Being limited in body and space
The category Being limited in body and space illustrates how, according to significant others, limitations in frail older peoples’ lives lead to dependence on others. The limitations that they refer to are physical impairments in body and decreasing mobility in space. The decreasing mobility in space makes it difficult or impossible for older people to choose or decide for themselves where to be. When physical changes make older people incapable of deciding over their own body, they become increasingly dependent on staff and significant others. According to the significant others, the lack of personal freedom gives rise to EL. The body becomes a barrier to freedom and independence. In the example below, a significant other describes certain physical impairments that trigger EL. The older person who previously had been a very strong and vigorous man is now dependent on others for help with his most intimate needs.
He says like, ‘if I could just use my hand’, he says, ‘that’s the worst of it all, this hand’//…and the incontinence and that he can’t…it’s the worst thing he knows. To have to rely on other people and to use diapers and all that, ugh, he thinks it’s horrible…he can’t do anything…//he says, ‘I’m totally worthless’…he also says that he’s pitiful…//…he wants to manage by himself…but he can’t (21a)
According to significant others, the limitations of the body also affect the older person’s self-image. The dependence on others, as well as their inability to choose for themselves, give rise to certain feelings that older people have difficulties expressing to their significant others. The significant others refer to narratives where older persons say that they “see themselves as worthless,” and they also refer to situations where older persons use degrading words about themselves and show frustration. The significant others interpret these expressions of worthlessness and frustration as manifestations of EL due to older people’s increasing physical impairments.
…it wasn’t funny many times…to hear ‘I don’t want to live anymore’, that ‘this isn’t a life worth living’…the impact of diseases and things like that, that she didn’t have the ability to move and participate any longer, it’s made her frustrated…//…we’ve always been doing things together, she’s been with us skiing in Austria and swimming in Germany and Belgium and we’ve been bicycling in the forest…and always been very active and all of a sudden not being able to move and be with us and be active…//…all of her life, now it’s not possible any more, ‘now I can hardly move, it’s not a life worth living’…// (8a)
According to significant others, reduced mobility in space sometimes means lack of freedom. They perceive that EL arises when older persons can no longer decide in what place they want to be, and when they no longer have the ability to move between different environments. One example of this is an older person who earlier in life travelled a lot and through life has had different kinds of jobs which took him to many different places. As a disabled man he can still have some freedom driving around in his motorised wheelchair, but when he cannot use his motorised wheelchair any more he becomes dependent on other people and his personal freedom decreases because of his limitations in space.
…he loves his motorised wheelchair and it’s been a feeling of freedom, he’s been driving out, down to the harbour, and he’s bought ice cream and he’s been looking around for a while, and when he no longer has this ability you notice that he thinks it’s very sad…//…this feeling of freedom, to look around, get impressions and experiences, decide yourself, maybe have control over what you…you decide yourself, now I want to go out and you do that, not being dependent on someone else…// (4a)
In summary, when older people are no longer able to move around and choose for themselves where to go, they become limited in their spatial freedom and this may lead to EL. Being limited in body and space thus seems to give rise to EL, as interpreted by significant others.
Being in a process of disconnecting
The category Being in a process of disconnecting illustrates how, according to significant others, frail older persons are in a continuous process of losing other people, places, and material belongings that they are or have been attached to. The many losses make older peoples’ lives empty and this may give rise to EL. The continuity in the older persons’ relationship to friends is often broken and they find it difficult to fill the gap. Saddened by this, they often think about people who have been important to them through life and especially their long-term relationships. The broken ties have to do not only with the fact that their friends get old and die, but also with difficulties in maintaining a relationship. This leads to emptiness since there is no longer anyone to share life with. Such a loss of emotional ties also means losing a part of themselves, as the person or persons they have lost cannot be replaced. The quote below illustrates a significant other’s description of the older person’s many losses.
…who [an acquaintance] also passed away, unfortunately//So the two of them…became friends and they met a lot…Then she died too…Sad. It’s, it’s sad, so now she hasn’t got anyone…not any real friend//…they are fading away//And yes…since dad died…she’s sad of course//…that’s…when…that’s when she was left alone…lonesome…they had…lived all of their life together…and…yes, I think that…that they needed each other…to somehow fill out their lives in some way…// (22a)
Older persons’ EL also seems to relate to the loss of their connection to cherished material belongings. According to the significant others, it is an emotional process of anxiety and melancholy for the older persons to know that they will have to let go of objects from their past that have a special value for them, or to imagine that those objects will not have any importance for anyone else after their death. To let go of one’s attachment to material belongings means to lose a part of oneself, which may lead to EL. Significant others have the impression that older persons are aware that the end of life is approaching, and to talk about their belongings becomes a way to pass on the story of their life. One example is a significant other who describes how the older person wants to tell the story of her life by talking about the objects connected to her past that have been important for her.
…she tells a lot about her life too, she’s very keen to somehow pass things on, she tells me//she’s keen for me to know that this tapestry, for example, was made by her aunt, I notice it, she…it troubles her a bit, I think, that when she’s gone, the things will be dispersed in a sale, you know, and no one knows about her memory-laden things. She talks a lot about those things…she anchors her history in some way// (1b)
The older person’s life story can also be related to a certain place. As interpreted by significant others, the process of losing the connection to a certain place leads to EL. The significant others notice expressions of sadness and grief among older people who look back on certain places of importance that they no longer have contact with. One example of this is a significant other who recounts how an older person was unable to stay in his house in the countryside where he wanted to live and dreamt of living until the end.
….he always gets…he’s very sad when he returns from there, always, always…//Because he wants to be there, he’s…well, he…we’ve lived in many places and he’s renovated houses here and there and apartments and he’s…but he’s never been so attached to anything before this place…//He thought we would live for the rest of our lives at that place…but it didn’t turn out like that//…there are many losses…that he thinks about// (21a)
The many and continuous losses make EL surface among older people. When they are in the process of looking back on painful memories, this is especially evident. The significant others feel that the memories often have to do with things in life that the older person wishes had turned out differently, but that are now too late to change. These memories are often filled with regret over a choice in life that was wrong or with sadness that different choices were not possible to make. The significant others describe how they notice that this mood is painful for the older person and that it triggers EL and is expressed as regret and as an inability to feel inner peace.
She hasn’t got…she hasn’t…she hasn’t got inner peace, she hasn’t lived the life she wished for, she’s lived a life where she’s been…well, in…not forced to, probably not, but the choices she’s made have led to a life that she didn’t choose…(5b)
In summary, the significant others perceive that older persons are in the process of continuously losing their connection to other people, places, and material belongings that they are or have been attached to, and that they find it hard to fill the gap left by those losses. This process leads to an increasing emptiness and makes older people experience EL. Being in a process of disconnecting thus seems to give rise to EL, as interpreted by significant others.
Being disconnected from the outside world
The category Being disconnected from the outside world illustrates how, according to their significant others, frail older persons no longer have a sense of being part of a community, but rather are in a state of alienation, which makes their lives lonesome and gives rise to feelings of meaninglessness. One illustration of this is shown in the quotation below, where a significant other tells of an older person, living at a nursing home, who feels no companionship in the context she lives in because the other people living at the same nursing home are not able to talk or connect with each other at the dinner table. The significant other describes how the older person’s life becomes disconnected and how this seems to trigger EL.
…and I mean the meals…sure, it’s good that they are gathered, but I mean there are…I think there are eight residents…and I think that half of them have to be fed…and of course, to be ninety-five years old and have to confront this, it can’t be only positive//…she thinks there’s no one else…and there isn’t anyone else, more than her, at the unit who has a clear mind, as she does…// (11a)
Significant others perceive that older persons have difficulties in communicating their disconnection, but that they try to find words that explain how they feel. Below, a significant other relates what an older person has said, which she understands as if the older person describes disconnection. The older person seems to voice EL by saying that the days have become quiet and silent.
…because she says ‘well, yesterday was a silent day, yesterday was such a silent day’…but I say, so and so was supposed to come for a visit. ‘Well, they were here, but it was a very silent day’ (11a)
Several of the significant others feel that they can tell just by looking at the older person that s/he is disconnecting. According to significant others, the disconnection from the outside world is seen regardless of where the older person lives. Sometimes they feel that they have trouble connecting with the older person, who increasingly turns off the outside world and withdraws into him- or herself. The significant others, also point out that it is not always easy to understand the older person’s expressions of disconnection, and they recount how although the older persons do not always describe their situation with words they nevertheless do so with their body language. Below, a significant other describes how the older person shows with her body that she has turned off the outside world.
…then she’s sitting like this, in this way [hanging over the table], I usually say that it’s like a computer that stalls…that’s shutting down, and that’s how my mom sits (14a)
Older persons often have difficulties putting their experiences of disconnection and meaninglessness into words. However, on hearing expressions like “There’s no meaning any more,” the significant others sometimes think that the older persons experience disconnection. The significant others understand these words as if the older persons feel that their lives have nothing more to give, and as a longing for life to end, that is, as a longing to die. In summary, when life becomes increasingly disconnected from the outside world and meaningless for older people, they experience EL. Feelings of being disconnected thus seem to give rise to EL, as interpreted by significant others.