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Seriously ill herself but she cares for schizophrenic husband and his father with dementia

Housewife Cityruth Cocoanna Christian has for 10 years been struggling with a failing heart and kidneys, while taking care of her schizophrenic husband.

Ms Christian, 44, also helps her husband care for his father, who has dementia and lives alone with a helper, by providing home-cooked meals and keeping an eye on him through a closed-circuit television.

She said she feels stressed caring for her husband and father-in-law on top of her own condition, and hopes for more government support in the form of grants and financial aid.

“Caregiving is a full-time job, but it’s not paid,” she said.

The couple get by on income from renting out their executive Housing Board flat, after she had to retire from her job as a pre-school principal due to her heart and kidney disease. She has had multiple operations, needs thrice-weekly dialysis, and has to use a wheelchair.

Ms Christian is not the only caregiver who is overwhelmed.

A survey by consumer research company Milieu Insight in partnership with the non-profit Caregivers Alliance in July found that 51 per cent of primary caregivers want mental health support, and only 33 per cent feel they are receiving enough of it.

About 51 per cent of the primary caregivers surveyed reported feeling stressed “often or all the time”, compared with 40 per cent of the general population.

Social workers and academics said caregivers should share the caregiving burden with other family members, seek out respite care, and take time for self-care.

Ms Christian said she is burnt out from conflicts with her husband’s siblings, who disagree with her plans for caring for their father.

She added: “My motivation to keep living is what will my husband do if I’m not around?”

Ms Jacinda Soh, head of Touch Caregivers Support, said that as Singapore is reopening in the third year of the pandemic, caregivers may feel a “lingering anxiety” about making care arrangements for seniors.

“If they decide to put their parents back in senior care centres, and their parents get Covid, they may feel guilty and blame themselves,” she said.

She noted that it is common for caregivers to burn out in the first six months of caregiving if they do not have a plan for respite.

For parents caring for special needs children, for instance, the caregiving journey may be 20 years or longer, she said.

“Burnout happens when you don’t see an end to it.”

She said social service providers should ask caregivers how they are coping, and not just update them on how their care recipients are doing. “Caregivers need to be reminded that they matter.”

Those caring for parents with dementia struggle with the day-to-day uncertainty of erratic behaviour and unpredictable mood swings. These caregivers initially have to focus on communication and later on, as the dementia worsens, with the physical handling of their bed-bound parents.

Those caring for someone with mental health issues have to consider how much medicine to give, as it could make their loved ones drowsy, while ensuring they take their medicine consistently.

They also have to figure out how to help their loved ones continue their job and hobbies while managing their mental health issues.

She said the multitude of care options can be overwhelming for caregivers, who can call the Touch Care hotline to discuss the options and be directed to suitable services.

Japanese studies professor Thang Leng Leng, who does research on ageing and caregiving, said sole caregivers could feel isolated with the bulk of caregiving responsibilities, and need a backup plan as well as to ask for help from their family members when they burn out.

She said some are caregivers despite needing care themselves, such as elderly women who care for their husbands. “It can be a very isolating experience if you don’t have a network.”

Experts stressed that caregivers should recognise they cannot shoulder the burden of their caregiving responsibilities alone, and get the help of loved ones they trust.

Ms Ong Lay Hoon, who oversees the caregiver support services in the Movement for the Intellectually Disabled of Singapore (Minds), said caregivers should seek respite care and interact with other caregivers, in order to feel that they are not alone.

She said the Caregivers Alliance and Minds run support groups for caregivers and training for caregivers of those with special needs. The former also runs workshops for caregivers of those with mental health issues and dementia.

Mr Alan Pek, who has cerebral palsy, and his wife care for their 16-year-old daughter, who has global developmental delay.

His daughter is studying at Minds Lee Kong Chian Gardens School, but he worries about where to move her when she graduates in two years, and beyond that, what will happen to her when her parents are gone.

He said it is getting more difficult to manage his daughter’s meltdowns as she grows older, and his family feels burnt out from caring for her.

Mr Pek, who has worked for 25 years in IT in Deutsche Bank, added: “I’ve forgotten how to give up, or burn out.”

CAREGIVERS/CAREGIVINGDementiaMental Health