My father [a physician] told me of a careful observer, who certainly had heart disease . . . and who positively stated that his pulse was habitually irregular to an extreme degree; yet to his great disappointment it invariably became regular as soon as my father entered the room. (Charles Darwin, 1872)
For most, it is a comfort to have family or friends nearby. But few find it easy for others to be too much in charge. Generally, we wish for freedom to live life without interference.
Serious illness challenges this preference. It can force you to rely on others for things that you might otherwise do for yourself. Illness can draw family and friends together. But it also holds potential for discord between you and those providing help. This chapter will discuss how transplant candidates and recipients may best negotiate help from others. It also provides some guidelines for the complex tasks that face support people.
We should point out that we hold two assumptions in this chapter. The first is that transplant patients do best when they remain as independent as is safe and comfortable for them. Secondly, the ideal supportive relationship enhances a transplant patient's dignity as well as their health. A satisfying and supportive relationship will most likely occur when open discussion occurs around these two assumptions.
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From what we have seen, illness and transplantation bring people together in ways that might not otherwise occur. Relatives, friends or work acquaintances will offer you help. You may find that you spend more time, or live in closer quarters with certain people. Or you may find that you must accept help from someone you don't know or even like well.
Circumstances such as these can try your patience and strain your relationship with the very people who are there to help you. Problems in communication arise frequently. A list of the most common ways that transplant patients and their support people set themselves up for disagreement is in Table 7.1.
Look over the items in this list. It is the rare person who does not recognize some of these patterns from their own relations with others. There is nothing about this list that is specific to transplantation. It just describes the common communication problems that can occur between any two people.
The two examples of Sheila and Ellen suggest some useful guidelines that may help transplant patients and their support people minimize conflict. Know what the transplant team expects of you as a candidate, recipient or support person. This will help you to work out an agreement with each other. If any problems arise, try to talk openly. Or you might ask the transplant coordinator for suggestions. Sometimes, you have no choice but to set limits on the aid that others offer.
There are almost as many different ways to face illness, as there are people. It is helpful to have some awareness of your approach. This will help you understand why you are more comfortable around some people than others. Depending on how their way of dealing with illness fits with yours, you will be more or less at ease with them.
Geoff: What Geoff wanted most was to put distance between himself and transplant. After years of living with a slowly progressive disease, a liver transplant had provided him the chance to recover his life. He attended the team's follow-up clinic each month. But besides this and taking the anti-rejection drugs, Geoff preferred not to dwell on what was past.
His sister had helped him throughout illness and transplant. But Geoff commented that "She does not seem to realize that I want to get on with a normal life. She calls me several times a week to ask how I am feeling. I keep telling her that I am fine. But it is like she is waiting for something to happen, waiting for me to get sick again. I know that I have no guarantees about tomorrow. I do not need to be reminded of it every day."
We could not count the number of times we have heard this type of comment. "I do not wish to dwell on what happened. But everybody keeps asking me about it. . . All I want is to get on with my life. Why are others so fascinated by what I have been through? . . . I avoid my brother whenever possible. His comments remind me always that I could get sick again any time."
People facing serious illness divide themselves into two broad groups. Nobody likes to dwell constantly on health-related worries and concerns. But some find it easier than others to focus their minds on other topics do. It comes naturally to some to not worry. These people may not wish you to remind them of potential concerns. For others, thoughts of illness and transplant are never far from their mind. When these two groups interact, neither is entirely at ease. Irritations can arise from these different styles of dealing with illness.
Two other topics stand out as common sources of disagreement. Different people have vastly different interests in how much they want to know about illness. Also, people commonly disagree about how necessary it is to talk with others about personal issues.
Because of the obvious challenge to the transplant candidate or recipient, people sometimes forget how hard it can be for support people. Many examples in this chapter suggest that it is not a simple role. There is no doubt that it is painful to watch a family member, friend or anyone else suffer with an illness and work through transplantation. Nobody would choose to be in either position.
There are two types of support. These are practical and emotional. Examples of practical support include driving someone to a doctor's appointment or looking after a child while a parent is in hospital. Emotional support is less specific. It refers to being there for the person. This includes talking with them as they wish. Or likely more to the point, it involves listening when they wish to talk.
We have asked different candidates and recipients to tell us how their family and friends help. Some of course, told us of how others helped them out with grocery shopping, or travel, or helped them financially. But many couldn't give us any specific examples. It was just important to them that family and friends were close by and cared for their welfare. Unfortunately, as we have pointed out several times in this chapter, it is impossible to know the best approach at all times. Anyone can err on the side of being an overly intrusive or preoccupied sometimes.
Tia: Tia knew that her husband irritated the transplant team. He was having a terrible time while she was in hospital. He worked as a pharmacist during the day and looked after the house and kids when he came home. They had talked of getting help in the household. But he wanted to do it all himself. Tia knew that Carl was pushing himself too hard.
Unfortunately, Carl also tried to look after everything when he visited her at the hospital. He wanted to know all that had happened that day, what drugs had been given, when and by whom. Carl read up on all of the drugs that she was receiving. He constantly checked the amount that was given. He questioned whatever was done. The doctors had become tired of answering the same questions repeatedly. The nursing staff was clearly nervous about caring for Tia while Carl was in the room. It was as if they expected him to explode if they did any small thing wrong.
One day, a social worker with the transplant team came into her room. He said that the chief surgeon had asked him to see if there was something that could be done to help with a situation that was making everybody tense. The social worker recognized the problem right away. He explained that keeping very active was a way that some people responded to the stress of illness. It was a way of feeling in control and warding off fears and worries. The mistaken assumption is that if you could keep busy enough, the pain would not catch up with you.
He wanted to speak with Carl. He thought that Carl could be convinced of having some help in the home. Hopefully, Carl would also talk about his concerns for his wife and family. He was obviously in need of some time out to look after himself. Likely, he would then be in a much better frame of mind to be supportive of his wife. Without some change, Carl risked burning himself out and alienating those around him.
With all the emphasis on helping the transplant candidate or recipient, the well-being of the support person can sometimes be forgotten. This role can take a toll on the strongest of support people. Keep in mind that you must look after your own well-being if you hope to remain in a position to be of assistance to another.
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Do all transplant programs expect candidates to have an identified support person?
