During 53-year-old Fern’s quarterly medical visit, she noticed the look of frustration on her physician’s face, as if he were thinking, “Why won’t she take care of her diabetes?” Once again, her blood sugars were running very high. Fern didn’t disagree with him. She wanted to be in better health and nodded when he said, “If you get too sick, then you won’t be able to care for your mother.”
But when it came to the choices she made each day, caregiving clearly took priority over managing her diabetes. Whenever her mother had trouble sleeping, Fern would stay up with her to watch TV. Then the two of them would sleep late the next morning and Fern would miss her insulin dose. Or her mother would wet the bed, and Fern would scramble to change her clothes and wash the sheets. She would then forget to eat breakfast and take her medications. Or Fern would remember to give her mother — who also was diabetic — an insulin shot (and even remember to give the dog his insulin) but would be so busy managing other responsibilities that she lost track of her own medical needs.
Her devotion to caregiving was admirable, but the extent of her caregiver self-neglect was alarming. Many caregivers find themselves in the same position — pivoting from one pressing task to the next without pausing to consider their own well-being. It is a case of the tyranny of the urgent overwhelming any forethought and prudence. It is often a recipe for disaster.
Fern’s disaster eventually came with a series of hospitalizations for diabetic ketoacidosis both shortly before and after her mother’s death. She then felt guilty that she hadn’t been at her mother’s side every moment before her death. Fern also regretted that her own health was now compromised.
It is not enough to tell family caregivers, as flight attendants tell airline passengers, “Put on your oxygen mask first.” Too many caregivers fail to practice self-care at all, let alone tend to their own needs before those of their care receivers. How can they find a better balance between the commitment to caring for loved ones and the necessity of caring for themselves? Here are some ideas:
Stop living only in the moment. The spiritual teacher Ram Dass exhorts “Be here now” and Alcoholics Anonymous advises living “one day at a time.” These are wonderful admonitions, but they don’t work well when dealing with a string of big and small caregiving emergencies that cumulatively take their toll. For every pivot toward crisis, you need to take into account both what needs to be done and what consequences you may experience. Ask yourself, “What will this cost me, and can I sustain myself through the course of caregiving if I continually pay that cost over time?” With a progressive health condition such as diabetes, the answer is likely no.
Feel guilty — but for not helping yourself. I’ve heard too many caregivers explain that taking the time to tend to their own health made them feel guilty when their loved ones were in pain or distress. But if their loved ones always had some degree of discomfort, those caregivers then felt compelled to forever neglect themselves. As much as you may want to give comfort, you do your loved one a disservice by rendering yourself unwell and thereby unable to fulfill your caregiving duties.
Link caregiving and self-care tasks. Rather than regarding caregiving and self-care as an either-or proposition, link them logistically. Use your daily schedule for caring for your loved one as a cue for prompting you to care for yourself. For example, you can dole out and take your pills at the same time that you dole out and give pills to the care receiver. You can give her an insulin shot and then immediately take your own. You can schedule back-to-back medical appointments for you and your loved one with the same primary care provider so that you both receive the care you need.
Work toward family wellness. You would never willingly choose to help one family member if it meant that another family member would unnecessarily suffer. Don’t put yourself in the position of the neglected sufferer. Caregiving is ultimately about caring for every family member — including determined but still-vulnerable caregivers.
Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of Love and Meaning After 50: The 10 Challenges to Great Relationships — and How to Overcome Them and AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter and Facebook.