1. Choose to take charge of your life. Don’t let your loved one’s illness or Disability always take center stage.
We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, “I choose to take on this caregiving role.” It goes a long way toward eliminating the feeling of being a victim.
2. Remember to be good to yourself. Love, honor and value yourself. You’re doing a very hard job and you deserve some quality time, just for you. Self care isn’t a luxury. It’s a necessity. It is your right as a human being. Step back and recognize just how extraordinary you are! Take time for yourself. All too often, caregivers place their own needs last. Being a caregiver should not mean giving up all activities and relationships with other people. Studies show that sacrificing oneself in the care of another and denying oneself pleasurable activities can lead to emotional exhaustion, Depression and physical illness. Taking breaks from caregiving is essential for both full-time and part-time caregivers. You have a right–and even a responsibility–to take time away from caregiving.
3. Seek, accept, and at times demand help. Don’t ever be ashamed to ask for help. You need to realize that asking for help is important. When people offer assistance, accept it and suggest specific things that they can do. Accept what people can give. Resistance to accepting help is a common cause of stress and depression among caregivers. In our culture, with its emphasis on independence and self-reliance, it’s not easy to request help. Some caregivers see asking for help as a sign of helplessness, inadequacy or failure. Actually, asking for needed help is just the opposite. Reaching out for assistance before you are beyond your limits is an important characteristic of a strong individual. It also helps ensure quality care for your family member. People can best help if they know exactly what your needs are and how they can participate. Be specific and positive. Friends may feel uncomfortable helping with the bathing and dressing needs. (The loved one might feel awkward as well.) But they could help with running errands, shopping for groceries, preparing a meal or providing companionship. When family or friends ask how they can help, make a specific suggestion. Say, for example, “Could you visit with ___ for an hour so I can go to the store?” or, “When you go to the store could you pick up a few things I need?” If family members or friends live too far away to provide physical support, encourage them to call the loved one regularly. That takes some of the pressure off the caregiver to be the primary social outlet. Tasks unrelated to caregiving may be easier for some people. If you can be flexible, ask what would be the best time and task for them. Accomodating others, when you can, helps prevent their feeling stress and increases the chances that they will help out again. Your pastor or a counselor can provide valuable help, emotional and prayerful support from these people is a good source of strength. Delegate as much as you can. We each have strengths. If you’ve been designated as the primary caregiver, that doesn’t sentence you to doing everything by yourself. Recognize that others may want to help. Find a way to spread the load to other family members, friends, or professionals. Compensate for your weaknesses so you can emphasize your strengths. Quality support for someone needing care can come from many directions. That’s something every caregiver needs to know. Don’t hesitate to ask. Nobody wants to see you become run down due to the caregiving role. If you need something, feel free to ask. Trying to do it all will only create another caregiving situation -your own. You won’t be helping anyone if you wear out or get sick. One way or another, help is there. Be sure to ask.
Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations. It’s also important to show appreciation for any help received. Let people know how much their support means to you.
4. Seek support from other caregivers. There is great strength in knowing you are not alone. Many caregivers have found it helpful to share their experiences with other caregivers. Caregivers often mention that other family members who are not the primary caregiver simply do not understand the stress of daily care giving. Other caregivers understand how an off-hand comment given by the patient or other family members can be deeply painful, how draining care giving can be. It is important for caregivers to get respite and the support they need from a network of other caregivers who can empathize and share in experiences. Sharing, even on line with other caregivers helps caregivers cope with the stressful demands on them, enables caregivers to learn alternative care strategies, provides a sense of sharing the burden by expressing their feelings in an open non-judgmental Environment with others who can relate to the experience, provides a new perspective, and can provide a vital support system. Community caregivers are also a source of emotional and caregiver support. It is critically important that caregivers seek out and get the support and respite they need.
5. Stand up and be counted. Stand up for your rights as a caregiver and a citizen. Recognize that caregiving comes on top of being a parent, a child, a spouse. Honor your caregiving role and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.
6. Trust your instincts. Most of the time they’ll lead you in the right direction.
7. Grieve for your losses, allow yourself to feel the way you feel, and then allow yourself to dream new dreams. Almost every caregiver experiences a wide range of emotions, some of which are conflicting, confusing and ambivalent. You may feel love, sadness, frustration, dislike, repugnance, guilt, grief, fear, resentment, helplessness or despair (and that’s all in one day). You may feel angry about the increased dependency of your family member and the many demands on your time, energy and money. You may grieve for the loss of that person as he or she used to be. Feeling unappreciated is sometimes a problem for the caregiver, particularly if the ill or injured person expresses only dissatisfaction or is unable to show appreciation. These feeling are normal. These feelings are neither “good” nor “bad,” nor do they reflect the degree of your caring. Feeling angry does not mean you love that person less. Being a caregiver is the fortitude to go on despite the pain. It is the wellspring of hope we always dip into. It is the power to make a difference. It is the clever way we solve a difficult problem. It is the knowledge that we have been tested by fire, and we have survived. Caregivers are allowed to dream! It’s true! Don’t deprive yourself of your dreams. Dare to dream…it’s normal I assure you!
8. Educate yourself about your loved one’s condition. Information is empowering. Take the time to educate yourself about the medical condition of your loved one. If you understand the nature of the problem you may be better able to deal and assist with it. Read not only publications from a physicians point of view, but nursing journals, articles written by other caregivers, and books relating to the injury or illness.
9. Watch out for signs of depression and or illness, and don’t delay in getting professional help when you need it. If you cannot get a grip on yourself, you must seek out professional help. TRUST ME ON THIS! A doctor, social worker, or a therapist can help you to recognize what you can do to change your situation and help you to adjust to your role so that you can meet the challenges with a clear mind, with strength, confidence and an open heart. It is SO important to promptly get professional help when you need it, including assistance with your own physical and mental health. Experience teaches us that the ability to manage care giving over a sustaied period of time is much more emotionally, psychologically, as well as physically draining than sporadic, short term care giving. Providing care at the expense of your mental and physical health or relationships with other family members does not benefit anyone. Remember your own good health is the very best present you can give your loved one.
10. There’s a difference between caring and doing. Establish Your Limits. You have the right to set limits on what you will or can do. It’s all right to say no. Doing so, however, can be difficult, especially if you must make painful choices. Consider, and be open to technologies and opportunities to promote your loved one’s independence. Find out about programs, services, and new technologies which may help your loved one regain their independence, or improve the quality of their life. Encourage your loved one to do for themselves the things they are able to do. You are not helping or caring for them if you always do these things for them that they are able to do for themselves.