Participant description
Among the 40 eligible residents identified in total, 13 Chinese and nine Swedes consented to participate(See table 1 for description of the participants’ demographic characteristics).
The mean age of the Hong Kong and Swedish participants was 82.6 years (ranged from 75 to 92) and 92.4 years (ranged from 83 to 96), respectively. The Chinese participants have lived at their LTCF on average for 10.5 years(ranged from five to 18 years), while the Swedish participants lived at the LTCF for a shorter period, on average, 3.8 years (ranged from one to 14 years). Eight Chinese and five Swedes were widow or widower. On average, each participant had 2 children.
Nine of the Chinese were diagnosed with cancer such as lung, brain or colon, three had a stroke, and two were bed-bound. Most of the Swedes suffered from the age-related health issues such as heart conditions, lung diseases, and mobility problems. All participants lived with their family before moving to the LTCF because of their poor health and increasing need for assistance in daily activities.
Thematic overview
The purpose of this study was to describe EL as experienced by Chinese and Swedish older adults living in LTCFs and the way they dealt with it. The overall theme that described both Chinese and Swedish older adults experience was “overcoming EL”, which consisted of two themes: “feeling EL” and “self-regulating”. As the participants faced functional decline (e.g., frailty, illness) and their consequences (e.g., inability to care for oneself, perception of impending death), they realized the inevitability of these experiences and admitted it was part of the ageing process similar to that of death and dying. Illnesses, frailty and the ageing experiences represented challenges to both groups of older adults in this study and heightened their awareness of the self. This struggle engendered spiritual and existential distress among them. Their experiences were captured in these four sequential themes: loss of control of life, failure to be understood, experience a sense of isolation, and inability to identify meaning in their lives. Recognizing that little can be done to change the trajectory of their decline, the participants opted to accept and adjust how they feel about their situation. This act of self-regulation involved four steps: accepting the reality and reframing, reflecting the self, quest for meaning and redefining the success in life. The process of self-regulation makes the older adults adapted and reduced the intensity of the sense of meaningless and being existential lonely. Figure 1 shows all the key themes and subthemes identifying in this study and below is an elaboration of the themes.
Theme 1: Feeling EL
In overcoming EL, the participants must first experience it. Both Chinese and Swedish participants reported feeling worried, frustrated, and depressed as familiar roles and life goals were disrupted. Some participants were in despair because their life was nearly coming to an end. They had accomplished their life’s tasks when they were younger, and now they felt useless because others or even they themselves assumed they could no longer contribute. For example, because their children were independent and able to manage their own lives, the Chinese participants no longer felt they were contributing to their family. As a result, they felt a profound sense of loneliness despite having family and friends around. They felt deserted and helpless because the experience of EL led to emotional instability, insecurity, and negativity. This experience was characterized by the loss of control of their life, failed to be understood by others, a growing sense of isolation, and failure to identify meaning in their lives.
Loss of control of life
Both Chinese and Swedish participants felt they were losing control over their own lives as they experience physiological decline. The feeling of powerless took over, and they felt vulnerable.
…I cannot do what I really would like to do because of my poor health, I am forced to be sedentary for most of the day…I can’t control. (Swedish participant 5)
I am old. Life is never be the same as before… with my poor health, I am unable to bathe by myself, not saying to go shopping, it is a great loss to me, …I have to depend on the aids here…Being immobilized, I even can’t go to the toilet by myself and I wear napkins all the times, I have no say, no control at all… (Chinese participant 6)
For some participants, they felt that they have lost the right to make choices about their lives when others, like caregivers or family members, would assume control and made decisions for them.
Sometimes I want to take a nap but they [nursing aids] say I am not allowed to... because I couldn’t fall asleep at night if I slept too much during the day! But what is there to forbid me to do things at my choice? (Swedish participant 2)
They [the nurses] take charge of everything, they decided when and what I should eat, when I should get up and sleep, when I should void, when I should bathe, they decided everything… I lost myself… I would question myself who I am? (Chinese participant 6)
Failure to be understood
Most Chinese and Swedish participants explicitly referred to various forms of negative affect, including feeling down, miserable, or sad, because they felt like no one understood them, which made it impossible to feel connected to others.
Have you ever been in a situation when you felt like your words couldn’t get through, not being understood even talking to your own children and to your close relatives? Like you were expressing yourself over and over again, yet you were being misunderstood by your loved ones?... I was miserable, upset, woke up at four in the morning and looking at the ceiling. (Chinese participant 1)
The loneliness, I don’t want to show it my friends much as they don’t understand, I feel bad to let them know that I have the feeling of uselessness, of course, to them, this is it, this is life, they say, ‘Don’t cry ,don’t cry… don’t be sad,’ and then so what?... they don’t understand, I am still on my own, I am sad. (Swedish participant 3)
Experience a sense of isolation
Both Swedish and Chinese participants felt isolated and distanced from others and questioned where they belong.
My husband and two of my sisters do not live any longer. It is sad. They have gone. ...and I feel sorry for myself sometimes being the last one left in the family …There is nowhere to belong. (Chinese participant 10)
My children all have their own families and all managing on their own… I had two best friends when I was young but they are all gone leaving me alone. I feel lonely in the sense that nobody needs me… I am alone, it should be the time for me to go now… (Swedish participant 9)
In a few cases, Chinese participants felt depressed despite the fact that they still have opportunities to spend time with their children.
“I have to take care on my own well while I am here. If anything gone wrong… it would be the burden to my daughter. She doesn’t visit me often…, she has two kids at home. She has her own job and her own family to look after… but I valued the time when she visited me with her children…sometimes I think when I have nothing that I can do for her… even make her a cup of tea, that means she doesn’t need me any longer…” (Chinese participant 13)
While some Swedes felt lonely and ashamed of having no friends.
My children always comment on my lack of friendships and do not make new friends… feel lonely that my best friends died and I have nobody to talk to. I would like to get away from everything. Close my eyes and get myself away and rest from everything. I don’t want to be here anymore. I saw the gate of heaven, I saw it. Let me in. No, they didn’t let me in. (Swedish participant 1).
Inability to identify meaning in their lives
Some of the Chinese and Swedish participants have lost the life meaning. Their vision of the reality and the future were uncertain and darkened. And they seemed to “see” the reality was how little, unworthy and insignificant they were.
I know I’ll end up in the hospital…no future at all… Well, I don’t have to think about my children and grandchildren as I couldn’t help much in the family, I am useless now… I doubt about my ability to do anything more for them … My life is over (Chinese participant 9)
I am old. Life is never be the same as before… it is different. With my poor health, it seems I have lost my self, being old is of no use… no meaning at all (Swedish participant 7)
It is pointless, no meaning at all… there is nothing that I can do for myself… getting up every morning and there is nothing to do, but there are things that the others told you to do… (Swedish participant 9)
Both Chinese and Swedish participants in our study exemplified EL as a human condition and revealed similar properties. Both groups experienced EL that others were unable to understand, resulting in feelings of loneliness and loss of meaning in life. These experiences varied with cultural and life contexts, in which the sense of meaningful existence for the Chinese participants tied to kinship and to the families while the individual self as a unit was valued for the Swedes and linked up with friendship. Next, the ways in which the Chinese and Swedish participants coped with EL will be highlighted.
Theme 2: Self-regulating
When our participants’ sense of EL intensified, they began to challenge the meaning of their life and their identity. They felt anxious when they reflected issues related to purpose in life or self-identify. This was especially common when they experienced physical, emotional, or spiritual instability. As the older adults found that it was something that couldn’t be changed and beyond their control like their aging process, they found that they have to deal with it. The process of self-regulation occurred as the older adults experience EL and decided to accepting. This was the time when the older adults learned about EL and developed strategies to cope with it.
When I feel lonely, I often tend to beat myself up and think that something is just wrong with me. The more alone I feel, the more I start to have thoughts of not belonging or of feeling rejected by others… These thoughts further provokes my own criticism of being useless. Is that all in my life?…I think it is my internal enemy that making me unhappy… The more unhappy I am, the more I avoid others and the more I isolate myself and in a lonely state…but it can’t help me out. I have to do something… (Chinese participant 13)
This is the fact that I am old and sick…, something I can’t control…why not shifting to the things that I can do for myself now, not to think about the past nor the future… Just live in the moment. (Chinese participant 3)
Most of the Chinese and Swedes were struggling with their identity and were searching for a core sense of themselves.
I realized my inadequacy when I am old and asked who I am? (Swedish participant 4)
When the participants decided they would no longer suffer from EL but live with it, the process of self-regulating occurred, where the participants began to accept and reframe the experience, examine oneself and one’s life, quest for meaning, and re-define the success in life. This process led the participants to unfold their life experience and re-examine themselves, where they looked from within and see their ‘clearer self’, thus enabling them to develop a sense of well-being.
Accepting and reframing the experience
Most of the Chinese and Swedish participants coped with their experience EL by accepting their own limitations, weaknesses, and loneliness, and that change was needed. They paid attention to the present moment rather than being trapped in the past and worried about the future. They accepted EL in a new way by recognizing it was unavoidable and appreciated its positive aspects and reframing EL as opportunities. They were then able to experience life more fully and to become a more whole human being.
I am old… Life will never be the same as before, this is it, I have to accept this is the “present me”, it always be different from the “past me”… It seems that I have lost my world as a rubbish when depending on others…. but when my grandkids called me grand-pa… I am excited, I am still their grandpa, I didn’t lose my identity as a grand-pa…I should enjoy every moment with my grand-kids. This is me I enjoyed it. (Chinese participant 3)
The loneliness is sometimes hard to cope especially in the evenings, I know I would end up at the hospital…Well, I am by myself here. It can be positive of being myself here. I am alone to think through my own life… It is very good to get these ‘quiet’ times and think through who I am. (Swedish participant 5)
I have to endure and live with what cannot be changed. (Swedish participant 8)
Examine oneself and one’s life
Being alone has been reconsidered as an opportunity to not only reflect about the past and the future, but also examine their own thoughts and feelings and reflecting on what they meant to them.
I think being alone might be a chance for me to reflect, to think about the past and redefine my life purpose, not just sit there and wait for nothing,… I went to the Hong Kong Museum of Coastal Defense to recapture my old days. I am proud to tell my grandson that I was a soldier in the Chinese Civil War in the 1940s. I am satisfied with my past accomplishment and my grandson said, my grandpa fight in war. (Chinese participant 8)
It can be a sense of positive loneliness. The positive thing is that I can be alone and think through life. It is very good to get these times and think through about who I am(Swedish participant 5)
I think this might be a chance for me to reflect, think and plan my remaining days...in which I have nothing more to lose. (Chinese participant 11)
Quest for meaning
Several Chinese participants found ways to feel satisfied and regain meaning to their lives. As they reflected on the experience, they recognized that EL was unquestionably challenging, and they shared that it created a time for personal reflection. The participants learned to accept their EL and their feelings toward it. In doing so, the participants regulated their negative emotion and made meaning.
I found it is no use to linger on the anger or get depressed, sad to being old and lonely. To me, to make my daughter worrying about me is a sin… I should focus my days on the things that I could do… it is more meaningful to me to live in a moment. (Chinese participant 13)
I let myself be alone but not lonely. Letting myself be this way doesn’t mean hiding from pain, loss or misery. It just means I go with the present experience and make meaning for my existence. When the sad things came, I opened up to them and let them in—to face it. I would choose to get out of here and it is my new way of control (Chinese participant 12)
The Chinese participants took the form of self-appraisal and exploration of self-worth through acknowledging their effort of contribution to their families and others. While the Swedes searched their meaning through their own self and socializing with friends.
I work in the support groups here. I hope to help the others go through the experience, sadness, happiness, sorrow, hoping what I have used to support myself in those days might help them too, we have to accept we are old and have to be by ourselves. It is meaningful that I am not useless… still I can contribute… despite I don’t know how big the contribution is… it doesn’t matter. (Chinese participant 4)
I wake up every morning and thinking I am glad that I can get up and make myself a cup of coffee. It is good enough for myself now. (Swedish participant 8)
I do not feel lonely because I have friends around me here when having dinner for example and we have activities as well and it is nice and worth to spend time with friends, their presence was my support. I found my own meaning of life is to find happiness with friends (Swedish participant 1)
Being able to ascribe meaning to the experience not only helped them to identify their new reason for living, but also give them back control of their own lives. This, in turn, reduced their sense of EL.
Re-defining the success in life
Finally, the participants saw that it was time to redefine success in their own terms. For many participants, their ‘life-is-good’ perspective was entrenched within memories of past success and the present challenge.
I come to the realization that unless there is something positive, um, “life-is-not-so-bad”, that I have to just go on with what I have. There are still times that I have down days of course. That’s life. (Chinese participant 1)
In particular, the Chinese participants defined their success beyond the sense of their own and found comfort in the success with their family and to the others.
I know I’ll end up in the hospital…no future at all… Well, I don’t have to think about my kids and grandchildren in fact they are doing well on their own. I established the family by my own pairs, not very well-off though, it is my success, I define my success is not only to my own but to my whole family. I don’t take the negative so seriously. What is far more important is love and my family… I can’t afford to lose more… (Chinese participant 7)
I spent considerable time in the groups such as Christian group, not always depended on others. I think “something good has to come from this experience”. Actually, I didn’t know what good it would be, but the idea that I could share my experience, so that others who joined this group do not have to go through the same thing as I did in the past, this experience gave me considerable comfort, it make senses of my worth. In a way, it is my success. (Chinese participant 9)
While some Swedes interpreted their success from an the ‘individual’ lens.
I know that my time is short… even if I am stroke and am alone here…No, I don’t see the experience as a bad thing because, it, what I had in the past was nothing. I was nothing before then, you know. Then, why bother! I want to make clear that my acceptance does not mean giving up or being passive. It is my success to think good about myself(Swedish participant 7)