouses and give them support along the whole course of the disease process. Our results also demonstrate that the spouses thought much about the future after the partner's death, with feelings of uncertainty, fear, and meaninglessness. It would probably help them in coping with the situation and find meaning in life if they could talk about those kinds of feelings and obtain answers about possible misunderstandings both during the disease process and after the partner had passed away. As shown in this and other studies (see Olsson Ozanne et al., Reference Olsson Ozanne, Graneheim and Persson2012; Ozanne et al., Reference Ozanne, Graneheim and Strang2013), spouses and partners could find it difficult to talk with each other about their feelings and thoughts. Hence, although it might be preferable to provide individual support for spouses, it is also necessary to give spouses and patients joint support and help each to see the other's situation so that they can be there for each other. The patient would also probably be helped if the spouse was supported, both because the patient would feel that the partner was cared for and because the spouse would be better able to manage the situation.
METHODOLOGICAL LIMITATIONS
Data collection took place several years ago. However, since meaning is a general concept that is unlikely to change much over time, this probably did not affect the outcome of our study.
The patients were at different stages of the disease, affecting the spouses' burden differentially. It is possible that our data would have been more focused on certain aspects if all patients had had the same symptoms, but we utilized qualitative content analysis on the basis that everything the spouses had to say was important.
CONCLUSION
Our study illuminates spouses' vulnerability and how they fluctuated between finding meaning in life and feelings of limitation and isolation in proximity to a partner's approaching death. They struggled to find meaning at the end of a dark tunnel, where all they saw was the partner's death and how they would be left alone. However, despite the feeling of living an imprisoned life, loneliness, considering life unfair and incomplete, and mourning a lost future, they could find meaning in life through cherishing their own lives, fellowship, accepting the present, and believing in meaning after their partner's death.
ACKNOWLEDGMENTS
The study was supported by the Ulla-Carin Lindquist Foundation and the Foundation for Neurological Research.
