Transverse Myelitis Association
Volume 4 Issue 1
March 2001

Page 1
From the Editor
Sandy Siegel

Being a caregiver is one of the most difficult jobs one will ever face during their lifetimes. And it is certainly one of the most complicated. There is no education or training you receive for this job. You learn how to do the job while you are doing the job; much like parenthood. For most parents, however, the job usually gets easier. For most children, they complete their education, they find jobs, they start their own families, and they eventually begin to pay their own insurance premiums. So, the job becomes less demanding, intensive, and energy and time consuming. This is not always the case for a caregiver. Sometimes our loved ones do improve and the job does get easier. And sometimes, our loved ones do not get better, and the job becomes more and more difficult.

It is also not a job people consider applying for; it just happens to us by virtue of life circumstances. Let's see, a job that one does not ask to have and one for which a person receives no education or training. Sounds like a job that would not get done very well. Over the course of my involvement with people who have TM, I have met worldclass caregivers. I have come to know caregivers who perform their jobs with tremendous devotion and intensity, people who relate to their loved ones with great care and nurturing, people who perform their tasks with diligence and competence and people who behave with incredible responsibility and loyalty. The tasks are not easy, and staying with it takes tremendous emotional and physical stamina. And the tasks involved can be really complicated and require great skill and care. Taking care of a loved one who is on a ventilator and taking care of a loved one who requires catheterization throughout the day and night is asking a lot of a person.

Taking care of a person who requires assistance with their day-to-day physical functioning is a difficult job. But the job entails so much more than all of those difficult physical activities. Caregivers are also emotional and spiritual supporters, they are schedulers and chauffeurs, they are therapists (physical and psychological), and they are shoppers and organizers and homemakers. And perhaps one of their most important and difficult jobs, they are gladiators with the medical and insurance and social service bureaucracies.

An interesting and difficult element of the process of being a caregiver is that there are no or only very minor societal resources that are focused on the caregiver. When a person contracts a serious illness, there is a rallying of family and friends to support the patient and the primary caregiver. Families often live all over the country and world and cannot maintain that support for very long; they have their own families to take care of, and their jobs and lives to which they need to return. And it is a very rare friend who can take on the role of a family member and maintain a long-term care relationship. It does happen, but it is not the usual course of events. Caregivers most often find themselves on their own without a great deal of assistance; even from family and friends.

Much the same may be said for the manner in which the medical community deals with the caregiver. When a person becomes ill, attention and energy are focused on the patient; the focus is diagnosis and treatment. There are few resources directed at the caregiver, and yet, the illness that has stricken one's loved one also has the most profound impact on the caregiver. The caregiver most often goes it alone from the perspective of the health care community. Should a person require long-term rehabilitation and therapy, the caregiver is in the process alone for a very long time. And there is nothing easy or convenient about the process.

Every member of society holds many different positions. For instance, I am a father, a husband, a son, a brother, a teacher, an employee for the State of Ohio; a friend, a newsletter editor, a caregiver and many more. Each of these positions has a complex range of behaviors and expectations associated with them. In all societies, cultures ordinarily operate such that the roles and expectations from all of the positions a person holds are consistent with each other; the roles from one position are not in conflict with the roles of the different positions a person possesses. This consistency allows a person to function efficiently and effectively and is really fundamental for a person's emotional and psychological health. When the roles from different positions are in conflict with each other, it causes a person tremendous stress. For instance, when a woman in our society has a full-time job and is also a mother, wife and homemaker, the roles associated with these positions often times are in conflict and a woman can experience considerable stress from the role conflicts. If there are traditional expectations of a woman, and her husband and children do not realign their expectations and share in the behaviors associated with her positions as wife, mother and homemaker in order to account for the demands she has on her at work, she is often going to suffer emotionally and psychologically from this conflict.

Such is the case also for the positions we hold in our lives when the position of caregiver is added to our collection. Many of the conflicts are obvious and are a consequence of the demands of energy and time on the caregiver. For example, being a caregiver can certainly impact one's job; some people have to change employment after becoming a caregiver in order to accommodate the new roles that are required of this new position. Becoming a caregiver may change that person's relationships with other members of their family. For instance, a parent of a child with TM may experience conflicts because the demands of time and attention that are required to care for their child with TM does not allow them to behave in ways they expect of themselves in their relationships with their other children.

Not all of the sources of conflict are so easily identified and some are very difficult to resolve. Some role conflicts are created for the caregiver that result from a change of expectations and behaviors from those that are customary for a particular relationship. It is the normal course of events for a child to become an adult, develop independence and have less and less reliance on a parent. When a parent is a caregiver for an adult child, the roles can become complicated for the individuals involved, because what is customary in this relationship, as defined in American culture, may not transpire. An adult child may be somewhat uncomfortable with remaining dependent on parents at a time in their lives when they should be independent of a parent. And this is particularly the case when the parents have to assist with the most basic physical and personal issues for the adult child.

Likewise, children are raised with complete dependence on their parents. While that dependence diminishes with time, a parent will always feel responsible for a child. When a person becomes a caregiver for a parent, these roles become reversed; the parent who cared for the child now has to be cared for by the child. The relationship may become uncomfortable for the persons involved, because these are not the behaviors we were raised to expect from these relationships.

Becoming a caregiver may cause difficult role conflicts for a husband or wife who become caregivers. Maintaining a long-term relationship is often a balance of reciprocity and mutual support. Couples usually are looking for equality in their relationships. Men and women bring different skills into a relationship, and different strengths and weaknesses, but on balance, we are seeking to be valued and treated equally. When one of the couple becomes a caregiver, the delicate balance may become seriously skewed. Some persons may have a difficult time negotiating their roles as a caregiver with those of a lover.

There is little in life experience, training or education that prepares a person for the issues they have to face as a caregiver. There are quite serious mental gymnastics required of a person to balance and adapt to the different positions they have in their lives, all of which make demands on their time and energy. And they need to develop the ability to negotiate between positions and roles in such a way that stress and conflict do not become a constant background noise in their daily lives.

Being a caregiver for a loved one, be they a child, a parent, a husband, wife or companion/lover, a brother or sister or a close friend is going to change that relationship. A nurse and doctor have a professional relationship with the patient; it is a well-defined relationship and the behaviors and expectations between the professional and the patient are molded by custom, ethics, and the law. This is not at all the case between the caregiver and the person requiring care. The relationship between a husband and a wife is defined by our culture, and we all participate in various forms of that same set of behaviors and expectations. For the relationship between a husband with TM and a wife/caregiver, the roles and expectations are not at all clearly defined by our culture. You are going to be making this up as you go. And some are going to do this creation really well, and some are going to flounder.

I have no brilliant skills or strategies to impart to resolve all of these difficult issues. True to my anthropological profession; we can tell you what's wrong, but we haven't the slightest clue as to what you might do to fix it.

I wrote the following words to Pauline after we lost our 16-year-old dog, who we both loved very much:

The really wonderful thing about life is that there is constant change; it is also a really frightening part of life. Turmoil is a constant. One of the reasons that relationships are so complicated is that people often have difficult times traversing the journey of turmoil; it is done on the inside with the constant battle one has with their own emotions and perceptions of the world. It is a one-person operation. But when you are in a relationship, you become a part of the dynamic that the other person has to relate to and adapt to as a part of their dealing with all of the turmoil. How that process is negotiated and balanced is an important factor in how relationships are maintained or destroyed. You can let each other into the process and grow from it, or you can cut each other out and be pulled apart from it. And with all else in the relationship, you influence each other even in this process. You can allow each other to feel safe to share the turmoil and nurture each other, or you can feel defensive or vulnerable toward the other person and close them out. All very complicated stuff. Being there for each other can make the us stronger.

As I wrote these words to her, my thoughts and feelings went back to the times when Pauline had first contracted TM. Our going through the experience of Pauline's TM has made us stronger.

I wish I had some magic formula to explain why it is that some people can accept the things that happen to them and find a way to be positive about their current life circumstances. It is a blessing that they have that skill and that view of the world and themselves. I just marvel at people such as Helena Lubin and Myk Lazzeri and Cathy Dorocak; it is people such as Helena and Myk and Cathy who have taught me something of the capacity of the human spirit. What they are capable of giving out of love is truly incredible. The TMA has so many caregivers who are giving to a loved one in just this way; you are all my heroes!

The TMA is for people who have TM. The TMA is also for caregivers. You, too, are not alone!

Please take good care of yourselves and each other.

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