Sarah Low wears many hats: she is a trained pharmacist, mother of two teenage daughters, J. and S., spouse to her husband, Joshua, and caregiver of her mother, Mdm Chng, who lives with dementia. As someone who switches between her various roles and juggles different priorities, Sarah navigates her responsibilities while moving together with her family as a team.
Over the course of a one-hour video call interview, Sarah shared from her wealth of experiences of caregiving with a member of the DementiaHub.SG team.
Communication is Key
A key point that arose in our interview with Sarah was that communication in her family – making decisions together, coordinating their schedules, sharing their feelings with each other, and for Sarah and Joshua, guiding J. and S. as they make sense of what is going on in the family – has been key for the family to move together as a team.
The family of four – Sarah, Joshua, and J. and S. – were living overseas during the early days of Mdm Chng’s dementia. During this time, Sarah and Joshua had an important conversation with J. and S. about the potential decision for their family to move back to Singapore for the purpose of living together with and caring for Sarah’s mother. This conversation enabled the family to agree on and commit to their shared goal of caring for Sarah’s mother back in Singapore.
Making Sense of the Journey Together
Through conversation, the family has not only been able to align on their purpose, but also make sense of their journey with Mdm Chng together. When the family of four moved back to Singapore and Mdm Chng began living in the same household with them, the family did not only have to meet the challenge of adjusting to life in a new environment, but also to adjust to what it was like to be around Mdm Chng, who had her own routines and habits, and who now lived with dementia. Mdm Chng, in turn, also began adjusting to life in this new household.
In their initial few years back in Singapore, the family struggled with the new living arrangement. Sarah shared that this was partly because establishing new meaningful and healthy routines for both Mdm Chng and the new household of five was not an easy task. While adjusting to this living arrangement, J. and S. especially struggled to make sense of their grandmother’s behaviour, which was influenced by her condition. However, with their approach of open communication and being available to listen to their daughters’ thoughts, Sarah and Joshua were able to guide them in making sense of what was going on with their grandmother. For example, J. and S. sometimes shared with Sarah that they attributed their grandmother’s behavioural flare-ups to themselves, asking whether Mdm Chng was angry with them. In response, Sarah and Joshua explained to them that dementia affects the brain, and that Mdm Chng’s symptoms and moods could be explained by her condition. Her forgetfulness could explain why she was misplacing items, and her struggle to make sense of her items’ disappearance could have led to her suspicion that others were stealing them. Sarah and Joshua also explained to J. and S. that sleep cycle changes such as sundowning that are often experienced by persons with dementia could result in mood changes, and that a person’s judgment, reasoning, and decision-making skills often decline with dementia. The two parents explained to their daughters that the changes in mood and thinking that Mdm Chng was experiencing could explain the changes they saw her going through, and that these changes were not their fault.
Everyone Plays Different Roles
Sarah shared how she and Joshua have talked with their daughters about the important roles they have played in caring for Mdm Chng. Over the past few years, J. and S. have shared with their parents that they felt they had not done much for their grandmother. In response, however, the two parents reminded them of how their presence at home helped Mdm Chng: they acted as “the eyes and the ears to see that […] their grandma is safe at home,” and because of this, “just [J. and S.] being around is important.”
Mdm Chng, as an older adult, has a higher fall risk, and J. and S. having a watchful eye on their grandmother at home has kept her physically safe. In addition, with the aid of digital devices, J. and S. have been able to inform their parents quickly of any updates regarding Mdm Chng when Sarah and Joshua were both not home. These were some roles that Sarah and her husband reminded their daughters they had been playing while affirming them that they had in fact been supporting their grandmother, emphasising that they should not “belittle the little that you can do.”
Sarah shared with us about how Joshua has also played an important role in caring for Mdm Chng. While balancing both work and family back in Singapore, Sarah and Joshua went through different working arrangements, where for the first three years, Joshua worked part-time, after which Sarah began to work part-time, and he, full-time. This arrangement allowed them to spend more time with Mdm Chng during their hours not spent at their jobs. In addition, Joshua has been very involved in and available for either directly caring for and spending time with Mdm Chng, or in caring for the family. He cooks for the family, ensuring all family members, including Mdm Chng, spend time having regular meals together; he also takes the time to have conversations with Mdm Chng. Crucially, Sarah and Joshua care for Mdm Chng in what she terms a care “partnership”. This coordinated and united way of caring for Mdm Chng together is an example she wants to set for her children, because with this example, “they too want to join in.”
Living Daily Routines Together
Living together with shared family routines is also important to Sarah’s family and it is a crucial way for Mdm Chng to be included in family life. Amongst other things they do together, mealtimes are important to the family. In Sarah’s own words, “wherever possible, my family will always gather together for dinner, sit together, and have conversations.” Sarah also pointed out that unlike how her mother eats regularly with the family when living with them, she used to eat alone, and only when she was hungry, when living alone. In this way, the family’s emphasis on having meals together often makes it possible for Sarah’s mother to have regular, almost daily social time with family members, and ensures that she is physically cared for with regular meals.
Mdm Chng also has scheduled programmes for different days of the week, around which the family members plan other routines with her. On days when she goes to the daycare, family members wake her up on time to get her ready for her transport to the daycare centre. Upon her return home from the centre, Joshua often helps her settle in back at home by greeting her, getting her snacks, and having a chat with her about her day.
On other days, Sarah or Joshua often spend time together with Mdm Chng with activities that she is familiar with, such as Sarah playing the guitar for her and singing her favourite songs together. Once a week, they also bring her on a routine walk down to her favourite coffee shop to have a breakfast together. With these routines, Mdm Chng has an abundant amount of time with her family members, and has a familiar, regular schedule in which she is engaged meaningfully.
In a reflective moment, Sarah shared that what she thinks brought her family back to Singapore is their desire to be able to look back at this time that they spent with Mdm Chng and not say that they wished they were able to do something back then, but rather, that they had no regrets. With this in mind, she emphasised that it is important for people to take the opportunity to spend time with those who are close to us who are diagnosed with an illness, as her family does with her mother.
A Wider Societal Culture of Caring Together
Towards the end of our interview, Sarah shared her heartfelt thoughts about what a dementia-inclusive society could look like. Modifying the often quoted saying that “it takes a village to raise a child,” she stressed that “it takes a village to care for the elderly” and for persons living with dementia. In such a “village”, there would be empathy and patience expressed for persons living with dementia. In Sarah’s vision of such a society, primary caregivers would not shoulder the burden of caring for persons living with dementia alone but would be well supported by family members. Community groups and people of different ages could also visit persons living with dementia in their homes to have meals or engage in activities together. In this way, persons living with dementia and their families would be better supported by their communities. This would be a step in the right direction towards what Sarah’s vision of a village that cares for persons living with dementia together.
The DementiaHub.SG team would like to thank Sarah for sharing so openly in our interview about her family and their journey with her mother who lives with dementia.
ABOUT THE CONTRIBUTOR
SARAH LOW
Sarah Low is a dedicated pharmacist with specialised training in geriatric care, and a keen interest in palliative care. She returned to Singapore in 2018, where she and her family assumed the role of caregivers for her mother, who was diagnosed with dementia. Despite the absence of a domestic helper, they have provided care, leveraging respite services such as dementia daycare. In addition to her clinical work, Sarah is an advocate for self-care among caregivers and shares her insights through her blog, thrivingcaregiversblog.wordpress.com.