Dealing with conflicting demands fosters fatigue, frustration and guilt. Patience wears thin. Emotions are raw. As physical, mental and emotional exhaustion takes hold, a condition known as “caregiver stress syndrome” emerges. It typically results from the caregiver neglecting his/her own physical and emotional health. While focused on the care of an ill, injured or disabled loved one, it leaves little time and energy for oneself. Caregiver stress syndrome makes one feel unable to cope.
More than 40 million Americans serve as caregivers. According to a Caregiving in the U.S 2020 Report from the AARP and National Alliance for Caregiving (NAC), as many as 36% of caregivers feel highly stressed. Four in ten caregivers experience depression. The American Psychological Association found that stress hormones can lead to high blood pressure or diabetes, making them more vulnerable to flu and other infections. More than 60% of caregivers are women who additionally struggle with decisions that have major ramifications down the road. They must often balance caregiver duties with the psychic and financial trauma of pausing careers and saving for retirement. The economic impact on women pushes some into poverty during retirement. Senator Tammy Baldwin (D-Wis) noted, “If women received income for the unpaid care-giving they currently provide, that amount would be equal to the Medicaid budget.” Caregiving is not just a patient-care issue. It’s both a heath and economic issue, as well.
John Hopkins Clinic Medicine and Cleveland Clinic studies have found that continually balancing the needs of the patient, coworkers, employers and other family members leads to unavoidable conflict. Managing patient care with a lack of resources, money and skills leads to feeling out-of-control. The care-giver forfeits personal time, which leads to an inability to separate one’s roles of care-giver from spouse, parent, sibling, co-worker, etc. Ultimately, these roles can place unreasonable demands on the care-giver. Often the patient has unrealistic ideas regarding his/her personal, which further complicates matters. These burdens can lead to self-destructive behaviors such as smoking and drinking which can, in-turn, endanger the patient.
Do You Have Care-Giver Burnout?
Do you experience any of the following symptoms on a regular basis?
- Easy to anger or frustrated with your loved one, feeling trapped or overwhelmed.
- Anxiety about health, financial, work or social issues.
- Lack of coping skills, concentration or difficulty solving problems like keeping up with appointments.
- Denial of loved one’s condition refusing to acknowledge the patient’s illness or disability or feeling hopeless about it.
- Depression that makes you feel sad, often crying easily.
- Exhaustion that makes it hard to get through the day.
- Health issues such as getting ill more often, having frequent headaches, gaining or losing weight, too much sleep or not enough.
- Irritability and moodiness, feeling like things don’t go smoothly for you.
- Sleeplessness, tossing and turning, not able to sleep even when there is time.
- Social withdrawal from friends and activities you used to enjoy.
- Abusing drugs or alcohol, including prescription drugs.
The American Medical Association developed a tool for a self-assessment that help you evaluate your level of stress. It’s highly recommended by the American Psychological Association. Take a moment to do a self-evaluation.
Reduce Caregiver Stress
- Take a Break: Respite should be a key part of every caregiver’s schedule. Ask a friend or relative to take your place for the evening while you attend an event or go out to dinner. Just a few hours away from responsibilities in a different setting will refresh you.
- Set Realistic Goals: Break down large tasks into smaller steps to do one at a time. Prioritize and make lists. Say no to events that drain your energy such as hosting holiday meals or serving on committees.
- Keep Excellent Records: Keep medical records organized and handy. Include Powers-of-Attorney, Wills, Medical Directives, lists of medications and contact numbers for all important people. A calendar is helpful to organize and coordinate all homecare visits, medical appointments, volunteers, etc.
- Automate Financials: Simplify paying bills by setting up auto-deductions. It really comes in handy when a sudden hospitalization coincides with your bill-paying schedule.
- Get Support: Sharing your struggle with other caregivers can be comforting. They can offer ideas learned from their own experiences that will help you. Local churches and hospitals may offer support groups or you may prefer an online group such as org.
- Employer Benefits: If you are employed, find out what benefits are available to you concerning your role as a caregiver and use them. You may be allowed to work part-time, leave early for doctor appointments or take advantage of the Family Leave Act which provides certain employees for up to 12 weeks of unpaid job-protected leave per year. In 2021, the law may change to provide FMLA as a paid benefit under the Family and Medical Leave Act so keep informed.
- Ask for Help: Many relatives, friends and groups will offer to help. They’ll often say, “Let me know if I can do anything.” Make a list of those angels and give them a call. Ask each of them to help with an item on your wish list. You may ask a working friend to pick up medications on the way home from work, or ask a neighbor who shops at your favorite store to pick up a few groceries for you. Your baker friend would be pleased you asked her to make an extra loaf of banana bread for you when she bakes. The church group may be willing to clear your flower beds for spring or install a ramp. They really want to help. Ask!
- Nurture Positive Relationships: Take the time to talk with a friend. Even when you feel overwhelmed, you will find support and maybe even a few good suggestions. A good listener helps you express your emotions in a positive way. Share a cup of tea on the porch while your loved one naps or arrange to visit them on your next respite.
- Take Care of Yourself: Don’t ignore the symptoms. Include self-care into your daily routine. Eat well, drink effusively, sleep regularly and exercise faithfully. Because caregiving is so hard, doctor’s often think of caregivers as “hidden patients.” Tell your doctor(s) you are a care-giver so he/she can monitor you for stress and other related issues. Get all your immunizations, annual exams and prescriptions on schedule.
- Bring in Homecare Early: To avoid bitterness towards family members who should help more but don’t, communicate early about dividing Then set up a schedule that keeps everyone clear on expectations. Even those who live far away can visit from time-to-time to do seasonal chores or handle routine activities such as paying bills, making appointments, calling insurance companies or sending thank-you cards. If you are the only caregiver, bring in quality and personalized homecare, hospice or other support services early, before your health is affected by trying to do everything yourself. They offer a wealth of experience and education, not to mention hands-on relief from the daily grind. Just a few hours a week of homecare takes a great load off one’s shoulders. Even if the patient resists someone else taking your place even for a few hours, be determined about it.
- Communicate Effectively: Think of your friends and relatives as a team. Make a contact folder in your email of everyone you usually keep updated to what’s going on in your life. Save time by writing one email that is sent simultaneously to all your contacts. This method will protect your privacy by eliminating the need to broadcast personal issues on social media. You can do the same with group text. A quick email once a week keeps everyone up-to-date and saves you time repeating the same information to each individual. It is also a good way to ask for help as friends and relatives can be made aware of a particular issue for which you need help. (i.e., My faucet has a drip. Can anyone fix that for me?)
- Meditate: Pray, listen to or play music, visualize calmness, breathe deeply, get a massage, or just smile. Come up with a mantra such as, “One thing at a time” or “It will be okay; I can do this.” Keep a journal. Put your thoughts on paper to get them out of your head. This helps give one a better sense of control. Try aromatherapy or soak in a warm bath. Move your body fluidly to ease stress.
- Practice Patience: When all else fails, count to 10.
Caregiver Syndrome is real.
Unrelieved stress manifests strongly in our minds and bodies when it continues for a prolonged period of time. As human beings, we have our limits as to what can be achieved. But when it comes to caring for our loved ones, we push those limits. It’s a job that requires our utmost devotion and comes with inherent risks, but we step up to the plate when we’re needed by those we love. Caregiving is often a long road to travel, but we can emerge at the end of the journey stronger than when we began.
Author: Judy Harrison, an experienced caregiver for over 30 years.
