How to Identify and Minimize Caregiver Burden

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Most of us have heard of caregiver burnout or are familiar with the trials and tribulations involved with providing care for a loved one. While we may be aware of these unique “occupational hazards,” many family caregivers feel that they are powerless to change their situation and turn a blind eye to their emotional, physical and even financial difficulties. However, this denial only provides a cozy little space for burnout to take root and grow.

According to AARP’s 2015 Caregiving in the U.S. Report, 38 percent of caregivers consider their situation to be highly stressful. Furthermore, nearly half of this high-stress group provides more than 20 hours of care each week. Even if you believe you are on top of your loved one’s care and meeting your own emotional and physical needs, it is crucial for you to periodically take an objective look at your situation in order to prevent pushing your limits too far. You may be meeting many of these needs, but are you providing the best possible care? At what costs?

“Some people do not realize the extent of their stress and burnout, so they do not realize that they need to take action or look into things that can help them,” says Barry J. Jacobs, Psy.D., a licensed psychologist in the state of Pennsylvania. “This puts those caregivers at greater risk for fatigue and depression and, ultimately, for being unable to continue their caregiving duties.”

Dr. Jacobs is the author of “The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent.” He also coauthored “Meditations for Caregivers: Practical, Emotional and Spiritual Support for You and Your Family” with his wife, Julia L. Mayer, Psy.D.

I asked Dr. Jacobs to provide us with recommendations that may help family caregivers better gauge the amount of strain they’re experiencing and become more proactive in helping themselves.

AgingCare: Dr. Jacobs, what are the consequences of blindly accepting a caregiving situation or ignoring the signs of burden and burnout?

Dr. Jacobs: It is a well-worn cliché at this point, but I find that the marathon metaphor is still the most powerful way of helping caregivers realize they need to prepare themselves for the long haul. That means that caregivers, like marathon runners, must learn the lay of the land, find a sustainable pace, and accept replenishment along their journey if they have any hope of gamely persevering from start to finish line. With this metaphor in mind, we can say that the caregiver who goes into this blindly is akin to the misguided runner in crocs and jeans with no clue about how far they have to travel. They simply are not equipped to successfully complete the race and are likely to stumble and fall within the first mile.

Much the same can be said for caregivers who wantonly ignore signs of burden and burnout. Even as they eye the next uphill stretch ahead of them, marathoners have to constantly scan their bodies for muscle cramps and strained ligaments that could be their undoing. This awareness of their limits is crucial. When pain becomes too sharp, they know they have to throttle back on their pace. Caregivers, too, need to be on alert for physical symptoms such as neck and back pain, headaches, and emotional symptoms such as persistent irritability and hopelessness, either of which could undermine their capacity to give care. When they don’t watch for these signs and try to push through, they make themselves more, not less, likely to badly falter over the long, grinding course.

AgingCare: How can caregivers tell when they are overly stressed?

Dr. Jacobs: To me, the telltale sign is a demoralizing sense of dread. It is going to bed each night in anguish over the next day’s chores and waking up each morning with a feeling of heaviness and a reluctance to get going. Caregivers who are full of dread have come to hate their daily caregiving routines, even if they still love the person for whom they’re caring. Ironically, many of them rigidly resist all suggestions for altering those routines as if any change would be tantamount to giving up altogether. These caregivers will struggle unhappily month after month until the day that they simply can’t physically or emotionally force themselves out of bed any more.

Another sign is constant yelling. I’m not talking about the caregiver who becomes frustrated on occasion and sharply rebukes their care recipient. As I point out to many of the guilt-ridden individuals who come to me for counseling, people occasionally yell in families in which no caregiving is taking place. That is simply called normal family life. What I’m concerned about here is the caregiver who frequently loses control of their emotions and winds up saying and doing hurtful things much too often. These are caregivers who need to immediately change their care plan to reduce their burden or even cease caregiving altogether. They need to find alternative means for ensuring that their loved one is well cared for.

AgingCare: What are the benefits of using an objective self-assessment tool to help caregivers get a realistic perspective of their well-being?

Dr. Jacobs: I think such tests are worth using to help caregivers measure their levels of stress. The two that I most often recommend are the Zarit Burden Interview, which is available in both short and long forms, and the Caregiver Self-Assessment Questionnaire, which was devised by the American Medical Association. With each of them, caregivers are asked a series of questions about their experiences and the state of their health. Each response is scored and then the total scores for each test can be interpreted to indicate whether or not a caregiver is burdened or distressed.

The results they yield are generally reliable and valid indicators, which provide caregivers with insight into their own coping. On the basis of these tests, I’ve seen caregivers decide that they need more help than they were previously willing to accept. This can be helpful for the steadfastly independent caregiver or those who cannot afford or do not wish to see a therapist for insights into their situation.

Whether caregivers use these quantitative tests or just rely on gut-feel, they need to frequently reflect on how they are doing. The savvy marathoner heeds their bodily warnings and adjusts their stride and pace accordingly. Similarly, the savvy caregiver heeds physical and emotional signs and seeks greater support when needed in order to sustain their vital work.

AgingCare: Burnout can sneak up on the healthiest, most devoted and best prepared caregivers. Make sure you do your part to sustain yourself and preserve the integrity of your care plan. This is especially true for sole caregivers who may not have an adequate support team to offer help or draw attention to their mounting responsibilities.

Countless caregivers join support groups for encouragement and assistance and many others opt for formal therapy or counseling in order to help make sense of their complex emotions. Unfortunately, the latter option costs money and, of course, takes time. This is where proven self-assessment tools can help caregivers come to terms with what they are truly feeling and realize the importance of seeking out help.

Caregivers can download this Zarit Burden Interview Packet to assess their stress levels and learn about their implications. The results page of this packet also features tips and resources for minimizing stress.

Thank you, Dr. Jacobs, for your valuable insights into how important it is for caregivers to take care of their own needs, which, in turn, helps minimize their burden and can bring back some of the joy involved.

Carol Bradley Bursack

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Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

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21 Comments

I know we all have caregiver burnout. The question is: how to afford the help we so desperately need.
freqflyer writes: "I believe many of us here wish we could get into a time machine and go back to day one of when our parents first needed our help. I know I would have set boundaries and learned to say "no" without feeling all the guilt and sleepless nights."

That is the number one takeaway that I've gotten from this wonderful site. Of course, my mother gets nasty when I try to set boundaries, but so far my burden is NOTHING like most on this site (I expect it to increase). The next boundary-setting exercise is when she gives up driving in a few short weeks. I have decided that I will take her to church and to doctor/dental appointments. I'm sure she will want to go grocery shopping, but I'm not willing to do that (at least not every week). She can just give me a list. It will upset her that she won't be able to direct Daughter-Slave as to which exactly can/jar/box/carton to take ("Take the one in the back! With the best expiration date!") and that she won't pick out her exact peach, but too bad. She is totally oblivious that whenever she goes anywhere that it takes HOURS.

And she will have to give up one of her hobbies (she calls it a game), which is getting the absolute best deal on everything. I will NOT drive all over town to save her $.50 on something. I expect her to not take well to my boundaries.

I realize that even going grocery shopping is part of her socialization. But I look at it that she wanted the isolation of no longer driving. Fox News 24/7 will be her main socialization. She will be isolating herself, as she could have considered senior living, but absolutely refuses to so that she can cling to her "independence."
Excellent article, thank you, Carol. In my opinion, us caregivers are thrown into a job that we have very little training.... I mean, how many of us would do caregiving as a life time career? And some of us are just not meant to be caregivers, no different than being asked to be a brain surgeon, a police officer, a Navy Seal, etc.

When it comes to caring for one's aging parents, it is so hard to say "no" and to set boundaries. Then what happens we are enabling our parents to continue with their lifestyle while we need to alter our own. Resentment sets in. Frustration becomes part of our daily routine. We ignore our own physical and mental health because who wants to sit yet again in another doctor's waiting room !!

I believe many of us here wish we could get into a time machine and go back to day one of when our parents first needed our help. I know I would have set boundaries and learned to say "no" without feeling all the guilt and sleepless nights.