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Families Coping with Hospital Life

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Preface

The diagnosis of a blood disorder, whether aplastic anemia, leukemia or another illness, is as traumatic to the family as it is to the patient. Most of us, before our loved ones became ill, had never been in a hospital environment, much less in a hi-tech intensive care ward such as a bone marrow transplant unit.

Aplastic anemia patients are frequently admitted to a transplant unit, even when no transplant is considered, because the necessary medical expertise and facilities are available there. Some of you, especially those with leukemia patients, may have already been in a hospital setting. The bone marrow transplant unit, however, will be a more intensified experience.

This publication was designed to help parents and other family members understand and adjust to the frightening, and sometimes sudden, change from a normal family life to one in the transplant unit. We, as parents in the Aplastic Anemia Foundation of America, would like to share with you our knowledge and experiences in dealing with our loved ones' hospitalizations.

What you will be reading may seem overwhelming and impossible to assimilate all at once. At first you may not be able to identify with some of the information. Therefore, we suggest this booklet be considered a guideline for coping with situations if and when they arise during your hospital stay. We hope its use will make a stressful time a little easier for the entire family.

Hospital Life

It has probably been a few days or weeks since your loved one was first diagnosed, especially if he is a patient with aplastic anemia. For many leukemia patients, a bone marrow transplant may be a last chance for recovery. Many patients exhibit few "sick" symptoms. This makes the reality harder to accept. You want so much to wake up from what seems to be a very bad nightmare.
Doctors and nurses have been taking histories and asking endless questions about your life style and environment. The information being presented to you is overwhelming. You probably feel disorganized, which makes the hospital environment seem noisy and frightening. It is sometimes hard to admit how fearful you really are. You want desperately to control the situation and feel helpless because you cannot. As with any new situation, it takes time to adjust. The doctors, nurses and other hospital personnel are stranger now, but they will seem almost like family in no time at all.

People react differently to crises. Your life has been acutely disrupted. There is, for most, a period of shock and disbelief. Feelings of guilt, sorrow, anger and fear of the future are common. A painful emptiness, coupled with exhaustion, makes the days seem endless. You want to care for and protect your loved one, yet you must surrender his care to the hospital staff. You may have the urge to mentally deny the seriousness of the disease, but you must learn to cope with the reality of the situation - for the patient's sake as well as your own.

The hospital, with its own unique life, will seem foreign at first. It is a 24-hour environment with endless noises and unusual sights and smells. It will become "home" very quickly.

Hospitalization can often occur so suddenly that there is little time for the patient and his family to mentally prepare themselves. If the patient is your child, you might feel great pain in not being able to protect him from the discomfort of some tests and procedures. It is hard for parents to willingly let people hurt their child. If he is old enough, you may be able to explain why procedures are done and how they will help him recover. Often a doll or stuffed animal can be used to familiarize him with the procedures he will have to undergo. He can pretend to draw blood, change dressings and even do bone marrow aspirates.

Most procedures are noninvasive and therefore painless. A few, however, do involve some pain. Keep your credibility with the patient by not allowing anyone to tell him a test will not hurt if it may. Medication is generally given before the most painful procedures.

You do not have to be present during these tests. Sometimes hospital policy dictates that you not be there. In either event, leave and come back in immediately after the procedure to reassure the patient. Strength is required, since seeing a parent become visibly upset can be more frightening to the child than the test itself.

Depending upon the type of treatment the patient receives, various changes in his appearance might at first upset you. Most patients have a Hickman catheter surgically placed in the chest soon after arrival. Having your loved one "wired up" takes some getting used to, but the benefits far outweigh the inconveniences. Most children and adults love it because it eliminates the need for needle stocks every time blood has to be drawn or medications given.

The loss of hair from chemotherapy or radiation can be hard to accept as well. It is visible proof that your loved one, who might otherwise look well, is really very ill. But try to look at the positive side: A bald head is easy to wash, it is the normal look on the floor, and the hair will grow back.

The rules for protective isolation vary from hospital to hospital. Its purpose is to provide a cleaner atmosphere in the patient's room while his blood counts are down. Whatever procedure is utilized may seem awkward and uncomfortable at first, but will soon become second nature.

If the hospital stay turns out to be a long one, the patient may become depressed and/or rebellious. Accept this attitude as normal and work to overcome it. Look for positives, find something to laugh about, enlist the help of a family member or a friend whom the patient particularly likes.

Standards of expected behavior vary from family to family. However, especially with young children, your standards of home behavior should be carried out as much as possible in the hospital. Because this is a group setting, consideration for others is even more important here than it is at home. Children generally appreciate this continuity of expectations and limits.

With adolescents you may have to deal with the problem of anger. Although all patients and family members feel anger to some degree, that feeling is often intensified in the teenager. Adolescence is normally a time of separation from family and increased reliance on oneself and one's peer group. When illness strikes during this time, the teenager, instead of becoming more independent, is forced to remain reliant on his family and the medical staff. Anger at this dependency is often directed at the patient's family and can be difficult to overcome. Try to remember the reason your child is releasing his anger at you: He trusts you and knows that you will love him no matter what he does. He is not quite so sure the hospital staff will forgive his behavior. Mentally, your loved one will be healthier if he can express his anger.

Thus, the patient - whether a young child, an adolescent or an adult - may sometimes rebel because he feels he has lost all control of his life. You can help counteract this feeling by finding decisions he can make. For example, the patient may have no choice about bathing or exercising - but he can decide when to do it. You and your loved one should discuss this with the hospital personnel to establish areas where he can be in control.

If you are rooming in with your child, there is a loss of privacy. Since hospital personnel must enter the room frequently as part of their duties, every aspect of your routine is observed 24 hours a day. Go out occasionally by yourself. Get away from the pressures of the hospital. If you want, ask a friend to stay with your child. Most hospitals have child life teachers who will sometimes sit for short periods of time during the day. You may feel guilty about leaving, but unless you can relax and see the outside world periodically, you will find it harder to cope as the days go by. It is healthy for you, and for your child, to separate once in a while. Shopping, physical exercise, visiting friends, going out to lunch or dinner, or seeing a movie can be very uplifting. You may also find it beneficial to go home occasionally if you are from out of town.

These suggestions are also helpful even if you do not room in with your child or if your spouse is the patient. If your child is older, many hospitals will not let you stay the night. Don't feel guilty about leaving at night or for short periods during the day. It is absolutely necessary that you eat and sleep as normally as possible. You cannot be with the patient if you are ill.

A comment you will often hear from relatives and friends will be, "I don't know how you can be so strong." You may not feel strong, but you are because you have to be. Your loved one is carrying a heavy burden; he needs your support. When you are tired of being strong and you want to cry or scream, escape somewhere for a while. You are allowed to have your bad times, just as the patient is. If you are having a bad day, it might help the patient if you say so. He can accept that - you had bad days before he was ill. Honesty about your feelings will help the patient know you are not upset about something he has done and that your are not keeping anything from him. And he may even find a way to cheer you up.

The Health Care Team

The flood of information you first received may be confusing to you. You may need some things explained several times over the next few weeks before you grasp what is being said. This is a normal reaction to stress.
As a member of the health care team, you have the right to know in advance what tests, treatments, procedures and medications are to be utilized; how they are expected to work; and what side effects they may have. Some patients prefer not to know when certain tests, such as a bone marrow biopsy, will be done. That is their right. You also have the right to know the results of all tests and procedures. Sometimes, if the doctors are busy, they may forget to give you the results of minor tests.

Often families and patients expect doctors and nurses to have all the answers and to perform miracles. In reality, medical knowledge has progressed rapidly, but there are still many unanswered questions. However, the medical staff will do all that is possible for your loved one and will keep you informed of their treatment plans and what progress is being made. Whenever you have questions about procedures, etc., please ask the medical staff to explain. You will not be asking "dumb" questions. Knowledge and understanding can reduce fears and help you to make informed decisions.

If your hospital is a teaching hospital, your loved one will also be attended by various residents. The residents often rotate monthly, so you may meet quite a few new doctors. They must each take some time to become familiar with the patient's case, and you may feel a little less comfortable with them at first. However, all residents are under the supervision of older, more experienced doctors. Communication is an essential part of your loved one's care. Be willing to discuss any problems or concerns you may have with the doctors, either individually or collectively. You need to have confidence in the care being given.

The nurses are often the mainstay of the unit. They are the patient's advocate and an important link between the patient, his family and the rest of the medical staff. Most units have primary nursing, with one particular nurse assigned to each patient to plan and coordinate his nursing care. You can go to this nurse, or any nurse, with questions or problems. She will either answer your questions or will direct you to the most appropriate person to meet your needs. Occasionally, a patient or family member may find a nurse difficult to work with. Usually, discussing the problem with that nurse will resolve any conflicts. If it doesn't, talk with the head nurse. It is important that you have a nurse in whom you have confidence and with whom you can communicate.

Most units also have a social worker who is available to the patients and their families. Sometimes it is easier to talk with the social worker than it is with one's own family or friends. She can also help you find ways to handle problems involving housing, insurance, family, etc. It really helps to air your concerns and feelings, so do take advantage of this service.

As your confidence grows, you may want to assume more responsibility for your loved one's care. The nurses may let you help in many ways, but there are things you will not be allowed to do because they must be done by trained, licensed personnel. Some of the ways in which you may be allowed to participate in the daily routine care are bathing him, seeing that oral medications are taken on time, or changing bedclothes. Some families keep a diary or a record of daily blood counts and medications given. Ask the nurse what you can do to help. Also, you know the patient better than anyone else does and can give the nurses tips on this likes and dislikes.

There is no set guideline on how much you need do or know. This hospitalization, however, will be easier to cope with if the patient, the family and the mother members of the health care team can work together and understand each other.

Day to Day - Nights and Weekends

Take each day as it comes. Your loved one's physical and emotional condition may change daily, sometimes even hourly. There will be occasions for happiness, laughter and relief from tension. These will help counteract the times of greater concern for the patient's welfare.
Some days fly by while others seem to go very slowly. Boredom in hospitals is easily bred. It is nice if you and your loved one can plan special activities together - it will give him something to think about. There are many things that can be done while in bed. Painting, puzzles, card games and writing stories are a few examples. A television is a godsend in the hospital, as is a VCR. The patient can then play video games or watch movies whenever he wants.

Many hospitals have a children's playroom and child life teachers who organize activities for groups and individuals. They can provide art supplies, books and games. Children of school age generally have tutors during the regular academic year. Ask if a pet, such as a Betta fish in a closed fish tank, might be allowed in the room.

Exercise is a major part of getting well. It can also be one of the hardest things to convince a patient to do. Who wants to exercise when he is feeling crummy? It will take a little psychology and some incentives, or perhaps outright orders, to get the reluctant patient out of bed some days. If the patient is allowed out of his room, encourage him to exercise with other patients. Sometimes, telling him another patient won't exercise without him will make him feel important and useful. Small rewards might also help. Whatever you have to do, get him to exercise. It will accelerate his way back to health.

Your loved one may at times display a reluctance to eat. Chemotherapy, radiation and some medications can destroy the taste buds. That, coupled with not feeling well, can turn the patient against food. It may also be a part of his rebellion at being in the hospital. One possible solution is to work with the patient, the staff dietician and the doctor to find foods that will tempt the patient's appetite. You may also be allowed to bring in home-cooked foods or fast-food items. The hospital will closely monitor the patient's diet to be certain he is receiving the necessary nutrition. Except in medical situations that preclude eating, your loved one should be encouraged to eat a nutritionally sound diet.

Leaving the hospital at night may be a time of guilt and fear for some - and a welcome break from the day's tensions for others. Both feelings are normal and acceptable, and you may experience either or both emotions at different times. Those who are uncomfortable about leaving in the evening often feel that they are abandoning the patient or that he may not receive the needed care and attention when the staff is smaller. These concerns are understandable but unnecessary. All personnel and services that would be necessary in an emergency are available. Often the nurses actually have more time to talk with the patients during the evening than they do during the day.

For those who look forward to leaving at night, there is no reason to feel guilty. You may have spent the entire day caught up in the patient's needs. After so much time spent caring for another, you have a right and a need for a chance to unwind and care for yourself. However, feel free to phone the patient to say "good night" or to call the nurses' station to check on your loved one's condition.

Weekends can be both good and bad. It is a good idea to plan some different activity for the weekend, since many hospital personnel who help pass the time during the week are off duty. For many this is a time when the entire family can finally spend some time together. The joys of reunion occasionally may be marred by the tension of dealing with the increased number of people around you and the patient. This tension can often be relieved by having one or two family members visit with the patient while you and the others leave for a short while. Parents can sometimes get away for a few hours alone. You might check the local paper for something special to do with visiting family or friends.

A note about visitors: Various hospitals have differing regulations as to who may visit. The patient - and you - need to see different faces, but try not to overwhelm the patient with visitors. One or two people at a time for short periods is generally best. Remember that your loved one is ill and may not have the energy to deal with very many visitors.

Religion may or may not have been a part of your life before your loved one was diagnosed. Because of the seriousness of the disease and treatment, you may now find a greater need for spiritual assistance. A minister, priest or rabbi can be of invaluable help, both at home and in the hospital. If your loved one is in a hospital away from home, the hospital chaplain or your own spiritual leader may be able to arrange for someone to visit with you and the patient. If you are affiliated with a congregation, do keep in touch. They can provide both practical and spiritual support for you and your family. Some families will find that their faith and beliefs undergo some changes. For many people faith can help bring comfort and strength during this time of stress.