At the 2023 US HAEA National Summit Caregiver Appreciation Night, Jennifer Hartstein, PsyD, shed light on the vital topic of "Caring for Caregivers." In her insightful presentation, Dr. Hartstein emphasized the importance of caregivers prioritizing their own well-being while tending to the needs of their loved ones. Building upon her valuable insights, this article aims to provide additional tips and tricks to help caregivers avoid burnout and maintain their own health and happiness.
Whether you are a caregiver or an individual with Hereditary Angioedema (HAE), this message is for you! It’s important for those with HAE and their caregivers to consider the unique challenges that this group of individuals experiences. Being a caregiver is challenging, especially when your loved one is living with HAE.
It's common to push aside your own needs as you care for someone else. Often, the importance of finding time for yourself is minimized and self-care is ignored. Self-care, however, should be a priority as it makes you a more effective caregiver. As the adage states, if you don’t put the oxygen mask on yourself first, you are not as well-equipped to help others.
Caregiver burnout is real! There are often specific challenges faced by those who are focused on others, including:
Limited time: Caregivers often have less time to spend on themselves and with other people in their lives. Because of this, caregivers often have a hard time finding balance, frequently sacrificing things that they usually enjoy.
Financial burden: Sometimes, the demands of caregiving can impact one’s ability to work fully or grow within their career, creating financial strain.
Increased stress: Because of their focus on their caregiving responsibilities, stress can build up and impact sleep, mental, and physical health.
Emotional burnout: Being responsible for someone’s care can lead to isolation or detachment from others. Simultaneously, caregivers may feel shame or guilt in asking for help, causing burnout.
If you are a caregiver and identify with the above challenges, here are some important tips to consider for yourself that can help you find balance, avoid burnout, and continue being the heroic caregiver that you are.
Take time for yourself: Self-care is NOT selfish. Creating a daily, non-negotiable, self-care routine can be extremely valuable. Take note of how you are eating and sleeping. Are you moving your body consistently? Have you noticed that you are falling into unhealthy habits? It’s important to notice how you are doing within these areas. The better you care for yourself, the better able you are to care for someone else.
Connect with your HAEA community: While it may feel like you’re in it alone, many people are in the same or similar situation. Lean on the resources, experiences, and support of your community – like the HAEA! Additionally, creating time to connect socially is incredibly important. Find time to connect with people in the HAE community. Connection is a critical protective factor, and the HAEA provides many ways to connect with people with HAE.
HAEA CARE Support Groups (Community, Acceptance, Respect, Empathy) - where HAE community members can share experiences and support each other. Contact an HAE Research Advocate at research@haea.org if you want to participate in a CARE group.
HAEA Caregivers Resource Guide - The US HAEA published printed and downloadable resources for caregivers to provide unwavering emotional support, ensuring their loved one never feels alone in their journey with HAE, and help them successfully navigate the HAE journey. This resource guide can be found on our website here: https://haeaorg.s3.amazonaws.com/pdf_downloads/Resources-for-Caring+Caregivers.pdf
Set boundaries and expectations: What are limits you can create that will allow you to take care of you and your needs? Here are some examples:
- Be sure to have a clear understanding of your role and responsibilities at work and talk with your manager about your role as a caregiver.
- Don’t be afraid to ask for ways to adapt your work schedule to accommodate your caretaking role.
- Use vacation time to take a day to yourself or spend with a friend.
- Choose a phone call over a video call (e.g., Zoom).
- Set your phone on ‘do not disturb’ at times when you need an uninterrupted break.
Schedule breaks and time off: Our brains and bodies need time to recharge and relax. Support time off for yourself in whatever way you can do it (even if it’s a 15-minute bath or a walk).
Ask for, and accept, help: Even superheroes ask for help. It’s often so hard and can be the most life-changing thing you do. If you ask for it, be willing to accept what is offered.
Care is an important element in all our lives. How we offer it to others, and to ourselves, is a vital element of caregiving and will help you to be a more balanced, grounded caregiver. For more caregiver resources, feel free to reach out to the HAEA by calling (866) 798-5598 or emailing info@haea.org.
Are you interested in sharing your story? The HAEA Community Blog wants to hear from you! Get started here.
