When caregiving is complicated by age, gender and poverty

There are age-dependent themes in conversations between friends. In the late 20s and 30s conversations tend to be about marriage, children, schools etc. In the 40s and 50s conversations move towards care of dependent elderly parents. In a typical middle class family caregiving for dependent elderly parents is included as one of the routine responsibilities. The living arrangements may not be amenable to providing physical care. Nevertheless even from a distance, the care responsibilities are often there and they are a major part of monthly budget planning and planning of day to day life. My parents are quite independent in many aspects, but the worry about how they navigate the new digital world, electronic transactions and everyday life which has now strongly become technology dependent is a constant lingering one. Yesterday I saw a patient in our clinic and her story was such a stark contrast to this situation. 

Mrs. M came to the clinic with a swelling of her left foot, severe pain in the foot and difficulty in walking. She was accompanied by her daughter. She came from very far away, almost 50 KM away from our clinic.  

"I have gone to all kinds of doctors. I have taken all kinds of tablets and injections. This pain is bothering me and will not go away. It has been bothering me since 2 months now" she said. She sounded frustrated and sad and did not have much hope from this visit to our clinic either. "I came because my daughter compelled me to come here. She lives nearby, she came to you and she felt better. So she has brought me all the way here." Mrs. M was a petite elderly woman of 75 years age. She had aged very gracefully. There was a grace in the way she had draped her cotton saree. The saree was old and weathered, but there was a class in the way she was carrying it on her. She was well groomed and had a big round vermilion pottu on her forehead. 

I examined Mrs. M and found that she had severe pallor, indicating that her nutritional status was very poor and blood levels very low. On examining her left foot, there was a swelling. The ankle joint creaked when I moved it and it was very painful for her. It looked like the joint had worn out and developed degeneration with years of use. 

"I used to work in the fields as a manual labourer for many years. Up until 1 year ago, I even used to work in the National Rural Employment Guarantee scheme. It is just now that I am unable to even walk fast." Mrs. M said with a huge sigh. As we were talking Mrs. M was hesitating a lot and I got a feeling that she wants to say something but is holding back. So I asked Mrs. M, "Is there anything else you want to tell me? How are you feeling overall? Are you feeling peaceful?" One of the things I learned very early on as a medical doctor is the importance of asking patients about their mental health. This question is often skipped in a typical clinical encounter. But if we do make it a point to ask "How are you feeling today? Are you feeling peaceful?" In Tamil it would be "Innikku manasu eppadi irukku?" (How is your mind today?) I have noticed that it often reveals a lot of mental health issues in patients. It is well known that poor mental health can also manifest as physical symptoms like back pain, neck pain and headaches. When I asked this question to Mrs. M, it was the right cue and she started narrating her life circumstances. 

75 year old Mrs. M was living with her 80 year old husband and a 50 year old daughter in a small hut in their village. The daughter who had accompanied her to the clinic was the second one, who is 45 years old and lives in a village near our clinic. Mrs. M broke down and started crying she narrated the story of her 50 year old elder daughter. "My elder daughter studied up to 10th standard. She is very intelligent. She talks very well. She is very good in mathematics and even now she does all household accounts in her mind." having said this Mrs. M paused and sobbed. I did not understand what the issue was. I waited for her to resume her narration. "When she finished 10th standard, she developed a fever. Following the fever, she became very sick and we admitted her in the Government General Hospital. At that time suddenly she lost the ability to use her upper and lower limbs, all four of them. I kept her in the hospital for almost 5 months. But by then our life had completely gone haywire because of the hospitalisation. Even though government hospital treatment is free, I had to be there in the hospital with her all the time. Though they gave food free for her, I had to also eat. All this was costing a lot of money which we could not afford. And all affairs at home were left unattended and I couldn't go to work and there was no way to meet our everyday expenses if I did not go to work. So against the doctor's advice I brought my daughter home. I am a horrible mother. I should never have brought her home like that." saying this she broke down again and started crying. I don't know the exact diagnosis, but it seemed the daughter had some form of autoimmune myelopathy or dysfunction of the nerves in her spinal cord paralysing her limbs. 

I sat silently listening to her. After a 2 minute pause, she resumed, "My daughter has been bed ridden from then. I have been doing everything for her including toileting, bathing, menstrual hygiene and everything for her since then. When she was a young girl, it was ok and I did not have much problem doing all this. But now she is also heavy and I am also old. I am unable to manage this. I don't know what to do. Every day when I pray to God, I am asking God to take her away." Mrs. M couldn't control herself while she said this and broke down into heavy sobs. Society imposes heavy judgments on women when they prioritise themselves over their families and children. I have noticed that many women prefer to suffer in silence fearing this heavy judgment and criticism. But for a woman to actually come out and say to someone whom she has just met for the first time, "I wish God takes my daughter away" it must be the breaking point for her. I was starting to see that a large part of her health problem is also coming from this huge psychological and emotional baggage that she is carrying. Mrs. M also shared some very dark and personal stories of how she has tried to help ease her daughter's misery and suffering. But out of respect for her pain, I refrain from sharing those stories here. "Is there anything else you can do for my daughter?" she asked me. I did not know what to tell her. I promised to talk to any NGO working with persons with disabilities to see if some home care kind of arrangement or admission to some care facility can be arranged. I took her mobile number and sent her away with some treatment for her foot. 

Caregiving can be extremely stressful. There is some respite when it is the young providing care for the older, because the caregiver has physical and mental energy to do so. But when it is the other way round, caregiving itself can worsen the health status of the older person. When poverty is thrown into the mix, the situation is worse. There is also a disproportionate burden of caregiving on the women of the household. Mrs. M had everything going against her, age, gender, poverty, all superimposed on the immense burden of caregiving. As states like Tamil Nadu move towards improved health indicators, it is important to start looking at providing better quality of life to people marginalised by various social axes such as poverty, gender, disability and age. I am now discussing with NGOs to see what best we can do to this elderly mother. I am sure there are many others like her and helping them all is an important task, one mother at a time.