Updated: Feb 8, 2022
Chinese new year’s eve
It was the late afternoon on the eve of a five day holiday weekend when I agreed to see a last minute urgent booking. A middle-aged woman we’ll call Ms Chan came in with her adult niece who was visiting Hong Kong. She was a bit disheveled, profusely apologetic, and close to tears. She was sorry for taking up my time right before the holiday, interfering with my plans.
Ms Li couldn’t say what was wrong but vaguely indicated that something might be wrong with her heart or breathing. She didn’t want me to examine her, so I had to gently insist - drawing the curtain around the exam table to protect her modesty.
I listened to her lungs as usual, noting her clammy skin and rapid breathing. But when I moved to put my stethoscope on her chest, she pushed my hand away and began crying in earnest.
Don’t tell Grandma
“It’s all my fault,” she sobbed, “I don’t know how it happened. I couldn’t risk my mom finding out. I know it’s bad. I didn’t know what to do. What will happen to me?” She called out to her niece on the other side of the exam curtain, “Don’t you dare tell Grandma, okay? - Promise me you won’t!”
Turns out that Ms Li was the primary caregiver for her 86 year old mother who was living with dementia. Ms Li had been visibly unwell and losing weight for months, so her boss had finally insisted that she see a doctor, offering to pay for the private doctor and allowing her to leave the office early for our appointment.
The next hour was spent trying to find a surgeon to take care of the wound on her chest where her breast cancer had broken through the skin and become infected. In the end she was given antibiotics and referred to the local hospital.
That was more than four years ago, but I’m still haunted by the look of panic and desperation in her eyes as she asked, “Who will look after my mother? I can’t leave her.” Her concern was not for herself, but for her mother.
I wonder how long she had lived with the knowledge that she had cancer, hiding the truth even from herself. Blaming herself and putting off the time when she would have to face the guilt and shame of no longer being able to take care of her mother. Such is the worst fear for many caregivers: “What will happen to my loved one when I can’t carry this burden any more?”
Are you a caregiver?
Whether or not you identify as a caregiver at present, chances are that you will be involved in caregiving at some point. According to former US First Lady and Founder of the Rosalyn Carter Institute for Caregiving, “There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will become caregivers, and those who will need caregivers.”1
I used to think of caregivers as being the wives, daughters, and aunties who lived with an elderly or disabled relative full time. They would typically come in with the patient, pushing their wheelchair and helping them to answer questions and describing symptoms.
But over the years, caregivers and caregiving roles have diversified. Now they may comprise grandsons running errands like picking up groceries or prescriptions, or neighbors who help to bring in the mail or who share a portion from the meal they were making for their own families.
You are not alone
Over 11 million family members and loved ones provide an estimated 83% of the unpaid care required for people living with dementia in the US alone.2 If you are a caregiver in any capacity or support a caregiver, understand that it is important to acknowledge that identity.
You may feel like you are stuck and have no choice in the matter, but you deserve credit nonetheless. Taking on the care of a loved one living with dementia is a courageous proposition. You are shouldering or sharing the burden of responsibility and uncertainty that comes with the messy reality of this disease. You are not alone, and you get to ask for help and support on this journey.