“I have always been a crusader of causes. This time, the cause found me,” one of the treasured quotes from the late Christopher Reeve (1995), the “Superman” loved by children and adult alike all over the world. The great American actor who, in May 1994 fell from a horse and sustained a spinal cord injury that paralyzed his body from the neck down. The following years after the accident, though difficult as it may for his family, he and wife Dana, however, found a new life helping other people face the harsh realities of paralysis and lifetime disabilities like his. This is the cause he was talking about.
Lifetime disability like what Reeves endured is not a simple problem that most people could overcome. Paralysis, especially caused by spinal cord injury, is a complicated physical state. It does not only affect the individual’s life, but also that of his family, friends and close companies. The person who suffers from paralysis and lifetime disability also faces mental, social and political problems that are oftentimes transcending his family.
It is therefore interesting to look into the life of Christopher Reeve and just for a while, play a role of an outsider looking closer to his family – learning their issues, involving with their concerns and trying to help them deal with their predicament.
Caring for a person with lifetime disability is a difficult task. This is even more difficult for a family member who takes the role as a caregiver like in the case of Reeve’s wife for example, Dana. The most basic thing that his family must do is to accept his condition. In most cases where a family member meets an accident and eventually leads an atypical life physically, the whole family suffers shock, disbelief and denial. Acceptance is important because if the family is in denial, they would not have the emotional strength to help their family-patient in dealing with his own condition.
Attending to the basic needs of the patient like eating, bathing, dressing, sleeping and other simple activities follow as soon as the person with disability stays at home after surgery or major medical operation. It is important for the family to learn and familiarize the family-patient’s condition and ailment, even though the patient would have his own private nurse. Being an incidental caregiver, the family should ask all details of the ailment or disability for the doctor to determine what should be done when the patient goes home. It would greatly help the patient if all the family members within the household, except of course the children who cannot attend to him, would study caregiving methods just in case a private nurse is not around.
But the basic caregiving methods needed to be learned for the patient’s daily needs are only a tip of the iceberg. The more important thing that the family should overcome is the emotional and over-all impact of a lifetime disability of a family member, especially to a breadwinner or the head of the family.
According to the Caregiver Guide posted on http://www.nia.nih.gov, one of the biggest struggles caregivers face is dealing with the difficult behaviors of the person they are caring for. Many caregivers have found it helpful to use strategies for dealing with difficult behaviors and stressful situations.
Meanwhile, the struggles faced by caregivers or nurses over their relationship with the patient are also part of a larger study sometimes called clinical nursing. It lies somewhere on the continuum between behavior social science research and medical research. At the same time, it also overlaps both. The nurse or the caregiver, Treece and Treece Jr. (1977) say comes in contact with the patient during the times of health and death, so his role and how he interacts or live with his patient is very important as he goes through the entire process of human relationships, social settings and physiological situations. They state that: “Social and behavioral research is concerned with personality and interaction of individuals and groups, whereas medicine is involved with organic, physiological and biological relationships to disease and bodily function. The nurse comes in contact with the patient from times of health and death. This period allows the nurse to run the entire gamut of human relationships, social settings, and physiological situations. (Treece and Treece Jr., 1977: 25)
In caring for a family-member with lifetime disability, the nurse or caregiver must understand the crucial role he is performing all throughout the process of medication. Like in the case of Reeves, the family surely undergone emotional crisis after the accident considering that he is a known personality and active showbiz person. A person so popular because of his Superman series. So, it is not that easy for his family to readily accept their situation. The emotions are so high and the family faces a crisis that threatens to break its foundation.
Sandra Carter, Chandler, who wrote “Crisis Theory and Intervention” in a book edited by Johnson, Barbara Schoen (ed) Psychiatric-Mental Health Nursing: Adaptation and Growth. (1989), teaches us that: “Crisis means a turning point, whether in disease or another condition.” (Chandler 1989: 642). Chandler (1989) says two symbols in the Chinese language communicate crisis – they are “danger” and “opportunity”. “According to crisis theory, an individual strives to maintain a constant state of emotional equilibrium. If he is confronted with an overwhelming threat and is unable to cope, crisis ensures.” (Chandler 1989: 643)
Chandler explains the state of crisis, which most of the persons with lifetime disability undergoes as well their families, the Reeves family included. The First phase of the crisis is the anxiety in response of a traumatic event. The second phase is increased anxiety and if it continues to rise, the patient would need help. According to Chandler (1989), an individual experiencing an active crisis shows certain typical behavior. He has a short attention span, reflects and tries to find reasons for his traumatic experience, what could have caused it and how he could have avoided it. This reflection is accompanied by anguish, apprehension and distress (Chandler 1989).
When in this, state, it is possible that the patient gets more anxious and sometimes thinks he is being crazy. And to cope with this, the nurse or caregiver or the family member for that matter must know how to deal with the crisis by understanding crisis intervention. Chandler (1989) says, “the goal of crisis intervention is to assist the person in distress to resolve his immediate problem and regain his emotional equilibrium.” She adds that: “The role of the intervener is one of active participation with the individual in solving his present problem…. Crisis intervention is a partnership. The underlying philosophy of crisis intervention is that, with varying degrees of assistance, people can help themselves….The intervener helps the person in crisis analyze the stressful event…” (Chandler 1989: 645)
And part of the process of intervention is interaction and communication. The Reeves family and others who suffer from such crisis should learn and study how to communicate with the patient to maximize his chances of being cured.
Nursing experts Fuerst, Wolff and Weitzel (1974) say that the main purpose of communication among health practitioners is “to exchange information that will serve to promote coordination and continuity of patient care, resulting in the harmonious blending of whatever services the patient requires.” (Fuerst, Wolff and Weitzel 1974 : 93)
Communication is also a tool by which a caregiver or a nurse learns to know his patient, his needs and how to meet them. The need of the caregiver to communicate with his patient must be continuous because this is the only way that a healthy relationship between them is insured. Without communication, the caregiver will find difficulty meeting a common goal of treating the patient’s illness.
Communication can come in two forms. Verbal and non-verbal. According to Fuerst, Wolff and Weitzel (1974), non-verbal communication is more expressive. It can convey a specific quality and intent of attitudes and feelings than verbal communication. And touch is one of the most powerful non-verbal communication. They also discuss the importance of learning pain and how the patient can communicate his feelings towards pain. For a family who becomes a lifetime caregiver, the better understanding of the patient’s condition and his feelings could contribute to a more effective way of caring or nursing. Fuerst, Wolff and Weitzel add: “Pain is a subjective and a personal experience, more often unpleasant, but occasionally giving rise to ultimate pleasure for some persons, that is influenced by physiological, social and cultural factors.” (Fuerst, Wolff and Weitzel 1974: 307)
The authors explain that one human being cannot accurately assess the type and intensity of pain that another person is feeling. The nurse or caregiver can only observe and assess the intensity of pain based on the patient’s behavior, either verbal or non-verbal.
Studies showed that helping the patients understand pain gives them comfort. The initiation of discussion between nurse and patient in relation to pain provides relief to the patient, Feurst, Wolff and Weitzel (1974) say. The well-informed patient has a higher chance to cope with pain. The more the patient understands pain and the cause of it, the better he could cope with it.
Such bonding between the patient and the caregiver or nurse is a healing process that is often called therapeutic relationship. For lifetime disabilities and paralysis, the patient must develop such relationship with his nurse or caregiver so both of them could overcome stress, depression and hopelessness that could sometimes occur due to their daily routine.
One expert, Patriciann Furnari Brady (1989) explained that therapeutic relationship is one in which the nurse and the client work together toward one goal of assisting the client meet his needs and facilitate development. “The interaction is purposefully established, maintained and carried out with an anticipated outcome of assisting the client obtain new coping and adaptation skills.” (Brady 1989: 57)
The nurse-client relationship, Brady adds, is helpful because most often than not, patients who interact with their caregiver have better chances of being comforted and relieved as result of the therapeutic interaction. Therapeutic relationship also builds trust and confidence between the patient and the caregiver. The client is likewise helped to verbalize thoughts and feelings. (Brady 1989).
Aside from the therapeutic relationship, the family of the person with lifetime disability should also seek own therapy in order to maintain normalcy and prevent problems and stress caused by the changes in their family routine and lifestyle. Christina R. Hogarth (1989), go through the process of explanation on the symptoms of family problems. One of these symptoms is the issue of boundaries, especially between the person with lifetime disability and the family members.
According to Hogarth, “Boundaries are limits, or imaginary lines drawn to define the limits, beyond which one should not intrude. Boundaries pertain to the system as a whole, as well as to subsystems within it.” (Hogarth 1989:226) Boundaries and its accompanying problems can also exist due to outside forces. Hogarth say: “Concrete examples of boundaries are the use, or non-use, of bedroom doors. Boundaries exist between individuals, between subsystems, and between the family system and the environment. The family’s values, styles, and self-worth determine the permeability of the boundary to outside influences, such as the media, friends, school, church and so forth.” (Hogarth 1989:226)
On family therapy, Hogarth (1989) suggests that the nurse or caregiver may refer the family for family-therapy if problem-solving and education approaches fails to resolve the family problems. Troubled families needs family therapists for the resolution of their problems. Private practitioners are usually available.
Brown say that the caregiver or nurse should know his comfort level. The family member designated to look over the patient must determine whether or not he can provide care for the patient and develop a routine that will help him adapt to the situation. It is also important to continue regular breaks. Despite the routine and huge responsibility of caring for a family-member with lifetime disability, it is advisable to try to take a break and keep up with his interests. By doing this, one can get a healthier perspective of the world.
Brown says the caregiver should also try to do his hobbies. He must not let care giving wear him up because if he gets burned out, his family-patient will also be affected.
Another important tip for the Reeves family and others is to maintain a support system. Seek counseling from a therapist. Care giving can sometimes cause depression, especially if the patient has lifetime disability. It is therefore advisable for the one taking care of him to avoid depression and seek professional help at all times, if needed.
Also, continue to learn about the family-patient’s sickness or condition. The more one know about his disease or ailment, the more he would understand him and know exactly what to do. Learning more about the family-patients condition also helps family members as caregivers accept the reality of the situation. And by knowing the degree of the family-patient’s illness, one is being prepared of the various possibilities that could happen.
Brown says it is also wise to keep a journal and chronicle of the care recipient’s activities, symptoms, concerns, complaints, habits or anything that he does that would help the nurse or caregiver understand him better in the future. Journals can also be used by his doctor or medical specialist should he need to clarify findings or diagnosis that would have to be supported by behavioral symptoms.
A family caregiver is even a complicated experience and condition because the craegiver is not being paid for what he does. He cares for the family-patient because he is needed you. This is about love, family values and orientation. How much dedication one put into caregiving tasks depends on his emotional investment with the person. Like how much one loves the patient and how much does he care about him. Brown also says that when one is confronted with the reality that you patient is on his final stage in life, he should allow himself to mourn and grieve. Also, Brown says the caregiver should remember to carry the recipient’s memories with him. He should be brave enough to share his memories. Think of his best stories and laughter that gave everyone comfort in the past. And also, Brown suggests to find comfort in knowing that the caregiver did the best for his patient.
In closing, it is however interesting that in reality, the Reeves family almost achieved all of these strategies and tips. Because Reeves himself and his wife Dana have even surpassed what is expected of them. After his accident, the family were able to overcome the crisis and even made everything possible to help others in the same situation. They founded the Christopher Reeve Foundation. It is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
The foundation has research programs that include studies on the spinal cord injury, which is one of the most complex traumas of the body. According to the CRF, it is a condition that affects Americans every 49 minutes. CRF’s research philosophy is bold, innovative and strategic. CRF works closely with the American Paralysis Association, finding ways how to cure spinal cord injury and how to help patients cope with the disability. CRF’s research programs include: Individual Grants Program, International Research Consortium on Spinal Cord Injury, North American Clinical Trials Network, and NeuroRecovery Network.
At the same time, Dana Reeves also launched the Quality of Life Grants Program, a program that aims to meet the needs of people living with paralysis. It covers grants and assistance for employment, education, counseling, children, assistive technology, arts, advocacy, accessibility, therapeutic riding, sports and recreation, practical services and health promotions.
Dana Reeves (1995) recalls her husband as a person who fought for what he believed and a person with a big heart. Dana said: “So what do we do now? I look to Chris. When he was faced with grief and loss and feelings of injustice, what did he do? He made a decision to carry on, to fight for his beliefs, to do for others what he couldn’t do for himself. He reached into the enormous and beautiful and generous heart of his and he gave us his life. We can at the very least try to do the same. We owe him that much.” (Dana Reeve, Page 2).
