There have been many times in the past two years when Khairul felt he was heading towards a breakdown. Caring for his 78-year-old father who is coping with the debilitating effects of Parkinson’s has been tough, both physically and emotionally.
Khairul’s father, a retired schoolteacher, has always been the pillar of strength in his family and community. Even after he was diagnosed with Parkinson’s, he tried to continue living independently. But when his condition worsened rapidly in the past two years, Khairul persuaded his parents to move in with him.
Caring for his ailing father was tough – physically, mentally and emotionally. But the 40-year-old web designer wants to do it, even if it means scaling back on his work to tend to his father. But it also means that Khairul is stretched thin and has less patience to reason with his 74-year-old mother who tries to help him.
“One day, I came home to find her lying down in pain. She had fallen while trying to support my dad to the bathroom for his bath. This pint-sized old woman was trying to support a man more than twice her size.
“I had to hold myself back from yelling at her. What if she hurt herself seriously? I’d have to look after both of them and then what?” Khairul vents, before quickly apologizing for raising his voice.
Khairul’s struggles are shared by many caregivers of the elderly as their task is a demanding one. Caregiver stress or caregiver burden are commonly used terms to describe the financial, physical and psychological problems that family members experience when caring for older adults who are impaired or suffering from illness, says Universiti Malaya lecturer Associate Professor Dr. Farizah Mohd Hairi, who is with the Medical Faculty’s Department of Social and Preventive Medicine.
“There are various factors that contribute to caregiver burden: the multiple demands on the caregiver, lack of control over the situation, loss of social support, deterioration of the elder person who requires care, duration and intensity of care, the unpredictable nature of the illness and also the difficult behaviors of the elder care recipient.
“Even though we have some formal services for older adults such as the Senior Citizens’ Activity Centre under the Welfare Department, families and friends still provide 80 per cent to 90 per cent of the care for the elderly,” notes Dr Farizah.
Sometimes, when the older adults have dementia or other conditions that cause a progressive decline in their ability to function, the role of the caregiver will evolve and stretch on for years.
“Even in situations where they don’t have such illnesses, families often deal with cumulative conditions (brought on by age) that require medical care or rehabilitative services. And often, the caregivers have to look after more than one parent or other relatives, on top of their own daily responsibilities. It isn’t easy,” says Dr. Farizah, who is part of the university’s Prevent Elder Abuse and Neglect Initiative (PEACE).
Caregiver stress, however, isn’t a topic that is often discussed, particularly when it comes to caring for the elderly.
“Children are expected to bear it and carry on. But the effects of caregiver stress can be long-lasting and damaging,” she points out.
In many families, resentments over caring for the aged could lead to family discord and even break-ups. If caregiver stress is not managed, it could lead to other effects such as depression, disturbed sleep, career interruptions, financial difficulties, a lack of personal time, poor physical health, psychological, emotional and mental strain as well as feelings of anger, guilt, grief, anxiety, hopelessness and helplessness.
However, if caregivers recognise their stress early and take measures to manage it, the experience of caregiving can be positive and affirming.
Under PEACE, Dr. Farizah and her team are conducting workshops for caregivers on how they can recognize symptoms of stress and learn to manage it.
“We need to raise society’s awareness about this very real condition. Many may be experiencing this burden but may not realize or acknowledge their problem. We need to place more importance on caregiver well-being. We should look at how caring for a dependent loved one can be a positive experience. With the proper support and stress management measures, caregiving can give us personal growth, strengthen relationships and give us a deep sense of satisfaction,” she says.
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