For most participants, the HF had been a serious event that changed their everyday lives and their ability to manage. Now, 18 months later, the changes in their level of activity due to the HF were a fundamental worry but were becoming part of their being (Table 1). For some, other diseases had changed their possibilities for being active and were now the primary concern. Looking back to how they were before the HF event did not make much sense for some participants. It could be difficult to distinguish what had happened when. Rather than answering direct questions about what their lives had been like 18 months ago before the HF, some participants drifted into stories about how their life was now, about their family, or they told stories about their life before the fracture. They preferred talking about their current situation, experiences of being with other people, and experiences of managing in everyday lives.
Table 1
Changes in being active due to HF or other diseases
Code name & age | Pre-fracture walking aid & need of help | Permanent changes due to the HF: - A fundamental worry (W) - Accepted as natural part of being active (A) | Other diseases - Overshadowing HF (O) - An additional worry (A) |
Dorthe 75 | Walker outdoor. Cleaning, medicine dosage | Less pain from the hip | Pain due to fracture of the humerus (O) |
Bodil 80 | Walker Taking a shower, cleaning, laundry, medicine dosage | Pain from the hip (W) Dependent on using a walker all the time (W) Need help when taking a shower (A) | No |
Karen 82 | Walker Shopping | None | Increased tiredness due to progression of parkinsonism (O) |
Margrete 82 | Walker outdoor | Pain from the hip (W) Unable to go walking for pleasure or go shopping up-town (W) | Wheelchair bound after stroke shortly after previous interview (O) |
Joan 87 | Walker outdoor away from the house Visits for security, cleaning | Unable to walk stairs and cannot visit neighbor friend (W) Unable to attend Bingo on her own (A) Unable to do own gardening (A) | No |
Lene 92 | Walker long distance outdoor Cleaning | Pain from the hip (W) Impaired balance and repeated falls (W) Unable to go dancing (W) Unable to drive a car (W) | No |
Else 94 | Walker, once in a while without in the house Cleaning, laundry, medicine dosage | Slight pain from the hip (A) Permanent use of walker (A) | Increased dependency due to progressing loss of eye-sight (O) |
Frank 72 | Wheelchair, walker Transferring, personal hygiene, dressing (socks) | Wheelchair bound (A) Had to move into sheltered senior housing and live away from his wife (W) | No |
Gunnar 79 | Walker, support from wife Verbal guiding when transferring. | Pain, impaired balance, need help when showering (W) | Increased stiffness and reduced functioning of the leg due to episodes of transitory ischemic disease (A) |
Two main themes (Table 2) describe participants’ experiences of being active in the context of everyday life. The main theme “Feeling the continuity of life“ in four subthemes elaborates mainly on well-being experiences of meaningfulness, which are the experiences that are in the foreground when aged adults talked about their lives. However, experiences were intertwined with experiences of meaninglessness described in the main theme “Feeling vulnerable“.
Table 2
Two main-themes and six sub-themes
Main-themes | Sub-themes |
Feeling the continuity of life | Gratitude for present possibilities Connected with earlier life-experience Thoughtfully managing vulnerability Belonging with other people |
Feeling vulnerable | Thwarted Sad and regretting lost continuity in life |
Feeling The Continuity Of Life
Embodying vulnerability and in the face of being toward death, participants were concerned about their possibilities for being active. Feeling the continuity of life was a sense of gratitude for present possibilities for being active, feeling supported by their own thoughtfulness and earlier life-experiences, and a sense of moving forward while feeling connected to other people.
Gratitude for present possibilities
Gratitude for present possibilities was a feeling paradoxically adding to a sense of moving forward and being connected to the temporal continuity of life. Living with uncertainty and the awareness that future possibilities for being active could be limited and vulnerability might increase, worrying about the future did no good. When talking about the future and the risk of further decrease of physical functions, Else said that “... I’m not going to spend time wondering about that. […] that’s no use.“ Taking one day at a time, feeling gratitude for and appreciating the things they were still able to do was essential to feeling part of the continuity of life. These experiences ranged from Frank appreciating the freedom possible after moving to a nursing home: “I’ll tell you, going to the bathroom by myself, that is wonderful! And brushing my teeth! But the bathroom, that’s important, it’s so nice because I don’t have to call for someone,“ to Lene exclaiming: “Well, I’m happy every time I can solve a task.“ For Dorthe after having been close to dying gratefulness was talked about as a feeling always present in the background. Else, who was almost blind and could not go out on her own, seemed sincerely content, never talking about any imprisonment, or regretting her situation. For her, not being able to manage independently, a good life implicated gratitude toward “... that I have good helpers coming here.“ Being able to stay in their homes or do things was not a matter of course but was appreciated as a gift of a prolonged possibility for feeling independent and free. Joan was talking about going shopping in the supermarket and when asked what was so good about it she replied: “then I know ‘you can do it yourself‘.“ In the act of doing, participants confirmed that it was still possible to do it and by focusing on what they could do, they maintained a silent hope for being able to continue being able to do it, also in the future.
Connected with earlier life-experiences
Feeling connected with earlier life experiences was related to a sense of meaningfulness in places, allowing a sense of feeling at home with oneself. This was revealed in words, but also by showing a special book, things, and photos in the home to the interviewer. Since childhood, Lene had been going to the beach. Now, despite using a walker, she still enjoyed walking on the beach, priding herself on the agility necessary to maneuver on uneven ground: “I hum, feel myself being able to do a little of what I was able to before. I just have to think about how to do it. I didn’t have to do that before, I’d just go, just walk..“ For Gunnar, an excursion with the day-care-center to his former workplace which now was turned into an Exploratorium was: “...one of the biggest experiences I’ve ever had (cries).“
Feeling connected with personal capacities developed through life, participants had a sense of dignity. By using and developing creativity, perseverance, and patience in difficult to manage everyday situations, participants were able to endure and keep on going. In waiting time for her son to come by and help her, Karen was telling about the difficulties in trying to move a table and a carpet so she could wash the floor before he showed up. With a little laugh she said “I got it done!“ Keeping on making an effort for most participants was part of a sense of dignity, living up to life-long values, as also expressed by Paul who had learned from his brother: “You don´t give up.“ Some participants also came to accept dependency as natural and part of becoming old. They aligned with limitations and with the fact that keeping on trying was too exhausting and some things were impossible to accomplish. This was the case for Joan, who at a previous interview was exhausting herself by trying to manage her own garden: “when you have to do it, you can“ (interview 3). Now she had hired a gardener. Talking about herself with a smile she explained “she has gotten too old.“ When asked how she felt about that she was without regrets: “Well, I am going to be 87 next time after all.“ Feeling connected with earlier life experiences and acknowledging one’s own stamina through life, it was possible to build on ones self-esteem and self-confidence.
Thoughtfully managing vulnerability
Thoughtfully managing vulnerability was an experience of well-being, maintaining a sense of identity and courage. It was a call from one’s conscience to do things, to care about one’s own being and stay independent. Relieving the strain in everyday life and increasing a sense of safety and self-confidence were essential, and the participants’ many experiences of how this was done are presented in Table 2. Paying attention to the present, the body and the surroundings, participants had learned how to move with care to avoid falling and pain and using unnecessarily amounts of energy. During the interview, Joan went to her bedroom and brought back a device for putting on socks, stating that “it´s helped me a lot.“ Being vulnerable, some risks were not worth taking and participants avoided walking on stairs when they were on their own. Each moment could call for thoughtfulness. It was a balance between being active and being careful, as stated by Else: “I also have to be careful not to push it […]. You have to use the strength you have for different things. So you take your walker and so on.“ It was a new way of moving, and in earlier interviews, Lene and Karen expressed that it had been difficult, but now they could avoid falling. Discovering possibilities for being active in a safe way could involve civil disobedience; not sure whether she was allowed to use the walker (a property of the government) when she went swimming in the ocean, Lene concluded: “It helps me swim just as much as it helps me walk!“ Participants felt responsible to stay healthy. Lene also did exercises in bed every morning, for it was easier when the body was still warm and afterwards she was: “... able to happily jump around throughout the day.“ For some participants, managing vulnerability implied maintained hope of progress and of again being able to resume or more easily manage everyday life. For Bodil, hope of progress encouraged her zest for life: “If I didn’t have that (hope), I might as well…sit here and wait for it to end.“ For Birthe, Gunnar, Karen, and Lene to be able to manage their vulnerability, they needed help, e.g. receiving massage, or attending physiotherapy, for effective training and knowledge about the body, thereby making it easier to move and increase their self-confidence in the ability to manage.
Table 3
Experiences of strain relief and increased self-confidence
Relieving the strain in everyday life | Increasing a sense of safety and self-confidence |
Modifying the home environment with help from municipality staff | Being in familiar places |
Using assistive devices | Receiving help |
Using routines and procedures | Being near other people |
Having easy access to things | Exercising in the home or in groups |
Going for walks or going swimming | Training with physiotherapist • Effective and demanding training in a safe environment • Knowledge about moving safely |
Receiving massage | Avoiding walking on stairs, in the dark and on icy surfaces |
Belonging with other people
A feeling of belonging with other people was something to look forward to. Sharing experiences and talking with other people provided a sense of something more in life than managing everyday chores. When, in the middle of struggling to move a rug beneath her sofa, Karen had an unexpected visit from her grandson and his girlfriend, she declined their offer to help, preferring to be updated on their lives and whereabouts: “'You are absolutely not helping me', I said, 'you are going to have your coffee'.“ Participants were drawn toward being with other people in mutual relationships. It could require a lot of energy to socialize, but it was worth the effort of getting ready, getting out of the house, and getting in and out of a car. Being active was more fun when they had a sense of belonging. For Bodil, walking alone just for the sake of walking, “it does absolutely nothing for me,“ whereas being together with other people, it was easier. The attention was on being with other people and their common experiences. The interaction, what was happening was in the foreground, paying less attention to the act of being active. For Lene, meeting new people was essential: “And I walk a lot. And what brings me the most joy these days is (talking to other people) […] I’m so chatty, you know, and I say hello to the people I meet and if they start talking to me, I will talk to them.“ In contrast, other participants preferred being with people they knew, with whom they had a sense of belonging. Frank lived in a nursing home, spending his weekdays in the adjacent daycare center; he enjoyed talking with people, helping out serving coffee but didn’t join in on the activities: “... They go on outings, but that’s ok, I enjoy going with my son just as much; we talk about all sorts of things.“ People who had known them for a long time provided a sense of safety and were a natural refuge from chaos, offering help with practicalities as well as sharing life experiences of successes and failures. Family and friends yielded possibilities in life; going on excursions seeing new places, inviting for birthdays, helping to organize and carry out a birthday party for friends. Although participants were grateful to receive help, they also were leaning on the relationship as a natural thing, part of the lifelong mutual commitment of a family or close friendships. As expressed by Anna, whose daughter helped out with shopping, “well, that’s how it’s supposed to be.“
Being together with healthcare providers, a feeling of belonging was an experience of feeling respected, a sense of community, and feeling safe and taken care of. When the help or advice they received was related to problems they were experiencing in their everyday lives, they felt acknowledged as dignified human beings.
Feeling Vulnerable
Feeling vulnerable was mainly experienced in association with the experiences elaborated in the previous main-theme (“Feeling the continuity of life“), as experiences of avoiding feeling pulled toward greater vulnerability. In this main theme, feeling vulnerable was rooted in more explicit experiences. Two subthemes “feeling thwarted“ and “lost continuity in life“ detailed how managing everyday life was an ongoing struggle with uncertainty and unpredictability, and participants seemed to endure these experiences on their own.
Thwarted
Feeling thwarted when receiving help because of healthcare providers’ lack of human perspective or knowledge was an experience of loss of dignity/meaninglessness, e.g. when meeting with specialists, who focused only on symptoms and were not interested in how they were doing and the possibilities they had for being active; or when homecare ignored their limitations and needs. Else had one helper who continuously told her to do the dishwashing after lunch; however, being almost blind she felt helpless, unable to see whether the tableware was clean. Lene felt thwarted by helpers, for example, when they left a mess or did not respect the way she was trying to organize things to make them easier to manage. Lene had succeeded in maneuvering boxes of diapers into the bathroom, stacking them so they looked nice and were easy accessible from the toilet. Next morning a helper tore open one of the boxes, letting the diapers spill out, and another helper “...had been so clever as to put them […] on the shelf behind my toilet […] which means I have to go all the way behind and then up and reach for one of the diapers. You know what, I can’t do that!“ She had given up telling them how she wanted things done because she knew “from experience how insulted they can get and then you’ll get a snappy response.“ For some, feeling thwarted was an experience of needing training, but having difficulties attending training sessions due to distance or weather difficulties. Feeling thwarted was also an experience of lacking knowledge about assistive devices. For Anna, this meant lying in the floor a whole night after a fall, not sure whether helpers would hear her emergency call during night, and Lene although longing to go to a market in a neighboring village, only used her electric scooter for short trips because she did not know the capacity of the battery.
Sad and regretting lost continuity in life
When possibilities for being active were reduced, participants felt sad, regretting lost continuity with who they used to be. Feeling exhausted and embodying weakness, pain, and instability, a sense of unpredictability could prevent participants from doing what they wanted and struggled to do. A part of who they were was what they were able to do and accomplish, and when they could not do something, they felt that an identity as an independent, active, and persevering person was lost.
The two men talked about lost possibilities for outdoor activities; the women mostly about household chores; both men and women talked about limited freedom and limited possibilities for socializing. For Lene, to be able to look at things happening in her surroundings while sitting on her terrace in her bath robe and drinking a cup of tea, she had to remove dead plants: “I do all I can, I have been removing withered plants but then it comes to a halt; I can pull them up and gather them but I can´t carry them away ... it annoys me.“ She would feel exhausted and when sitting down for a cup of tea, she would fall asleep; even after a rest, she would not have the stamina to carry on. Unable to drive her car, she was unable to go shopping outside her local community, and she also depended on public services to attend social activities. Not accepting her own limits, Lene was full of regrets: “Then I think to myself ’well, you are an old weakling when you can’t even do that.“ Bodil continuously regretted her lost possibilities for helping out in the house, and feeling impatient to see results from her training she said: “I think I should be getting more mobile faster ...It can´t be right that I won’t be able to do some things, even though I´ve gotten old.“ Life had changed, and it was difficult to accept. In contrast, seeing no alternative and also handicapped due to other diseases, Else, Frank, and Karen had resigned and come to accept changed life conditions and things no longer possible to do. However, they talked about their loss with sadness, e.g. when Frank was telling that: “There are many things, I want to do […] I arranged roses, made flies for the fishermen […] I was out catching trout and herring and plaice; there was something going on every minute, but that’s over now“. Karen choked up when stating that “I’m used to being able to do everything; that’s probably what’s difficult to accept.“ She reluctantly accepted a need for increased help from her family: “I’m going to have to accept that when I’m not able to do some things myself.“ Although almost blind and not able to manage her house or go out, Else never complained; “that´s how it is“ and “that´s how it goes“ was a common reply from her, for example, when talking about disabled friends who were not able to visit, or friends who had passed away. However, her occasionally quiet voice or how she looked down at her hands was interpreted as sadness. For one participant, a sense of continuity in life had stopped. Margrete had lost a daughter to cancer, had suffered a stroke, and now, wheelchair-bound, had moved into a nursing-home. “I have nothing more to tell“ was one of her last remarks. Being together with other residents with whom she felt no kinship did not bring any joy, and unable to get into a car, she missed going on her usual trips with a friend.