She has heart failure but cares for husband who has schizophrenia and his father who has dementia

Caregivers should share the caregiving burden with family members, seek out respite care and take time for self-care. PHOTO: ST FILE

SINGAPORE - Housewife Cityruth Cocoanna Christian was diagnosed with heart and kidney failure 10 years ago, and she grapples with the conditions while taking care of her husband, who has schizophrenia.

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 conditions, and hopes for more government support in the form of grants and financial aid.

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

The couple get by on an 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 failure. She has had multiple procedures and undergoes thrice-weekly dialysis, on top of having 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 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.

“My motivation to keep living is what will my husband do if I am not around?” she added.

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 the elderly.

“If they decide to put their parents back in senior care centres, and their parents get Covid-19, they may feel guilty and blame themselves,” she said.

She added that it is common for caregivers to feel burnt 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,” said Ms Soh.

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

Those caring for people with mental health issues have to consider how much medicine to give – it could make their loved ones drowsy – while ensuring the patients 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. They need to have a backup plan and to ask family members for help when they feel burnt out, she added.

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.”

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 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, 58, who has cerebral palsy, and his wife care for their 16-year-old daughter, who has global developmental delay – a condition where a child takes longer to reach certain development milestones than others at the same age.

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.

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 information technology in Deutsche Bank, added: “I’ve forgotten how to give up or burn out.”

He also worries about what will happen to his daughter when he and his wife die.

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