The Caregiver "Road Trip"
A road map for caring for someone with a chronic illness
By Lori Flaherty

Very few people would take an extended trip without preparing for the journey. You would pack for the weather, take a road map, and decide how long you would stay. But those who suddenly find themselves caring for a person with chronic fatigue and immune dysfunction syndrome (CFIDS) often find that they are unprepared for the trip.

There is no “right” formula for caring for someone with a chronic illness, but there are some simple truths that caregivers can use to successfully navigate the obstacles they must confront and overcome if they are to successfully make the journey.

Legitimacy
CFIDS is virtually invisible and symptoms wax and wane. This breeds mistrust not only among medical professionals, but also among friends, family, and, sometimes, caregivers. This is one difficult and often unacknowledged part of caring for someone with CFIDS.

Persons with CFIDS (PWCs) don’t always look sick, and caregivers may wonder if they are being manipulated or feel resentful when a PWC appears to be well but can’t play an equal role in maintaining the household. This is a particularly crucial area between partners. The relationship is constantly tested and paranoia, false hopes, and misplaced expectations can grind away at trust.

CFIDS is an enigmatic and complex illness and, unlike most chronic conditions, it is often misdiagnosed or not considered a legitimate disease by some health care practitioners. Thus, caregivers must not only struggle with the emotional, financial, and practical stresses of caring for an ill person, they must also become patient advocates and physician educators.

Lou*, once a senior officer in the armed forces and now the full-time caregiver for his wife, Liz, recognizes how difficult this part of caregiving for a PWC can be. “The medical community labeled Liz a neurotic yuppie. The doctors had no training or education in CFIDS, and I was having a very hard time handling a wife who could do nothing but cry and lie down.”

As a caregiver of a PWC, you may be required to fight with health care insurers, disability insurers, and physicians, so take the time to educate yourself about the illness. Not only will learning everything you can about CFIDS help you to educate others, it will help you to better understand what your loved one is facing.
 
Unpredictability
Because CFIDS symptoms can wax and wane, it’s important that caregivers recognize that making plans will be a difficult and integral part of coping with this disease. When CFIDS symptoms flare up, many PWCs will not be able to participate in planned activities or even get out of bed.

Kate Mason, a software documentation consultant in Plainfield, N.J., and a caregiver to PWC Mary Lee, agrees. “Our lives, like those of anyone facing this illness, are marked by uncertainty. We can’t know when a flare-up will strike. It’s difficult to plan for things because we don’t know if Mary Lee will be well enough.”

Flexibility and good communication are crucial components to minimizing frustration in caregivers, PWCs, and others. As Bettie Rector, a retired educator in Lockhart, Texas, shares about her daughter Linda, who has CFIDS, “Long trips to visit friends and family must be planned and prepared for well in advance, and then they don’t always happen because of a flare-up. People just don’t understand that she is truly unable to do what she would very much like to do.”

CFIDS also involves debilitating cognitive problems, another reason why caregivers must become good communicators. Bettie says that communication was probably the most difficult barrier she had to overcome when she first started caring for daughter Linda. “There are times when CFIDS sufferers can’t think straight,” says Bettie. “Sometimes Linda finds it difficult to express herself. This causes misunderstandings and leads to unnecessary arguments.” 

Kate, too, has had to learn to overcome her frustration with PWC Mary Lee’s communication problems. “Small matters stress Mary Lee out. She recently got angry with me because I wasn’t more helpful about planning dinner for the evening. I get exasperated, but I need to step back and realize that, for her, a flare of frustrated indecision is as much a symptom of the illness as is the muscular pain, insomnia, and unending fatigue.”

Longevity
CFIDS is chronic. It is not going to go away with a bowl of chicken soup and rest. Though this seems a simple concept, it is difficult for many caregivers to face the fact that they must now alter long-term career and financial goals.

Lou says he passed up a promotion and a change of duty assignment while still in the military because he felt it would have compromised his ability to care for Liz and his two children. Lou says, “The family had to come first.”

Not only does caring for someone with a chronic illness require adjusting career and financial goals, it means realizing that many of your hopes and dreams will be unrealized. Kate says that the core pain in her life as a caregiver is feeling helpless and cheated. “This isn’t how my life, or hers, was supposed to be. I’m not supposed to be taking care of an invalid for another 40 years.”

Manie McBride, a PWC from Boston, agrees that lifestyle changes for caregivers are difficult. She says her son, Kyle, has had to make major lifestyle adjustments and wonders how much it has cost him. “Kyle does most of the shopping and outside errands unless I get a ride and feel up to doing things myself. He does most of the bills because it’s often too much for me to deal with. Kyle is 33 years old and I’m sure it is hard on him. Once in a very great while he says something that makes me think it bothers him.”

Accountability
There are few challenges greater than caring for someone else day in and day out, but caretakers must learn to take care of themselves, to grieve for their losses, to acknowledge their own uncertainties, and to allow themselves the time they need to recharge their emotions and energy. They must develop a personal support system, set priorities, and, together with the PWC, learn to adapt to the ups and downs of CFIDS.

Perhaps most important, however, is that caregivers need to recognize that they are not alone: their loved ones are still responsible for their own lives. And PWCs need to realize that chronic illnesses don’t just affect those afflicted with them.

David J. Levy, a well-known speaker and writer on family caregiving, says, “When families are confronted with chronic illness, the disease tends to be the center of the universe, with everything happening in association with the illness. Life can quickly revolve around medicine-taking, doctor appointments, and how the patient feels.”

Consequently, CFIDS becomes a tightrope for both caregivers and PWCs. Caregivers must be careful not to become intimidated and smothered by the illness, but maintain their individuality and outside activities and interests. Care recipients should take care to not unintentionally play their illness for attention or pity. Although PWCs may be ill and have limited mobility, whenever they are able, they should still go to the movies, meet friends for coffee, develop hobbies, etc.

Kate sums it up best: “Each day Mary Lee and I must determine the balance between grief at the illness and the losses it causes, and gratitude for the gifts our lives have given us.”

The major issues of being confronted with chronic illnesses can be resolved, but it takes time, a sincere commitment to making it happen, and a real-world recognition that it might not happen as you planned. As Kate says, “This is not how our lives were supposed to be. Each day, Mary Lee must choose anew how to face CFIDS; each day, I must learn what is needed to support her.”

* Some individuals quoted in this article wished to remain anonymous, so names have been changed.

Lori Flaherty is Publications Editor for The CFIDS Association of America.