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Family Life

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Maintaining some semblance of a family life may seem very difficult, particularly when the patient is a child. If one parent is staying in the hospital or at a facility nearby and the other is maintaining the family home in another city or state, life can become rather involved. Separation from one's spouse and the absence of normal marital relations can cause friction in the most stable marriage. The parents will also have to decide which one will be spending the majority of time with the child. Sometimes because of job responsibilities or single-parent situations there is not choice.
The parent at home will have his own difficulties: not being there to see for himself what is happening; dealing with perhaps unaccustomed tasks such as housework and caring for other children; and keeping family, friends and acquaintances current with the patient's condition. If you can help constructively, do so. Otherwise allow the family at home to work our their particular arrangements. Do offer your advice and opinions, however, you are still necessary to the rest of your family.

If your spouse is the patient, you will have to decide together a workable compromise of your time. You will have to balance your desire to be at the hospital with your need to keep home and family functioning. Do rely on family and friends to assist you in both areas.

Relatives, friends and neighbors are generally anxious to help the family. Although they can do only a few things for the patient, they can provide practical support for the entire family. Ask them to help with anything that needs to be done: child care, shopping, laundry, housecleaning, yard work, etc. It might also be helpful to hire a housekeeper. Expect that things may not be done exactly the way you want. It will give you something to do when you do go home.

Children at home will, at times, resent the change in their lives. This is natural, but try to talk with them about it. Keep up with their activities and interests as much as possible. They may overreact to what you consider, especially now, inconsequential problems. Try to be patient; it may be their way of releasing their emotions. If they are old enough to understand, keep them informed of what is happening with the patient. They do care and are worried too. Older children may have to take on new responsibilities for themselves and the household. While this may be hard on them, it can also prove beneficial. When they visit, spend some time alone with them; they need to know you love them too. Your letters and phone calls will also mean a good deal to them.

Another thing to keep in mind is that they, too, desperately want to help the patient. If hospital policy permits, they can contribute by visiting, decorating the room, doing exercises with the patient, etc. From home they can phone, write cards and letters, and make or buy special treats. Help them find ways to be included, whether the patient is an adult or a child.

Children at home also need to feel that others care about them. In their concern for the patient, people can forget that siblings need to be asked how they are. You can gently remind friends of this by talking about all the family members. Adults who are especially close to your children may be willing to attend school activities or to provide extra loving support. Older children sometimes are able to tell friends of their need for attention. Remember to inform the schools of the hospitalization so that teachers and staff can understand the special stresses that exist.

When a sibling - adult or child - donates bone marrow, a special bond is created between donor and recipient: they share a life-giving organ. There is a sense of pride at being able to donate, as well as a feeling of responsibility. The donor has an emotional investment in the patient's welfare that no one else can have. However, if the recipient develops complications and/or dies, the donor may experience strong feelings of guilt and anger - that somehow his marrow was not "good enough". Encourage the donor to discuss these normal reactions with the family, social worker, medical staff and/or other donors.

Unfortunately, the selection of a donor can create problems. Those siblings who do not match may feel jealous of the donor because he, not they, will be instrumental in the patient's recovery. You can remind them that the patient is relying on them for loving support and continuity from home, both of which are necessary for his mental well-being. Since siblings may not actually mention these feelings, someone else may need to in order to help them discuss and understand their reactions.

For some aplastic anemia patients a bone marrow transplant is not considered because there is no sibling donor. Brothers and sisters of these patients may also feel guilty and angry about not matching. Their fears that the patient may, and sometimes does, die without their gift of marrow can cause feelings of self-blame and helplessness. Siblings experience the same sense of frustration that you do. Simultaneously, they can also feel relieved at escaping the discomforts of the marrow harvest. Here, too, you may need to initiate conversations about these reactions. Be sympathetic by acknowledging these feelings and expressing your appreciation for their willingness to donate marrow. A special thank you from the patient can really boost the siblings' spirits. Matching or not matching is a chance of heredity - no one can control it. This is one of the times when laughing together about "those crazy genes" can be beneficial.

In some families siblings are not close to one another, and a possible donor may have mixed feelings about giving marrow. Some do decide to donate, perhaps with the hope it will create a closer relationship between him and the recipient. Others may refuse to donate because of personal feelings, fear, or family or job obligations. As a result of the family conflict this refusal can create, individual members may need professional guidance to help them handle their reactions.

In your concern for the patient, remember there are others in the family. Your spouse and/or children at home need to know you recognize their special feelings. They still need to be a part of your life, as well as contributors to the patient's welfare. In contrast, however, the other family members may not be as wrapped up as you are in the day to day problems. Your mind will be concerned primarily with the patient. The others will have additional interests because they are operating in the "real" world. Love and patience will help the entire family recognize and cope with these differing outlooks.

As a result of this upheaval in your lives, roles will change and new relationships among family members may develop. Each person may handle his feelings differently, according to his personality. Therefore, it is very important that you share experiences, thoughts and concerns as much as possible. Do not, however, expect that the family will always deal well together. This is a time of stress for all - and remember that you probably had disagreements before your loved one was ill. Nevertheless, communication and tolerance for personal differences will help to maintain the stability of home life now and later.

Other Patients and Their Families

You will meet many patients and their families during your loved one's hospital stay. The children, especially, love to talk and play with each other and often do their exercise together. The friendships that develop will help in the days ahead. You can be a source of comfort and support to one another, since you can identify with the medical situations and the personal feelings each other experiences.
It is easy to become involved with the progress of other patients. When a patient is discharged, everyone on the unit rejoices. If one dies, the caring and concern of other families will help, not only at the time but also in the days and months to come. There is also a side benefit: You will all learn firsthand what caring really means. The intensity of the situation you are in can create fast, firm friendships which may last a lifetime.


Discharge, at last!

The patient and you may spend weeks, perhaps months, in the hospital under very stressful conditions. When the day of discharge finally comes, you might expect to feel nothing but happiness at being able to leave this experience behind. However, this is sometimes not the case. The joy and excitement of your loved one's discharge is often tempered by the anxiety of leaving the protective hospital environment. The unit has become home; the staff, your family. Because your loved one's primary care has been provided by others, the patient and family may be apprehensive about assuming total responsibility for the care and decision making. Another major fear is that of a medical emergency arising outside the hospital. Rest assured that your doctors will not release a patient they do not feel is medically stable. In addition, should any problems or questions arise, someone at the clinic or hospital will be available 24 hours a day.
Although the doctors will try to let you know the projected day of discharge a week or so in advance, it is not always possible because the patient's condition can change from day to day. However, before your loved one leaves the hospital, the nursing staff will train him and/or the family to do any medical procedures that need to be performed at home. Precautions and guidelines for life outside the hospital will also be discussed. Once again, communication is important in order to learn and understand what you need to know. Ask questions, however small they may seem, so you will feel more confident about providing the care at home.

Discharge from the hospital is generally followed by daily checkups in the outpatient clinic. Here the personnel will carefully monitor the patient's progress and answer any questions he or you may have. Checkups will become less frequent as time passes, and the hospital will be a place you visit, not "home".

After discharge, many patients stay at a facility such as the Ronald McDonald House for a few weeks before being released to the care of their doctors at home. If you live near the hospital and can go home immediately, the added responsibilities of family, household and, perhaps, a job can seem overwhelming. Rejoining the "real" world may be difficult at first, but the readjustment may be easier for you and your loved one if you resume your normal lifestyle slowly. As the first anxious days and weeks pass, and you become more comfortable with being away from the hospital, you will once again rejoice in the life you have regained.


Conclusion

Try to make the most of each day. The family has been placed unwillingly into a unique situation. Your life in the hospital will be like no other, a few outside people will understand the things your are going through. You will experience many different emotions, often contradictory. You really are not losing your mind. These emotions are entirely normal and are "allowed".
One area we have tried to stress is the importance of communication. Your loved one's illness has caused major changes for every family member. Adjustment is easier if you, the patient, other family members, and the hospital personnel can talk openly about these changes as well as about the patient's treatment. We encourage you to share this booklet with your family. The burden of caring for the patient and keeping the family together is not yours alone - it is a joint effort requiring recognition of each other's feelings.

Regardless of the outcome of this hospital stay, your life will be enriched. You will discover much about yourself - the strengths you never thought you had and the weaknesses too. Life takes on a whole different meaning. Your priorities change. This is a time when you will intimately know your loved one and share many things you may not have otherwise. In spite of the difficult times you may experience in the days to come, there will be much which is good that you will always remember.


Acknowledgement

The Aplastic Anemia Foundation of America is a nonprofit organization created to support research and clinical treatment of a serious and rare, but little understood, disease. We also assist families going through the experience of hospitalization through family outreach.

We hope that this booklet will be of some help to you. Know that you are not alone; we have all experienced what you are feeling. We pray for the very best outcome for your loved one. If you would like more information about the Foundation, you may write to the national headquarters:

Aplastic Anemia Foundation of America
P.O. Box 22689
Baltimore, Maryland 21203

If you would like to speak with someone from the Foundation and there is a chapter in your area, please inform the head nurse. We will be happy to come to the hospital to talk with you.

The Aplastic Anemia Foundation of America is indebted to Anne Pegues, Judith Millman and Majorie Cerchio for the planning and writing of this booklet. As parents whose children were victims of aplastic anemia, they are intimately acquainted with the problems faced by families of patients hospitalized with this disease.