Calidad

Antonia’s Story: ‘Please don’t leave me. I won’t be around much longer’.

Antonia was 87 and had lived in Longleaf for almost two years at the time of her prompted

conversation. Her foot was amputated, and she was confined to a tub chair where she had been for ‘a thousand years’. Antonia had lived an interesting life of travel, artistic pursuits, and activism before a ‘sudden and shocking’ admission to Longleaf following a stroke and a fall. She was a tiny, bird-like woman, barely able to see over the edge of her chair, with little resemblance to the photographs in her room of the large, robust woman dressed in brightly coloured clothes. Antonia had been a dancer on the stage in London before immigrating to Australia. She chose Antonia, her stage name, as her preferred name for this study. Her interests were ‘politics, reading, music and anything to do with the arts’.

Her daughter, Denise, described Antonia as a ‘social butterfly’ who ‘went out every day even if she was a bit unwell’ and who ‘just loved clothes and colour’. Denise related that her mother had been ‘larger than life. It’s quite sad to see her like this now’ (Denise, Antonia’s daughter, prompted conversation (PC), 6 September 2015).

Antonia was a Dining Room resident but was frequently anxious, crying, calling out, and clinging onto people if they attempted to leave her. She was frequently repetitive, and at times, the conversations were fragmented and confused. Her language was often symbolic, but the message was often one of fear and alienation.

Denise lived an hour from The Village and spent a block of four or five hours most weekends in Longleaf, and co-ordinated with her siblings so that several visited together. ‘While the environment [in Longleaf] is nothing like her old home, we try to make it feel a bit more like mum’s old world. She always loved a good get together’ (Denise, daughter, PC, 6 September 2015).

Antonia’s family grouped chairs and shared food and drinks, newspapers and playing cards that they had brought in. ‘I tell mum, she’s lucky she had lots of kids, and I’ve noticed that we seem more comfortable here than others’ (Denise, daughter, PC, 6 September 2015). As a group, they were able to appropriate a space within the large room. Interestingly, larger families were the only visitors I observed who appeared to be moderately comfortable and able to make a part of the dining room temporarily their own.

Throughout our conversations, Antonia related several conspiracy-type theories. Denise, a

psychologist, offered qualified insights into her mother’s stories. ‘Mum thinks they [the staff] are all out to get her. So, she's got a bit of psychosis, a paranoia. To me, it's very normal for her situation. Some people might say that it's some brain damage, but I would actually see it as a psychological reaction. She's trying to make sense of her world. And her old world was so different from this world, and this just laying around watching people, she’s frustrated and frightened’ (Denise, daughter, PC, 6 September 2015).

The most challenging aspect of visiting for Denise was accepting that Longleaf was the most appropriate place for her mother, as regardless of the quality of care she knew her mother was unhappy and frightened. ‘Like I walk in, and she starts with her crocodile tears, as I call them. 'Cause it's... I think she is just trying to express how unhappy she is. I mean, I think she is distressed, but she is not in pain. So, I think that's probably more about just being here and trying to articulate that’ (Denise, daughter, PC, 6 September 2015).

Denise described the world-of-being-in-aged-care as a complete contrast to Antonia’s world before admission. The physical environment was ‘so bland, clinical, and colourless, nothing like her own bright place’. It seemed, however, that Antonia’s lifeworld disparity, social isolation, and fear of death were highly distressing. She had had a ‘life filled with colour, and I think that now being completely at the mercy of other people, and not be able to do anything, it's really frustrating and frightening’ and that ‘she's gone from total independence … to total dependence’ (Denise, daughter, PC, 6 September 2015).

The everyday world of Longleaf involved few social connections for Antonia, and her visitors were close family rather than friends. For Antonia, time with her family was ‘heaven on earth. It’s the only time I am not so lonely. I would die without them’ (Antonia, IC, 8 August 2015). However, for the majority of the day, Antonia sat alone in the dining room. As one staff member said, ‘even for the residents with visitors, it’s a long day when you are just sitting there’ (Meg, staff-RN, IC, 30 August 2015).

Figure 7.1 Dining room with separated residents. Denise commented that Antonia was always positioned in the same location in the dining room and that she could not understand why residents were not placed together to aid social interaction. I asked staff about this, and it seemed based on unquestioned organisational routines rather than a deliberate agenda. ‘Antonia has always been in that corner. I thought she must like it, so I don’t ask her’ (Wayne, staff-CSE, IC, 12 September 2015). One staff member had a less favourable

interpretation, ‘they just keep people in the big living areas because it maximises supervision. Well, it just seems to be the place where people are dumped really, from the start to the end of the day’ (Donna, physiotherapist, PC, 24 July 2015).

Antonia wailed and cried out when anyone passed her chair, and whenever I spoke with her, she held my hand in a surprisingly vice-like grip and begged me not to leave. ‘Please give me just a little more

of your time’. ‘I need you, please stay’ (Antonia, various impromptu conversations). It seemed that Antonia only felt at home when she felt connected to other people. My diary had many notes on Antonia’s ill ease. ‘Today Antonia told me that everybody working in the wing was “bad” and were out to get her saying “they all hate me, and I can’t survive in here.” The only time she was not anxious was when her family were present’ (Journal, 9 January 2015). Antonia interpreted her separation to mean that staff deliberately kept her away from other residents. ‘I want to help others. They are all lonely too, but the staff try to prevent us from being with other residents in case I talk too much, that’s why they put me here’ (Antonia, PC, 9 October 2015). She described the staff as crooks and government spies but was worried, ‘They don’t want me to talk to other people, not ever’ (Antonia, IC, 15 November 2015). For the most part, she seemed to think hostile strangers surrounded her in the alien environment.

In light of the ethics approval condition to report suspected elder abuse, it is important to note that I did not observe any mistreatment and Antonia’s daughter did not have any concerns about her mother’s stories. Instead, I interpreted the conversations as symbolic of Antonia’s fearfulness and sense of disconnection in a foreign environment.

Another of Antonia’s fears was her belief that the staff were preventing her from seeing her family. ‘I need someone to love me. We all need someone to love and take care of us. Can you tell the family quietly that I am here? They put me in a different room every week so that my family couldn’t find me’ (Antonia, IC, 15 November 2015).

‘Mum is obsessed with good and evil’, which Denise interprets to mean that ‘I think she is worried about where she might end up. I think she is frightened of death’ (Denise, daughter, IC, 6 September 2015). Antonia spent her days in the dining room watching other people and related that she was aware that the composition of people frequently changed. It was relatively common for residents to be transferred to the hospital or moved to their room when unwell, but Antonia appeared to have filtered such changes as a ‘disappearance’ due to ‘something bad by the government [staff]’. It seemed at times, a metaphorical turn of phrase representing her understanding of other residents’ deaths. Denise confirmed this understanding, ‘I don't know. I think she's scared of death. She’ll say, “Oh that one's gone, they killed him”. She’s watching people; it’s all she has’ (Denise, daughter, PC, 6 September 2015). In any case, it could be perceived as an expression of Antonia’s ill ease and potentially having some awareness of mortality in the world-of-being-in-aged-care.

Antonia also seemed aware of stigmatism despite her cognitive impairment. She related that ‘I saw many people never have visitors and I used to cry for them. In Australia, they call us oldies. It’s an insult even though I am as old as Medusa; it shows their lack of intelligence. People don’t like oldies. That’s why we are all in here’ (Antonia, PC, 30 March 2015). She alluded to the building design being influenced by similar negative perceptions. ‘They don’t like us oldies. The rooms are too small for my family when they visit. I would rather be inside, but my room isn’t nice enough to make me come out here where they always watch us’ (Antonia, PC, 30 March 2015).

Antonia’s health noticeably deteriorated throughout the study, and towards the end of my fieldwork, she slept for the majority of the day in the dining room. She fell asleep several times during the follow-up conversation and was less coherent than previously. She explained that ‘I just sleep a lot. I get so lonely. I don’t want to be a grumble bum, but I like to have people here when I am awake. I feel more alive. I don’t have long, really. I am just waiting now. I won’t be around much longer’ (Antonia, follow-up conversation (FC), 30 March 2015).

Antonia may have been speaking symbolically, but as this conversation took place towards the end of my immersion in the world-of-aged-care, I did not know how accurate her statement was. However, she was not the only resident who spoke of an awareness of their imminent death.

For residents such as Antonia, their experience of Longleaf was that of distress and angst. Her days were spent in a paradoxical space occupied by residents who were simultaneously living and dying; the boundaries between life and death rendered more uncertain by the unpredictable trajectory of dementia. Staff must continue to care for the living and the dying within one building, in the case of Longleaf, at times in the same space, the dining room. This led to challenging spatial and social consequences that may have exacerbated Antonia’s experience of alienation.

Figure 7.2 Dining Room furniture plan: showing the layout of residents in tub-chairs and furniture.

A staff member described the dining room where Antonia spent her days ‘as feeling like a very big waiting room. People always seem to be just waiting…. it always feels like the start of the day. Except it doesn’t start. People just wait’ (Donna, physiotherapist, PC, 24 June 2015). When I asked what they were waiting for, she replied quietly, ‘they are just waiting to die’. Her observation resonates with colloquial descriptions of aged care as ‘God’s waiting room’ (O'Connor, M & Tan 2012; Parker, D 2011). For Antonia, her days were spent watching the other residents, and waiting for her family to visit so that ‘the best part of my day’ would start, and perhaps as she alluded, waiting for death, ‘it’s better we don’t talk about it, but I am just waiting now’ (Antonia, FC, 30 March 2016).

Several residents seemed to be ‘waiting’ in the dining room. This was challenging for others in the dining room, as while some residents may be nearing death, for other residents, Longleaf is their home, and their families were continuing their daily or weekly routines and social visits.

The blurring of boundaries between life and death in aged care regularly produces organisational and care logistical problems (Worpole 2009). The building design of Longleaf did not always facilitate the privacy desirable in the final stages of life. I observed, at times, even those who were actively dying were brought out to the dining room for supervision while staff continued to care for the other residents. For Bob, a dying resident who was agitated and tried to remove his catheter and

medication port, it was essential for his safety to be in the public space. This was not without conflict as other residents and family seemed to find the experience disconcerting.

Thus, not only was being-in-the-world-of-aged-care a paradoxical place but spaces within the wing, such as the dining room, were also strangely contradictory. The process of dying could be perceived as an in-between world, the person not fully engaged in living yet not dead either (Brown, M 2003), and the dining room itself was, therefore, a liminal space for those waiting to die. For Antonia, the dining room was a space of innumerable strangers in varying stages of moving towards the end of

their life. Dementia may have reduced her capacity for clear verbalisation and conscious

recollection, but her lived experience of alienation and fear were articulated sufficiently clearly to convey her meaning.

Antonia’s understanding that residents ‘disappeared’ from the dining room was not unfounded. Bob was eventually moved to his room where he died the following day. Mary, as we shall see in her story below, was a conspicuous dining room resident but as her health declined, she spent more time increasingly in her room, eventually dying in the hospital.

Furthermore, Antonia demonstrated a profound awareness and was able to relate her understanding of her stigmatisation in contemporary western society succinctly. Although frequently assumed otherwise, it has been found that even those with late-stage dementia may still have the cognitive capacity to feel humiliated when they understand that they are treated as a lesser person (Sweeting H & Gilhooly 1997).

Antonia expressed a feeling that her age and frailty negatively affected others’ perceptions and the way she felt she was treated. She described a sense of isolation from the world and her previous social connections. She also felt obstructed from forming meaningful relationships with others within Longleaf. It was a state of Being that hindered relief of emotional and spiritual suffering and experiences of feeling in place or ‘at-home’ in the world-of-being-in-aged-care.

Antonia believed the chairs were arranged to keep residents from connecting. While it was unlikely that staff were deliberately ‘keeping me away from the others’ as expressed by Antonia, the

separation contributed to her sense of alienation and anxiety in the world-of-being-in-aged-care. For Antonia, Longleaf was experienced as an isolating separation from the outside world, within which she felt further isolation from others inside the RACF.

Unlike in the family home, the RACF accommodates numerous people who are dying, forty in the case of Longleaf. The dining room was experienced as a space that was disturbingly unlike Antonia’s previous known world, a space with strangers with whom she was unable to connect and where the blurring of boundaries between the living and dying were incomprehensible to her and fear-evoking The experience of Longleaf for Antonia was dominated by anxiety except during family visits, which was similar for many residents, including Mary whose story follows.