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Easing the caregiving load

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Easing the caregiving load

When 28-year-old Venus Lim quit her job to care for her 61-year-old mother, Madam Theresa Lim, she faced many challenges as an only child and sole breadwinner. Assisi Hospice was able to provide practical and emotional support that helped ease her burden.

Madam Theresa Lim was sold to her adoptive parents when she was eight years old.

She did not have the chance to go to school and received frequent canings. Having had an unhappy childhood, she chose to raise her daughter, Venus, single-handedly after discovering that her partner had been unfaithful. She worked as a night- shift waitress so as to take care of Venus during the day. When Venus was older, she worked 12- hour shifts in a bakery. Eventually, she managed to support Venus through polytechnic.

Just when Madam Lim thought she could have more time with Venus, she developed hearing difficulties in her right ear, and was diagnosed with nose cancer in 2020.

Venus had been working for a few years after graduation and was being considered for a promotion. Initially, she took leave frequently to bring Madam Lim to the hospital for her radiotherapy, chemotherapy and other appointments. However, she tendered her resignation after three months into her caregiving journey. She said, “Even though my boss was understanding, I found it difficult to juggle both work and taking care of Mum.”

She stopped work for about a year and found a new job with more flexible working hours when Madam Lim seemed to be recovering. But after eight months into the new job, she resigned again when Madam Lim suffered a relapse. Caregiving became more challenging as Venus’ mother started having difficulties swallowing solid food and lost her appetite. She experienced impaired hearing and vision, facial pain and swelling, and was also prone to falls.

As a caregiver, Venus felt that one of the challenges was the amount of new information she had to absorb within a short time. She had to read up on Madam Lim’s illness and symptoms, the different medications and their effects, to help better manage her mother’s symptoms. She even had to research alternative treatments that well-intentioned friends suggested, to debunk the myths and advise her mother accordingly.

Assisi Hospice’s Home Care nurse (first from right) visited Madam Lim (middle) and Venus regularly

Feeling immense emotional stress as the sole caregiver, Venus said, “Mum was very emotionally dependent on me after her diagnosis. She would talk to me about the pain she was in, which made me feel helpless.” There were also times when she would have liked to go out with her friends for a break, but she felt guilty about being away from her mother.

Madam Lim came under the care of Assisi Hospice’s Home Care Service in December 2021. The Care Team’s nurses and doctors visited her regularly, helping to manage her symptoms. Venus said, “When the nurse visited, she spent a lot of time talking to her. The nurse was very professional and could understand how she felt, and offered her solutions to ease her pain.”

Venus was especially thankful for Assisi Care Team’s 24/7 helpline. She said, “There was once Mum had a fall in the early hours of the morning and had a cut on her forehead. The Care Team provided clear directions over the phone, and I was able to care for her wound and did not have to rush to the A&E. There were also times when I could adjust her medication, with clear directions given by the Team, to ease her discomfort.”

Venus appreciated the emotional support provided to her mother by Assisi Hospice’s social workers. She was also grateful that they offered practical help by linking them to available financial aid for subsidised purchases of medical consumables and pointing her towards suitable grant applications.

By the end of May 2022, Madam Lim’s condition deteriorated and she was admitted into Assisi Hospice inpatient ward, where she received 24/7 care and symptom management. Venus said, “When Mum was at home, she had frequent falls, and her pain was bad. Being in the hospice enabled her to receive the help that she needed immediately. She also enjoyed the interaction with the nurses, therapists, and social workers. I was able to continue with my online studies.” Madam Lim passed away peacefully on 14 August 2022.

Venus said, “Throughout the caregiving journey, there were times when I felt sad about lost opportunities or did not feel appreciated. However, looking back now, I am grateful that I managed to spend all that time with Mum. I am grateful to the Care Team of Assisi Hospice. They were like friends to me, who shared my burden.”

Assisi Hospice Senior Medical Social Worker Angela Tan shared her experiences with young caregivers

What are some of the common challenges faced by young caregivers who are less than 30 years old?

At this phase in life, they are supposed to be economically and socially active, but the caregiving role may limit these engagements. Due to the caregiving tasks or medical appointments that they need to attend with the patients, they may only be able to work part-time. Social engagement will probably also be reduced due to the caregiving role. As a result, their social circle becomes smaller. They may also struggle with their identity as their current primary role is a caregiver.

How does the Care Team help to address these challenges?

The Care Team provides emotional support as the caregivers’ needs are often put aside as they deal with practical caregiving tasks. It is important to validate and affirm all that they have given, and allow space to vent their frustration and share their struggles. There may be mental struggles with guilt as they wonder if the care they have provided is good enough. Being present and communicating support and that they are not alone is essential. The Team may also refer them to relevant caregivers’ support groups , for example, the dementia caregiver support group. The Team will assess and explore the expansion of their social support network as they progress on their caregiving journey.

Photo: Assisi Hospice

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