Mrs C and her family, current experience | Kenya

Mrs C and her family, current experience | Kenya

16 Feb 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.

Mrs Chalo moved in with the daughter when it became clear that she could no longer look after herself since she started being forgetful. Her daughter and granddaughter help her with the activities of daily living hence are likely to be the unpaid primary carers (24 hour supervision).  Mrs Chalo seems to be at the advanced stages of dementia because she has issues swallowing food, washing and even going to the bathroom. Before the condition got worse to the current state, it is possible that they may have tried seeking almost all sorts of help in terms of treatment before resorting to home care treatment. They may have sought medical attention from a public health centre around their home where the clinician (clinical officer or nurse) may have assessed and treated her physical symptoms and sent them home with a diagnosis of senile dementia. This visit is likely to have been paid out of pocket. Based on the advice from friends and neighbours to try traditional medicine, as an option for treatment of dementia, Mrs Chalo ‘s family may have tried herbal medicine as well as even going to church (faith healers) to seek pardon for the curse that the family might have assumed is the cause of dementia.

It is also likely that treatment was never sought because the family may have been in denial of Mrs Chalo’s condition (e.g. a person with dementia is waiting to die), or they lacked knowledge on dementia and /or were afraid of being stigmatized (public stigma) by the community they live in. Friends of the family and neighbours are likely to pay home visits and give advice to the family as a way of showing support (mostly emotional) to the family especially the carers. However, some friends and neighbours could be a source of stigma for both Mrs Chalo and her carers and may not want to associate with the family (associative stigma).

The constant care needs of Mrs Chalo pose a strain on the daughter who also has issues with her health. It is also assumed that the daughter is not working due to the care that her mother needs and her health issues too. The siblings are therefore likely to support her financially. In some cases, the support may not be consistent especially if there is family tension or if the siblings are not satisfied with the type of care their mother is receiving. This would ultimately cause a further strain on her finances and even her mental wellbeing therefore affecting how well she cares for her mother.

If the siblings are uncomfortable with this arrangement, the other children of Mrs Chalo could take the mother and stay with her for a while instead of coming to visit only. This will allow Mrs Chalo’s daughter some time off to take care of the mother and also time to look after her health, possibly have checkups. This will save the family a great deal of money that would otherwise be spent on a carer. Nevertheless, having another sibling to take care of the mother has its disadvantages. For instance, the mother may take a long time to readjust with the new environment and learning a new schedule of activities which may come with challenges later. Considering that this is a new role for another sibling and carers in Kenya are not trained to perform the role, the sibling may also experience carer burden that is expected when caring for a person at advanced stages of dementia. If the family was to arrange for a carer to stay with her, it would mean that the children (Mrs Chalo’s) will have to contribute the finances needed to pay a carer which is likely to further strain the daughter’s expenses since she also has her personal health to look after. It is also possible that one of the siblings sends remittances (if she/he stays out of the country) and this may contribute to financing the health care for their mother.