A spouse in the nursing home: The conflicting experience of separation

Existing research, based on praxeological optics

A database analysis and web searches have not yielded any findings on praxeological analyses of spouses in nursing homes, only praxeological surveys discussing municipal health services in general in Norway.^10–12 Bourdieu used the term ‘field’ in relation to the social spaces we investigated. A field is a system of positions and the mutual interaction between these positions. ¹¹ Hierarchically, nursing homes rank lower than hospitals although a recent white paper on collaboration between specialist healthcare and municipal healthcare, The Coordination Reform, requires nursing homes to provide more advanced medical services than they used to. ¹⁰ Table 1 schematically describes the development of the hospital system and nursing homes, their functions and agents from the 18th century until today. ¹⁰

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Table 1.

Visualisation of emergence and development of hospitals and nursing homes in Norway.

Era	Institution	Agents	Agents (professional)	Function
18th century	Family farm/crofters and the system of obligations to provide care. The first hospitals.	The elderly, the sick and the dying. Tuberculosis, leprosy and insanity.	Family/moving from farm to farm. Institutions under the church. Day watchers, corridor watchers and night watches (all female).	Preservation of a social perspective: The right to be housed, clad, fed and cared for. Neighbourly love, care and assistance.
19th century Increasing urbanisation.	Farms for the poor are introduced.	Children, adults and elderly without families.	Unskilled labour.	Upbringing and retention.
19th century The birth and establishment of the clinic.	Hospitals are established in large cities and centres.	Patients who can be cured.	Physicians and their qualified assistants. The emergence of the nursing profession.	A perspective on treatment and benefits: Training physicians, diagnosis and control with symptoms.
1850 A change in mentality; the elderly singled out as a separate group.	Retirement homes/nursing homes.	The elderly and others in need of care.	Unskilled.	Internment and care.
1950 Increased opportunities and optimism towards treatment within the medical profession. The establishment of the welfare state.	Increased growth of hospitals, establishment of sections and specialisations. Nursing homes are introduced (mini-hospitals).	Patients with a specific medical condition or diagnosis.	Hospitals: Specialisation among physicians and nurses. New professions emerge. Nursing homes: Struggle with recruitment.	Active medical treatment of patients. Nursing home philosophy: active treatment. Reality: internment and care.
Since 1980 Nursing homes are returned to municipal healthcare.	Increased focus on home-based services, nursing homes, care facilities and assisted living facilities	Patient/resident with medical diagnoses.	Professionalisation Specialisation	Dual purpose: Short term: active including treatment. Long term: nursing/care

Situating marriage in a limited survey population

The Marriage Act was revised in 1927 and the burden of household support became a shared responsibility for husband and wife. Work in the home equalled paid labour and spouses were obliged to support each other financially. This may sound like marriage equality, but rights of property and salary still remained unregulated. Both parties retained rights to their separate belongings from before the marriage. ¹³ The new Marriage Act regulated the value of non-monetary efforts in the household and childcare. In 1995, this effort was valued to 40% of GNP. The major structural changes in marriage regulations occurred after 1950. The role of the traditional housewife changed and it became normal for mothers to take paid employment. In 1979, 70% of all households relied on two incomes, however, men were unaccustomed to childcare and domestic work and there were few kindergartens. ¹³

Praxeological methodology: How a marriage is affected by separation

The research was based on Bourdieu’s theory with the purpose of understanding and explaining the spouse’s experiences. A subjective dimension was included; i.e. how the spouse experiences the situation, as well as an objective dimension; i.e. how they structure both the processionals and the patient’s significant others practic in the nursing home. The ambition of using praxeological optics was also to objectify subjectivist and objectivist factors. The researcher’s access to the research data was objectified with the same set of instruments (this is not confirmed by this article). We will not find answers to our questions using interviews alone. We collected data we included in a structural and historical analysis to explain the experiences the agents have encountered. By using constructions, theories and concepts as instruments, we created a possible explanation for the conflicts spouses refer to in their meetings with professional healthcare providers. Experiences provided opportunities for analysis. From a certain position or praxeological perspective we were able to translate these experiences: ‘The explanation of what happens on the spot is not to be found on the spot’.^{14(p. 202)}

The basis for this philosophy was the theory of social practice regarding how people behave. How does a guest at a nursing home behave? Considering the fact that when we act we are often not aware of how and why we act. As humans, we often forget to read between the lines. We can find the tools to study social processes in mixed personal experiences, social conditions, historical preconditions and the cultural references of life histories. The relationship between personal and social conditions was in focus. ¹⁵ Bourdieu defined fields as ‘a network of objective relations’, ¹⁶ a structured social field comprising its own rules, forms of authority and legitimacy of perspectives and their positions in a cultural, economic and social context. ¹⁷ Bourdieu’s terminology was applied to human actions within Bourdieu-inspired research. Careful observance of symbolic violence, the habitus of the researcher and informer and how these interact were essential factors. The understanding of fields and different forms of capital and the positions and dispositions they created also contributed to understanding and explaining the content of the interviews. ¹⁸ In order to explain data in Bourdieu’s tradition interviews with agents are insufficient. It is necessary to describe the field and the agents and thereby we created a framework for dispositions as cultural and economic capital.^10,19 We analysed content by using Bourdieu’s instruments to understand and explain events. We all experience our own subjective life history as well as an institutional life story.

Ethical considerations

The project has been approved by Norewegian Centre for Research Data (NSD). There was no need for approval by the ethical committee since no patient information or interviews with patients appear in the project. The interviews were taped and transcribed in their entirety.

Having a spouse in a nursing home is a vulnerable situation, ¹⁹ and the researcher needs to have fundamental respect for the individual since the agents were cognitively adequate and consented to participate. The municipality also gave their consent. The agents were given sufficient and accurate information and were informed of their right to withdraw from the survey. The staff were not permitted to express their opinions of the agents’ statements that may unintentionally give the impression that some statements are subjective criticism. Nursing home staff in general provide excellent care and their effort is invaluable, but our purpose was to create awareness of how spouses may experience the situation.

Sacrifice

Some agents have since adolescence maintained an altruistic attitude, which is reflected in their contact with the nursing home. They have sacrificed their own wellbeing in order to spend time with their hospitalised spouse. By adapting the new conditions to how things used to be, the situation becomes what Bourdieu calls ‘a virtue of necessity’. The practices are homological. Before and now share the same logic. Empirical studies describe how agents express the element of sacrifice in four different ways. According to our construct, this may reflect the times they grew up in, or the cultural values accredited to marriage. You can never see a one-to-one relationship between upbringing and actual actions, time and changes interfered and habitus is in an everlasting transformation.

Frida sacrificed a lot. She visited the nursing home every day and refused to come to dinner with her daughter instead of her husband, which upsets the daughter. She no longer spoke to her friends and felt that they had given up on her. ‘I feel I’ve lost touch with them due to the circumstances. The close contact is gone. And my days have become long and tedious’.

When explaining the different positionings among the agents, several factors need to be taken into consideration: Frida, Louise and Halvard belong to a generation born between the wars. Times were hard and protestant ethics dominated people’s value systems. Frida and Louise married into a system with classical gender roles. Halvard was aware of his responsibility to his wife as defined by his role as husband. Trygve was born after the Second World War. He is a child of the economic upswing created by the Marshall plan. With the financial growth in Europe, new concepts, such as self-realisation and personal freedom, were introduced.

Sorrow

To be separated in old age, and no longer be able to live together, created sadness among the agents.

Frida lived with her husband at home for as long as she could and felt terrible when he was moved to a new permanency at the nursing home. ‘Every day when I left him it felt like betrayal’. ‘It has always been my duty to care for him, it is part of who I am’. Her husband felt he was living in prison and told her she might as well have him shot. Losing your spouse step by step is much harder than if he is suddenly gone, she says. ‘I feel very much and brutally alone’.

The experience of sadness was linked to several factors. Against the dispositions the agents had several factors that were homologically linked to their personal histories and historical contexts. Their justifications can also be described as follows:

Frida lived for a husband she met at a very young age. He has been very important in her life. She suffered much illness in her life and he has remained her main support. ‘My heart told me not to have another child’. When she married, she felt that she took the man away from his mother, something which strengthened her commitment and encouraged a need to stand by the love of her life.

A visitor’s role in the nursing home and contact with the staff

This section deals with the interaction with staff and the role the spouse assumes when visiting the nursing home.

Frida – ‘I don’t seem to be able to establish a proper communication structure. I say something and they promise to make a note of it in the patient journal. However, I do not think they ever check the journal’. She was told that her husband was threatening and that he got up from the table and tried to slap a nurse. ‘Why did they have to tell me this? I couldn’t sleep the following night’. She also discovered that her phone messages were ignored. She has not spoken much with the staff nurse. ‘We didn’t seem to communicate well, and her reply is that they’re doing the best they can, that’s all’. Nor has she been much in contact with her husband’s primary caregiver who seems to have been replaced several times. Messages are not responded to, and she often needed to do things alone. Often also lying awake at night wondering whether the night nurses took care of him. ‘The accident with the foot happened at night’. ‘I often wish I had someone to talk to. There is not much I can say to my daughter. This is just long and painful, according to her’. ‘I feel better here than at home because here I am not afraid and the thoughts and worries don’t bother me as much’.

We also analysed the positioning in this case. Trygve has a very different relationship to the staff from all the others. ‘I have been a business owner and manager for many years. My mantra has been to be open and respectful in communication with my staff, and I guess I’m quite sociable. This creates a better environment for all’. He was also younger than the others and used to being more independent. They lived active lives and had independent jobs. The agents’ social positions were also reflected in the attitudes of the staff. He was a young man of 69 years. ‘When I come they tell me the coffee’s ready. They know when to expect me and they know I like a cup of coffee’. Trygve’s status and his ability to communicate with people made him welcomed when he visited, but also supported when he chose to stay away. Perhaps the staff admired a civil engineer not much older than they are.

Frida and Louise were women in their 80s. Their communication with staff is characterised by trying to avoid becoming a nuisance. ‘I don’t know but they seem to dislike me somehow, and I have felt that maybe I have asked too many questions lately or something, I don’t know’. Frida and Louise remained close to their husbands and strongly involved their care. While Louise also enjoyed other activities, Frida chose to focus on her tasks as a wife. There is a simple explanation for this since they have both had the role of care providers in their marriages. ‘It’s been like that since I was a child – that’s why I feel that I must see him, I must visit. It was the same with my mother – she moved in with us when my father died, you see’. The role of housewife and the woman’s position in marriage has often been clearly defined. Perhaps nursing home staff feel bothered by these women’s insistence and their high expectations to the quality of care. While being afraid to demand they are also worried that their demands may affect the quality of services their husbands receive. Louise was not too bothered by her conscience whereas Frida thought that everything would be better if she could only have cared for her husband at home. This solution was out of the question for Louise, and she and her husband had already discussed what to do. Halvard was ill and this affected how often he visited. He didn’t relate to staff much. It was impossible for him to have his wife at home in spite of the fact that he felt terrible that she lived in a nursing home.

Love and marriage under surveillance

Being a spouse to a person in a nursing home makes you a guest at the institution where your spouse is a patient. You go from the privacy of the home to the public sphere. Historically very little prestige has been connected with chronically ill patients and the elderly, between nurses and physicians alike. Only a few nurses choose to work in nursing homes after graduation. Nursing homes are also often exposed to negative criticism. ¹⁰ Very often, the patient is moved to the nursing home against her will. Often the person in question does not even understand the need for it. When the environment and the room is cold or impersonal, this complicates the situation. Usually the patient has been cared for in the home initially, subsequently spending short terms in nursing homes before eventually having to stay there permanently. It is a long process of development, often with conflicting emotions. ⁸ The spouse’s needs and experiences are often overlooked. ⁶ It is essential to establish structures for how to receive the patient and his/her spouse in the nursing home. The focus on the patient may be explained by the staff’s focus on the person who will live there. A spouse may feel left out. For many elderly, who grew up between the wars, we may perhaps assume that the institution of marriage and the premise love was built on affects their involvement towards their spouses. Perhaps it is difficult for today’s generations to understand this? People between the ages 80–100 were born between 1918–1938. Consistency and predictability were essential to how this generation chose to live their lives. Children were taught to respect their elders, authorities and parents. ²⁵ The values of the time affected all generations. Ideals, values and self-esteem are also a story about married life. In our material they also mentioned how this contrasts with current value systems. ²⁵ Living for extended periods of time with a diseased spouse often involves a sad realisation that there is no other choice than to move the spouse to a nursing home. It becomes impossible to grow old together the way they had planned. Retirement suddenly becomes very different and the loss of a spouse to a nursing home is often a shattering experience. Talking to others in similar situations may often help. Talking to the children is often difficult since they may not want to share this burden. In addition, it is difficult when children insist that you need to pay more attention to your own needs. The agents preferred visiting their spouses rather than staying at home. It is upsetting to hear staff and friends point out that they needed to pay more attention to their personal needs and not to visit quite as frequently as they do. Spouses feel they do this by visiting their loved ones every day. Sitting at home all alone is worse, and they all feel lonely. The sadness of failure and of not having given sufficient care is strong as well as the sadness of the lost dream of old age together. Also of having to choose between visiting a spouse and visiting one’s children. A better dialogue and closer monitoring of their spouses would perhaps make it easier and safer for a husband or wife to let go and to visit friends and relatives instead. A support group or resource centre is often significant and may offer a common ground for these spouses. In order to alleviate the sadness, loneliness and sense of rejection among spouses it is important to take time to discuss life histories and to welcome the married couple to the nursing home. ‘It has been tough, but it has had its bright moments as well’. ‘It is important to share good memories but to take one day at the time’.