Caring for the Caregiver

Caregiver “burnout” is all too common among the one in five Americans attending to the health care needs of a loved one with a chronic illness. As a former practicing geriatrician, internist, and rheumatologist for twenty-three years, I had the privilege of caring for many folks over the course of a chronic illness—from first diagnosis to either remission or not surviving. These illnesses ranged from rheumatoid arthritis to progressive dementia. Helping not only the patient, but those around the patient who suffer as well can all be assisted. By caring for the entire milieu—patient, caregiver, family, and the environment that engulfs them—all will have potentially better outcomes. Society will also benefit by enjoying a better quality of life while using fewer resources.

Significant strides have been made by healthcare professionals in diagnosing and treating many illnesses, including some that were not even known in the past such as COVID. These include acute illnesses, such as heart attacks, strokes, broken bones, diseased gallbladders, etc. as well as long-standing chronic and progressively worsening maladies like congestive heart failure, neurological illnesses, osteoporosis, and others.

Understandably, every patient desires to be cured and every physician, physician’s assistant and nurse practitioner wants to participate in that cure. Realistically, cures are not always possible, but we can always comfort. We need to do a better job also in comforting the caregivers, so that these compassionate volunteers—often family members—can continue to comfort the chronically ill.

Research has shown that caregivers have a much higher than expected rate of serious illnesses, such as heart attacks and high blood pressure, since they tend not to care for themselves as well as those who are not in the role of caregiver. Care giving duties can result in tremendous economic stress, in addition to physical and emotional stresses. Dr. Virginia Hood, former chairwoman of the Ethics, Professionalism, and Human Rights Committee of the American College of Physicians states, “Some of these 37-going-on-40 million family caregivers have had to give up their own jobs to care for the patients. That means they aren’t going to be able to put aside money for their retirement. Who is going to take care of them and their medical problems in the future?” Ethical guidance has been elucidated and codified recently in the Journal of General Internal Medicine.

Here are ten steps caregivers should do to care for themselves (modified from the National Family Caregiver’s Association):

• Realize that you are entitled to a break—you need respite too; helping a loved one is hard work even though it can be very rewarding.
• Watch out for signs of depression and recognize that early treatment is more effective.
• Accept help from others and understand that care giving is a team effort.
• Stay well informed about your loved one’s condition and communicate well with the medical team.
• Try to keep your patient as independent as possible—don’t do things they can still do for themselves.
• Trust your instincts; you are the most informed and knowledgeable.
• Care giving can be a physical strain—get and stay in good physical shape so you can protect your back.
• Realize when the end has come and move on with life—losing two people only doubles the loss.
• Seek support from other caregivers—seeing other ships at sea is very comforting and knowing you are not alone or unique is beneficial. Support groups concerned with various diseases and conditions exist in many cities, providing much-needed advice and compassion.
• Be proud of your rights as a caregiver, a person, and a productive member of society.

Caregivers spend over forty hours per week helping others. Given the cost of care, a member of the President’s Committee on Care Giving estimates a caregiver provides over $110,000 of free medical services per year. Overall, $375 billion dollars a year of tangible care is provided for others; add the love, compassion, and satisfaction that is both given and received and we have an incalculable value for all.

Let’s recognize the goodness in this world as we care for each other, avoid the “burnout,” and add to the compassion.