‘Life’ refers to being able to live a normal life-span and not dying prematurely or before one's life is reduced as not worth living. This CHFC is closely related to bodily health. Participants referred to the ceiling of care available to them, if a resident was ill, or unable to carry out activities of daily living. In some cases, this was also referred to as the ‘worst thing’ about the care home.
The first quote highlights the practical and ethical difficulties of deciding what ‘a life not worth living’ comprises. In this example, the resident perceived that the facility would judge that a sick older person’s life had no quality and would not be worth saving. Maalia explained what would happen if she became ill in the home in which she lived:
They will put me in the back room [sick room]. You may get a bath or you may not. You will have to lie there and die… If I become sick, the Sister will pour coffee and porridge. They will do that only when you become too sick. When you are going to die, they will pour water and bid farewell. That’s all. (Female, 65 years, widowed, H11 unregistered)
In other facilities, residents believed that if their health deteriorated to a point at which they were unable to take care of themselves they would be cared for by their children. For example, Rishi who had four daughters and lived with his wife said:
If we become too old and unable to do things, they [daughters] will only take us back. Now we are able to do things. So we are here. If we fall sick, these people will inform them and they will come and take us with them. (Male, 83 years, married, H14 registered)
Similarly, Hitendra said:
What if I become sick in the last stage of my life? Luckily I joined here when I was healthy. The facilities here are good. So, I want to be here for some time... I told my son that I would go to his house in [city > 200 miles away] if my health deteriorated. (Male, 83, separated, H10 unregistered)
The expectations for support at the end of life maybe unrealistic, as the residents were living in the facilities because their families were unwilling or unable to provide support. If support did not materialise, then this would not be problematic for Rishi, as the old age home he lived in provided life-long support. Diya, another resident in H14 noted:
If we are not well, the doctor will immediately attend. All medicines will be provided immediately. These three people [the doctor, the manager and the assistant manager] take such good care. One should have done punniyam [meritorious deeds in previous lives or in the past] to come here. (Female, 77, widowed, H14 registered)
However, there was no health care, personal support, or palliative care in the facility where Hitendra resided, and the manager noted:
The residents should take care of themselves. If they cannot take care of themselves, we cannot help. We do not have any attendant here. (Manager, H10 unregistered).
The Tamil Nadu Minimum Standards note that “each Old Age Home should ensure that the inmates [sic] should continue to receive care till the end of his/her life or up to natural death” . Despite, mandatory care obligations, the Standards were only enforceable in registered facilities. Consequently, with one exception where a nun provided some personal support (see section on bodily health below), there were no care attendants to support residents in the unregistered facilities (Table 2).
[Table 2 about here]
This theme incorporated examples of supporting residents’ bodily health through medical and personal care (i.e. support for activities of daily living), adequate nourishment and shelter. Some difference between facilities in the availability of staff to provide health and personal care were mentioned above concerning CHFC life.
Residents in unregistered facilities were more likely to have to retain the ability to self-care or to provide support to each other than those in registered facilities. Dev and other residents in the same facility noted:
Here we don’t have anybody to get help. That is the rule here. One should eat oneself, one should wash oneself, one should sleep oneself. They are strict about it. Suppose you cannot walk by yourself, they, your co-residents may help you. That’s what happened to me for some 10 days. My roommates helped me. They would bring food for me. (Male, 72 years, never married, H15 unregistered)
However, this was not common to all unregistered facilities. Although there were no ‘paid’ attendants, in one facility a nun helped residents with personal care tasks, as Deepak said:
This Sister [name] takes me all by herself from the bed to the wheelchair. Takes me to the toilet for evacuation and cleans, gives me a bath, towels and brings me back here, dresses me and makes me lie down. She helps me eat food. She does everything in a good manner. (Male, 68 years, widowed, H16 unregistered)
In the only unregistered facility with a care attendant (the manager) the ratio of care attendants to residents was 1:20, whereas in the registered facilities, it was around one person for every four or five residents. The difference in levels of staff between registered and unregistered facilities was particularly stark for the largest facilities: whereas the registered facility had 19 staff for 65 residents, the largest unregistered facility had only three staff (one manager and two cooks) for 110 residents. In this facility the manager explained that “we give work to those who are able among the residents”. Many of the manual jobs described by the manager, such as sweeping, cleaning rubbish are associated with lowest castes in India and are considered degrading .
We assign the older among them such work as making brooms with coconut leaflets. If they are young, we assign cleaning and gardening work. But we rotate the tasks. For the mentally retarded elders [sic], I ask them to take the firewood... I will give the vegetables to them and ask them to handover to the cook… They do such things as sweeping and removing cobwebs. They clear the dustbins. We ask them to help their fellow residents who are bedridden. (Manager, H11 unregistered)
In registered facilities, residents were more likely to receive support with personal care and medical or health care, even if this involved making clinical appointments outside the facility. In one facility some difficulties with personal support were noted: Pratik and Padma highlighted issues associated with assisting men and women to dress appropriately and with dignity.
There is a lady nurse. She takes me to the bathroom and gives me a bath and helps me dress. But she is a woman, and she does not know how to tie the veshti. Other men around will come to help at such times. (Male, 60 years, separated, H18 registered)
That nurse gave me this petticoat without any saree. She is a nurse. Doesn’t she know that this petticoat is only suitable for a saree? (Female, age unknown widowed, H18 registered)
To support the nourishment of residents, most facilities had a set weekly menu. Residents in most facilities were satisfied with both the quantity and quality of the food that they received and Hitendra’s comment was typical of many “The food is good. Even at home we will not get such food”. There were only two facilities in which residents indicated some dissatisfaction with the availability of food and drinks. In the first facility, this was mainly in relation to ‘snacks’ that had to be purchased. This was problematic for residents such as Varsha and Udit who had insufficient income.
Here they make coffee occasionally. It is black coffee. We don’t get it daily. They give biscuits rarely. If we give money, we can get. (Female, 75 years, widowed, H11 unregistered)
I would like to eat some snacks like biscuits and omappodi. But I cannot get these. (Male, 80 years, separated, H11 unregistered)
In the second facility (H18, registered), the quality and range of food provided did not suit Padma’s food preferences or intolerances, she said:
Sour dosai. I don’t like it. If I eat this I will get leg pain. I don’t eat curd. I was advised not to eat sour things. They give just four idlies and they too will be sour. I will eat wheat dosai, but they will not give me any. (Female, age unknown, widowed, H18 registered)
In terms of providing shelter the cleanliness of the unregistered facilities varied, and this is contrasted in the following quotes from Malia and Hitendra. Whereas Malia had to clean faeces from the bathroom before she bathed, Hitendra was very satisfied with the cleanliness of the home in which he lived.
It [the bathroom] is befouled with urine and faeces. I clean it up with water and then, if I can tolerate it, I take a bath or wash clothes. I keep the clothes on my thigh and apply soap. What else can I do? Where can I go? (Female, 75 years, widowed, H11 unregistered)
The rooms and the beds are neat. They change the bed sheet every month. They sweep daily. Bathroom and toilet are clean. (Male, 83 years, separated, H10 unregistered)
Bodily health is underpinned by opportunities to have good health (i.e. access to health and personal care), to be adequately nourished, and have adequate shelter. The Tamil Nadu Minimum Standards for old age homes specify the services that should be provided to residents. These include three meals (breakfast, lunch and dinner), two refreshment breaks (tea, coffee and snacks), and weekly visits by a medical officer. Furthermore, in-house staff should include a nurse, counsellor, cook and helpers (care attendants). While these services were more likely in registered homes there was still variability in terms of the quality of the services provided, an issue that is not addressed in the Minimum Standards. Overall, unregistered care homes were less likely to provide opportunities for bodily health for residents: only one unregistered care home in the study attempted to cater for the personal care needs of residents.
Bodily integrity refers to moving freely from place to place, secure against assault. The themes ‘abuse’ and ‘leaving the premises’ (i.e. freedom to move within and beyond the old age facility to the community) were incorporated in this family node.
Residents in H14 (registered) and H10 (unregistered) were permitted to leave the premises if they gave written notice and were accompanied by an attendant. Special occasions such as weddings and birthdays often warranted longer trips away from the facilities, and Joti noted that residents could be accompanied by their relatives. Avinesh also mentioned that residents were permitted to go to local places if they were accompanied by a member of staff:
If a resident wants to go out, like attending a wedding, the person who brought the resident here should come and take the resident. (Female, 84 years, widowed, H14 registered)
The reason is that we are all old and if anything happens it will become difficult. If we request and if it is a nearby place, they will send us with an attendant. (Male, 78 years, married, H14 registered)
Only Dev mentioned being permitted to go out alone.
I can go and come alone. They allow for it. But one should go and come back properly. If we do anything unwanted, they will not allow. When they have confidence in us, they allow. (Male, 72 years, never married, H15 unregistered)
H11 (unregistered) particularly stood out in terms of denying residents freedom of movement. In this facility, most residents talked about their desire to leave and lamented the fact that they were not permitted to do so. Aanav’s reaction to a question about access to the local community was typical of residents in this facility, who expressed a desire to leave the old age home for good.
I am only thinking of when to leave this place. Even if I have to beg for food… I want to go somewhere. I don’t want to be here… If you raise the walls and put a tiger alongside, we cannot escape. Now I am with that tiger [the manager] here. (Male, 60 years, widowed, H11 unregistered).
However, it was not only unregistered facilities that failed to support bodily integrity for residents. Padma noted that she was denied access to other areas of the old age home and said ‘here we cannot move from one room to another’. She also cited an example of abuse by staff when she was initially left at the home, deserted by her family and distressed:
They first kept me on the staircase. As I kept on shouting, ‘Father Yesappa, save me!’ they took a plastic tea cup and gagged me. I fainted. Madam [the manager] went to her home. When I became conscious, I started chanting a prayer. The woman in the other room informed them. Madam came and ordered, ‘Don’t sing. Don’t pray. Shut up your mouth and lie down’. (Female, age unknown, widowed, H18 registered)
Deprivation of freedom of movement and a lack of security against assault was a particular feature of Maalia’s narrative (Female, 75 years, widowed, H11 unregistered). Her personal life history was peppered with abuse and detainment [see also, 4]. At a young age, Maalia admitted herself to a children’s home to avoid abuse at home. Thereafter, she spent the majority of her life in various facilities run by the same charitable organisation. She left briefly to marry but was abandoned by her husband when she was six months pregnant. Maalia left her daughter in a children’s home, moved into a women’s refuge and worked in the kitchen of the orphanage that she had been raised in. She borrowed ₹3,000 from the organization to arrange her daughter’s marriage (despite the organisational commitment to find suitable grooms for female residents, and meet all of the associated costs), and later required ₹27,000 for hospital fees to treat a burn sustained while working in the kitchen. After the first ‘loan’, the proprietors retained her salary (₹500 per month) for more than two decades. Eventually, Maalia’s sight deteriorated and she needed eye surgery. Unable to work to pay back another loan, Maalia requested to move to a care home for older people that was located within the cluster of facilities. Maalia was indebted to the care organization for a majority of her adult life, she was unable to escape the facility and suggested that death was preferable, “I want to pass away as soon as possible. I should hurry to vacate this place.”
With the exception H11 (unregistered), most residents were permitted to leave facilities if they were accompanied by a relative or care assistant. However, access to the community was not equal among residents. Padma (H10, registered) noted that she was not permitted to move around the facility, or to leave, whereas other residents in the same facility were able to go out if they were accompanied. Across all facilities, residents who were unable to walk (e.g. confined to bed) were rarely provided with sufficient support to move around the facility, and were not given sufficient support to leave the facility (see section on play). The Tamil Nadu Minimum Standards for old age homes have given scant attention to this particular facet of dignity for residents. The only reference to leaving the facility is in relation to ‘outings’ in which it is stated that “The inmates should be taken out on local outings like temple, fairs, plays and places of tourist interests at least once in 3 months”. This suggests that old age homes should offer planned activities, rather than facilitating the freedom of movement for residents.
Securing dignity through play, concerns providing residents with the opportunity to laugh and enjoy recreational activities. Several homes provided residents with newspapers, books and opportunities to watch the television. One old age home (H14, registered) which provided accommodation and care for Brahmins, appeared to have the most ‘occupied’ residents. This facility provided residents with a range of religiously oriented activities such as chanting mantras, prayers, reading spiritual books, watching religious series on television, and singing devotional songs. On the other hand, residents of H10 (unregistered) were mainly reliant on the television and newspapers for recreational activities, as Hitendra noted:
We will get newspapers at 10 am. We get 4 newspapers... We also get magazines... Back at home, we had to walk some distance to go to a library… They put the TV on by 9.30 am, but I don’t have the habit of watching TV. I have to read all the four newspapers. (Male, 83, separated, H10 unregistered)
There was evidence that some old age homes (H11 unregistered and H18 registered) did not provide any leisure or recreational activities. Instead, in H11 the residents who were able to work were given jobs. For example, Varsha (Female, 75 years, widowed) said “I sit at that gate [entrance of the home] and my work is to open and close it”. Saksham (Male, 84 years, widowed) said that residents who were unable to work were “Sitting quietly… Nothing else”. Despite paying fees, there were no leisure activities for residents in H18, and Pratik noted:
Breakfast will be over by 9.30 am. Then I just sit. At 1 o’clock there is lunch. From 1.30 to 4 pm, we get time to recline. What else do we need at this old age? But we have to pay for all these. (Male, 60+ years, separated, H18 registered)
One care home deliberately denied residents the opportunities for recreation, as described by Rajiv:
There is a TV in that hall. If we go there to watch it, they will switch off and say that there is no power supply, but if we come back to the room and put on the fan, it will work. So, they don’t like us to watch TV… Sometimes we get parcel food that is wrapped with old newspapers. I would carefully unwrap it and keep it for reading. I used to read the same paper again and again. You know, what they would do? They would select the food parcel with dampened wrapper and give it to me so that I cannot read it. (Male, 63 years, never married, H16 unregistered)
In other registered and unregistered old age homes, access to leisure activities was inequitable for certain residents. For example, there were few opportunities to participate in recreational activities for residents who were nonambulatory or tetraplegic, such as Deepak and Rina.
I can read newspapers. But there is no one to hold the newspaper for me. So, I don’t have anything else to do. It is just sitting or lying. If I am seated, I would keep on sitting until somebody comes and puts me to bed. (Male, 68 years, widowed, H16 unregistered)
I cannot get up. I cannot sit… My only problem is that I don’t have anybody else here to talk to. I am always lying down. If they put on the TV, I will listen to the news. I don’t go to the hall and watch TV. Who will take me there? (Female, age unknown, never married, H18 registered)
The narratives indicated considerable variation in the extent to which residents in old age homes are supported to ‘play’. Whereas some homes met the Tamil Nadu Minimum Standards which stated that “games should be played in the evening singing songs (devotional) and other past time activities may be designed depending on the age category and health status of the inmates” and that recreational facilities (e.g. books, indoor games, radio, and television) should be made available, others failed to provide any facilities, or denied residents access to these.