Suggestions To Help Keep Caregivers From Burning Out
The following general guidelines can help keep caregivers from burning out. (Consider asking each of your caregivers to read this article. Alternatively, you can print a copy for each caregiver.)
Try to get information about the patient's disease, situation and treatments. Information will help you feel prepared as a caregiver.
- Consider going with the patient to doctor appointments rather than learning about the medical situation second hand from the patient. If you go, you will also have the opportunity to ask questions and to be the patient advocate.
- If you cannot go to a meeting with the doctor in person, ask the patient to record the appointments. Recorders are not expensive. The patient's cell phone may even be able to record the conversation.
Do not expect to be a perfect caregiver.
- We are all human and have our own needs. Be reasonable in what you expect from yourself.
- Don't be surprised if you feel overwhelmed at times. Living with a life changing health condition can be like a wild roller coaster without visible tracks. If you feel stressed out, don't blame yourself or the patient. Caregiving takes more time and energy than most people realize.
Think about the patient's individual needs and characteristics. We are all different. Perhaps a patient who has been the family leader doesn't know how to ask for help.
If you work, explore benefits at work that will help you get the time you need. For example
- Benefits at work such as flex time, or work-from-home.
- Check to see whether you qualify for time off under the Family and Medical Leave Act and similar state laws.
- Take a look at Amy Goyer's ebook for free at AARP.org/CaregivingBook
Simplify where possible. For example, for yourself and/or the person you are helping, batch cook when possible. Batch cooking lets you freeze individual portions that you can eat when ready.
Keep in mind that caregiving is a process that takes time to learn. Learning the patient's needs and how to fill them while also taking care of your own life takes time. It often also takes trial and error.
Do not try to go it alone. Ask other family members and friends to do their share. If people offer help, take it.
- Ask directly for the help you need. Your needs may not be obvious to other people.
- If people offer help, let them know what would be useful for them to do. Give them practical ideas.
- Consider calling a family conference where you can all discuss your and the patient's needs. It may help to practice what you want to say with a close friend before the meeting.
- You can organize needs and who will take care of them when on the internet through such free websites as www.lotsofhelpinghands.com . Meals can be organized through such websites as MealTrain where the patient's individual food wishes can be noted.
- Sitting in waiting rooms in hospitals can be particularly lonely. If it is for you, ask for someone to accompany you.
- Avoid trying to do things that the patient can for him or herself.
Keep hands-on moments for yourself. A study authored by Michael J. Poulin, Ph.D. suggests that providing help with physical tasks such as feeding or bathing can improve your (the caregiver's) sense of well being. Passive pursuits such as sitting nearby "just in case" is more draining. When people offer to give you a break, consider asking them to take care of your loved one when he or she is resting or asleep.
Keep the lines of communication open between yourself and the patient.
- Communicate as openly as possible.
- Communication is essential for you to know the patient's needs, and his or her reaction to what you are doing or not doing.
- It is also important for the patient to know what you are feeling. Expressing your thoughts can bring a new intimacy to the relationship.
- When you want to talk, it is better to start by saying "I'd like to talk" instead of the anxiety provoking phrase: "We need to talk."
Take care of your physical and emotional needs
- If you aren't well physically and emotionally, you will have difficulty taking care of someone else. As flight attendants generally say: "Put on your own oxygen mask before assisting others."
- Studies show that many caregivers do not take care of themselves or put off getting needed health care.
- Studies also show that caregivers are more likely than the general population to feel depressed, with higher levels of stress and frustration. For the signs of depression, and what to do about it if it occurs, click here. For tips for dealing with stress, click here, for dealing with anxiety, click here.
- Don't let being a caregiver take over your entire life. Work toward a balance between relaxation, recreation, time for yourself and doing the things you need to do.
- If you think of caregiving as a marathon instead of a sprint, you'll recognize the need to pace yourself and to get or keep yourself in the best physical and mental shape you can. Exercise, Eat right. Get rest.
- Stockpile healthy snacks
- Consider meditating every day. (It's easy to learn how. For information, click here.)
- Keep in mind whatever got you through the tough times before. Use those techniques now.
Release your emotions. A caregiver who is highly distressed has a negative effect on the well-being of the patient, as well as yourself.
- An easy way to relieve distress is to share your emotions.
- Before sharing your emotions with the patient, ask the patient for permission.
- Share your emotions with other people as well. Even talking with a stranger who is a good listener can be helpful.
- Consider getting things out of your system by writing, or creating art. You don't have to be an artist. The form of the art doesn't matter.
- For tips about dealing with depression, anxiety or emotional distress, see the documents in "To Learn More." (The information applies to both caregivers and patients).
- If necessary, professional help is available.
Get support for yourself
- You are not alone.
- One way to get support is to make contact with another caregiver
- Contact with another caregiver provides another means of releasing emotions. Other caregivers going through a similar situation understand your situation better than most people.
- You can find other people in a similar situation through the nonprofit organization that relates to your specific disease, or through caregiver web sites such as www.StrengthForCaring.com . Caregiver Community Action Network is a dedicated group of over 100 volunteers in more than 40 states who provide education and support to family caregivers.
- You can also find other caregivers through support groups. See the next paragraph.
- Consider joining a support group of caregivers. The contact can be formally through a support group or a self help group, informally one-on-one, or both.
- Support groups are an easy place to find emotional support - plus they are a great source of practical information for both the caregiver and patient.
- In addition to face-to-face caregiver support groups, there are also caregiver support groups that meet via telephone or the internet.
- Many support groups for patients also accept caregivers.
- To find support groups for caregivers or to make contact with a similarly situated caregiver, see:
- The documents in "To Learn More" describe the many advantages of joining a support group.If you try one and don't like it, you can always stop going.
Take a break. Even the strongest caregivers need an occasional break.
- Schedule regular breaks if you can - daily if possible. Even a slow walk around the block where you can change your focus can be a break.
- The patient's insurance may cover the cost of someone to help while you take a break. Insurance companies refer to the break as "respite care."
Keep up relationships with family and friends
- If you don't keep up relationships, you, the caregiver, will become isolated and more likely to burn out.
- Stay interested in what is happening in your friends' lives and what is happening to them. It may take concentrated effort, especially to sympathize with problems they are having which seem petty to you compared to a potentially life and death situation and difficulty dealing with a health condition or side effects or financial problems caused by medical expense. Keep in mind that their problems are just as real to them.
- Don't be surprised if people only ask how the patient is and forget to ask about you. It doesn't mean that they don't care about you. It is likely instead that they think you are okay. They won't know any different unless you tell them.
Take particular care at holiday time.
- Holidays can feel like a seasonal crisis on top of a physical crisis.
- Think about ways to keep the patient involved in the holidays.
- Be flexible and creative.
- Keep it simple.
- Ask for help if needed.
- Hold on to your sense of humor
- In case it helps, click here for information that helps patients avoid depression during the holidays.
- Think about what is most important to the patient. For example: a food, a particular color, a candle, a picture, seeing a person who is not nearby. Keep in mind that you can use technology. For instance, with Skype the patient can see and hear someone who is far away (or across town.) What action would be best to get a feeling across?
Consider the following caregiving stress busters compiled by Candy Sagon and reported in AARP The Magazine:
- Make the freezer your friend. Batch cooking lets you freeze individual portions that you can eat without work. Batch cooking is particularly helpful with hearty, all-in-one meals such as a soup with meat, or beans and vegetables.
- Meditate every day. UCLA researchers reported that 12 minutes of daily meditation can dramatically improve a caregiver's mental health. To learn about meditation, click here.
- Stockpile healthy shacks that you can grab on the run.
- Slow down and don't rush. "When you're stressed and distracted, you're more prone to having accidents."
- Volunteer. It seems counterintuitive, but helping in a different setting can be very gratifying. To learn more, click here.
- Improve your sleep habits. To learn about good sleep habits, click here.
NOTE: You may be able to be paid for your caregiving time if you qualify under In-Home Supportive Services (IHSS), a federal, state and local program. To learn more, contact the Eldercare Locator at www.eldercare.gov/Eldercare.NET/Public/Index.aspx or call 800.677.1116
For additional tips for caregivers, see
- National Family Caregivers Association provides education and support for caregivers. See: www.thefamilycaregiver.org or call 800.896.3650
- The Well Spouse Foundation provides support to wives, husbands and partners of people with a serious health condition. See www.wellspouse.org or call 800.838.0879
- "Frequently Asked Questions - Friends and Families " from the Colon Cancer Alliance. The information applies to all diseases.
- 10 Steps To Getting Started As A Caregiver - from Strength for Caring
- 10 Tips For Caregivers, from The Family Caregiver.
- The Three Stages of Caregiving , from Strength For Caregiving.
Consider books that may help. For example:
- Self-Care for Caregivers: A Twelve Step Approach by Pat Samples, Diane Larsen, Marvin Larsen (Hazelden Publishing 2000)
- Caregiving: A Step-By-Step Resource For Caring For The Person With Cancer At Home, by Peter S. Houts and Julia A. Bucher (American Cancer Society, 2000).
Consider contacting an association that assists caregivers. The following non-profit organizations assist caregivers:
- National Alliance for Caregiving offers reports on caregiving and caregiving products. They have a "Tips for Caregivers" section on their Web site and a very useful tool for searching for caregiving resources like books, videos, and other multimedia.
- National Family Caregivers Association is an organization for family caregivers that provides advisory services, prescription drug discounts, as well as newsletters and up-to-date caregiving information. Tel.: 800.896.3650
- National Organization for Empowering Caregivers is an organization for family caregivers, especially caregivers of the elderly. The group offers online and in person support groups, referrals for counseling and respite care, lectures, programs and seminars, as well as monthly publications. Tel.: 212.807.1204
- Well Spouse Foundation is a national group for husbands, wives, and partners of chronically ill patients. They host discussion groups, publish newsletters and organize conferences, lectures, and outings for caregivers across the U.S. and Canada. Tel.: 800. 838.0879
- There may also be help available for caregivers from disease specific non-profit organizations.
- A clearinghouse for information is one of the state's 59 Area Agencies on Aging or Offices for the Aging. These groups provide information about case management, free legal services for eligible older adults, home-delivered prepared food, assistance with health insurance questions and transportation. Services are either free or based on a client's ability to pay. To find the local Area Agency on Aging, click here . To find your state Office for the Aging, click here .
If the above tips don't work, and you need help:
Get it. If you cannot afford help from a mental health professional, you can probably get it from your religious organization or a local non-profit organization that specializes in the patient's disease.