Just Listen

What is caregiver burden?

Dr Poongkodi Nagappan

I sat down at the back of the convention hall, having just given my talk. I needed to go but I also needed a breather. I looked up from my phone as an elegant lady pulled a chair next to me. Maybe a fellow consultant?

“Hello doctor, I enjoyed your talk, and can I ask you something,” she said as she sat down.

“I am a nurse, and my husband has been under follow-up for chronic kidney disease. He had a stroke last year and he hasn’t had his kidney function checked in a while. He hardly pees, except at night and there are a lot of sediments in his catheter tubing. Does this mean that his kidney function is worsening?”

“He had diabetes, and hypertension but he was so careful about taking his medication. A month before his stroke, he had dimness in his vision. I took him to see the eye doctor, but she said he probably had a cataract asked us to come back in 3 months! I read that warning signs of stroke could be loss of vision, and I wish that this was told to us and maybe we could have prevented his stroke.”

Her left eye glistens and a tear rolls down her cheek as she keeps talking.

“Shouldn’t the eye doctor have had the knowledge to realise that and advise us?” she looks at me.

“Specialization,” I murmur sheepishly.

“My husband’s cardiologist used to always check his heart, but he never checked his neck. The neurologist told me that my husband had a complete blockage of the left carotid artery. At least he didn’t advise us to go through any unnecessary surgery which could have worsened his condition.”

“Now my husband is paralyzed on one side of his body and stays in bed. We spent some money on home physiotherapy, but he doesn’t like to do the exercise. We don’t have a carer, but my children and I take turns looking after him. He has no bedsores, but he is losing weight because he eats much less now and doesn’t move much. I am so worried that he will get bedsores.”

“My husband has refused dialysis and has written a do-not-resuscitate order. His diabetes has improved since the stroke. I check his glucose and it is always less than 6. We can’t keep up with all his appointments and I am worried when I see very little urine in his bag during the day. What will happen if his kidneys fail? Will he have difficulty breathing and suffer?”

I look at this slim and well-groomed woman and am reminded that we really have no idea what the people next to us are going through in their personal lives. All I could offer was reassurance that she was not neglecting her husband’s medical needs by missing some of his appointments.

I admire the courage and endurance of informal caregivers. Caregiver burden is the strain a caregiver experiences from caring for a loved one who has chronic illness. Without access to health care infrastructure such as adult day care program, respite care and caregiver support groups, informal caregivers lead lonely lives. As doctors, we have a responsibility to recognize caregiver burden. But this is only the first step.

Compassion involves recognition of suffering, an emotional connection with another person’s distress, accompanied by a strong desire to alleviate that suffering. Empathy is the ability to put yourself in another person’s shoes and share their emotional experience. Without the support of established infrastructure, how do we provide compassionate care to our patients?

Dr Poongkodi Nagappan

20th March 2025

REFERENCES AND FURTHER READING

  1. Zati Sabrina Ahmad Zubaidi, Farnaza Ariffin, Cindy Teoh Cy Oun, and Diana Katiman. Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: a cross sectional study. BMC Palliative Care, Article number 186 (2020)

  2. Ronald D Adelman, Lyubov L Tmanova, Diana Delgado, Sarah Dion, and Mark S Lachs. Caregiver burden: a clinical review. JAMA 2014, Volume 311(10), Page 1052-1060