Many adults need help as they age with everyday activities because illness, a disability or cognitive decline makes it difficult—sometimes impossible—to get by on their own. They need someone to run errands for them, clean the house, cook meals, manage medications, help pay the bills, bathe, get dressed and the list goes on.
Often, all those roles are played by one person: a spouse or partner, or an adult daughter or son. The result of taking on this responsibility can be something called “caregiver stress syndrome”—a state of physical, emotional and mental exhaustion.
Caregiver stress syndrome happens when people are so busy taking care of a loved one that their own well-being suffers. They’re always preoccupied with meeting someone else’s needs that they forget their own—or feel guilty about having any needs at all because they’re not the one who’s sick.
Some caregivers insist on doing everything themselves because they feel it should be their sole responsibility. Others simply don’t want to burden other people, so they never ask for help. In time, they become so overwhelmed that they neglect their own needs or become unable to keep up the desired standard of care, which leads to more stress.
How to avoid caregiver burnout? There’s no single, easy solution to such a complex situation. But the following tactics can help.
Causes of caregiver burnout
There’s an emotional aspect to caregiving, whether that’s tending to a spouse or partner or helping an aging parent. Spouses or partners who have to provide care for a partner carry an additional workload as well as the emotional trauma of seeing their significant others weakened or in pain. Adult children struggle with the role reversal of providing physical care and possibly making financial decisions for their parents.
Some other aspects that contribute to caregiver burnout:
- A lack of privacy while caring for someone else
- Difficulty balancing your loved one’s needs with those of your own family or workplace
- Emotional trauma associated with having to parent a parent or becoming a nurse instead of a partner
- Worrying whether there’s enough money to cover the sick person’s needs
- Concern about providing the best care for a loved one, especially if you don’t have help or if the loved one’s demands are unreasonable
- Unrealistic expectations about caring for someone with a progressive condition, such as holding out hope your loved one will get better
Caregiver stress signs
Caregiver stress syndrome warning signs vary because each situation is different. For example, someone with a lot of family members nearby to pitch in won’t be as physically burdened. Yet, even those lucky individuals can expect to experience some of the following stress-related symptoms:
- Feelings of sadness, helplessness or hopelessness; worrying about your ability to keep providing enough care
- Emotional and physical exhaustion, which may lead to your becoming sick more often
- Withdrawal from family and friends
- Irritability; in serious cases, the desire to harm yourself or the person for whom you’re caring
- Being angry at the person who’s sick
- Changes in appetite or sleeping habits; inability to concentrate
- Lack of interest in things you used to enjoy
How to avoid caregiver burnout
Again, there’s no single, simple solution to such a complex situation. You’ll likely need to implement more than one of the following tactics.
Ask for help
Caregiver stress can be eased with regular help from family, friends or professional services. According to the National Institute on Aging, it’s best to be proactive: As soon as possible after a condition is diagnosed, set up a family meeting that includes the care recipient if possible. Zoom or FaceTime can loop in those who live far away.
Some families designate a primary caregiver to handle the day-to-day running of the household. Over time, that person will be able to refine the kinds of assistance needed and ask others to help provide it.
For example, the most organized family member might keep track of medical appointments, make sure the household bills are paid and compare healthcare billing with available insurance. If there’s a relative with a medical background, that person could volunteer to speak with healthcare professionals and oversee care decisions.
Physical help is likely needed, too: household chores, yard work, providing meals, running errands. Some or all of these tasks can be accomplished through paid services, with everyone chipping in to handle the cost.
It’s important to play to each person’s strengths and to recognize their limitations. Someone with a demanding job might not be able to take much time off; however, he or she might be able to pay for some household help. If family members live far away and still have kids at home, they probably won’t be able to travel frequently. But they might be able to schedule a week off once or twice a year to give the primary caregiver a break.
Look for respite care
If the patient decides to enter into hospice, Medicare will cover occasional inpatient respite care in an approved facility. The person in hospice can stay for up to five days at a time. This short but essential break can help their family avoid caregiver burnout. Ask the hospice provider to set this up.
Some long-term care insurance policies will also cover respite care to give the caregiver a break, typically for 14 to 21 days a year. Talk with the insurance agent about what the policy provides.
Respite care funding may be available through resources such as your state’s department of health and social services, a Medicaid waiver, the Veterans Administration or tribal organizations. For more information on this, and to find respite care in your region, visit the Arch National Respite Locator Service.
Join a support group
Your family and friends may be sympathetic. However, unless they’ve provided care, they can’t truly understand what you’re going through. Talking with others in the same situation is another way to help you avoid caregiver burnout.
The nonprofit Well Spouse Association can help you find (or start) a group in your area. The WSA offers tips and resources for different kinds of care (military, disability, illness), grief, financial assistance and more. There also are numerous caregiver support groups online and on social media sites.
The reason the flight attendant tells you to put on your own oxygen mask first is that you can’t help others if you’re incapacitated. As noted earlier, caregiving is a complicated dynamic. You’re worried about your loved one, physically stressed by the demands of providing care and have little to no time to yourself. Additionally, there’s the pain and confusion as the relationship changes: You’re more of a nurse than a partner or having to act as a parent to your mom or dad.
It’s vital to schedule some breaks in your routine. This could be as simple as taking a short nap or a daily walk while a friend or relative holds down the fort. It could also mean arranging for a few days of the respite care mentioned above.
Stepping away even for an hour might be difficult at first because, again, you’re anxious about your loved one’s care. Talking with other caregivers, a religious advisor or a therapist could help you understand the importance of self-care.
Pay attention to what you’re eating, as a healthy diet is particularly important during stressful times. If you’re too tired and stressed to shop and cook, perhaps friends and relatives could provide your favorite dishes or pay for a meal service.
All this applies to non-primary caregivers as well. According to the National Institute on Aging, family members who are far away also experience caregiver stress syndrome. They worry about the loved one’s health, feel guilty about not being there and at times might feel jealous of those who are close by. Those whose family or financial situations prevent them from visiting often may blame themselves constantly.
Like the hands-on caregivers, they need to learn to balance what they wish they could do with what they are actually capable of providing. As the kids say, it is what it is.
The bottom line
Caregiving is an exhausting and emotionally wrenching job. You feel that you’re on call 24/7 and worry that you’re not providing the right amount of care. It’s so easy to ignore your own needs.
But it’s essential to maintain your own physical and emotional well-being during this stressful time. Being proactive about avoiding caregiver burnout will help you provide the best possible care and comfort to your loved one.