Keeping the Caregiver Afloat

By Linda Miller Iger, PhD

Originally published in The CFIDS Chronicle, Spring 1995

For some patients with CFIDS, having a person nearby who is emotionally "there" for them may be enough. However, other patients may need more care. Some need physical assistance as well as emotional support. This article is dedicated to everyone who provides care to patients with chronic fatigue and immune dysfunction syndrome (CFIDS).

YOU ARE NOT ALONE. Approximately 13.5 million Americans have limiting handicaps or disabilities. The words "handicapped" or "disabled" are not just for people in wheelchairs, amputees or the blind. A handicap or disability is any condition which makes it difficult to perform a normal everyday activity, from walking up a flight of stairs to preparing a meal. While there has been a lot written about helping patients cope with complicated illnesses, not much attention has been paid to the caregivers.

Taking responsibility or assisting with part or all of the care of an ill or disabled person is a difficult and demanding job. It is common for both the caregiver and the person being cared for to experience some anger and/or resentment because of the changes in the relationship. Sometimes resentment increases proportionately with the level of responsibility and the time commitment required. The demands of caring for another person can negatively affect every aspect of the caregiver's life, from health, to employment, to the relationship with the person with CFIDS (PWC). In the past, human service agencies have normally only addressed problems of persons caring for the elderly, and even then only if there is an indication of abuse or neglect.

How can a caregiver stay afloat?
Airline flight attendants always warn passengers, "in the event of an emergency, an oxygen mask will descend. Place the mask on your face first and then place a mask on your child." The same principle applies to being a caregiver: you cannot take care of someone else if you do not take care of yourself first.

Communication: Communication between patient and caregiver is essential to good caregiving and a healthy relationship. It is important when things are going well, but it is critical when you face major difficulties. You need to tell the person you care for how you feel, what you think and what's going on inside of you. And you need to hear the same from him or her. Communication is the basis for understanding, compassion and creative problem solving.
Become Allies: One of the most important things to keep in mind is that the person with CFIDS (PWC) did not create the difficulties you are both facing. It is essential that throughout the course of this illness, you and the PWC communicate your feelings respectfully and in a frank manner. Both of you have valid feelings and needs. If you see yourself as allies with a common problem, it becomes possible to find ways to creatively solve the difficulties encountered by this illness.

Learn to Ask: Even with a good support system and other friends to talk to, there are times when you, the caregiver, will want and need attention from the PWC you care for. You may want time together, assurance that you are loved or help with some problem of your own. Even though you cannot always get what you want, you increase your odds by asking for it in a clear, nonthreatening way. For instance, you could ask the PWC for an evening, an hour or even 10 minutes. Sometimes the answer will be no. It is likely that most of the time, however, he or she will be able to agree to some minimal togetherness.

Set Limits: If you are committed to giving care to your partner, child, parent or friend, it does not mean that you are required to be available every minute of every day or take care of every need. There are limits to everything and you need to be responsive to your own. If you try to go beyond your capacity, there will probably be a backlash of resentment that undercuts the value of what you are giving. Please remember that each person has different limits. Do not wait until you are over your limit before you speak up. If you do, you are apt to be resentful and it will make communication less effective. Instead, please speak up when you are approaching your limits and get relief. Some areas have volunteer programs provided by local agencies, such as the United Way, that send trained persons to homes to provide care so caregivers can get a break. Many churches and synagogues also have informal programs that can provide help to caregivers.

Get Support: Just as patients need support, you, the caregiver, need support as well. Some of this can come from the patient, but the demands of illness may often be too great to allow him or her to support you. You need someone to listen to your concerns and frustrations. One option is to talk to a counselor. Another option is to find other caregivers or partners of patients. A third option is to seek out friends who are good listeners.

Do Things For Yourself: You need to make and maintain meaningful connections with people outside your relationship with the patient. You need to find fulfilling activities that are your own. Think about things that make you feel good and do them regularly. Schedule fun! Set aside at least a half hour each day to do things that you like--listening to good music, playing handball or racquetball, taking a swim or working out at the gym. You need to do things that make you feel good.

Get Rest: Make sure you are getting enough sleep. Being tired makes any person cranky and irritable and can cause conflicts between the patient and the caregiver that would otherwise be handled well.

Learn to Farm Things Out: Hire out everything you can afford to, including housecleaning, cooking (get take-out foods) and companion care. For instance, many supermarket chains will deliver groceries for a small fee. On Thanksgiving and Christmas, they will prepare an entire feast for you that can simply be picked up and served.

Maintain Friendships: Write a card when you can. Talk to friends and family. Meet valued friends for coffee or lunch. Caregivers have told me that they, too, share the feelings of isolation usually associated with patients with CFIDS.

Do an Attitude Check: Ask: Am I okay? Do I need some more help? Am I being as helpful as I can? Do I resent being asked to do things? Am I subconsciously doing things that hurt this person (i.e., mentioning social invitations when I know he/she can't go)? Do I have a bad attitude? Am I getting mean? Do I envy others who have a "normal" life? If the answer is yes to any of these, please seek professional assistance in the form of counseling or therapy.

Neither a Martyr Nor a Dictator Be: It is easier than you think to fall into either of these extremes, especially if you see yourself only in the service of another. Frustration and isolation can give way to anger and the consequence of anger is often aggression. So please, take care of yourself first. Remember, communicate with the PWC and become allies. Learn to ask for your needs. Do things for yourself. Set limits on what you can do and get relief. Get rest. Learn to farm things out that you cannot do. Maintain friendships. Last, and certainly not least, do an attitude check. And remember, there probably is a special place in heaven for those who give care to others.