Dismantling of the self Loss and grief in admission to long-term care

The move to a long-term care home can be particularly traumatic for older adults. Much research has documented the culture and life in long-term care and how residents’ sense of self-identity and past is often erased, while they are then viewed as objects (Diamond, 1992; Gubrium, 1975; Paterniti, 2000, 2003). While research has documented life in long-term care homes, what happens prior to being admitted to a long-term care facility, and in particular, residents’ feelings and experiences around this, has been taken for granted. The purpose of this article is to bring forward the voices and stories of residents’ experiences prior to and after admission to a long-term care facility.

The nursing home has often been described as a total institution based on Goffman’s (1961) work (Dupuis, Smale, & Wiersma, 2005). A total institution is cut off from wider society and has an enclosed, formally administered way of life (Goffman, 1961). Indeed, long-term care facilities are not only enclosed from wider society, but are structured in such a way that interactions between staff and residents are focused on tasks (Henderson, 1995). Because of the pressure of time and the pressure to complete tasks, interactions between staff and residents are often superficial (Henderson, 1995). Thus, staff have limited opportunities to provide psychosocial care and social support for residents. When staff are able to provide psychosocial and emotional care for residents, the reporting structure often reduces their work into a series of tasks that are ticked off at the end of the shift, thus erasing this type of care (Diamond, 1992).

The perceptions of long-term care facilities are mixed as well. Schoenberg and Coward (1997) found that older adults have both positive and negative perceptions of nursing homes. Nursing homes can be beneficial if one’s physical condition demands it and can be a good option to older adults if the care is good. However, nursing homes were also viewed as infringing on one’s independence and as places to die.

The adjustment to long-term care has been documented by a few researchers (Kahn, 1999; Porter & Clinton, 1992). New residents have typically been described as generally ambiguous to their living situation and the nursing home, and were often described as having to “make the best of it” (Kahn, 1999; Porter & Clinton, 1992; Wilson, 1997). Because residents had no other options, they had to reconcile themselves to living in a nursing home and were determined to make the best of it. Generally, residents often went along with things and passively accepted nursing home life. Thus, as demonstrated by research, older adults attempt to adjust as best as they can to the adjustment of nursing home living.

Prior to coming to live in long-term care, however, residents experience numerous circumstances and situations that can contribute to their adjustment into long-term care (Porter & Clinton, 1992). While it is generally accepted that residents experience significant changes which are the catalyst for entering long-term care, the loss and grief that residents feel prior to coming to live in long-term care is not often described from their own perspectives. This article focuses on the voices of residents who have experienced the transition to long-term care.

The findings presented here are part of a much larger study that was examining the socialization process for new residents coming to live in a long-term care home. The purpose of the larger study was to examine the lived experience of the process of socialization for new residents into the nursing home culture and environment. The findings presented here focus on residents’ experiences of the circumstances that occurred prior to and immediately after coming to live in a long-term care facility.

Research Design

This study was conducted within a hermeneutic phenomenology paradigm (Van Manen, 1997). Hermeneutic phenomenology is a study of people’s lifeworlds. From a phenomenological point of view, to do research is to question the way people experience the world, to want to know the world in which people live, and aims at a deeper understanding of the nature or meaning of people’s everyday experiences (Van Manen, 1997).

Participants were recruited from Ridgemount Long-Term Care Facility (pseudonym), located in a mid-sized city in northern Ontario. Three residents were recruited. Because this study was focused on the in-depth experiences of new residents over a period of time (i.e., six months), it was determined that recruiting three residents would provide the depth and richness of information needed for a qualitative study. In addition to the three residents, 15 staff were interviewed prior to recruiting the residents, and 15 family and staff were interviewed after data collection with the residents was finished.

Two main methods of data collection were used throughout the first six months after admission to gather information from participants – interviews and participant observation. Residents were each interviewed formally three times throughout the six-month period – within the first month of admission, the third month, and the fifth month post admission. These interviews ranged between 30 minutes and two and a half hours and were semi-structured and conversational in nature. The interviews covered aspects of the transition, how the resident came to live at the facility, and how life had changed since coming to live at the facility.

Fifteen staff, including managers, recreation staff, and nursing staff, were also interviewed at the beginning of data collection. These interviews were used to gain an overall idea of the process of admission and the involvement of various departments in the admission and adjustment process. The interviews with staff lasted approximately 20 minutes to three hours each.

Fifteen staff and family members were also interviewed at the end of the data collection period with each resident. The staff members who participated were typically those who had developed close relationships with residents participating in the study or who had significant contact with them. These interviews focused on staff’s and family members’ perceptions of the residents’ adjustment into the facility, any significant incidents that had occurred, and changes in the resident.

In addition to the interviews, extensive participant observation was also conducted. I was a participant-observer in the setting, meaning that while I was observing, I also participated in life with the residents. I engaged in informal conversations and visits with the residents who participated, engaged in recreation and social activities with them, and was generally around in the facility during the day. I observed daily patterns of activity, social interactions and behaviours, conversations with staff and residents, staff interactions with residents, as well as where residents spent their time. I was present overall in the facility one to three days a week for one year in total.

Data was then analyzed using Van Manen’s hermeneutic phenomenological approach (Van Manen, 1997). All data was read through numerous times first to ensure familiarity with the data and the transcripts. Interviews were analyzed using a detailed or line-by-line approach. This approach essentially means that the researcher looks at every sentence or line and asks, what does the sentence reveal about the phenomenon or experience being described (Van Manen, 1997)? A set of themes were then identified, which were the essential structures of the phenomenon (Halldorsdottir & Hamrin, 1997). These structures of the phenomenon were compared back with the original transcripts to determine whether they fit the data (Halldorsdottir & Hamrin, 1997).

Description of Participants

Edward was admitted to Ridgemount with his wife Maybelle. Because Maybelle had dementia, she was placed on a separate unit than Edward. This was the first time in their married lives that they had to live separately. Edward and Maybelle were both in their nineties, and had been living in a seniors’ apartment prior to coming to Ridgemount. It was because of Maybelle’s dementia and her requirements for care that they moved into Ridgemount Facility.

The second participant, Rachel, was admitted to Ridgemount Facility from a transition facility for people awaiting long-term care placement. Rachel had a stroke a year prior to coming to live at Ridgemount Facility, and spent time in the hospital and then at the transition facility prior to coming to Ridgemount Facility. Rachel was widowed and in her seventies.

Brian was the last participant to come to live at Ridgemount Facility. He was admitted straight from home, although he had spent time in respite care at two other facilities before admission. Brian’s wife was still living at home when he was admitted, although she died a few months later. Brian’s house was then sold. Brian had Parkinson’s disease which had progressed rapidly just prior to his admission.

Findings

As mentioned, the findings presented here are part of a much larger study. While I was seeking to understand how residents became socialized into the long-term care environment, it became evident that the socialization process often started prior to admission into the facility. These findings focus on the dismantling of the self that occurs prior to coming to live in a long-term care facility and continued after admission. In a sense, these losses were part of the process of relinquishing a life in the community and accepting an altered life in long-term care. More so, however, these losses reflected a dismantling of the self where the resources by which residents identified themselves were eliminated. The three residents participating in the study experienced multiple losses both prior to coming to Ridgemount and after admission. These losses centred around two main areas: loss of place and loss of relationships.

Each of the participants experienced the loss of place either immediately prior to coming to Ridgemount, or years before. Edward had already given up his house that he and his wife lived in when they moved away from their small community of Smithville a number of years ago. Despite this, admission into Ridgemount Facility constituted a reliving of that loss of home as he would talk about his home and how everything was sold and gone. The loss of community was also difficult for Rachel. This loss, however, happened the year before when Rachel had her first stroke and was hospitalized. Her granddaughter, Deborah, stated:

She comes from a small little town. And that if anything is an adjustment that she doesn’t know too many people in Ridge Mountain. Her fifty years in Longhill, you get to know every person.

Because Brian had to give up his house after he was admitted to Ridgemount, he experienced his loss during the data collection period and discussed it in great detail with me. He had built his home himself and he and his wife lived in it for over forty years. For him, the loss of his home as well as other losses were all tied in with the adjustment process to the facility.

When I asked Brian if it was sad to have his house sold and to see it without furniture, he replied, “It feels kind of hollow. It makes me feel lonely.” [Field Notes]

The loss of possessions was also significant and very much tied in with the loss of home for Rachel. Even though Rachel’s loss happened a year ago, she still stated:

I miss my plants. My living room was full of plants and my office. And Deborah gave them all away. Gave my dog away. Well, nobody could look after him. [Interview One]

Again, the loss of possessions was extremely difficult for Brian because his home was sold during the course of the data collection. All of his possessions had to be emptied out of the house before it could be sold. As such, he was not just selling his house, but was giving away a lifetime of possessions. He had little control over what happened to his possessions during this process.

What was lonesome was all of the stuff that you accumulated over the 52 years we were married. I say they pick my bones for it. [Brian, Interview Three]

Brian’s family had come from out of town to assist with selling the house and disposing of his possessions. He described the loss of his house and the loss of possessions as memories stopping.

Yeah, after you get used to your stuff missing, there’s things that you’d like to give to somebody. Somebody else comes in and claims them. It all stayed in the family, but ah, I hated to see some things go. But I can’t have them all here… Oh, there’s things I’d like to have, but I can’t have them. I can’t have them here, so I’ve got to give them up. You get used to it... With only two adults in the house and no children, it gets a lot of treasures. ... You take this, you take this and that. And then, that’s what memories are made of. Can’t go on forever. It’s got to stop. And it stopped. I’ll sell the house. The house is going to be more of a lonesome spot than anything. Because I built it right from scratch. [Interview Three]

One of the most difficult losses for Brian, however, was the loss of his workshop.

Brian: Part of my freedom was working in my workshop. It didn’t really matter whether I got the job done in a day or got the job done in ten months, it was something I could do to take up my time. And all of a sudden something happens in the latter part of your life, but if you really didn’t, you knew it had to come. But you were not accustomed to that kind of life, so you live the life that you had normally lived. Then all of a sudden, somebody cuts that off.

Elaine: Because you described your workshop as being your sacred space, right? I think those were the words you used.

Brian: Yes. Then all of a sudden, somebody at the door says you’re done. And my workshop is scattered all over. There’s saws up in Fort Church, and there’s a drill press in Mackery. The family got the whole thing and they spread it around. [Brian, Feedback Interview]

The staff also recognized the depth of losses that residents experienced, particularly with the loss of place – both through a loss of home and a loss of possessions.

When you think about leaving your whole home and all your furnishings and coming to one room and you’re allowed to bring what, two things? I think it’s pretty hard on most of them. [Mary, Nursing]

Loss of Relationships

The loss of relationships was also very significant for all three participants. Rachel lost her husband 14 years ago, and still talked about him and their life together. Edward’s relationship with his wife, Maybelle, had changed significantly over the years because of her health changes and her dementia. While he hadn’t lost her physically, he had lost the relationship that once existed between them.

Elaine: Now you were saying too that Maybelle doesn’t talk as much as she used to either.

Edward: Oh, no. She doesn’t.

Elaine: So who do you talk to then?

Edward: Well, that’s it. When there’s two of us together. I have a hard time to get her to listen to what I’m trying to tell her. And that is hard on me, but, ‘cause I’m used to yapping away at different people, you know?

Elaine: So you don’t have a lot of people to talk to here then.

Edward: No. [Interview Three]

Another loss that Edward experienced was the loss of being together with Maybelle. Edward and Maybelle were not living in the same room together, and were in fact living on different floors. The separation, particularly in the beginning, was very difficult for both of them, since they had never lived apart for long periods of time during their married life.

It was a big adjustment. Yes. It’s just Maybelle and I, as far as we’re concerned. When we come here, I didn’t think we’d be separated. And ah, although I haven’t gotten used to it, I don’t think Maybelle has really set her mind on it yet. ‘Cause I go down and see her in the evening, you know, and we talk for a while. Then I’ll say, well I gotta go. And she’ll, why you in such a hurry and so on? I don’t want to stay too long, so I have to say, I gotta go. And that parting with her and not seeing her until the next time, it bothers her. Not so much now as it did at the beginning. At the beginning it was terrible. I didn’t like it myself, but I had to put up with it. I can put up with things easier than she can. [Edward, Interview Two]

Brian experienced significant relationship losses as well during the data collection period. Brian’s wife passed away about three months after Brian’s admission, and this was a significant relationship loss for him, perhaps the most significant relationship loss because he and his wife had no children.

His voice was very hoarse, and sounded like he’d been crying. According to Julie and the nurses, he had been up most of the night. He told me that he hadn’t slept most of the night. I asked him if he went to see [his wife] last week, and he said he did. She couldn’t talk to him because she was so doped up on morphine. He said she had been calling out for him and for the dogs. He said, “It’s God’s blessing. At least she’s not suffering anymore. But I can philosophize about it all I want.” I said, “But it’s still your loss.” He said yes. Again, he said, “The only good thing was that at least she’s out of pain and not suffering.” [Field Notes]

Brian also had to put his dog to sleep shortly after he came to live at Ridgemount. Since he was a dog owner for most of his life, this was also a very difficult loss for him and was a significant relationship loss.

We’re going to have to put her down. I can’t take care of her. The nurse can’t keep her. I don’t want her to go to anyone else. She’s 12 years old though. She’s old for a dog. She’s had a good life. [Field Notes]

The loss of friends was also mentioned by Edward and Brian. Although some of Edward’s friends had passed away a few years ago, he still talked about them with fondness.

Edward: There’s some things I miss.

Elaine: What do you miss?

Edward: Just the company… I had friends there all the time [at his last place of residence]. I don’t have that here. I have friends here. Just not the same… But now it’s, some of those old friends are gone, and there isn’t the new friends to take their place… [Interview Two]

Brian also discussed the loss of friends. He had lost many of his friends prior to coming to Ridgemount, but still often talked about his memories of his friends.

All of a sudden, him and I were the best of friends. Run our dogs together, fished together, just played together. And he told me one day, we were driving out to the [camp] to see a friend. He said I can’t drive you. So we take my truck. He said, I got something to tell ya’… I said, you got cancer. He said I don’t know. But I sure have the symptoms. I said, how often do you get up during the night to go to the bathroom? He said about 20 times. I said, have you been to the doctor? He said no. I said you’d better get to the doctor and get there fast… So he went to the doctor and the doctor told him, take this antibiotic and come back and see me in six months. I told his wife, there’s no way that Mike can wait six months. He’s got to go in now. So they took him to McIntyre Hospital. He was dead in six months. He was dead in 3 months…It was hard to take, because we did everything together. [Interview Two]

While there were many losses that occurred, Brian summed them up as a loss of freedom.

It’s something that you’ve lived with, oh, for me I’ve lived with it for 79 years I’ve lived with the freedom. And all of a sudden, I lost it in six months... I know what I’ve lost. It’s hard to take... [Brian, Feedback Interview]

The losses described by residents were losses of a life and of identity. As such, residents came to Ridgemount having experienced many challenges, and grieving over the many facets of their lives that were now gone.

Many of the staff also understood the loss of a life for residents. This loss of a life was compounded by the dehumanizing aspects of the institution. Many staff felt that residents lost their identity upon coming into the long-term care facility. A decontextualization of the residents’ lives as part of the dismantling of the self occurred when they came into the facility.

There’s a loss of their life coming into institution. Because as we talked about, they’re coming into strangers, and these people that work here don’t know them, have no idea who they are, they only know tidbits about this person. So really there, it’s almost being like an entity in this building of nothing beforehand. You know, I often make a metaphor of a plane went over and dropped the person off. And not to be disrespectful, but dropped the person off and said here, here’s the next person moving in. And that’s all you have, you know, and sometimes staff don’t want to know anything else about them. Only enough to help with their actual care right now. So, yeah, I think it is like a door closed, this is gone, and now I’m just this, here…[Karen, Recreation]

Discussion

While research has discussed life in a long-term care facility, what is often forgotten is that admission into a long-term care facility is predicated on loss – loss of functioning and physical abilities, loss of place, and loss of relationships. It behooves us to consider what residents have experienced prior to coming to live in a facility. The losses and dismantling of self that have been experienced by residents prior to coming into a facility is compounded by the often dehumanizing aspects of long-term care (Diamond, 1992; Gubrium, 1975; Paterniti, 2000; 2003).

It is often surprising to me that counseling and other services are available to many different population groups, yet older adults coming to live in long-term care who have experienced numerous losses are not often afforded these services. For many, the intense upheaval in their lives and the subsequent readjustment to a new environment and culture can be quite difficult. The care and attention of staff working in long-term care facilities can help to ease that transition and adjustment. Thus, it is essential for those working in long-term care to ensure that the self and personhood of residents is preserved in whatever manner possible.