These are not the polite answers people are looking for, so I, and many others like me, often default to the standard response: “I’m fine, thanks. You?”
Mental health, especially in parents and caregivers of children with medical issues and/or severe disabilities, is a real concern. While there is more information and support out there on the internet these days, there is still a very real stigma attached to mental health struggles. Personally and professionally, individuals have to be concerned about how much they share publicly. Some things don’t feel safe to share at all.
Adding to the responsibilities they shoulder daily, parents and caregivers often face isolation and a lack of resources as they navigate their child’s complicated lives and challenges. While navigating specialist appointments, specialized equipment, medications, procedures, hospitalizations, behaviors, lack of sleep, a lack of meaningful respite, and the financial, physical, and emotional impact of all of their child’s needs, life becomes “sink or swim.” Treading water gets us nowhere. We have to keep moving forward so the shark doesn’t grab us. But some days the shark option starts to look pretty good, and that’s a huge concern. When that happens, it’s important that parents and caregivers grab onto a lifeline.
Counselors, especially those who specialize in grief or trauma, are always an option. However, many counselors don’t accept insurance, so the cost may be prohibitive. Many parents and caregivers have difficulty finding care for their complex child, so office visits may not be possible, They may need virtual appointments. Those interested in counseling may find it beneficial to ask their primary doctors for in-network referrals who offer online appointments. But what do parents and caregivers do if they don’t have insurance? What if they don’t believe in counseling or feel it will benefit them? Thankfully, there are other options for support.
Online syndrome and disability organizations and foundations, Facebook communities, and other groups specific to disabilities often provide a safe space for us to share stories and concerns, and to ask for feedback, help, or resources.
One particular organization I discovered through friends is Care 4 the Caregivers (https://care4thecaregivers.org). It provides a range of services and supports related to: fitness, health, meditation, organizations, tools, and webinars to help reduce burnout in parents and caregivers of children with disabilities. Their website states that these individuals often “experience PTSD-like symptoms due to caring for their children without adequate support and resources.” Those who I know personally often discuss that the trauma is never actually “post.” Most of us live it daily. Care 4 the Caregivers has both Facebook and Instagram pages. For anyone out there struggling, it’s definitely worth checking out.
Another excellent website is the Caregiver Action Network (CAN, www.caregiveraction.org). The Caregiver Action Network offers a Plug-in to Care hub that provides on-demand webinars, caregiver tools (including related to self-care), and stories from other parents and caregivers. It also has pages on Facebook and Instagram as well as on LinkedIn, TikTok, and YouTube. While I haven’t yet fully explored this website, it heartens me to know that it and others like it are out there to provide support.
Give Me A Break : Caregiver Resources
Care 4 the Caregivers
https://care4thecaregivers.org
Caregiver Action Network
www.caregiveraction.org
A Mother’s Rest
www.amothersrest.org
For parents and caregivers who are active in church communities and feel comfortable, pastoral care, counseling, and support groups available through the church may also be worth considering. Pastors may provide spiritual guidance for those people who seek it.
What has been most helpful to me, is connecting with friends who are facing similar challenges, or who have already experienced what I will, to share stories or to ask for advice. The life we shoulder as parents and caregivers is too heavy to do alone. A small, trusted group of friends, or even one person willing to listen without judgement from time to time, can make all the difference. Time and again it has for me, just knowing I’m not truly alone. These connections help to keep the sharks at bay.
I’ve finally accepted that prioritizing myself and practicing self-care is a must, decompressing in whatever way feels most helpful in that moment. This allows me to continue to be there for my family and my job in the way that I need to. Parents and caregivers of children with disabilities are often terrible at this. Massages, reading for fun instead of news, walking outside alone with no technology, and annual retreats through A Mother’s Rest (a nonprofit network of year-round parent and caregiver wellness inns located across the U.S., www.amothersrest.org) are a few of the things that I do that provide a sort of mental “reset,” so I can jump back into life in a more manageable way. Parents and caregivers should find the strategies that work best for them, even if they are only for a few minutes at a time. They should incorporate them intentionally into each day.
Mental health is a family-wide issue, and managing it begins with us, one day at a time. Sometimes one moment at a time. We just need to remember to reach out. Help is there.
If you or someone you know is struggling with mental health challenges, emotional distress, or just needs to talk, call or text 988, or chat at 988lifeline.org.
ABOUT THE AUTHOR:
Catherine “Cat” C. Valcourt-Pearce, MS, has worked as managing editor at Gallaudet University’s Laurent Clerc National Deaf Education Center, in Washington, D.C., for more than 30 years. She has also served as a freelance content advisor for four children’s books related to sign language and deafness and has had articles published in Parenting Special Needs and Odyssey: New Directions in Deaf Education magazines as well as on the Scary Mommy website. She and her husband, Larry are the proud deaf parents of four teenage sons, one OHKODA, one deafdisabled, and deaf twins.
Read the article here.