​Caregiver Burnout Part 1: Your Needs Are Equally Important

Posted by Lauren Presutti in Life After Paralysis on November 02, 2021 # Caregiving

This blog is the first in a two-blog series on caregiver burnout.

Man smiling and using a wheelchair while looking at a woman sitting and smiling next to himCaregivers are extremely important to support systems for those needing physical help with activities of daily living. While some individuals are able to regain their full independence after a spinal cord injury, many others will need caregiving assistance, especially those who had upper-level injuries resulting in quadriplegia. If you provide care assistance to a family member, loved one, friend, or someone as part of your employment, remember how valuable you are in the life of your care recipient. It is your effort, time, energy, and compassion that directly helps them achieve their basic needs so they can continue living a normal, fulfilling life. You are essential to their everyday quality of life. At the same time, we have to acknowledge that caregivers are humans, too. It is often very challenging for caregivers to balance the needs of their care recipients and their own needs, including their own feelings, wellness, and overall mental health.

It's common for many caregivers to struggle to find this balance. If you have ever felt burned out, exhausted, or generally drained due to caregiving responsibilities, you are not alone. You may feel like you don't have enough time to focus on your own needs, you might have feelings of guilt when you attend to your own wellness, or perhaps you struggle to speak up and ask for what you need. Let's explore some of the barriers to your own wellness that you might be facing.

Ask yourselves the following questions:

  • Do you have any feelings of guilt or think you are selfish if you prioritize your own needs?
  • Is it frightening to think of your own needs? What is the fear about? Where does that come from?
  • Are you afraid that others might perceive you and a negative way if you focus on your wellness?
  • Are you worried that your care recipient might become upset if you take time for yourself?
  • Do you have trouble asking for what you need? Do you feel inadequate in some way if you ask for help?
  • Do you feel you have to prove that you are worthy of your care recipient's affection? Does that ever lead to you taking on too much as a result?
  • What would you say is the biggest reason preventing you from self-care? Time? Resources? Support from others? Lack of other caregivers available to step in?
  • Have you generally struggled with prioritizing your mental health even prior to being in the role of a caregiver?
  • Do you have any negative self-talk or internal beliefs that make you feel as though you're not deserving of prioritizing your wellness?

Reflecting on these questions is an excellent starting point because it helps you identify what personal barriers are contributing to your feelings of caregiver burnout or exhaustion. Beyond the actual caregiving responsibilities, you may also experience high levels of stress because it can be emotionally taxing to witness someone you love or care for struggle with physical impairments due to a spinal cord injury. You may be involved in the medical life of a person with paralysis, you may be involved in making decisions on equipment, or you may be accompanying them to all different types of health appointments, which can sometimes be emotionally draining to think about everything that your care recipient is going through. You may also have a high level of stress over time as you become more aware of community barriers, employment barriers, or social barriers that impact the life of your care recipient. It's hard to feel like it's not fair that you have certain access and freedoms in the world while they may be facing more oppression and limitations. In other words, sometimes it's not simply the caregiving responsibilities of helping a person shower, get dressed, or use the bathroom, but rather it can also be these additional social and emotional factors that lead to high levels of stress for caregivers. Take a moment to reflect on the feelings and thoughts that you have felt in your life as a caregiver.

You may be perceived as a strong, unbreakable superhuman caregiver that is capable of handling everything all the time, but you probably know internally that's not true. If other people see you this way, remember it's okay to admit that you also struggle with certain things because nobody is a robot. You are a human, and like all humans, you are allowed to talk about the things that you are struggling with. Sometimes just opening up about what you're feeling to safe people you trust can help you feel an immediate sense of relief. You may benefit from joining the Reeve Foundation's "Caring for a Family Member Living with Paralysis" virtual support groups, as these provide opportunities for caregivers to connect with others who understand being in the role of a caregiver.

No matter what your experiences are, there are ways for caregivers to take steps to restore their wellness. My next blog will dive more into specific tips and strategies for addressing caregiver burnout. For now, I want you to know that your feelings matter, your mental health matters, and your own personal needs are equally important to the needs of your care recipient.

If you have questions or if I can be a resource for you, please don't hesitate to reach out—your mental health matters.

To learn about River Oaks Psychology, visit www.riveroakspsychology.com and follow River Oaks Psychology on Facebook, Instagram, Twitter, YouTube, and LinkedIn.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.