Mrs C and her family, current experience | India

Mrs C and her family, current experience | India

03 Mar 2022

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About five years ago Mrs. C started to become forgetful. Now, 75 years old, Mrs. C hardly ever leaves her room in her daughter’s house where she was moved when it became clear that she could no longer look after herself. The daughter and her granddaughter help her with dressing, eating, washing and going to the bathroom. The family has to make sure that food is not too chunky as Mrs. C has difficulty swallowing. It is difficult for the daughter’s family to go away together for the day as someone always needs to be around to look after her. The constant care needs in addition to her own family responsibilities also pose a strain on Mrs. C’s daughter has her own health issues. Mrs. C’s other children visit during holidays but find it difficult as she cannot always remember who they are.

About five years ago Mrs Chatterjee started to become forgetful. Now, 75 years old, Mrs Chatterjee hardly ever leaves her room in her daughter’s house— located in a metropolitan city—where she was moved when it became clear that she could no longer look after herself. The daughter and her granddaughter help her with dressing, eating, washing and going to the bathroom. The domestic help also provides additional support with caregiving. The family has to make sure that food is not too chunky as Mrs Chatterjee has difficulty swallowing. It is difficult for the daughter’s family to go away together for the day as someone always needs to be around to look after her. Mrs Chatterjee’s other children visit during holidays but they find it difficult as she cannot always remember who they are. Mrs Chatterjee has also started displaying some changes in behaviour.

Mrs Chatterjee’s granddaughter suggested that her mother (Mrs Chatterjee’s daughter) take Mrs Chatterjee to a psychiatrist. Mrs Chatterjee’s daughter was initially reluctant to do so, as she was worried what the neighbours would think if they found out that she was taking her mother to see a psychiatrist. On the insistence of her daughter, she decides to visit a psychiatrist at a public hospital in their city. The next day, Mrs Chatterjee and her daughter visit the outpatient department (OPD) of a public hospital (30-40 minutes journey). They find that the psychiatric OPD timings are over for the day, so they have to come back another day. They come back a few days later, but the waiting time is long and they end up waiting for a few hours before they can see the physician. During this time Mrs Chatterjee gets increasingly agitated and the daughter almost considers going back home. Finally they manage to see a psychiatrist, who informs Mrs Chatterjee’s daughter that they need to do a few tests including an MRI and a neuropsychological assessment, but the waiting time to get these tests done is 1 month and 3 months respectively. The consult and tests are subsidized (assessment made by public hospital and is based on the family’s socioeconomic status) and paid for out-of-pocket. The family provides care as usual as they wait for the tests to be conducted. During the follow-up, the psychiatrist reviews the reports and diagnoses the mother with Alzheimer’s disease. He prescribes a few medications and refers them to a social worker at the hospital to provide them with further guidance. The social worker explains the diagnosis and advises the daughter to take Mrs Chatterjee to a day care center located 15 km away (1 hour by auto-rickshaw (three wheeler public transport)) from their house. The daughter has a discussion with her husband, and they agree to take Mrs Chatterjee to the day care center the psychiatrist suggested, as it is run by an NGO. However, the daughter is unable to take Mrs Chatterjee to the center daily due to her own household responsibilities and only manages to take Mrs Chatterjee to the centre once or twice a week. The daughter begins to attend a few caregiver support meetings at the center as well whenever possible. As Mrs Chatterjee symptoms progress, the burden of caregiving falls heavily on the daughter, who spends a minimum of 8-10 hours per day providing care. The granddaughter also helps when possible and spends around 2 hours per day providing care to Mrs Chatterjee. The constant care needs in addition to her managing her own family responsibilities has placed a major strain on the daughters marriage as well as her health.