Caregivers also need to take care of themselves

• By Chen Nai-ching 陳乃菁

Last month marked World Alzheimer’s Month. Due to a local COVID-19 outbreak, events were downsized or moved online in contrast to the large awareness-raising campaigns of the past.

The focus remained on patients, although people must remember that behind every patient, there are one or more caregivers whose constant hard work is often taken for granted.

Most caregivers follow a similar path. At first they are at a loss and seek medical help while searching for caregiving tips. They might quarrel with their family members over the management of care, and argue with patients over caregiving methods. As the patient deteriorates, they face the difficulty of letting go at the end of the journey. The caregivers suffer as well, perhaps as much as the patients. People forget that they also need to be seen and cherished.

Based on this ideal, Kaohsiung Chang Gung Memorial Hospital last month released a documentary on YouTube titled Take Good Care of Yourself (好好照顧家己).

The first story in the film features the Chuang (莊) brothers attending to their father, who had dementia for years. Their father died peacefully at home last year thanks to their caregiving decisions.

The older brother looks like any ordinary middle-aged man, and no one can tell from his appearance that he had carried such a burden for 12 years. What made him different was that, despite the chores in his daily life, he worked hard to find his position and value.

By studying law at home, he could draw his attention away from the caregiving and eventually earn a college degree. He said his life was frequently “derailed” by looking after his father. After he would get up to change his father’s diapers or turn him over in the middle of the night, it was difficult for him to fall asleep. When that happened, he turned to his books and kept studying. As time went by, he was amazed by how much he could learn. This is a great example of positive thinking.

The second story features a female senior citizen surnamed Lan (藍), who had attended to her husband after he suffered a stroke more than a decade ago, until he died this year. This 83-year-old woman showed me the traditional Taiwanese women’s spirit of “not yielding to destiny” in the face of adversity.

Lan had faced such challenges and tried to solve problems ever since her youth. However, she finally fell ill after taking on the caregiving burden by herself for all those years. When she could no longer hide her own weakness, her family was shocked to discover how frightened and confused she was behind her outward appearance of strength.

If she could have shared the burden with someone else, or realized that as a caregiver, she should have taken care of herself first to be able to care for her patient, perhaps there could have been a happy ending to this story.

The documentary is an opportunity for everyone to learn more about caregivers’ difficulties. Please watch the two stories online and share them with caregivers you know.

Taking care of their own bodies and minds is not a selfish or evasive action. By putting themselves first, they are able to sustain their caregiving.

Chen Nai-ching is an attending physician at Kaohsiung Chang Gung Memorial Hospital’s Department of Neurology.

Translated by Eddy Chang