Remember the Waltons, from the 1970’s TV show Walton’s Mountain? Four generations were living together in the same home: grandparents, parents, seven children, and eventually the children’s children. The family members operated as a team, full of collective wisdom and insight. When one of them became ill or incapacitated, they all pitched in to provide care. Life was hard, but they were happy, pulled together and grew stronger from the experience.
Of course, that was a television show. Today’s family doesn’t look much like the Walton’s. Today’s caregiver is usually doing it alone, with no help or support from another family member. Many do not live with the person they are trying to care for, do not live close by or even in the same state. To add to the challenge, they are also likely to be working full-time and raising children. It is no wonder caregivers have an increased risk for “burn out,” depression and illness.
Web MD Medical News reported on the findings of a recent national study stating, “The stress of caring for a chronically ill loved one is jeopardizing the health of millions of Americans.” Caregivers often become so overwhelmed they neglect themselves and suffer both physically and mentally. Many forget to eat or have stomach problems that make eating difficult. Misuse of prescription drugs or alcohol is common. Many become physically sick and will put off seeing their own doctors. But most alarming is the rate of depression for caregivers is extremely high. Love is why caregivers risk their own health and wellbeing. Unfortunately, the lack of attention to their own health has lead many to become sicker than the person they are caring for. You cannot care for someone else if you need someone to care for you. Stress will wear you down and it will make you ill. Here are some tips to help protect you from “caregiver burnout”:
Attitude. Stop focusing on the bad and start looking for the good. Bad is always there, but so is good and you will notice it more if you focus on it. A positive attitude is scientifically proven to positively impact both mental and physical health. Dialysis is a treatment that has given your loved one a second chance for life. There are many treatment options available and one can be chosen that fits with your family’s lifestyle.
Remember whose illness this is. A dialysis patient will have their bad days, but for the most part, they can still (and should) be expected to have responsibilities. They can do laundry, wash dishes, make a bed, feed a pet, watch the children or manage the bills. They should also be the ones responsible for taking their medications, getting their full treatment and eating the right foods. Roles may change, but the person with kidney disease can continue to be an active and valuable member of the family.
Ask for help. You need to accept that you cannot do everything for everyone all of the time. Take note of the people in your life. Ask your neighbor to pick up a few things at the store while they’re there. Ask members of your church to help with transportation to dialysis. Ask your friend to pick up the kids from school or your family to keep them for the weekend. Consider hiring a professional to help with some of the care and ask your social worker to help you locate one.
Take care of your mind. Give yourself permission to take a break and get away on a regular basis. For example, make a standing date with your friends, like every Tuesday, to have dinner or go to a movie. (To keep the cost down, make it potluck and a video or DVD.) If being all by yourself sounds better, treat yourself to a manicure, go fishing, or drive to a park or the beach.
Socialization is important. Human beings are social creatures and have a need to feel connected to others. Friends and family are great, but you may want something more, such as a support group. If there isn’t one in your area, consider starting one yourself. You can find many ideas and tips for doing this on-line. Search with the words “starting a support group”. (If you don’t have a computer at home, use the one at the library.) You do not have to be a professional to lead a support group.
Take care of your body. Be sure you are getting enough sleep and exercise. Exercise is an important way to build strength and burn off stress. Exercise should not be a chore! Do an activity you enjoy. If you get your friends involved, you can make it a social occasion, too. If you are having trouble sleeping, regular exercise can help you get a better night’s sleep. You can also try meditation to help relax and calm you before bed. There are CDs available at your local library or bookstore to help you learn meditation.
A healthy diet is also an important part of taking care of yourself. Make sure you eat plenty of fresh fruits, vegetables and protein (including nuts and beans and whole grains). Eating well helps to keep your body strong to fight illness.
Recognize signs of stress. Common signs you are overwhelmed include: too much sleep or trouble sleeping, muscle pain or tension, headaches, stomach or intestinal problems, weight gain or loss, frequent colds or infections, anxiety, depression, lack of concentration, feeling out of control and increased substance abuse. If you are not able to reduce these symptoms alone, seek help. It is not selfish to take care of yourself and it does not mean you care any less for your loved one. In fact, you have a responsibility to make sure you are physically and mentally well so you can continue to give the greatest care to the person you love. Changes do not have to make your life a burden. Recognize that you have the ability to cope with stress in a healthy way so you can more fully enjoy the time you have with your loved one.
• An on-line group for spouses of ESRD patients: http://health.groups.yahoo.com/group/ ESRDspouses/
• Today’s Caregiver Magazine, http://www.caregiver.com/. You can subscribe on line or ask your library to carry it if they aren’t already. The Web site alone has great information.
• Caregiverstress.com http://caregiverstress.com/ is a Web site devoted to this topic and has a stress assessment tool for you to measure your stress level.
1. Ansorge, R. (2007). Caregivers Often Neglect Their Health, WebMD Medical News. Retrieved February 16, 2007, from http://www.webmd.com/content/Article/127/116843.htm
2. Caregiving, MedicineNet, Inc. Retrieved January 25, 2007, from http://www.medicinenet.com/script/main/art.asp?articlekey=47882&;pf=3&page=1
3. Home Instead Senior Care. Retrieved January 25, 2007, from http://caregiverstress.com/
4. New Life, New Hope: A Book for Families & Friends of Renal Patients. (1997). Developed by The Life Options Rehabilitation Advisory Council and The American Association of Kidney Patients.
5. Tackett, Marylynn. Caregiver Stress and Chronic Kidney Disease, DaVita Inc. Retrieved January 25, 2007, from http://www.davita.com/articles/ckd/index.shtml?id=543 This document was created under CMS Contract # 500-03-NW05. The contents of this document do no necessarily reflect CMS policy.
Renée Bova-Collis, MSW, LCSW, is a member of the AAKP Board of Directors. She has 13 years clinical experience as a dialysis social worker and is currently the Patient Services Coordinator for ESRD Network 5.