Compassion Fatigue: When Caregivers Go Beyond Burnout

67 Comments

Most long-term caregivers have times where the fatigue and frequent frustration of providing care for a vulnerable person can border on burnout. Even though I’ve handled caring for multiple elders’ situations reasonably well, there have been times when I’ve wondered how much longer I could keep it up.

Those times have come dangerously close to burnout, but I have always moved through them with a focus on faith and self-care. Since my darkest days, however, I’ve learned that there is another stage that exists beyond burnout—one that can be extremely scary. This stage is called compassion fatigue.

Many readers have had feelings similar to mine. Some have even told me that they feel they have progressed beyond burnout. In the interest of helping these readers, and clarifying how a somewhat common feeling of caregiver burnout can turn into compassion fatigue, I looked for assistance. After some research, I contacted Christine M. Valentin, a Licensed Clinical Social worker in New York City and the state of New Jersey and asked her to educate all of us about burnout and compassion fatigue.

Christine has a Master’s Degree in Social Work. For the last six years, she's owned a private counseling practice where she works with adults who are experiencing anxiety related to work, relationships, family, multiple sclerosis and/or caring for a loved one with Alzheimer's disease. Prior to her private practice, she worked for six years with older adults and family caregivers in various non-profit organizations in NYC.

AgingCare: Christine, as I mentioned above, I’ve read about compassion fatigue and heard it sometimes used interchangeably with caregiver burnout. Can you please explain what this phenomenon actually is?

Christine: Compassion fatigue is an extreme state of great tension and stress that can result in feelings of hopelessness, indifference, pessimism and overall disinterest in other people's issues.

With regard to caregivers, this can manifest through actions like yelling, hitting or neglecting a loved one. Basically, any action that is not characteristic of the caregiver’s typical behavior but is now present and consistent could be considered a result of this condition.

While some may simplify and attribute this change in behavior to frustration and/or resentment, it is important to understand that this is not something that occurs overnight. It is the cumulative result of days, weeks, months and years of managing caregiving responsibilities that are often unrecognized, seemingly endless, emotionally demanding and physically exhausting. As a result, it is not uncommon for feelings of frustration, resentment, hopelessness, guilt and/or a diminished sense of self to manifest.

AgingCare: How do long-term caregivers who are close to or already experiencing burnout avoid reaching an even more dire state?

Christine: Being proactive is one of the best ways to combat this or at least prevent it from getting out of hand.

Warning Signs of Compassion Fatigue:

  • Feeling overwhelmed, exhausted and drained
  • Not wanting to be around your loved one (choosing to work late, daydreaming about no longer having to care for them, etc.)
  • A decrease in patience and tolerance
  • Angry outbursts that are uncharacteristic of your behavior

AgingCare: Being aware of the changes in your behavior is obviously the first step toward preventing compassion fatigue. What comes next?

Christine: The next step is to begin making yourself a priority and tend to, at the very least, some of your needs. While many caregivers feel this is impossible to do, it is important to understand that if you don't make time for yourself, no one else will.

Therefore, allocate at the very least five minutes each day to eat, pray, dance, laugh, walk, sing, read an inspirational quote, meditate, chat with a friend, the list can go on and on. My point is to give yourself a mental and physical break from actively caring for a loved one. The ability to do so in small bursts can allow you to begin the practice of adequately caring for yourself and hopefully get you to increase these efforts moving forward.

AgingCare: What else would you suggest?

Christine: Having a non-judgmental outlet to express your thoughts can also be beneficial. Outlets like writing in a personal journal, talking with a confidant, or seeking advice from a healthcare professional can help you with processing your feelings and offer a safe place to release pent up thoughts and emotions.

AgingCare: What if a reader is experiencing what they now recognize may be compassion fatigue?

Christine: If you find yourself already experiencing these feelings and symptoms, then let others know and seek professional help. Believing the feelings will not subside, especially while you are still actively caring for a loved one, can cause some individuals to become depressed, develop panic attacks and/or potentially put their loved one in harm's way.

AgingCare: Thank you for clarifying this for us Christine. Readers can get more information about you and your services on your website.

From my point of view, the courageous caregivers who comment on the AgingCare.com forum, as well as in other groups about caregiver stress and burnout, need to take especially aggressive steps to take care of themselves to avoid these emotional and physical complications. Seeking professional help could be a good approach even for burnout, but seems to be necessary when caregivers reach the more advanced stage where their feelings lean toward compassion fatigue. Practicing proactive self-care is as beneficial for the care receiver as it is for the caregiver.

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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67 Comments

Every personality is different, be it the patient, or the caregiver. So many emotions come into play when it's a parent/child situation. Much more so than a hired caregiver. Past memories, both good and bad, as well as upbringing, family relationships and much more can make this arrangement much more challenging. For me, I am sole caregiver of my mother. She has been with me for a year now, and has transitioned from mid to late stage Alzheimer's rather quickly. It has been a very long year.

Days can range from what I term as "good days" to days when I feel like I can't bear another minute! I find myself feeling resentful because my mother has always been selfish and manipulative. She always made it clear that since I was her only girl, I was expected to care for her in her later years. I feel like I have taken care of her all of my life, not visa versa. I have very few happy, loving memories of my mother. She has always been mean, nasty and needy, and the Alzheimers compounded that personality.

I hope it doesn't sound insensitive, but the later stage has been a blessing. I say that because when she first came with me, she was very disagreeable, combative and downright impossible. She was not ambulatory, but if I left her sight even for 5 minutes, she would manipulate herself out of her chair, or bed and onto the floor. She would yell and scream for me all day and night. Nights were a horror because she wouldn't sleep. She would get out of bed, and fall. I lay awake every night watching her on a baby monitor. She fought me every step of the way. She would spit in my face, throw her food tray across the floor, and cuss me out. I felt helpless. Nothing I did seemed to make her happy.

After I got rundown and contracted pneumonia, I passed it on to her. She recovered in a NH. I became physically ill at the thought of bringing her back home, and made up my mind to leave her there. She cried and pleaded so that the NH was calling me constantly. After a month, and careful thought, I agreed to bring her home, but reevaluated my needs, instead of hers this time.

My new plan was to put her on MY schedule, and not cater to her every whim. I explained to her that I had only had so much to give, and that had to be enough for her. If she wanted to come home with me, it was going to be on my terms, and that hitting, spitting and yelling and screaming was a deal breaker. As strange as it seems, she shook her head and said, "ok", and I honestly think she knew and remembered that I really meant it. I could see it in her eyes.

Now I get up an hour before her. I have my breakfast, get dressed, and even have a second cup of coffee before going to her. I give her breakfast in bed, and while she eats, I do light chores. Then I get her up, toileted, and settled in her chair with her favorite morning tv show. I go about my daily household activities, checking in on her occasionally, until lunchtime. Often, I will sit and have lunch with her. After lunch, I take her to the toilet. Now, I have the afternoon, and she often naps. At this point in her disease, she is unable to get up from her chair, or out of bed. Walking only a few steps using her walker, and me holding her with a a gait belt.

The best purchase I ever made was a camera that allows me to watch her on my cell or iPad from anywhere. I can go anywhere in the house, outside, or go across the street and visit my friend, or even make a quick run to the grocery store while she naps.

After dinner, another aided walk to the toilet, and into bed where she sits up watching tv till she falls asleep. Then I lower her bed and she's in for the night. From that time on my time is my own. She will sleep until morning, and so do I since I no longer worry about her getting out of bed.

She needed me to take charge. Her reasoning was impaired. Why would I expect her to be making decisions in her own best interest? I get it now, and my life has improved 100%, which means I'm a much better caregiver to Mom.
What a good article! I had been experiencing this and didn't even have a name for it!! Since stepping back from mother's care and allowing her to have the space she wants and leaving her alone (she lives with my brother & his family, she is well cared for) I have begun to feel better.

I was too involved and trying to be the "best" daughter I could be. My other 4 sibs are completely uninterested in her day to day care and usually go a couple of months between checking in on her. When I finally was forced to realize that she simply does not want ME around, and got over the hurt of being told to get lost---I am doing better.

Whatever her health situation may come to be, I will not be her primary or secondary caregiver again. We have money for paid aides, she does better with them anyway and I was miserable, and unappreciated.

In my case, I went through a couple of weeks of crying jags, sleeping marathons and deep depression. I do see a therapist and I do take medication for both depression and anxiety.

In my case, I am lucky, because I wasn't the only caregiver. I was helping out my brother and thinking we were helping her b/c she cannot clean her place or go anywhere alone. Turns out she simply doesn't want me around. I know a lot of people on this board who don't have the option of walking away. The suggestions in this article are great.
Very good article. Compassion fatigue or burnout, whatever you want to call it, it can happen to the best of caregivers. The idea of self care is wonderful, but I found it unrealistic in my care giving experience and from what I've read on this site, that is common for caregivers. SELF AWARENESS is so important for us. Read articles on burnout and compassion fatigue. Be aware of the symptoms and have the courage to act when you see the symptoms in yourself. For me, I knew caregiving was physically and mentally killing me. I was 62 and forced to live the life of a 90yo. No exercise, no time for myself or to enjoy the things I liked to do. I was a prisoner to caregiving. When I began to easily loose patience with Mom I knew it was time for me to take control of the situation. It was then that I made the decision to place her in a memory care facility. It was the best decision for her and for me. I do not regret it for one moment. She has adjusted well and gets the good care she deserves and I'm slowly regaining my own life back.
There is no shame in admitting you have compassion fatigue or burnout. The only shame is not doing whatever you can about it.