Caregiving Isn’t Just an Eldercare Issue!
Families of children with special healthcare needs may not even realize that they are caregivers. They’re not just taking care of their children, as would be expected. They are using feeding tubes, special formulas and diets, giving shots, dealing with incontinence past potty-training, and using medical equipment, such as: lifts, wheelchairs, walkers and they need accessible homes and vehicles. These families need to go beyond “parenting” – as they are family caregivers.
This can also be true of “well-spouses,” when one person becomes disabled at any age and is cared for by the spouse or partner. Siblings also may help aging parents care for an adult brother or sister with a developmental or intellectual disability. Even youth themselves can be caregivers for siblings, parents, or grandparents. And finally, the most well-known image of a caregiver is one caring for an older adult. But all of these scenarios mean that someone isn’t just being a good sibling, son/daughter, spouse/partner etc. They are going above and beyond through caregiving.
Innovative Programs
Some newer programs in some states are “consumer-directed care” in which the care recipient can choose who is paid as their caregiver. Some states allow parents to be paid as home health aides. Some parents can get paid as nurses. Many of these initiatives began during the COVID 19 pandemic to address worker shortages, and some have been continued.
Other programs such as Home and Community Based Services under Medicaid, keep individuals in their homes and communities and out of institutions. A bill in New Jersey awaiting the Governor’s signature, at the time of print, is the Hospital at Home bill, again keeping people at home instead of in institutional settings. Many Centers for Independent Living around the country have nursing home diversion initiatives that are part of their state’s Medicaid waiver programs.
Take Care : Becoming a Resilient Caregiver
Caregiver Community Action Network Toolbox
www.caregiveraction.org/family-caregiver-toolbox
Family Caregiver Alliance
www.caregiver.org
Caregiver Support Services
www.caregiversupportservices.com
Medicaid
Self-Directed Care
www.medicaid.gov/medicaid/long-term-services-supports/self-directed-services/index.html
Home and Community Based Services
www.medicaid.gov/medicaid/home-community-based-services/index.html
Arch national respite network
https://archrespite.org/caregiver-resources/respitelocator
Caring for the Caregiver
The single most important thing for caregivers is respite, or a break from caregiving. No one can help anyone else if they are depleted themselves. According to the Caregiver Community Action Network (CCAN), “more people enter institutional care due to caregiver burnout rather than deterioration of their condition”. Caregivers need to take care of their own physical/mental health and their spiritual health too, whatever it means to them. Mental and intellectual well-being may be helped by finding out as much as you can about your care recipient’s condition and the choices you have. As Suzanne Mintz who founded CCAN noted, “you may not have all the choices you had before, you may not like some of the choices, but you still have the power to choose”. Informed caregivers don’t feel as helpless or hopeless. Also, emotions can take over if a caregiver can’t do everything as usual, for their care recipient. For example, in the hospital caregivers can’t do their loved one’s personal care (bathing/grooming) if they’re hooked up to medical equipment, but nurses can be helpful in reminding families that they don’t have to be the aide or nurse, just the mom, brother, or daughter etc. At the Heart of the Matter: A Spiritual Journey for Caregivers by Dr. Green is helpful for those struggling spiritually. In this book, caregivers have the “opportunity to personalize his or her caregiving journey based on their individual needs.” She reminds us that spirituality doesn’t necessarily mean religion; it’s whatever the personal transformation means to you. The book has inspirational quotes, poems, thinking points, caregiver assessments and short chapters, as time is frequently limited for caregivers.
By taking care of themselves in these areas, families can truly become resilient caregivers.
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the NJ Coordinator for Family Voices, NJ Regional Coordinator for the Family-to-Family Health Information Center, and Product Development Coordinator for RAISE (Resources for Advocacy, Independence, Self-Determination, and Employment). She also serves as NJ representative for the Caregiver Community Action Network as a volunteer. Nationally, Lauren has served on the Center for Dignity in Healthcare for People with Disabilities transplant committee (antidiscrimination), Center for Health Care Strategies Medicaid Workgroup on Family Engagement, Family Advisor for Children & Youth with Special Health Care Needs National Research Network, National Quality Forum-Pediatric Measures Steering Committee, and Population Health for Children with Medical Complexity Project-UCLA. She has written blogs and articles nationally, including publications in 2 academic journals (https://pubmed.ncbi.nlm.nih.gov/?term=agoratus+l). Lauren was named a Hero Advocate by Exceptional Parent Magazine (www.epmagazine.com Archives June 2022).
Read the article here.