Attention Caregivers: You're Not Crazy
By Naomi Zikmund-Fisher
In 1999, my husband, Brian, had an unrelated donor bone marrow
transplant for myelodysplastic syndrome. Almost five years later, we still feel
the reverberations. In my own experience, and in talking to other caregivers
about theirs, I have found some common threads to how the transplant experience
affects us.
Brian, Eve and Naomi Zikmund-Fisher
Not surprisingly, most caregivers feel sad or worried during
transplant. You may find, however, that even years after the transplant you
continue to feel depressed or anxious. Some caregivers also experience panic
attacks or "flashbacks," which may be triggered by seemingly unrelated things.
These problems can be confounded by a sense that you are not "entitled" to your
feelings because you were not the one who "really" experienced the transplant.
In addition, recovery is not necessarily the beginning of "happily
ever after" for your marriage and family. You may have doubts about your
marriage, a feeling of emotional distance or anger with your spouse, or
problems with intimacy. You might feel guilty for having these feelings,
sensing that the transplant should have made you appreciate your marriage and
family more.
Transplant often causes a significant change in family roles.
Prior to transplant, your spouse may have handled household tasks that fell to
you during transplant. You may have a new sense of independence, or you may
feel abandoned. You might feel resentful, or you may not want to go back to
your old roles. If you cared for a child, you may have discovered that you and
your spouse have different coping styles or values. You may feel that you did
all of the work or that you didn't do enough. If your spouse was the patient,
seeing him/her hooked up to tubes and machines, coupled with changes in
hormones and libido, may change how you feel about intimacy.
Some research suggests that continuous exposure to stress,
particularly stress that makes you feel helpless, can cause chemical changes in
animal's brains*. Long after the stress is over, this chemistry continues to
cause depression or anxiety. In addition, the experience may be "filed" in your
memory in ways that you may not fully understand. When you smell, see or hear
something that your brain associates with transplant, intense feelings may come
back as a flashback.
Give yourself permission to feel the way you do. You worked hard
during transplant. Unlike the patient, you did not experience recovery first
hand and so you didn't get the psychological benefit of "making it." Remember,
the transplant did not transform you or anyone else in your family into a
saint. Everyone has changing feelings, needs and desires.
Talking about your feelings with the survivor can help you feel
more "entitled" as you realize what a difference you made. Talking to your
spouse is also the first step to renegotiating the rules and boundaries of your
marriage.
You may also need some individual or marriage counseling to help
you come to grips with this experience and the changes in your life. Many
employers have Employee Assistance Plans (EAP) that offer free or low-cost
mental health services. Members of the clergy and your primary care doctor can
also make referrals.
Finally, if your sadness or anxiety is interfering with your
everyday life, if flashbacks are frequent or intense, or if you have thoughts
of hurting yourself, talk to your doctor right away. Medication and/or
psychiatric treatment may be necessary to help you get back on your feet, and
you've earned the right to feel great!
* Weiss, J.M., Pohoresky, L.A., Salman, S.
& Gruenthal, M. (1976). Coping behavior and neurochemical change in rats:
An alternative explanation for the original "learned helplessness" experiments.
In G. Serban & A. King (Eds.), Animal models in human psychobiology. New
York: Plenum.
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