Long Term Caregiver Burnout – What You Need to Know – by Clark Gaither, MD, MRO, FAAFP

One day, you will become a patient. We all will. Even before that happens, you may find yourself in the role as caregiver, caring for a loved one who is convalescing, ill, or dying. Healthcare providers know and expect what this entails, for we are faced with it every day.

What about the general public, those who do not work in healthcare? Most are wholly unprepared when a friend, family member, or spouse becomes critically or terminally ill and they become the principal caregiver. Their “normal” life is sudden thrown up in the air. Uncertainty prevails. Their sense of security is shattered as they take on a role they did not expect and were never trained or prepared for, that of a caregiver. To say it’s overwhelming would be putting it mildly.

Helping Hands

As healthcare providers, we are prepared for what may come in the everyday treatment of our patients. Even so, we are never unaffected by it. What we fail to consider is how different it is when it is our own friend or family member who becomes sick. All of a sudden, it becomes different. The emotional impact of caregiving is often quite high. Wherever or whenever there is high emotional impact, the risk of burnout is high. By definition, caregivers tend to be selfless, compassionate, and loving. Although these are all sterling attributes, they can make the caregiver prone to neglecting their own needs while caring for another. The long term caregiver will experience a range of emotions over time—feeling stressed out, unhappy, angry, sad, fearful, unappreciated, lonely, resentful, incompetent, and shame or guilt for having such feelings in the first place. It is important to understand that all of these feelings are completely normal. Knowing this in advance can help to forestall caregiver burnout.

As stated in a previous post, stress is different than burnout. If you are burned out, I can say with 100% assurance you are stressed, but you can be stressed without being burned out. For caregivers, stress is a normal consequence of their circumstances, not the underlying cause of burnout. For burnout to develop, one or more of the six major underlying causes must be negatively impacted. The major underlying causes are Work Overload, Lack of Control, Insufficient Reward, Breakdown of Community, Absence of Fairness, and Conflicting Values. For caregivers, all of these are negatively impacted by some degree. Let’s review the six major underlying causes one by one through the lens of a caregiver.

Work Overload: The caregiver may be challenged with daily bathing and feeding of the patient, changing bed linens or dressings, endless doctor’s appointments, hosts of medications and dosing to keep straight, and coordination of care from ancillary service providers. When caring for a very debilitated or terminally ill individual, there is always one more thing to do.

Lack of Control: No one chooses to be sick. Illness, injuries, accidents usually come out of the blue, events out of our control. Caregiving will most often fall primarily to one member of the family, even if families are large, and often without discussion or consent of the caregiver. The caregiver may then find it difficult to get other members of the family to contribute time or resources. Resentments can develop quickly.

Insufficient Reward: Imagine laboring day in and day out, caring for a very sick family member whose health status continuously declines. The rewards for doing so are sometimes hard to see. Sometimes the care recipient is unable to thank the caregiver. Other members of the family may not voice their appreciation to the caregiver and may go so far as to voice criticism of the care provided.

Breakdown of Community: The caregiver may have to quit their job outside of the home, drop interests, set aside hobbies, and give up any semblance of a social life due to the demands of caregiving. Time spent with family is also reduced. This isolates the caregiver from many types of needed social interactions.

Absence of Fairness: Caregiving thrust upon someone without a choice and with no sign of relief, can seem awfully unfair. So too the long hours which are physically exhausting and the burden of responsibility which is emotionally draining.

Conflicting Values: Many of a caregiver’s values can be compromised by 24/7 care of another. Conflicts can also arise between end of life desires of the patient versus the desires and values of the caregiver. The caregiver of a cherished terminally ill family member may have great difficulty with the patient’s decision to stop all treatment, even if they pledge to honor it. The opposite may also be true. Tremendous guilt can be shouldered when the patient’s requests are not in alignment with the caregivers wants, needs, and desires.

Caregivers who burn out begin to lose motivation for self-care as they begin to feel trapped by the caregiver role, and as they supplant their own needs for those of the patient. Left unchecked, burnout leads to compassion fatigue which robs both the caregiver and the care recipient. Small wonder rates of depression are high for long term caregivers. Continuous caregiving, or caregiving for the terminally ill, imposes significant physical and emotional demands. Without a proper plan to mitigate, alleviate, eliminate, or prevent caregiver burnout, caregivers can find themselves bitter, angry, resentful, depressed, and exhausted. A proper plan begins with one fundamental realization:

— Excellent care of others begins with excellent care of self! —

Here is a list of ways to prevent caregiver burnout:

  • You must eat regularly. Nothing runs well on empty, if at all.
  • You must get adequate rest. Exhaustion never gets better by working longer or harder.
  • You must take breaks. Mental fatigue sets in if you don’t.
  • You must take time to socialize and get away for periods of time to recharge, reprioritize, and readjust.
  • Ask for help. Every caregiver needs help and there is no shame in asking for it, demanding it, or hiring it, if need be.
  • Exercise regularly. Peak performance requires it and you know you want to be your best for your loved one.
  • Do not ignore the other members of your family. Include them.
  • Have someone you trust to confide in and let them know how you are doing or if you just need an ear to bend. This is no time to hold onto your feelings. Let your grief out!
  • Don’t blame yourself for not being a perfect caregiver. No one is.
  • Do not ignore your spiritual life if you have one. Faith sustains only the faithful.
  • Actively manage your finances with professional help so you do not lose control of them. Long term caregiving can be financially ruinous without a plan.

Proactively managed, caregiver burnout can be prevented, reduced, or managed. Ignoring your own needs, no matter how noble it may seem, is self-destructive and ultimately bad for the care recipient. When it comes to caregivers there is one take-away which bears repeating and often—Excellent care of others begins with excellent care of self.