Being the perfect care partner may be different from what you imagined. Taking care of someone else and picking up their tasks while continuing your own responsibilities can be overwhelming. Continuing this pace, day after day, accumulates a bundle of emotions and exhaustion and can eventually cause “care partner burnout”.
Recognizing Care Partner Burnout
“Think of yourself as a gas tank already only half-full due to your own accountabilities. Add on caregiving and all it entails. You can easily feel overwhelmed and exhausted, with only so much left until hitting empty,” said Lori Riggio, PhD, licensed psychologist in San Jose, California.
Although it’s difficult to find a definitive number of primary caregivers who experience symptoms correlated to burnout at least once, Dr. Riggio broadly estimates it to be 50% to 75%.
Being a care partner is tougher than people think it is. You’re placed in a role you did not expect or probably want to be in, often without any experience. It can mean being on call 24 hours a day, seven days a week, with no time to yourself. You may also now feel alone in your relationship.
“Sometimes care partners can’t see the forest through the trees. It’s important to pull back and look at priorities. Sometimes we’re so hyper-focused on doing the best job as a caregiver and being perfect that we forget about ourselves,” said Indiana-based Christy Vaal, MSW, Licensed Clinical Social Worker (LCSW).
In addition to seeing care partner patients, Dr. Riggio is also a caregiver and a patient with chronic lymphocytic leukemia (CLL). Admittedly, she has experienced caregiver burnout symptoms. She tries to increase her own awareness of what her personal early warning signs and triggers are, because they can be different for everyone.
It’s a continual learning process, but she believes in awareness of one’s own life stressors. That way, you can work to prevent, or at least decrease, the frequency and severity of them.
Symptoms of Care Partner Burnout
- Feeling overwhelmed
- Feeling loss of control and privacy
- Lacking patience
- Feeling irritable, reactive, and negative
- Having decreased social support and isolation
- Feeling fatigue
- Having decreased self-esteem
- Neglecting personal hygiene and health
- Fearing uncertainty and loss of control
- Having appetite changes
- Experiencing sleep disturbances
- Missing deadlines
- Experiencing financial hardship
- Lacking motivation
- Increasing alcohol or sleep medication use
- No longer enjoying what you used to; not feeling excitement anymore
- Resenting the patient
What to Do If You Are Feeling Burnout
If you are experiencing any of these symptoms, you may need to assess how you’re feeling.
Self-care is a necessary component. At first glance, that may seem contradictory to taking care of someone else. Just like the person you are caring for needs extra help, so do you. If you don’t take care of yourself, who is going to be able to take care of them? Give yourself permission to seek help. Without assistance, it can become increasingly difficult to have empathy and motivation to help your patient.
“Outsourcing is the most important starting point,” said Dr. Riggio. “It allows you to double down on your energy.”
Each item identified to outsource is one less thing to do saving you time and energy. Here are suggestions from Dr. Riggio, Vaal, and care partners to help with or to avoid care partner burnout:
- First, remind yourself it’s okay to get help.
- Write a list of all you do, determining which items can be done by others and start outsourcing.
- Hire someone or create a rolling schedule of friends to sit with the patient for an hour or more while you practice self-care. Go for a walk or go in another room to read, shower, or cook a favorite recipe.
- Speaking of cooking, not everyone enjoys playing chef. Plus, it takes time. In addition to food and grocery delivery services, there are low- to no-cost solutions like CaringBridge.org. Its Start a Meal Train® page helps you organize people providing home-cooked meals, as well as running errands.
- Eat nutritiously.
- Seek help driving to appointments and use the ride-time focused on accomplishing something else, such as catching up on emails/calls or relaxing. Get sleep. According to the Centers for Disease Control and Prevention (CDC), adults need at least seven hours of good quality sleep nightly.
- Just venting to someone can be helpful. Talk to a friend.
- Join a caregiver support group related to your patient’s disease.
- Seek help from a LCSW or licensed psychologist.
- Get outside at least 15 minutes daily.
- Stay current on your medical and dental appointments.
- Spend time with your patient in your original relationship dynamic versus solely as a care partner.
“Care partners go through emotions ranging from ‘what if I’m not enough?’ to guilt and shame for feeling resentful,” said Dr. Riggio. This often results in help not being sought.
For those who think seeking help is a failure, Vaal suggests changing your point of view. “Instead, think of help as allowing you to have a break so you can do your best for the patient,” she said.
April 13, 2023
Patient Power Newsletter
CLL Patient Advocate
Michele Nadeem-Baker is a results-driven global communications and public affairs leader with senior-level corporate experience and is Patient Power’s PR advisor. She is also a person living with chronic lymphocytic leukemia and was drawn to Patient Power because it has served as a resource for her. Joining the team mid-year in 2015, she brings an extensive background in communication strategies that encompass, among other ventures, various national and international health-related concerns where she has successfully taken a leading role. Michele has extensively represented the American Cancer Society and worked with organizations on medical conditions including various cancers and cardiovascular health — and now draws on her experience as a patient to represent Patient Power to the media and to the public. She received her BA in Economics and Speech Communications from Boston College and went on to earn her MS in Broadcast Journalism from Boston University.
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