The analysis resulted indicated three main categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. In the main category The unavoidable and unknown end of life, which is divided into three sub-categories, describes the older persons’ worries and wishes related to the end of life as well as their approaches to death and remaining life. The second category, Thoughts on control, portrays the older persons different views about whether death should be controlled. The third category, Living your last period of life at a nursing home, describes the older persons’ thoughts, feelings and attitudes on spending the end of life at a nursing home. The three main categories and their corresponding sub-categories are presented in Table 2.
Table 2 Structure of the categories and sub-categories
The unavoidable and unknown end of life
The older persons had different perspectives on dying, death and the end of life. The older persons expressed various wishes and worries related to dying, which are described in the sub-category Worries and wishes related to dying. Death was perceived as something natural and an inevitable part of life, and the older persons did not particularly worry about death; however, the reasons behind their lack of worries varied, as illustrated in the sub-category Death as a natural closure. The older persons found it difficult to plan for the future and connected an unknown future to finding oneself in the end-phase of life – their views on finding meaning and happiness in this phase of life are described in the sub-category Views on remaining life.
Worries and wishes related to dying
The older persons expressed worries related to dying. Undergoing a long and protracted death, as well as facing an end of life characterized by illness and slowly languishing away, evoked worries among the older persons. Another worry that the older persons noted concerned being in pain. The thought of dying in pain generated concerns. Some of the older persons were convinced they would receive adequate pain relief, while others worried that they would not receive the help they would need in time.
“Possibly, you are afraid of not getting the help you need (...) because if you are lying there in pain, that is hard for both yourself and your loved ones.” – 75-80 years old
Several of the older persons shared a wish to remain healthy until the very end of their lives. Dying quickly or suddenly was a common way that the older persons described how they would like to die. The older persons also gave examples of what would settle their worries in the face of death and help them feel peace. Those who were scared of dying in pain noted that the nursing home and caregivers gave them a sense of security. Thus, for some of the older persons, the nursing home can be viewed as a comforting place of safety and security.
“As long as you die in a regular way (…) of course you don’t want to die in dismay” -
75-80 years old
Death as a natural closure
Dying evoked worries, but death itself was not feared by the older persons. Death was explained as an unavoidable part of life and therefore nothing worth being concerned about. The older persons viewed death as a natural end of life. However, the reasons why the older persons did not worry about death varied. Some had experienced near-death experiences, which resulted in them not fearing death. Others compared themselves with younger, healthy persons and argued that the death of older persons is not depressing compared to the death of younger people. Some of the older persons even portrayed death as a relief from life and thus something to long for.
“… if you have become so weak and obsolete, then it is nice to get away from it …” – 75-80 years old
The older persons had varied thoughts about what would happen after death. Some wished they had a faith to be comforted by, and some hoped for life after death and the ability to rest near and dear family and friends. Some of the older persons shared a view of death was a large empty room, an unknown situation they knew nothing about.
“How afraid am I of dying. You don’t know anything. It is entirely foreign; completely empty you do not know anything” -
80-85 years old
Views on remaining life
The older persons expressed awareness of being at the end of life. Some expressed a lack of prospects or a future to look forward to, while others showed disinterest in future events. They portrayed the future as something unknown and uncontrollable. However, the older persons did not express specific worries about facing this unknown future. Not having to think about the future was described by the older persons as part of knowing they were drawing closer to the end of life.
“I have accomplished a lot in life … so I say it is enough now.” (laughter) –
85-90 years old
The older persons described varied feelings of happiness and meaningfulness related to the remaining part of their lives. Some described difficulties finding meaning and happiness in what remained of life. These older persons viewed their lives as being over and expressed a preparedness to die.
“I feel like I am done living, I have lived my life” -
80-85 years old
Others voiced satisfaction with themselves and what they had accomplished in life. Some of the older persons felt that their children and grandchildren brought meaningfulness to their lives. One man explained that his wife needed him due to financial reasons that gave him a sense of meaningfulness in life. A few of the older persons had a more hesitant approach, describing life as being burdensome but, at the same time, indicating an unwillingness to give up on life. Others described a feeling of being unsatisfied with themselves and their accomplishments and looked back at life with a feeling of failure.
”Our children visit us often, we are grateful for that, having them close by” -
90-95 years old
Thoughts of control
The older persons associated the ageing process with different kinds of losses; these losses and their impacts on the older persons are described in the sub-category Loss of function and independence. Death was considered uncontrollable, but the older persons also had different thoughts on how they would like to be able to control the moment of death; these thoughts are illustrated in the sub-category A controlled death.
Loss of function and independence
Different types of losses connected to the ageing process were described by older persons. The loss of functions was reported as a feeling of not being able to control one’s daily activities or schedule, which was followed by a feeling of loss of independence and control. The loss of control caused a feeling of frustration, but the older persons also perceived this loss of control as a natural part of the ageing process that everyone goes through.
The older persons described decreases in physical function and the inability to perform activities they once been able to do. One man contrasted his previous ability to engage in many activities when he was healthy with his current substantial loss of physical function. He described the loss of his physical function as a transformation he had to learn to become accustomed to; however, the feeling of not being able to take care of himself caused frustration.
“Before, I was able to do almost anything, and now I feel like a piece of shit (…) as an example, I am not able to hammer a nail into the wall; I cannot hold the nail with my left hand. So, it is a lot, but I have learnt to accept it. I just rather need to ask someone to help me.” – 75-80 years old
Decreased physical function contributed to a feeling of lost independence among the older persons. Some described decreased control of the bladder and decreased mobility. One woman described the difficulty of getting up from a chair and noted that pain was a contributing factor. The inability take care of herself or have control of her day-to-day activities was very frustrating, and constantly being dependent on others gave her a sense of hopelessness.
“… I have difficulties calling (…) I want to take care of myself.” –
95-100 years old
Their thoughts about losing control of physical function were accompanied by a sense of fear of being a burden. The older persons described themselves as being a burden to caregivers, friends, and society. However, some of the older persons believed that in one way, requiring care gave others work opportunities. Despite their loss of physical function, the older persons also expressed gratitude for being mentally healthy and not suffering from dementia.
“… you can be grateful as long as you are cognitively intact; that is something I feel is nice.” – 85-90 years old
“My life has a value since it contributes to employment for health professionals (…) they (the family) seem to value me; they do, but probably, I am just an inconvenience.” – 90-95 years old
A controlled death
Some of the older persons thought that they could not control death. They understood death as a force that cannot be controlled. One older person expressed that no one, not physicians or anyone else, can control death, and therefore, it is nothing to spend time worrying about. Another older woman explained that she had faith that the staff had control for her.
“No, I do not think I have control; I trust someone else to have the control.” – 90 -95 years old
A wish to be able to control death was described by the older persons. Some feared not being able to control their own behaviour at the moment of death. None of the older persons believed they could control their own moments of death. However, they voiced a wish to be able to say goodbye to loved ones a certain amount of time in advance of their death and a wish to be prepared for death when it occurred. At the same time, the older persons reflected that knowing when they were going to die would be distressing.
There was a strong wish among the older persons to be able to make decisions about their own death, as they considered themselves to be cognitively healthy. Several of the older persons shared thoughts about assisted dying. Some did not necessarily agree with assisted dying but were against life-supporting measures. Others expressed a positive attitude towards assisted dying and felt that decisions about one’s own death are individual decisions.
“I have spoken with an elderly person, and she said that it should not be like this in Sweden; you should be able to decide for yourself. Because I mean, if you are clear minded, you know what you are doing … (…) Yes, then you should have the right to make decisions about your own life actually.” –
80-85 years old
The older persons’ thoughts about a controlled death concerned not only the actual moment of death but also the time afterwards. Some of the older persons wanted to be able to make decisions about their own funerals. These older persons had strong opinions about being buried or cremated. They thought about not having control or knowledge about how their bodies would be transported and stored before the actual burial ceremony, which was worrisome. These thoughts led to their awareness of the need to gain more knowledge about the process. It was important to them that they be buried at the plot or site that they and their partner had chosen.
“I do not like burial ceremonies (…) I have a vision about how I want it.” –
95-100 years old
Living your last period of life at a nursing home
Living at a nursing home and spending their time with other residents influenced the older persons in different ways; the older persons expressed both negative and positive attitudes, which are described in the sub-category Living together with others. The older persons’ outlook on everyday life at the nursing home are exemplified in the sub-category Solitude and boredom, which portrays the nursing home as a place characterized by isolation and a lack of stimulation.
Living together with others
Being forced to live with others at the nursing home was described as strenuous and as having a negative impact on one’s wellbeing. The older persons perceived other residents at the nursing home to be more ill and in greater need of care than they were. Some of the older persons believed that they were in better health, both physically and cognitively, than other residents at the nursing home, which resulted in them being overlooked when it came to their own care. This led to frustration with other residents at the nursing home and feelings that the other residents did not belong there.
“Then, some of those living here are not healthy and should not live at a nursing home (…) she has yelled at me, and that upsets me. She yells at everybody; that’s the worst.” –
85-90 years old
Some of the older persons described feeling lonely at the nursing home, suggesting a lack of community, and belonging. Factors contributing to the lack of community and sense of belonging included one’s own or others’ hearing loss, dementia, feelings of listlessness and tiredness and a lack of interest in other residents. However, some of the older persons did not experience a lack of community and belonging at the nursing home. A few of the older persons described that the nursing home provided them a social context where they were able to have meals and coffee together with other residents.
“The people who live here, including myself, you know, it is something wrong (…) Some do not hear, and that is almost the worst when you are speaking to someone who does not hear anything, it is just what, and what and what.” – 90-95 years old
“… we are a few, and we can sit and maybe drink coffee and talk; I think that is a fellowship that is important. There is always someone who has something positive to talk about, and it spreads over to others.” –
75-80 years old
Confinement and boredom
Some of the older persons characterized life at the nursing home was characterized as boring and simply satisfactory. The nursing home environment also led to a feeling of being confined and not having the same freedom as before to go outside. The possibility to go out for a short period of time was viewed as very meaningful. Some of the older persons had the ability to go out on their own, while others had to rely on family members. To be able to go out and spend time with family was viewed as very important, yet some of the older persons felt they could not rely on their families to entertain them.
“Of course, if I did not have my daughter who is taking me out for walks and shopping, then I would probably think it was even more boring, even more dull.” – 85-90 years old
Those who could go out on their own described this as an important part of their routines that allowed them to gain contact with the “outside world” away from the nursing home. Family was viewed as an important part of avoiding boredom and maintaining a sense of wellbeing, as many of the older persons lacked a sense of belonging. Some of the older people longed to have something to keep them busy. One man described life at the nursing home as a difficult adjustment from living a very active life to now experiencing a feeling of being confined inside the nursing home.
“It is the lack of labour, that is something I miss. I do not know what I should say because I have always been active, and when you come down here, it is like a prison.” – 95-100 years old