As baby boomers age, many more people will find themselves caring for their aging parents while still raising their own children. Those faced with this situation wonder: How can I do both well? And with all of my responsibilities at home, how can I be present enough for my parents to ensure that they receive quality, compassionate care?
Liz experienced this struggle firsthand. With two elementary school-aged children, she found herself experiencing “caregiver creep.” First, it was simply helping her independent parents with small things like groceries and appointments. Then, her mother’s health rapidly declined due to a bad fall and Liz’s caregiving responsibilities escalated quickly.
Liz started accompanying her mother to numerous doctor appointments. She left one of these appointments outraged. When asking how her mother’s diet was, the doctor was shocked that Liz couldn’t tell him precisely what her mother was eating every day. In front of both of them, he said, “Your mother needs to come live with you.” After telling him that wasn’t possible for many reasons, including because she worked, the doctor said, “Why are you working?” Liz left that appointment feeling shamed and judged by a doctor who never took the time to understand the challenges and struggles family caregivers face.
Her caregiving responsibilities also increased for her father, who started to exhibit potential signs of dementia. His doctor recommended a geriatric pysch evaluation, which would help determine the course of action. Liz took her father to the local ER for an assessment and over the next 72 hours, there was a breakdown in communication between the hospital team, Liz and her siblings. His care team did not reach out to Liz during the first night to update her on his deteriorating situation, and so she was shocked to find him in restraints and incoherent when she returned the next day. He had been given an Alzheimer’s diagnosis and anti-psychotic medications that were too strong for him.
Throughout both parents’ ordeals, the best health care experiences happened when that trust was present, when the clinician respected Liz’s advocacy for her parents and the struggles she faced as their family caregiver, and when the clinicians treated her parents as people, not as illnesses or bystanders in their own health care journeys.
Over the next three months, Liz’s parents were in four different hospitals, three different assisted living facilities and a hospice home. Liz encountered some insensitive clinicians during this intense period. Yet, the caregiving experience also illustrated for her what a difference thoughtful, compassionate care can make in the lives of both the patient and his/her family caregiver. Just as one nurse at the hospital where her father became restrained brushed her off, another nurse brought her a blueberry muffin after Liz had slept all night in the chair by his bed. Compassion takes all forms and sometimes it’s the simplest gesture that can make all the difference in that moment.
During that time of juggling both parents’ needs—not to mention her children’s and husband’s—Liz continued to advocate for her father by working with his care team to develop the most appropriate care plan. As a family caregiver, she knew her father best and repeatedly told his medical caregivers that an Alzheimer’s diagnosis did not seem to fit. As his body started to clear the anti-psychotic medication and the urinary tract infection he had been suffering from, he began to regain his “normal” personality. Thanks to Liz’s perseverance and advocacy for her father, they were eventually able to rule out the incorrect Alzheimer’s diagnosis, and the nursing facility to which he had been transferred agreed to move him to assisted living. He lives there now, and is approaching 90 years old.
Liz now recognizes how critical it is to find clinical staff with whom you can build a trusting relationship. This trust is formed through a two-way partnership of listening to and communicating with one another.
Liz currently maintains a blog that offers information and support for caregivers, particularly for those who are struggling to care for an elderly relative, hold down a job and raise a family. Her blog can be found at workingdaughter.com.