Naomi Williams, a 47-year-old single mother in Augusta, Georgia, gave birth 15 years ago to her only child, Noah. During her pregnancy and regular doctor visits, she expressed concerns that were mostly ignored. Her blood pressure was high, her feet were swollen, and she gave birth by emergency cesarean section 14 weeks early.
Because of Williams’ lack of oxygen and blood flow, Noah was born dead. He was revived and sent to the neonatal intensive care unit (NICU) with serious complications and disabilities and wasn’t expected to live for long. Williams received a diagnosis of preeclampsia, as well as hemolysis, elevated liver enzymes and low platelet count (HELLP), a life-threatening pregnancy complication, that came too late for Noah to avert the complications with which he’s been living since his birth.
Following five months in two NICUs, Williams brought Noah home. The hospital staff didn’t expect him to live for long and warned that if he did, he would experience many serious complications and would need constant support.
Williams and Noah have created a meaningful life together. Noah has cerebral palsy, which impacts his arms and legs and is wheelchair dependent. He’s unable to speak and communicates with gestures and sounds. He doesn’t see well, but he can hear and is busy every day attending special education classes with other children like himself.
Williams has learned how to find the resources she needs to help take care of Noah, to seek out support groups and find help from her community and others who have similar experiences. She also works full time as a grief coach and on a contract basis with a health care system to help people navigate the services and support needed in difficult situations.
“Noah is the best thing that’s ever happened to me, and although on paper he has a lot of diagnoses, he is a boy who smiles with his entire body, is funny and continually dares me to give him the opportunities to show me what he is able to do,” Williams says. “I’ve learned so much from him about myself and about life and all its possibilities.”
Whether you’re caring for your child who requires special care, a spouse who is acutely ill or your aging parent who needs senior care, becoming a family caregiver is no small feat, but it is a role that more and more people are having to step into.
Like Williams, there are at least 53 million or 1 in 5 unpaid family caregivers in the United States, most of whom are women.
With the advancement of medical treatments, longer lifespans and more people living with chronic illnesses and disabilities, it’s not unlikely that you already are or may find yourself in the role of primary family caregiver.
[Read: How Much Do In-Home Caregivers Cost?]
What Is a Family Caregiver?
A family caregiver is a family member or friend of a patient with a chronic health condition or life-limiting illness, disability or mental health challenge.
Common caregiving tasks and responsibilities include helping with:
— Personal care
— Medical and nursing care
— Medication management
— Health care coordination
— Household chores
— Financial planning
— Emotional support
“As a critical member of the health care team, a family caregiver is tasked with shouldering enormous case management responsibilities that include learning everything you can about the condition of the person for whom you’re caring, managing any hired help, determining who pays for care and where that money comes from, power-of-attorney issues and becoming health care proxies,” says Allison Applebaum, a clinical psychologist and a professor and director of the Steven S. Elbaum Family Center for Caregiving in the Brookdale Department of Geriatrics and Palliative Medicine at the Icahn School of Medicine at Mount Sinai in New York.
The first thing you should do when becoming a family caregiver is evaluate who is in your network of family and friends and how they can contribute to helping you take care of your family member.
Nobody can do this alone, and although you’re the primary caregiver, you’ll need the help of others, or you’ll burn out quickly.
How to Have Conversations With Your Loved One
It’s important that conversations between caregiver and the person for whom they are caring take place periodically to ensure that future care plans align with the patient’s goals.
Applebaum says these conversations should always be evolving and should be about:
— Goals for care and quality of life
— Changes that will occur over time
— The financial situation and funds available to enable those plans
Caregivers should ask themselves what they’re willing to pay out of pocket, where other financial help might come from and how the costs of care will be covered.
For Joan Reese, whose name has been changed to protect her privacy, these conversations with her aging father were important to allow him to age in place in his own home until he died at the age of 97.
Reese knew for a long time that it was his wish to remain in his own home as he aged and helped make that possible. Every Friday, she’d drive a distance to spend the day with him and as he became increasingly frail, she visited more often.
Reese and her father spent the time together talking about almost everything, including his care, how he envisioned the rest of his life, where he wanted to be buried, his wishes for financially taking care of his family, the support he was getting and needed, his daily finances, adding additional household help, his medical appointments and the things other than health issues that they both loved and appreciated in life.
“I’m so grateful for every minute I spent with my father and that I was able to make it possible for him to remain in his own home until he died,” Reese says. “My father was kind and grateful and always showed his appreciation. Nothing between us was left unsaid, which I feel was a gift to both of us.”
[Read: Hiring an In-Home Caregiver: What to Consider]
How to Navigate the Health Care System as a Caregiver
Finding the resources and help needed to care for your loved one can be daunting, but there are resources that can help you navigate the health care system.
Hospital resources
Most hospitals, especially children’s hospitals, have social workers, patient advocates and palliative care teams that can help provide you with the hospital’s services and resources.
Along with your primary care provider, they can help you navigate your insurance coverage, lead you to specialists and connect you with outside organizations.
Community organizations and support groups
Community organizations and caregiver support groups are great resources for people to get connected with other people and families going through similar situations and can provide disease-specific help.
“Ask about and look for organizations that specialize in particular population groups or people with specific diseases where you’ll find others who are having the same kinds of experiences you’re having and experts who can help you work your way through what can be an extremely complicated landscape,” says Chrissy Salley, a pediatric psychologist and director of clinician engagement and outreach for Courageous Parents Network (CPN), a national nonprofit organization devoted to the psychosocial needs of parents of children with serious medical conditions.
The following organizations can provide condition-specific support and resources for caregivers:
— Hospice Foundation of America
— National Alliance for Caregiving
— National Alliance on Mental Illness
— U.S. Department of Veterans Affairs
— Alzheimer’s Association
— Parkinson’s Foundation
— Family Caregiver Alliance
— American Cancer Society
— Area Agency on Aging. To find your local AAA, visit the eldercare locator website or call 1-800-677-1116.
CPN, for example, provides information that can help you better advocate for your child. By connecting with others who’ve had similar experiences, you can learn how to better communicate with your care team to determine what you want your child’s life to be like and how to get there.
“I found all kinds of people on the CPN website who were having experiences similar to mine, and that gave me a sense of support. It made me feel less alone in my journey with Noah,” Williams says.
[READ: Resources for Caregivers of Military Veterans]
Tips for Preventing Caregiver Burnout
Without support, almost every caregiver is at high risk for burnout.
“No matter how much you’re doing as a caregiver, you’re likely to feel guilty that you’re not doing more,” says Dr. Kartiki Churi, a psychiatrist with Family Care Center, a comprehensive outpatient mental health service.
Here are a few tips to prevent caregiver burnout:
— Preserve your energy. Avoid people who drain you, and consciously spend your time only with people who are supportive. Be mindful of your feelings, and when you need to recharge, take the time to do that.
— Work with a therapist. A therapist can provide a safe place for you to express your feelings and frustrations and to work on ways to set boundaries and practice self-care.
— Meditate. Find a time at the start of your day to practice meditation. It can help you stay calm, reduce stress, stay focused and cope better with anxiety and depression. It will allow you to be less reactive, fully present and more engaged in the moment throughout your day.
— Get quality sleep. Getting a good night’s sleep helps reduce stress and anxiety, enhances cognitive function, improves your mood and helps you make better decisions when you’re awake. When you’re asleep, you process emotions that allow you to better react to stressful situations.
— Delegate. It’s important to be willing and open to asking for help. Bring in other family members or friends to take over for you from time to time. It may be helpful to make a very specific list of all the tasks required to take care of your loved one, determine which tasks you can perform and which tasks you need to ask others to help you with.
— Get respite care. Respite care — such as adult day care centers, home health care or temporary stays at assisted living communities — allows caregivers the opportunity to take a few hours for themselves.
Bottom Line
Like Reese’s experience with her father and Williams’ experience with her son, being a caregiver can be a profound and loving experience. It can give you the opportunity to enhance and repair relationships and can add new dimensions of meaning to your life.
While it may be exhausting and overwhelming, being a caregiver can let you give back to someone who has given so much to you. It also may allow you to bond with other family members with whom you may not have had the opportunity to bond with otherwise.
“If you’re lucky, you may come away from the experience of being a caretaker not only empowered, but with an immense sense of gratitude for having been given the chance to spend a special moment in time with a loved one,” Churi says.
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originally appeared on usnews.com
Update 04/01/25: This piece was previously published at an earlier date and has been updated with new information.
