Caregivers’ experience and perception
The caregivers' experience varied to some extent, as each respondent has his/her struggle in providing care. They were mostly involved with patients during the diagnosis of disease, process of treatment and care provision.
Caregivers’ emotional sufferings
The female caregivers were more actively involved, notably, working female caregivers contributed to the treatment process for both the male and female patients. The financial burden as well as witnessing the pain of their close ones caused emotional stress. The caregiver-respondents were more committed to their patients in the early stage of the disease because they perceived that taking care during the early stage of the disease would prevent further complication and the condition would not deteriorate further. In addition to being the breadwinner of the family, they had to care for the patient that included feeding and bathing, helping them in the toilet and washroom. The only male caregiver mentioned that he assisted his wife in bathing or going to the toilette and or fed her after he came back from his tea shop. Not much time is left for oneself after completion of all the activities and taking care of the patient.
The financial struggle of the caregivers
Almost all of the caregivers shared that they are in a destitute condition, and are in constant need for money. Those caregivers who are working outside start taking care of their dependents after coming back instead of taking rest. Their daily activities included washing, cleaning, grocery shopping, cooking for the household, filling up the containers of water, and ensuring that all the family members are adequately fed.
“I do the grocery shopping and cleaning. I also have to take care of mother- bathing her, feeding her, grooming her (making hairstyles). Then, there are clothes of the children which need to be washed. All in all, a lot of work. Sometimes I become tired. (CG_Female_25–30 years old)
As almost all of them were impoverished or living on daily wager and this made bearing the cost of treatment even more difficult. Some of them had to spend all their savings for the treatment of their patients and later forced to borrow money. Few of the respondents had taken out loans which they needed to pay back in instalments, an added stress for them. They could not ask for financial help from other extended family members because they also lived on limited income. The caregivers felt helpless because of the uncertainty and suffering of their loved ones. One of the respondents narrated;
"The pain of poverty is massive… If I had property I did not have to ask for money or help to people. If I had money I did not have to go out for work, I could take care of him at home. If I do that now I will have no money to sustain us. I have to work outside, then when I come back home, I have to clean him, feed him… That's why I want that Allah should take me to Him than keep me in this suffering and pain." (CG_Female_45–50 years old)
The feeling of overburden and emotional distress
Taking care of the patient was an added pressure in their real stressful life. One female respondent felt no one could understand her pain and suffering. Although she suffered and lost a lot, the Almighty who sent her did not ascribe any happiness.
After taking care of the patients for such a long time, all caregivers were habituated with the debilitating condition of the patients. Also, they became frustrated, irritated or disturbed by running the household round the clock and taking care of the patients. They had their own responsibilities to fulfil- taking care of the chores, the children, working to earn money so that they can run the household and pay for the treatment- hence, giving the full attention to the patient did not always come naturally. But they also felt the inner conflict within themselves during these moments, as they believed it was their prime duty to take care of their family. Not doing so distressed them emotionally, and they suffered from a guilty conscience.
“How can I not care for her? How can I leave a person by herself in such an ailing condition? It makes me feel guilty (bibeke badha deyi). My husband also asked me to take care of her as she may not have long to live." (CG_Female_20–25 years old)
The only male caregiver shared the same feelings, and opened up about his emotional attachment with his wife as well. He felt exceedingly sad for his wife’s ailment as he could not share his life with her anymore. This actually showed how the patient’s illness had disrupted the caregiver’s life and household.
Double burden of women caregiver
Women were affected more by the need for care at the end of life. While the male patients received care from their wives despite their wives' own ill health and busy working schedules, the female patients were often deprived of adequate care from their spouses or family members. Moreover, they had to look after the routine household tasks despite their illness. Terminally ill women were also often alone as their husbands had died earlier. We found only one female patient received some assistance from her husband like, buying the medicine but most of the time she had to manage the household and her own needs by herself. She described,
‘Whether I am sick or not, I have to do all my household chores. Sometimes I cannot move but have to work. I feel aches but there is no option. I have to take care of my two grandchildren and my husband. But by the grace of God, ‘till now I haven’t collapsed; in that situation someone will have to take care of me. So far, I can manage everything- I am doing all the chores by myself.’ (Patient_ Female_55–60 years old)
The responsibility of taking care of the palliative care patients often fell on the females of the household. As six among nine caregivers were working women, it reflected the fact that they maintain the household as well as take care of the palliative care patients. They also mentioned repeatedly that they have to work, otherwise they will not be able to sustain the family, as well as that it becomes a burden that the patient cannot work. Mostly the responsibility of taking care of the patient fell on the wife or the daughter in law of the patient. Sometimes the sister (2 among 9 caregivers) of the patient also played the role of caregiver. In only one of the cases, patient’s husband took care of her.
Coping with the sufferings by patients and caregivers
Despite all of the hardships, several patients were still looking forward to a miracle. They were hoping to be cured and living a long life. Respondents who lived with an extended family and had people around to look after them were more optimistic than those who lived with their spouses only. Almost every patient expressed their desire to return to their normal and disease-free life when they could earn and were able to do their household chores. They mentioned repeatedly that they missed their earlier active life. The majority of respondents said regular working life, family life, and their life before the illness was the best part of life.
‘When my husband was alive, I had my own household (shongshar) that time was the best time in my life. Till now I think about those wonderful days.’ (Patient_ Female_75–80 years old)
In our study, all the participants were theists and they found peace by practicing their religion. They believed they will be cured if Allah wishes them to be. This belief gave them a comfort and alleviated their sufferings. One patient told,
‘I wish Allah will help me to recover soon. I have no regrets. I pray to Allah for my soundness. I do pray every time and seek forgiveness to Allah…Sufferings come from Allah and only he can relive it. So, I do pray all the time for my recovery ….’ (Patient _Female_75–80 years old)
Along with praying, many of the patient-respondents mentioned that they felt happiness and peace while playing with their grandchildren.
The patients also spent significant amount of time with the community. Non-bedridden male patients regularly walked to the markets, shops, mosques or chatting neighbours. Almost half of the respondents said that had good relationships with their neighbour’s that contributed to a better life. Several respondents explained that their neighbours were friends and male patients spent their leisure time with them.
In case of the caregivers, whatever the condition of the patients, they were optimistic and hopeful about their patients, that one day they would get better and would live a longer life. The situation reminded them about their own fate and health, bringing them close to the realization that this illness could have happened to them as well.
“I feel like crying at times. I don’t blame anyone for my misfortune, God has given me this. I console myself saying that this could have happened to me as well. When these thoughts come to my mind, when I talk with people like I am talking with you about these issues, this makes me emotional.” (CG_Female_65–70 years old)
And in the end, even though they had to suffer as well with their patient’s, they still loved them dearly, and that is what motivated them to keep taking care of the patients.
How the community-based palliative care project ‘Momotamoy Korail’ supported the urban slum dwellers and their perception towards the Palliative Care Assistants (PCAs)
Enrolment in ‘Momotamoy Korail’ programme made the respondents both the patients and their caregivers more confident and contented. They repeatedly recognized the positive effect of the services provided by the programme. The respondents were very happy to receive the medicine, advice from the doctor visit, food package and the emotional support from the PCAs. The food packs ensured their food security. They all showed satisfaction with the contribution of the PCAs in their life. The PCAs made the family members, relatives and neighbours of the respondents realize the importance of taking care of the terminally ill or elderly people. The PCAs visited the patients’ house, spent time and talked to them and their family. They were providing physical, social, mental and spiritual support to the respondents. As part of physical care, they help the patients doing physical exercise or helping them take a walk who cannot move easily or have severe pain in the body or are physically paralyzed. They often visit patients’ house and gave company when they feel lonely or stay alone at home. They help them to take regular medicine doses, to take baths, and sometimes cut their nails too. Sometimes they clean the lonely patients house, make the bed, clean their dishes, do the shopping and cook for them. However, social care is mostly about counselling the family members or relatives of the patient.
Regarding mental support, some of the patients were worried about their impoverished condition. They were stressed and disappointed, witnessing their children's negligence towards them. In such situations the PCAs tried to spend more time with the patients, provide emotional support and instil confidence in them with their positive views toward life.
“Girls wearing blue dress (PCAs) visit our home and care for us. They loved us a lot. We share our problems and thoughts to them. They are like our family. We feel relief to see them” (CG_Female_60–65 years old)
All respondents felt grateful to the PCAs. As the PCAs recruited from the community and lives in this community, the patient family knows them and have confidence in them. Whenever the PCAS visit a patient’s home, they (patient’s family) do not let them leave and if they are late or miss to visit them for any reason the patient gets emotional.