By Talia Giordano, LCSW
Family Services and Caregiver Lifeline Program Manager

After working with transplant caregivers and families for over 13 years, one theme continues to emerge: transplant caregivers consistently reveal feelings of guilt. Caregivers can often experience guilt from maintaining ones own physical and emotional health, communicating openly with loved ones, and allowing oneself to experience happiness and joy. Such feelings of guilt can weigh heavily, inhibit positive coping mechanisms, and strain relationships.

As one transplant caregiver explained, “I occasionally feel guilt or resentment, not against anyone in particular but against the circumstances. I mourn the loss of what we had planned for the rest of our lives together and the fact that it has been replaced by our new normal. Still, I am grateful that we have the time that we have been given.”

Another caregiver stated, “The pressures of being a caregiver are often overwhelming. Caring for a loved one brings me mental and physical stress and worry of losing them. I have constant thoughts whether I am doing the right things for them. This significantly impacts doing essential things for myself and brings on additional concerns that someday I too will be in the same situation as the person I care for.”

Another type of guilt transplant caregivers may experience is centered around feeling that they should have done things differently.

A third caregiver recalls, “I went through a night of guilt last night, feeling upset and questioning why I didn’t do more. I imagine that if I had made different choices at the beginning, the outcome might have been different.”

Feelings of guilt cannot simply be “turned off” when one is told, “You shouldn’t feel that way.” Emotions such as guilt, sadness, or happiness can be supported and managed through positive coping tools. Instead of discouraging feelings of guilt in caregivers, these feelings should be normalized and validated, helping caregivers feel valued and maintain a sense of self-worth.

Self-care is imperative to managing stress and the burdens associated with caring for a loved one. Schedule self-care into your daily routine, like an appointment to help you feel more accountable. Self-care does not need to be an activity that lasts for hours; it could be a 15-minute walk outside, a 15-minute chair meditation, or a creative art or craft activity. Focus on activities that help you feel replenished – even if it is just for a few minutes.

Receiving support from others in similar situations can also be beneficial for caregivers. By participating in support groups with those who have similar experiences you can feel validated and appreciated for the feelings you are experiencing. You may also learn new tips and tools for navigating the caregiving and transplant process. The Caregiver Lifeline Program offers a virtual transplant caregiver support group twice a month that caregivers can join from anywhere in the world!

Finally, sometimes feelings of guilt, depression, and anxiety may be too overwhelming and cause a negative impact on daily functioning. If this is the case, speaking to a mental health professional is recommended. A mental health professional can work with transplant caregivers in developing and maintaining positive coping tools and long-term emotional wellness.

One transplant caregiver suggests, “…my advice to anyone in the process of receiving a donation [transplant] is make sure the patient and caregiver have counseling/psychiatric support before and after.”

To talk with a social worker about resources and support around caregiver guilt, emotional wellness, or support groups, please reach out to Talia Giordano, LCSW at caregiverlifeline@giftoflifefamilyhouse.org.

The Caregiver Lifeline Program is supported in part by TD Charitable Foundation. We are thankful for their partnership and generosity.