Few people plan to take on the role of a family caregiver. Yet each year, many Americans find themselves shouldering the responsibility of being a home health aide caring for an ill or disabled child, adult or senior at home. With increased life expectancies and medical advances, more people are in need of care for longer periods of time — and family members are often the first to step in to help.
In fact, there are 40.4 million unpaid caregivers of adults ages 65 and older in the U.S., and of that group, nine in 10 are providing care for an aging relative, and a plurality is caring for a parent, according to data from the Bureau of Labor Statistics.
Whether the task creeps up gradually or occurs unexpectedly, providing care for a family member is a challenging job that can seem overwhelming — particularly for those who still have to work, maintain a household and care for other family members. However, with thoughtful planning, a strong support system and a realistic understanding of what the role entails, family caregivers can give their loved one the help they need, without sacrificing their own health and sanity.
Why become a family caregiver?
From financial limitations to feelings of responsibility, guilt and love, there are many reasons one might become a family caregiver.
As Susanne White, of the blog Caregiver Warrior, sums it up, “I wanted to honor and care for those who cared for me.”
White held down a full-time job while caring for her mother, who had dementia, and her father, who had heart issues.
“It was the hardest and best thing I have ever done in my life,” she says.
For White, the decision of whether or not to provide care for her parents was simple.
“Caregivers, for the most part, do not weigh pros and cons — they just dive in,” she says.
Eboni Green, Ph.D. and RN at Omaha, Nebraska-based Caregiver Support Services, says there are distinct benefits to family members serving as caregivers as opposed to hiring out help.
“Generally, family members have intimate knowledge of the personal needs of their loved one,” Green says. “There is often a level of comfort that an adult child has with their parent, or if one spouse is caring for the other, there is a solid understanding of preferences that does not have to be explained.”
How to start off on the right foot
While taking on a role as family caregiver may be unplanned, there are things you can do to ensure a smooth transition.
Understand exactly what kind of care your loved one needs
Begin with a bird’s-eye view of your loved one’s physical and mental needs. A clear diagnosis from a medical professional of their condition will go a long way toward clarifying this. They should also be able to help you understand and possibly learn any specific skills that may be needed to provide adequate care, such as administering injections or recognizing potential problems.
Green says asking about your loved one’s medications, any side effects, the long-term prognosis and paperwork that should be put in place to ensure the care recipient’s wishes are a priority. She also recommends hiring a private case manager or reaching out to your local Area Agency on Aging for assistance.
“This way, you do not put pressure on yourself to determine your loved one’s unmet care needs,” she says. “Case managers are uniquely skilled at systematically assessing your unique caregiving situation.”
Determine which tasks you’ll be performing
What will be required of you as caregiver? Answering this basic question is a key part of seeking out the resources you’ll need to navigate the family caregiver role. Some common tasks home health aides and caregivers perform include providing transportation, maintaining the household (cooking, cleaning, buying groceries), administering medications, bathing, helping with physical therapy, communicating with medical professionals and handling finances and legal issues. Keep in mind that your responsibilities may change over time.
“Most important, do not try to do everything or tasks that you are not comfortable providing,” Green says.
Choose your preferred form of record-keeping
Texas-based Rene Shelton, who has been the sole caregiver for her mother since she had a stroke in April 2019, says keeping track of details is crucial.
“Find a method of keeping all the information you are going to need,” she says. “I also use an old Apple watch that Mom wears to help with monitoring some of the medical issues and her sleeping patterns. This helped several times with medical decisions that we needed to make.”
How to ask for help
Depending on the level of care required for a family member, the role of family caregiver may be more than one person can handle on their own. If that’s the case for you, seek support elsewhere.
“I would suggest starting by determining what you can do and get help in other areas,” Green says.
Recruit family members to work together as a team
When other family members are available to help, Green suggests considering each family member’s unique strengths and working together to provide care.
“Each family member should focus on what they naturally feel comfortable doing and commit to taking care of that task or aspect of caregiving moving forward,” she says. “Consider hiring assistance to provide care that you don’t feel comfortable providing.”
Although Shelton is her mother’s sole caregiver, her three brothers are also involved in their mom’s care.
“I hold the medical POA, and my brothers have other responsibilities,” she says. “I update my brothers regularly on issues and progress here. When decisions must be made, I let them know the facts and ask for their opinions. Financial issues are handled by one of my brothers. We all work together to ensure Mom is taken care of.”
Consider hiring help to support your weak spots
Unfortunately, that type of teamwork isn’t always the norm in families. When other family members aren’t available to help, caregivers may need to seek other avenues for support. Terri Corcoran, a board member of the Well Spouse Association, a national support organization for spousal caregivers, gradually increased the amount of outside care that she brought in to help with her late husband, who suffered from a genetic neurodegenerative condition for over a decade.
“What helped me was hiring aides to do the heavy lifting and help with feeding my husband, which took enormous patience,” she says.
She also created a Facebook group for families dealing with the same condition, and found solace in the community of the Well Spouse Association.
Explore financial assistance options
Home health aides can be expensive, but resources may be available for those who need them. Elaine Mansfield, author of “Leaning into Love: A Spiritual Journey through Grief,” cared for both her husband and her mother-in-law until their deaths.
“Get help,” she says. “If there is no money, get in touch with social services in your area. Make sure doctors know you would like help from visiting nurses or other resources. Talk to social workers at the hospital for what’s available. Advocate for the person who needs care, but also for yourself.”
Consider seeking out an aging life care manager for guidance, or call the United Way’s 211 helpline to find social services in your area.
Self-care for family caregivers
Caregiving can be a 24/7 job, causing many family caregivers to put their own health on the back burner. But self-care is crucial to providing quality care to loved ones.
Take small breaks
Green recommends setting aside time for yourself in every day’s schedule.
“Define what you need to personally destress,” she says. “Don’t wait until you are exhausted to ask for help. Your sanity matters, and you cannot do it alone.”
Create daily routines
Shelton says having a reliable daily schedule can be as beneficial for the care recipient as it is for the caregiver.
“Set routines and maintain them as long as they are helpful,” she says. “Structure helps with those who have problems maintaining healthy boundaries.”
Try not to obsess about the future
While it can be difficult not to worry about what’s to come, Shelton advises caregivers to focus on each day as it comes.
“Always take one moment, one decision at a time,” Shelton says. “When we start looking too far out into the future, we can create anxious hearts. If things change, we can always adjust and change.”
Be kind to yourself
It’s easy to get down on yourself given the pressures of daily caregiving, but it’s important to give yourself a little grace.
“Realize that you are human,” Corcoran says. “Do not beat yourself up for not being perfect, because none of us are. We can’t cure incurable illnesses, we can just strive to manage them as best we can.”
