Informal caregiving is increasingly a reality for many Americans who find themselves providing unpaid care for a loved one or a family member with a long-term, terminal, or chronic illness. Unpaid caregiving (as distinguished from paid caregivers such as health care providers, home health care workers, and the like) often takes an enormous physical, emotional, and financial toll on those providing care for an ill loved one or relative. This population of caregivers is often overwhelmed with the many needs of their loved one and are often trying to balance their own family life, professional commitments, and health issues with little success. As a licensed acupuncturist and Chinese herbalist, I have worked with this population both in my professional and personal life and have discovered some of the common issues unique to this group of people, which will be explored here along with a discussion of special considerations to make while treating this population.
The Unpaid Caregiver
Unpaid caregiving is rapidly becoming an issue that affects a large percentage of Americans. According to a 2009 report by the National Alliance for Caregiving and AARP, an estimated 66 million Americans provide care for a loved one.1 The vast majority are caring for a family member and approximately a third of the caregiving population is providing care for more than one person. Caregivers are disproportionately female, with an average age of 48 years old and with an average length of caregiving provided at 4.6 years.2 Additionally, the nature of caregiving has changed. As managed care dictates hospital stays, discharge policies, and home health assistance, it is oftentimes the family member who remains the one constant in care, thereby assuming a role they may not have anticipated.3 This system leaves the burden on the family member to assume continuity of care amongst the many healthcare providers who may be involved with patient care. The caregiver by default then becomes the one person whom the patient can depend upon not only for care, but also for negotiations with insurance companies, setting up medical appointments, transportation, and other assistance in the activities of daily living.
Vulnerabilty of the Caregiver
This population of unpaid caregivers is then uniquely vulnerable to health issues. Not only is the caregiver taxed from taking care of someone else (often a physically challenging and emotionally draining experience with plenty of sleepless nights, busy days, and no time off), but they also face the stressors of their "regular" life — job, kids, a social life, community involvement, etc. They are continually burning the candle at both ends, and many see no end in sight to their current lifestyle.
In working with this population, I have had the opportunity to experience both the professional and personal trials of this group. While attending Pacific College of Oriental Medicine, I had the opportunity to intern at the San Diego Hospice and the Institute for Palliative Medicine, where we treated both the hospice patients themselves as well as their family members. This was my first insight into the unique needs of this population. On a personal note, while in school, my father became very ill, suffering from several long-term illnesses, including diabetes, congestive heart failure, and renal failure. Watching my mother constantly provide care for him gave me personal insight into the daily struggles of this population. When I completed acupuncture school in 2012, I moved back to my hometown in Connecticut to open my practice and to also provide additional support in my father's care. Even as a medical professional with experience working with this population, I quickly found myself overwhelmed by the amount of assistance he needed in his daily life.
Giving Back
After his passing in 2013, I was given the opportunity to start a clinic working with an underserved population of my choosing, funded by a non-profit organization called Changing Health, Inc. that was dedicated to increasing the availability of acupuncture services to those who might not necessarily be able to access or afford those services. I then designed, started, and self-staffed a free/low-cost, once weekly community clinic for caregivers in which I offered acupuncture services for commonly seen conditions in this population (depression/grief, anxiety and stress, poor sleep, fatigue, and headaches). In the year that this clinic was open, I personally gave well over 100 treatments to caregivers from all walks of life, gaining invaluable insight into the health concerns and the emotional issues of this group of people.
As TCM practitioners, we have much to offer this population. Our unique treatment strategies, designed to treat the whole person by addressing underlying deficiencies as well as by resolving acute concerns, makes us ideal professionals to assist in the needs of this population. Caregivers are qi depleted in every sense of the word. Long-term caregiving without any respite will then also naturally deplete the Kidneys as the body pulls from its reserves in an attempt to make up for the deficits in nutrition, rest, and self-care. Additionally, many of these caregivers suffer from Liver qi constraint as well. These patients are often extremely frustrated and trying not to show it. They experience frustration with the medical system, with the massive changes in their lifestyles, and with themselves for feeling anything less than optimistic and good-natured at all times. This combination then breeds a complex pathomechanism in which underlying deficiencies are almost always overshadowed by the anger, fear, sadness, guilt, and downright exhaustion that so many caregivers present with.
A frank discussion must be had with the caregiver on the first visit. This can sometimes be a little difficult to maneuver gracefully, but I have found that many patients are overwhelmingly grateful to have someone acknowledge that they are under a great deal of stress and strain. I usually initiate this discussion with what I call "the airplane metaphor." I emphasize to them that caregiving is just like an emergency on an airplane — you have to put on your own oxygen mask before assisting those around you. By phrasing things in this manner, it offers a real-world example for patients to understand the peril of neglecting their own needs for too long. Most patients know that they aren't taking good care of themselves, but it seems difficult for them to find a manner in which to implement better self-care.
Community Clinic
This is where community-style acupuncture clinics can be especially useful. By offering walk-in appointments, abbreviated intakes, and flexibility with time constraints, this particular style of acupuncture practice lends itself well to this population. Caregivers often feel intensely guilty for taking a whole hour to themselves to focus on their needs. By allowing them to have a shorter treatment time, we relieve some of that stress. Community style also means that caregivers may have an opportunity to meet with their peers — nurturing relationships with those undergoing the same situations can be just as valuable as the actual acupuncture treatment. If your clinic is not set up for community style (as my private practice is not), you can either rent or solicit the donation of a small space that could suit your needs. Even offering it as a once or twice weekly "Caregivers' Session" is enough without having to fundamentally alter the nature of your clinical practice. This type of practice also keeps costs down and makes treatment more affordable, which can ease some of the stress that caregivers have around spending money on themselves.
Lastly, there are a few clinical considerations that should be taken into account when working with this population. Caregivers are often almost too eager to share their emotional burden when met with a sympathetic audience. At the risk of sounding callous, this type of relationship needs to be carefully limited. Especially when done in a community style clinic, there is just not the time (or privacy) to adequately meet patients' deep-seated emotional concerns or to properly assess them for potentially self-harming behaviors. A list of counselors (sliding scale, insurance based, and private practice) should be made available to all caregiving patients. It is not within our TCM scope of practice to assume the role of a psychotherapist; while we can certainly lend a listening ear, use your gut. If something feels out of your depth and the patient is not in immediate danger to themselves or others, don't be afraid to refer them out to a qualified mental health professional to get additional support for their concerns.
References
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