Mrs C and her family, current experience | Indonesia

Mrs C and her family, current experience | Indonesia

17 Oct 2022

← All countries
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.

Mrs. Cicih has two daughters. She lives with her first daughter, who has a small bakery. She is currently largely dependent on her daughter in doing daily activities such as preparing food, taking a shower, or going to the toilet. Her daughter is struggling to help Mrs Cicih with all these activities, given her business and her health problems. The daughter herself is also currently being treated for back pain problems and experiences back pain when doing certain activities. Therefore, Mrs. Cicih’s granddaughter also helps her in doing some of her daily activities.

The house is located just behind the bakery. The first year Mrs. Cicih moved in with her daughter, she often went to the bakery and try to help. However, this has made customers scared or uncomfortable because sometimes she gets easily angry or scolds customers’ children. Therefore, the daughter decided not to let her mother come into the bakery anymore and locked the connecting door between their home and the bakery at all times.

Mrs. Cicih’s family brought her to a consultation with a family doctor close to their house when she started becoming forgetful. This family doctor referred her to a neurology specialist at the 2nd  level hospital which they paid under their own expense. Mrs. Cicih was diagnosed with dementia, besides an uncontrolled hypertension and high cholesterol level. She was prescribed several medications: antihypertensive and cholesterol drugs, dementia medication (Donepezil), all paid OOP (by Mrs. Cicih’s second daughter). Mrs. Cicih did not use the JKN (national health insurance), because the closest hospital providing the service she needs under this scheme is too far from her home.

After prescribed Donepezil for 5 years, the family reported there is no improvement and Mrs. Cicih seems to deteriorate faster. The doctor recommended adding Memantine, but the price of the drug is expensive, and is not yet included in the JKN-covered list of drugs.

Two years ago, Mrs. Cicih had a stroke, and since then has had swallowing problems. For her swallowing problem, a routine swallowing therapy is done once a week in the hospital with a speech therapist. However, in the last 2 months her daughter was unable to facilitate visits to the hospital due to time constraints in managing the bakery that could not be left behind and the current condition of Mrs Cicih’s disease. Currently, the hospital where Mrs. Cicih is being treated is not able to offer online consultation yet, so Mrs. Cicih has to come to the hospital, which poses her to a higher risk of contracting COVID-19 during this pandemic. Due to the pandemic, now the swallowing exercise is done at home with a speech therapist on the family’s expense.

Mrs. Cicih’s granddaughter is studying in a university, but often had to miss her classes when her mother is busy with the bakery and someone needs to care for Mrs. Cicih. Mrs. Cicih’s granddaughter found information about dementia and Alzheimer Indonesia from social media and contacted the organisation. Since then, the family has participated in several Alzheimer’s Indonesia support group activities. These activities have helped the family to increase their knowledge about dementia. They are aware that they need to divide responsibility so that the burden of caring is not only shouldered by the first daughter and the granddaughter. However, it is hard for them to seek help from other family members, as all their extended family members live across the country.

Mrs. Cicih’s other daughter who lives outside the city sometimes visits her, but Mrs. Cicih was not very close to this daughter, and no longer remembers her. Therefore, the two daughters giving care alternately to Mrs. Cicih was not a favourable option. The daughters had previously come up with an agreement that the one who lives far helps in financing Mrs. Cicih’s healthcare costs, and they intend to continue this. Although they have come up with this agreement, there are sometimes arguments and tension between the two daughters, as the first daughter (who has experience burnout) often feels left alone or ‘lectured’ by her sister on how to care for their mother.

In their culture, caring for older people is usually done by a female member, especially when the older person is female. Therefore, Mrs. Cicih’s daughters do not think it is possible to involve their husbands in the care. Moreover, Mrs. Cicih’s son-in-law who lives with her works 9 to 5 as an employee in a medium-scale company in their town, and often has to stay for overtime.

Mrs. Cicih’s first daughter had also thought of entrusting her mother to the nursing home with her current condition, but she was worried about the stigma it will bring upon the family. In her area, just like almost everywhere else in Indonesia, she might be viewed as not taking responsibility and giving attention to her parents by entrusting her mother’s care to a nursing home. She is also scared of ‘committing a sin’ by doing it. Besides that, Mrs Cicih’s daughter is worried that her mother will meet other older people with serious mental problems. Not all nursing homes are trained on providing care for people with dementia, and some nursing homes also do not accept people with dementia. She has been looking for a good quality nursing home which staff are trained in dementia, but the fee is very expensive, starting from IDR 21 million/month (approximately 1450 USD, as per June 2021).

She has also been trying to find a professional caregiver, but the cost (although lower than a nursing home) is still a barrier, especially during the pandemic, which reduces her bakery’s profit. A paid caregiver experienced in caring for older people can cost starting from IDR 4.5 million/month. Therefore, in the meantime, they keep the caring arrangements as such.