Clinical Matters: Labor of Love — Understanding and Alleviating the Emotional Toll of Sandwich Generation Caregiving
More than 11 million American adults are considered sandwich generation caregivers, meaning they bear the responsibility of simultaneously caring for their own children as well as an aging family member, according to a 2019 study by the National Alliance for Caregiving and Caring Across Generations.1 And with older adults accounting for more than 40% of inpatient surgeries and more than 30% of outpatient procedures in the United States,2 the sandwich generation must worry about their aging loved ones’ health needs as well as their own and those of its children. In addition to these health care concerns, the majority of sandwich generation caregivers help with transportation for those in their care, do housework, prepare meals, and tend to other personal needs.
The reason adult offspring land in this sandwich caregiving role is different for each family. For example, couples are having children later in life, and life expectancy is increasing due to medical advancements. No matter the reason, it’s taking a toll on those who are stepping in to help, leaving less time for paid work and self-care and sometimes causing a physical, emotional, and financial impact. The National Alliance for Caregiving and Caring Across Generations study referenced above found that, on average, sandwich generation caregivers devote 22 hours per week helping their loved ones.1 And the cost of caregiving—including doctors’ visits and medical equipment—adds up quickly. A 2019 study from Care.com found that caregivers typically spend between $100 and $1,000 per month on expenses to assist loved ones.3
In orthopaedics, we’re seeing an increase in older adults opting to undergo major surgeries such as hip and knee replacements, with most requiring someone to assist with pre- and postoperation responsibilities. Because of their age and health conditions, these patients often have limited mobility and difficulty handling basics tasks independently, furthering the need for a caregiver even after recovery.
This begs the question, who cares for caregivers?
It’s vital that we as physicians and medical professionals understand that caretaking can be an emotional and often years-long task for adults who are assisting an aging loved one. I frequently treat elderly individuals for injuries and conditions such as arthritis, joint pain, and fractures. I’ve witnessed this caregiving dynamic firsthand and have seen how challenging this responsibility can be. I’ve noticed some clear signs of caregiver burnout and have developed best practices for myself and my staff to help lessen the hardship on these individuals.
Cause for Concern
Feeling overwhelmed is an initial sign that caregiving is taking an emotional toll—and that’s normal given the huge responsibility caregivers undertake. They often find it difficult to balance work and home life. This can be particularly challenging for caregivers who are responsible for medical or nursing tasks such as administering medicine and providing wound care, tasks for which they may not feel qualified. The National Alliance for Caregiving and Caring Across Generations study found that less than 20% of caregivers feel prepared to handle medical/nursing tasks,1 which can cause further stress.
Additionally, when a caregiver conveys a sense of frustration toward the patient, it’s usually a call for help. During visits to the doctor, caregivers may express that patients aren’t putting in enough effort to heal or aren’t prioritizing physical therapy or fitness. They may also want the patient to make quicker progress in physical therapy. The goal of physical therapy is to increase strength, but it ultimately cannot revert the natural aging process. This can sometimes lead to frustration—on both sides.
Caregivers often want to discuss specifics of their day-to-day routines and lifestyle outside of the patients’ medical treatment, sometimes without the patients present. For example, they may raise concerns about their parents’ inability to drive or live independently and ask the doctors to recommend the patients put away the car keys or move into an assisted living facility as an “easy” solution to the problem. However, these challenging conversations are most appropriate within the family, unless there’s a medical need for intervention.
If you recognize these signs with your patients and their caregivers, there are steps you can take to offer support.
Steps to Alleviate Caregiver Burnout
Patients and caretakers appreciate when injuries, conditions, and treatments are explained in layperson terms. Avoiding medical jargon is a small action that can keep everyone feeling in control and prepared to handle the situation when they leave the office and return home after an operation or procedure. Often this only takes a few extra minutes with the patients and the families and can lead to happier outcomes.
If balancing too many responsibilities is the issue, a simple reminder that some medical offices offer evening and weekend hours to streamline care outside of the typical 9 am to 5 pm working hours can be helpful. In addition, in response to the COVID-19 pandemic, practices across the country are offering telemedicine appointments that enable patients to see a doctor from the comfort of their homes. In the coming months, providers and insurance companies may continue to embrace telemedicine, making it a long-term solution for convenient and high-quality care. Additionally, if a family feels unprepared for certain at-home nursing tasks, such as monitoring medication and providing wound care, reiterate the process to boost their confidence and make yourself and your staff available to answer any questions they have.
When it comes to the patient’s health, trained medical professionals should lean in when appropriate to alleviate stress and oversee the entire episode of care. For example, following treatment for a fracture, I will help organize long-term physical therapy or follow-up fracture care for the patient. When appropriate, I also recommend that patients receive at-home therapy, which can make scheduling simpler and take pressure off the family.
Finally, when working with aging individuals, the entire office staff should be trained to support not only patients but family members as well. Staff should be available via phone and online through our portal to answer any questions about patient care.
Despite health care providers’ best efforts, caring for an aging parent or loved one is an emotional and challenging process that often requires a more permanent, long-term solution. When a caregiver experiences burnout, it’s important to respectfully broach a conversation about the expectations for the patient’s desired lifestyle and set expectations accordingly. Following a conversation in your office, you might, if appropriate, recommend counseling with a licensed therapist to help further guide the caregiving process.
Navigating Family Dynamics
Sometimes multiple family members take turns bringing the patients to the doctor’s office. They may not regroup after appointments and, therefore, were not aligned on care. If there are miscommunications between the family and the patient, take the time to clarify any confusion and land on a clear plan for everyone’s benefit. Navigating family dynamics can be tricky, but family counseling sessions can ultimately encourage everyone to work together toward the common goal.
Physicians see firsthand the burden that’s inflicted on sandwich generation caregivers. As physicians, it’s easy to focus solely on the individual’s health and to treat illnesses with the latest technologies available. However, you do a disservice to your patients if you don’t also assist the family by understanding their struggles and offering support to alleviate their stress, as family dynamics can play a role in health outcomes. By taking care of the caregiver, you ensure the patients gets the care they deserve both inside and outside of the doctor’s office.
— Barry Waldman, MD, is an orthopaedic surgeon at the Centers for Advanced Orthopaedics.
2. Introducing the ACS Geriatric Surgery Verification Program. American College of Surgeons website. https://www.facs.org/quality-programs/geriatric-surgery. Published July 19, 2019.
3. Gerson ES. This is how much senior care costs in 2019. Care.com website. https://www.care.com/c/stories/16418/cost-senior-care/. Published October 15, 2019.