Family caregivers must make time for health

Are you one of the more than 44 million Americans providing unpaid care for a family member or friend? If so, you’re probably also juggling several other family obligations, as most caregivers are married and nearly half have children under 18 living at home, according to the National Alliance for Caregiving and AARP. While they spend many hours helping their ill or disabled loved one, caregivers own needs often go unmet.

Recently, Health Monitor spoke with Audrey Chun, MD, and Maria Basso Lipani, LCSW. Dr. Chun is medical director of the Coffey Geriatrics Practice and also director of the Martha Stewart Center for Living—both at The Mount Sinai Medical Center in New York. Ms. Lipani is coordinator of the Caregivers and Professionals Partnership (CAPP) Resource Center at Mount Sinai. They answered some of the most common questions about the challenges of caregiving.

Q. What are the biggest problems caregivers face?

Dr. Chun: They’re so busy helping others that they neglect their own health. Research shows that about 33% of people who do the most intense caregiving say their health is fair or poor compared with just 9% of the general population. And doctors say long-term caregivers often suffer from poor immune function, depression, anxiety, and stress.

Basso Lipani: Caregivers are often unaware that services exist to help them. They also tend to discount their contributions. When you don’t acknowledge all the ways you provide care, it’s difficult to know when you’ve taken on more than you can manage.

Q. What are the best strategies for managing these problems?

Dr. Chun: Caregivers must take care of themselves because if they get sick it will affect the person they care for. It’s also beneficial to allow yourself to lessen unrealistic expectations. Try saying—and really believing—“I may not be perfect, but I’m doing the best I can.” Also, join a respite program, hire a caregiver for certain times, or share responsibilities with another family member or friend. Everyone needs time for his or her own needs and interests.

Basso Lipani: Understand that you cannot do it all. Caregivers often believe that if they just try hard enough, they can manage everything themselves. But it’s not true.

Q. What are the things caregivers should always make time for, no matter what?

Dr. Chun: Continue with whatever you enjoyed before you were a caregiver. You may not be able to do it as much, but you can plan favorite activities that help reduce stress.

Basso Lipani: Caregivers should do things that bring them peace and make them smile. I encourage caregivers to note their mood throughout the day. One caregiver told me that museum gift shops often play soothing music, so she’d visit them when things became stressful.

Q. Often, primary caregivers face financial hardship because they can’t work full-time. Any suggestions?

Dr. Chun: There are groups that can help: community organizations, religious groups, government programs, and hospital-based outreach. I recommend planning for the future before there is an urgent situation.

Basso Lipani: Studies show that caregivers spend an average of $2,400 per year on items directly related to providing care. It is important to know what resources exist in your community. Every state has a Department of Aging, and programs exist to assist caregivers in paying for needed supplies.

Q. What are the signs that a caregiver is approaching “burnout”?

Dr. Chun: Some cautionary signs include becoming verbally or physically abusive. Eating too much or too little is a serious stress sign, as are sleeping too much or too little, strong feelings of guilt or depression, or suicidal thoughts.

Basso Lipani: Caregivers approaching burnout will find themselves having difficulty doing things they once did with ease. For some people this may mean having difficulty concentrating or sleeping. They may be more irritable or tearful. Your body and mind are trying to tell you something important about your well-being!

Q. How can a caregiver balance caregiving with obligations to work, family, and community?

Dr. Chun: Caregivers must often adjust their work life: ask for modified schedule, reduce travel, or give up working entirely. Some companies have assistance programs to help workers manage their work and family responsibilities. And sometimes a supervisor is open to considering options that can help an employee get through challenging times.

Basso Lipani: I advise caregivers to identify what’s very important—to them, their family, job, community, and the person they’re caring for. Next, they must decide what’s necessary for them to handle themselves and then get help with the rest.

Q. How can caregivers communicate effectively with their loved one’s healthcare providers?

Dr. Chun: List questions and concerns in writing and bring them up at the start of a medical appointment.

Basso Lipani: Organize important papers and questions before any medical visit. If you can’t attend, ask someone you trust to go in your place, ask your questions, and write down the answers.

Q. How can a primary caregiver get others to help out?

Dr. Chun: Try making a list of all the things that must be done in a day or week and then divide it up among family members and others who are willing to help. Even two hours of “help” can give caregivers time to care for themselves.

Basso Lipani: Decide what you must do and what can be shared. Hold a family meeting to discuss what the person receiving care needs and what you are unable to take on yourself. Be specific: If you want someone else to shop for groceries on certain days—ask for that.

Q. How can caregivers make the most of their time with their ailing loved one—to keep life meaningful even in the face of current and future losses?

Dr. Chun: Remember a person’s entire life and what makes them special. Talking with them and really listening can make a positive difference. One caregiver remembered her mother loved perfume and made sure there was some to spray on daily. Many caregivers turn to music to help their loved ones connect to fond memories.

Basso Lipani: Make your relative or friend’s quality of life a top priority and listen for clues about things that would give them a sense of contentment—eating a certain food or reconnecting with an old friend. Do what you can to make those things happen. Any future loss will be softened by the knowledge that you did all you could.

Q. What steps should caregivers take to prepare for the inevitable—that is, the decline and ultimate death of the person for whom they are caring?

Dr. Chun: Accept that we don’t live forever. I recommended reading The Anatomy of Hope: How People Prevail in the Face of Illness by Dr. Jerome Groopman.

Basso Lipani: There’s a misconception that grieving begins after a person dies. Grieving often begins much earlier; we begin preparing for loss when a person we love has a serious illness or is just gradually slowing down. Reach out to family and friends—don’t let go of your outside life. Nurture relationships with people going through similar experiences.