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Caregivers' Guide for Bone Marrow/Stem Cell Transplant

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

by Linda Diaz

It is normal to have strong feelings when someone you love has been diagnosed with cancer, especially when their treatment includes a bone marrow transplant. Emotions, including sadness, anger, depression, and feeling generally overwhelmed, are common for caregivers going through this experience. Do not be critical of yourself when you feel strong emotions. Caring for a person who is seriously ill may challenge you in ways that are completely new.

Normal emotional reactions of caregivers vary dramatically from day to day. Patients embarking on the transplant process often describe their experience as an "emotional roller coaster." This roller coaster has many passengers including caregivers. The ride can be intense, and you may find yourself wondering if it will ever be over.

Managing Feelings of Anger and Guilt
Mary underwent a transplant in January, and her family was thrilled when she was finally discharged in February. Her husband, Paul was relieved that her blood counts were high enough to allow her to be home and that he no longer had to run between the hospital and his responsibilities with work, the children, and maintaining the house. The first week home Mary and Paul received lots of support from friends who brought in meals and helped with the children. However, by week three, Mary was still resting for the majority of the day. Paul began to feel resentful and angry that all of his efforts to keep the ship afloat over the last several months were less often acknowledged by his wife. He was more than ready to have his normal life back. He was exhausted and began feeling trapped and angry.

Then Paul began feeling guilty about having such feelings; after all HIS WIFE WAS FIGHTING FOR HER LIFE! By judging his feelings as "right or wrong," he was adding guilt to his long list of stresses. This self-criticism put an even greater burden on him and eventually on his family. One strategy is to acknowledge these uncomfortable feelings, perhaps to a trusted friend. This would enable him to receive support and perhaps gain perspective. Talking about these feelings may defuse his anger and sense of powerlessness. Emotional exhaustion for caregivers is a reality. Managing negative feelings becomes easier once they are acknowledged.

Caregivers often describe feeling overwhelmed with medical tasks. Caregivers must become familiar with medical terminology, such as the implications of lab results and blood counts. This is a lot of responsibility for a non-medical person. Try to organize your tasks by writing things down as they are explained to you.

People experiencing serious illness can sometimes become irrational with demands, ungrateful and irritable. Feeling anger is a normal response. Any two people spending a lot of time together may become agitated with one another. Getting a break, even for ten minutes is critical for both the patient and caregiver. It can be constructive to talk about the source of your tension. Such conversations are most productive if you enter into them when you are both reasonably rested and have had some cooling off time. Express your feeling in the least destructive way possible. Avoid statements like "You made me feel." Rather, begin the discussion with a statement like, "Yesterday when you yelled at me I felt.." If you take responsibility for what you feel, it stands to reason that you can also assume responsibility for feeling better. You can choose not to take negative comments from others personally. Blaming someone else for your feelings gives you the false impression that you have no control over how you respond.

Try to see the situation from the patient's perspective. This might increase your tolerance and understanding. Talking to a third party about your feelings can also be a constructive way to keep your personal bias in check. Putting energy into regret, anger, and resentments from the past robs you of energy needed to manage the job in front of you. Sadness, worry and fear are particularly difficult emotions for the caregiver to manage.

Caregivers have the role of "cheerleader," reassuring their loved ones that they can get through this. Encouraging the patient is the best strategy when he or she is feeling particularly vulnerable. However, caregivers need to have an outlet of their own for expression of worry and fear. It may be helpful to join a support group of other caregivers people with similar experiences that can offer advice and support. Other caregivers understand your situation but are not personally involved with your family and can be objective. Caregivers do not need to take on that "cheerleader" attitude with other caregivers. Your medical center can provide information about available support groups.

Is it ever appropriate for the caregiver to discuss his or her worries and fears with the patient? The answer is "sometimes." Patients need to know that their caregivers are on the same page as they are, and that they acknowledge the seriousness of the situation. Patients can experience feelings of abandonment when everyone takes the "Don't worry about a thing" approach. The truth is that a transplant is frightening and honest dialogue about that reality can help patients and caregivers feel connected and less isolated.

Enhancing Communication
A patient's need for conversation may change from day to day. Many patients express the need to discuss normal every day things like the weather or politics. They may get bored and agitated with the constant question "How are you?" Alternatively, there may be days when patients are coping with some difficult feelings or decisions and feel that their caregivers are being insensitive to bring up the weather when they are experiencing depression or fear. A statement such as "I'm here to listen if you wish to talk about your feelings, treatment.." can take the guesswork out of cancer-related communication from day to day. Accept that no two people approach the transplant process in the same way.

Communication around sensitive issues like sexuality or finances can present an additional challenge. Choose a time for such discussions when both parties are rested. In the heat of an argument it is unlikely that a conversation will result in creative problem- solving or increased understanding. The goal is to SOLVE PROBLEMS. This is different than "talking about issues." Talking about issues implies that underlying obstacles exist that will never go away. Solving problems implies that solutions can be found. Professional help can really make a difference. Fortunately most medical institutions have names of social workers, psychiatrists, or health care workers who have experience facilitating effective communication.

Delegating Responsibilities
Caregivers frequently take on multiple roles and responsibilities. Delegating tasks is a skill which requires conscious effort. Delegating tasks to others means giving up some control over the specific details of how things are accomplished. For example, if you allow a neighbor to bring in dinner for your family, you have to accept what your neighbor chooses to cook and how they choose to prepare it. Many people find giving up this control difficult. When caregivers fail to share responsibilities, they may exhaust themselves, leaving them depleted for the more urgent tasks. Delegating is also a challenge for people who define themselves by the tasks that they accomplish. Delegating causes one to confront their sense of identity. If I'm not the cook, breadwinner, driver, who am I? Appreciate that your new job, Caregiver, is more than accomplishing tasks. Lots of people can make a meal; no one else can sit at the hospital and be you.

Delegation of responsibilities can be especially delicate when children are involved. Children may need to take on additional chores that were previously handled by their parents. While some of this is appropriate, it is important that children not be pressured into a level of responsibility that is beyond their capacity or maturity level. Statements like "you'll have to be the lady of the house now" can feel overwhelming to a young child.

Well-meaning friends and family members may ask caregivers what they can do to help. Prepare a list of tasks that others could do. This avoids duplication of effort, particularly around meal preparation. A prepared list of tasks allows other helpers to select jobs that fit their abilities.

Managing Family Conflicts
Getting along in a family can be demanding even in the best of circumstances. Individual personality traits frequently conflict, creating tension and resentment. Many people have the fantasy that when cancer strikes a family, all the pre-existing anger, jealousies and other emotional baggage will go away. "I thought our family would become closer due to this crisis," is a common idea. Many people do grow closer in a crisis but not because anyone changes their pre-existing personality.

The bad news is that negative personality traits tend to be accentuated when people are under stress. For example, the person who tends to be controlling will become more controlling when under pressure. The critical person will become more judgmental. The person with an addiction will rely on their substance more heavily. Caregivers and patients have their share of unflattering personality problems. Professional counseling may provide specific practical strategies for moderating conflicts during the transplant process. Patients and caregivers who have a history of anxiety, depression or addictions are at higher risk for distress during the treatment period. In these situations counseling can be a real lifeline through the most difficult months. Caregivers who are assisting patients with psychiatric disorders need to remember that they are not responsible or capable of "fixing" the emotional distress of their loved ones.

Criticism from extended family can be difficult to take. Sometimes extended family members or friends are critical of the way you are caring for the patient. It is common for caregivers to feel frustrated with the advice of others to "do more" or "do less." Remember that you are not helping your loved one through the transplant process to win popularity points with the well wishers. Surround yourself with people whom you respect and who are invested in the well-being of both you and the patient.

Post-Transplant Concerns
Patients and caregivers often become frustrated with the chronic symptoms that persist after a transplant. For caregivers there is a natural sense of relief when the acute period of treatment ends. However, it is helpful to understand that for the patient the transplant experience is not over, physically or mentally, and the long hoped for feeling of being "finished" is still elusive.

Spouses are obviously affected by the side effects that extend beyond treatment. It is helpful to understand that the physical and emotional symptoms patients are still experiencing are not always obvious. During follow-up visits with the transplant team, the physician may well say, "You are doing great!" Caregivers need to understand that statement may not translate into patients FEELING great in the initial months posttransplant. As caregivers, we can be most helpful by acknowledging the reality of these side effects, which may include fatigue and loss of strength, especially in the post-transplant period when these symptoms can be particularly discouraging.

Helping your loved one cope with fears about recurrence of cancer requires lots of patience and listening. Patients frequently say, "Everyone has moved on, and I'm still back here worrying about my health." Caregivers may become frustrated with patients who need constant reassurance about their wellness. Encouraging the patient to attend a support group or see a counselor who specializes in medical counseling issues could assist the patient in managing these fears.

Returning to former roles is also an ongoing concern. Roles may include that of cook, financial advisor, lover and more. Stepping back into daily activities of life varies tremendously from patient to patient. There is no prescribed time frame for "readiness" to enter into specific activities. Open dialogue about expectations and feelings can help with this gradual transition from illness back to normalcy.

Caring for Yourself as a Caregiver
Do not expect yourself to be perfect. You are only human and most likely dealing with many things that you have never been confronted with before. It is natural to make mistakes along the way. Forgive yourself when mistakes do happen. The sooner you shift your thinking to the positive aspects of what you are doing right, the better for you and the patient.

Recognize your physical and emotional limits. Seek help from others before you reach the end of your energy reserves, (see delegating responsibilities.) Understand that you will be a much more effective caregiver if you focus on non-cancer activities periodically. For example, go out with friends; watch a funny movie; and have non-cancer related telephone conversations with others.

Be aware of thoughts along the lines of "I can do it all because I'm not the one who is sick." While it is true that you are not the patient, that does not mean your energy is limitless. When confronted with your tasks for the day, ask yourself, "How am I going to accomplish this in a way that promotes energy and health for both of us?" Needless to say, the patient facing transplant needs a caregiver who will remain healthy. Take in the appreciation that your loved ones send your way. Accept their compliments and gratitude graciously. Focus on your accomplishments. The ability to simply be there is a greater gift than you can imagine.

Linda Diaz, LMSW, ACSW, is a national leader and lecturer in the field of oncology social work. For the past 23 years her primary focus has been on providing psychological counseling to cancer patients and their significant others. Linda has developed numerous support, education and complementary programs, which have been integrated into traditional medical care settings. She currently has a psychotherapy practice at the Birmingham Maple Clinic in Troy, Michigan.

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Table of Contents

Acknowledgements

Foreword

Why a Special Booklet for Caregivers?

My Gift to Mom for Her Second Birthday: An Adult Daughter's Perspective

Tackling the Challenge: A Husband's Perspective

Cancer Etiquette: A Survivor's Perspective on Effective Communication

Top Tips for Parent Caregivers: A Mother's Perspective

Another Way to Say I Love You: A Wife's Perspective

Emotional Aspects of Caregiving: An Oncology Social Worker's Perspective

Relying on a Family of Strangers: A Patient's Perspective

Symptom Management for Caregivers: An Oncology Nurse's Perspective

How to Be a Successful Family Caregiver: An Advocate's Perspective

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