Caregiver Connection

Coping with compassion fatigue and regaining balance

by Gretchen Slevin, LSWA, Caregiver Homes of Massachusetts

If you’ve seen me driving with my husband and son, chances are good that the music was turned up and that all three of us were singing along loudly. Those are happy, relaxed moments for us. 

Music is an important part of my life—and a great stress release. I relied on it heavily while helping my mother take care of my father, during his long battle with Parkinson’s disease. Even though I’ve spent my career in social work making sure older adults and people with disabilities get the care they need, those were tough years. My work experience didn’t make it any easier to see my dad slowly lose his ability to walk independently, to speak and eventually to process information. He tried medications and therapies with hope, but Parkinson’s is degenerative and has no cure. That knowledge was always in the front of my mind. 

I felt like my heart was breaking every time I saw him. It was so painful that, in time, I almost had to desensitize myself before I walked through the door to see him. I always had empathy, concern and love for him, but for some tasks—like using a suction device to clear his throat when he couldn’t swallow, and changing him when incontinence became an issue—I had to put my emotions away and tend to him feeling more like a robot than his daughter. 

That’s when I realized I was dealing with compassion fatigue, a term used with social workers, first responders and health care professionals since 1992. It’s also common among family caregivers. At my company, Caregiver Homes of Massachusetts, we’ve found that many family caregivers in our program have dealt with compassion fatigue, particularly during the COVID-19 pandemic. Compassion fatigue has been described as caregiver burnout, but it’s more than that. Fortunately, even though this problem is often misunderstood, there are ways you can fend it off.  

What is compassion fatigue?

Based on what I’ve experienced personally and professionally, I describe caregivers who are suffering from compassion fatigue as being in an extreme state of tension. They become preoccupied with the suffering of the person they’re caring for. It’s exhausting to provide constant care for someone who is in physical or emotional distress, especially when you’re unable to alleviate their distress or provide comfort. 

The ongoing exposure to a loved one’s traumatic experience can create secondary traumatic stress for caregivers. As a result of that stress, caregivers may shut down emotionally or compartmentalize their feelings. Doing so helps them pull away from their loved one’s experience and preserve their mental health. However, creating that distance can have a negative impact on both the caregiver and the person receiving care. 

Signs of compassion fatigue

As a caregiver, it’s important to recognize whether you’re experiencing compassion fatigue and, if you are, figure out how best to cope with and alleviate it. Signs of compassion fatigue include: 

  • Sadness and grief
  • Sleep disturbances, ranging from nightmares to insomnia to too much sleep
  • Depression, feeling hopeless 
  • Irritability
  • Angry or emotional outbursts that are out of character for you
  • Stomachaches, headaches, or generalized fatigue, which can be physical manifestations of stress
  • High levels of anxiety
  • Exhaustion or a sense of feeling drained or overwhelmed 
  • Lack of patience and tolerance for your loved one’s needs
  • Difficulty making care decisions

How to cope

When you’re overworked and exhausted, you really need to take time to rejuvenate yourself, so you can maintain your own physical and mental health and also care for your loved one. Unfortunately, it’s difficult to identify respite resources when you’re in a state of crisis yourself. If you find yourself in that situation, here are some resources that may be available to you:

Listening to music did help me, but going to therapy helped more. Talking with a therapist or joining a support group (or both) can be a great way to find added support. Please don’t feel self-conscious about reaching out for help with your mental health. The support you receive will help strengthen you so you can sustain your caregiving efforts. If you’re caring for someone with a prolonged illness, like the one my dad suffered from, you’ll be in it for the long haul.

In addition to finding a therapist, it can be helpful make other changes in your life, such as:

  • Exercising regularly. You don’t have to run a marathon or play tennis five times a week. Even small increases in activity can help alleviate your stress levels.
  • Eating well and getting the nutrition you need to maintain your own health. 
  • Practicing mindfulness. It’s always good to stop and smell the roses. Appreciating the small positives around you can help nourish you. Steal those moments if you have to. 
  • Taking time to acknowledge the feelings of sadness and grief you may have, rather than holding them in. 

Find something that makes you happy

Many of us have the mentality that we shouldn’t let others know about the struggles we go through as caregivers. I’ve learned from experience that you can’t let pride get in the way of getting help with caregiving. Reach out to others, get support, take time for yourself and don’t feel guilty about having respite or taking a leave of absence from work. You’re only human. It’s only by keeping your own mental and physical health stable that you’ll keep up the strength to help your loved one. 

Have patience with yourself as you travel on this road. Start each day with something you love, something that makes you happy. For me, that’s family, music and walks, especially in wilderness. Every morning I find something—classical, Frank Sinatra, hard rock or some other genre—to set my mood for the day. Keep the positive vibes!

Gretchen Slevin, LSWA, an Account Manager for Caregiver Homes of Massachusetts, has spent her career advocating for the health, wellness and home care needs of older adults and people with disabilities. Caregiver Homes from Seniorlink is a tech-enabled health services company focused on keeping care in the home, where family caregivers play a pivotal role. 

Posted: Aug. 4, 2021

 

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Assistance/support  Burnout  Caregiver stories  Guilt and grief  Self care 

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