Caregiver's Guide
The Caregiver - Avoiding Burnout
Providing care for someone with a terminal illness can call on all your resources - mental, physical, emotional and intellectual. Although it may seem that your own needs are trivial compared to your loved one's, you also have to look after yourself - or better yet, allow yourself to be looked after. Your first job is to be the best and strongest resource for your care recipient. Watch yourself for signs of burnout:- Emotional outbursts
- Depression
- Social withdrawal
- Lack of sleep
- Exhaustion
- Anger at your care recipient
- Anxiety about the future
- Inability to concentrate
- Denial about your care recipient's disease
You cannot act in your care recipient's best interests if you are chronically exhausted or depressed. A good caretaker has an obligation to also take care of himself or herself. Here are some tips on taking care of yourself.
Seek Information
Check libraries, bookstores and the Internet for information on caregiving and the disease that your loved one has. Many hospitals and community colleges also offer courses and other resources. Educate yourself about your care recipient's condition and continue to stay informed. Information is empowering. The more you understand, the easier it will be to deal with day-to-day problems.Don't hesitate to ask questions or admit if you don't understand what a health professional is telling you. Write down your questions before any meeting and take notes when meeting with the doctors and nurses.
Avoid Burnout
You cannot do it all, nor should you try to do it all. Recognize what you can and cannot do and set priorities. Ask others - friends, family and neighbors - for help when you need it. Let others help with chores such as house cleaning, running errands, meal preparation or even providing short periods of care while you take a break. Remember that relief for yourself is extremely important to your role as a caregiver. Remember to be patient and take things day by day.Keep Your Life in Balance
Allow yourself some leisure time to read a book, take a nap, visit with a friend or do whatever gives you enjoyment and relieves the pressure of caregiving.
Have a life outside your caregiving duties. Keeping your life in balance with your own friends, interests and activities won't be easy, but it is important, both for you and your care recipient. Attending to your own needs can help bring a sense of renewed strength and commitment to your caregiving role. Don't let your care recipient's illness or disability take center stage all of the time.
Communicate
Don't wait for others to ask if you need help. Ask them first. Turn to family members and friends for emotional support, companionship or occasional caregiving. Being a caregiver can be exhausting.
Accept Help
When people offer to help, accept the offer and suggest specific things that they can do. You don't have to do it all. Being "supercaregiver" brings on the exhaustion, depression and failing health that signal burnout. Let others take over routine tasks to ease the workload. Encourage people to visit and bring news about old friends. Talk about current or world events - anything that will add a new dimension to your daily life.
Use Community Resources
Investigate any community services that may be helpful. Accept opportunities for respite care or the services of a homemaker or an aide.
Maintain Physical Health
Taking care of yourself is an important part of continuing to cope with stress. Maintain a well-balanced diet. Get some physical exercise every day and get enough rest. If necessary, arrange for outside help during the evenings so that you can sleep undisturbed.Try not to rely on coffee, cigarettes, alcohol or overeating as a means of dealing with stress or anxiety. While they can be comforting, these items can cause health problems, anxiety and nervousness especially if you are not eating or sleeping properly. You may have to consciously strive to maintain a healthy and balanced diet, but it is worth it in the long run.
Take a Break Once in a While: If you think you need a break, you probably do. Take it and realize you deserve it. If there is a service that gives temporary care and can periodically substitute for you, use it.
Maintain Mental Health
You've got to take care of yourself emotionally, too, if you want to take care of others and keep going. Some ideas for doing that:Don't Get Depressed by Criticism of Your Efforts
If a relative, friend or other person criticizes your caregiving, listen to their objections, but recognize that they are not the ones providing the care or coping with the stress. If you and the care recipient are comfortable with your efforts, continue to provide that level of care. If possible, explain the circumstances and ask other family members to become involved with the care process.
Understand You May Feel Guilt
Many caregivers are too hard on themselves and feel guilty about not doing more or doing a better job. If you start feeling guilty, remember that you have a hard and demanding job. Be kind to yourself and take credit once in a while. When guilt points its finger, ask if doing more is really necessary or even possible.
Watch yourself for Signs of Depression
- Lack of interest in regular activities
- Thoughts of suicide
- Impaired motor skills (e.g., slow, clumsy or agitated movement)
- Inability to sleep
- Lack of energy/fatigue
- Difficulty thinking clearly/concentrating
- Appetite and weight changes
Know That You Are Not Alone
Realize that you are not the only one going through this. Many people have been caregivers before you and are willing to share their experiences with you.
Share your Problems
Discuss your problems with others. You can learn how others deal with difficulties similar to yours and you may help someone going through the same thing.
Join a Support Group
In addition to acting as a clearinghouse for information about your loved one's condition, support groups offer friendship and a forum where you can express your feelings and frustrations. Everyone needs support and you shouldn't feel it's a sign that you can't manage or that you aren't a good caregiver. Experiences of other show you that other caregivers experience the same sort of problems and challenges. Learning that problems are not exclusive to you reduces the challenge to a manageable size.
Each group has a different focus. Some offer support for managing day-to-day care tasks, others focus on understanding emotional needs. If a group doesn't meet your needs, find another or start your own group.
Laugh
Laugher releases tension, eases pain, improves your breathing, elevates your mood and in general improves your outlook on life. Share a joke or a funny story with your care recipient or a friend or your support group. Watch movies or television programs that make you laugh. Try to find humor in your everyday life.
Taking Care of the Caregiver
What if you are not the primary caregiver, but you know someone who is? Primary caregivers can be under tremendous stress, even if they don't know it. If you know someone in this role don't hesitate to let him/her know you are there to help. You can help in a multitude of ways, both direct or indirect, although sometimes you have to use your imagination because the primary caregiver may not be able to articulate his or her needs or may think there are no needs.Volunteer Your Services
Let him or her know that you are willing to help; don't wait to be asked. Draw up a schedule of times when you will be available or a list of suggestions of things you can do to help. Even simple errands, such as volunteering to pick up a book at the library or drive children to soccer practice can be a huge help.
Respect Their Limitations
Respect any limitations on help the caregiver is comfortable accepting. He or she may not want you to help with housekeeping chores, for instance. Don't push the issue. It isn't personal.
Offer to Stay
Offer to stay with the care recipient so the caregiver can take a break, if you are comfortable doing so. Learn the care recipient's behaviors so you can all feel comfortable if you are left alone together.
Avoid Off-Hand Comments
Remember that the caregiver may be very sensitive to jokes or off-hand comments about the condition, regardless of how kindly meant or lighthearted those comments may be.
Share Information
Feel free to share any information about the disorder that you may come across, but do not try to push any specific treatment or therapy on the care recipient or the caregiver.
Be a Friend
Let the caregiver vent his/her anger or frustration, pour out grief and fears or just talk calmly and rationally about the situation. Don't judge his efforts, criticize the results or try to minimize the situation.
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