New to Caregiving? Here’s What to Expect

Many adult children find themselves helping their aging parents a little more each year, adapting as their task list grows. But a sudden event can abruptly catapult a person into the caregiver role. A parent might suffer a stroke, a serious bone fracture or another health emergency. Or, if your parent lives at a distance, you might be unaware that their condition has changed until the doctor or a neighbor calls and says, “You’ve got to do something!”

Whatever the situation, your first days as a family caregiver can be overwhelming. Here are a dozen things to know, based on the experiences of seasoned caregivers:

1. Caregiving can be an emotional roller coaster. Providing care for a loved one can offer many emotional rewards. “Mom cared for me; now it’s my turn,” you hear caregivers say. But along with the positive emotions, we might experience grief at the change in our loved one. We might feel resentment at how our own life has changed—and perhaps guilt for feeling that way. Caregiving can be stressful, especially if we’re already busy with a job and other family responsibilities. This stress puts us at risk of “caregiver burnout”—a sense of exhaustion when a caregiver feels drained of time and energy. Don’t judge this palette of feelings; they are normal. But they’re also a sign that you need help.

2. You may need a crash course in your loved one’s condition. Medical care is more complex these days, and so is family caregiving. Today’s caregivers must perform medical tasks “that would make a nursing student tremble,” reports AARP’s Susan Reinhart. “Mom received a tracheostomy and it was my job to support her treatment,” says one daughter. “I knew nothing about it and it was daunting!” Learn all you can about your loved one’s condition, ask the doctor for help, and know that your skills will improve with time.

3. Other family and friends are often happy to help you—but they need you to take the lead. If your loved one’s care needs are great, you can’t do it all by yourself. Enlist siblings or other family members in your care system. Call a family meeting. Make a list of tasks. Share with others what you’ve learned about your loved one’s condition. The more confident others feel, the more likely they are to help you.

4. Friendships might change. Sometimes friends, too, offer to pitch in to help and lend support. But caregivers report that as their loved one’s health condition changed, some friends “ghosted” them, meaning they didn’t call or visit. Some friends “just don’t know what to say.” Others say they are uncomfortable around disability and illness. Put them at ease as you can.

5. The senior support system is complicated. Many public and private support services are available, but the system is fragmented. Talk to your loved one’s health care team about resources that are available in your community. Call your local area agency on aging to start the investigation. Ask lots of questions. Be persistent.

6. Focus on your own health. Studies show that the stress of caregiving can put the caregiver’s health at risk—so much so that their loved one might outlive them! Caregiving can raise the risk of heart disease, diabetes and even dementia. It’s not selfish to make time for exercise, eating well and doing things you enjoy. Repeat as necessary: “Caring for myself is an important part of caring for my loved one.”

7. Protect your career. Recent research from Baylor University showed that workers who also are family caregivers frequently experience work interruptions, and 50% of these interruptions are “severe.” Working caregivers miss promotions and use up all their vacation time on care tasks. Some leave their paid work, retiring early while their nest egg is smaller, collecting Social Security earlier so their lifetime benefit is smaller, and compromising their own retirement. Today, many companies realize the impact of caregiving on valuable employees; explain to your employer what is going on in your life.

8. Other caregivers can be a valuable resource. Nothing takes the place of interacting with people who have “been there.” Fellow caregivers can offer practical suggestions, a sympathetic ear, and even a dose of stress-relieving laughter. Connect with caregiver friends, or join an in-person, virtual or social media-based support group. If your loved one has Alzheimer’s or a related condition, check out dementia-friendly gatherings and activities that offer appropriate activities in a nonjudgmental setting for people with memory loss and their caregivers.

9. Technologies can help. There’s a boom these days in “senior tech” startups—everything from sensors to monitors to senior-friendly communications devices, “smart home” technologies and even robots. These can support the well-being of your loved one and help you out—but remember that someone has to serve as the tech lead, and that will likely be you, so be sure you’re in on the discussion as these devices are selected. If you’re not tech-minded yourself, this might be a niche other family members are willing to fill.

10. There are many living options for older adults. If your loved one’s care needs are great, moving to an assisted living facility or another supportive environment might be a good choice. Do your homework before selecting a place. If your loved one would rather receive care at home—and AARP figures show this is the preference of 90% of older adults—professional in-home care can be a good solution. In-home caregivers provide help with daily activities—bathing, dressing, toileting, meal preparation and following the doctor’s recommendations. Professional caregivers provide supervision and companionship, and above all, peace of mind. Talk to your parents and other family members about how to pay for this valuable service that can save your health and your career.

11. Your loved one may resist care. Perhaps you’ve worked with an agency to find the perfect caregiver arrangement for Dad and you’re already feeling a sense of relief knowing he will be in good hands when you can’t be there—and then, he balks, saying, “I don’t want a stranger in the home!” or “I don’t need help.” Recognize that accepting care can be a difficult symbolic milestone for your parent. Ask the agency for advice; they’ve certainly seen this before. Older adults who fear that accepting care might threaten their independence usually go on to realize that care assistance actually enhances their autonomy. They quickly come to prefer receiving personal care, such as assistance using the toilet, from a professional.

12. You may find yourself serving as a caregiver advocate, and that’s good! Today, family caregivers are banding together to advocate for the 50 million family members and friends in the U.S. who provide care. AARP reports that informal care provided by family is currently valued at close to $500 billion each year! There is strong interest in legislation that provides increased help for family caregivers.