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Survivorship Guide for Bone Marrow/Stem Cell Transplant
Coping with Late Effects

Long-term Relationships with Caregivers

Just as the transplant changes us, it can also profoundly affect our caregivers in both negative and positive ways. The effects of the transplant can change not only how our caregivers relate to us, but can also change their perceptions of themselves and their life goals. Many caregivers find that their feelings towards life and death, their sense of security, and their priorities are changed. Here are a few comments from caregivers about their experience:

In addition to bringing me closer to my mother, the experience has left me with a clearer sense of priorities. It is a memory I can always invoke to remind myself of what really matters in life.

The transplant has completely changed our lives – physically, mentally, and financially. The doctors say that a stem cell transplant changes a body by aging it…The stress of being a caregiver also ages a person physically and mentally.

Although on the surface I think that I act about the same as before my daughter’s diagnosis, underneath I am more pessimistic and bitter (But I don’t think she feels that way at all).

I became for a time more hyper-clean and compulsively germaphobic than I like to admit... I also became more anxious and aware of the fragility of life, and that anxiety has diminished but still troubles me, even though my wife's health has improved and our post-transplant life has become more normalized.

Being a caregiver has impacted my career path…At the time of my mom’s transplant, I was earning my PhD in English. I am now a professor in a unique program called Biomedical Humanities...The time I spent witnessing what life is like for a patient, how different professional caregivers interact with patients, how caregiving institutions work, etc., has definitely enriched the understanding and empathy I bring to the work that I do.

For some caregivers, the late effects of the transplant may include post-traumatic stress, depression, and anxiety, while for others the transplant experience can lead to a greater sense of self-worth, meaning, pride, and improved sense of competence. The changes that are introduced into the relationship as a result of the transplant can pose serious challenges to relationships between survivors and their caregivers. Over time, these feelings evolve and change, sometimes bringing people closer, introducing strains, or, in some cases, tearing relationships apart. Below are some observations from caregivers on how their relationships have been impacted by the transplant:

We are closer now more than ever (and we were extremely close before). I’m sure part of it was the forced opportunity to talk about the heavy, weighty subjects of life, meaning, and death, but a lot of it was just the time we were able to spend together.

Becoming a nurse to my husband has changed my perception of him. It is hard to go back to seeing him as I used to.

I am more protective of my daughter and worry more about her than I did before transplant. It probably affects me more than her.

The transplant and the changes it brought about in my husband were very challenging. Physical intimacy has continued to be difficult. Emotional closeness with my spouse is improving…Our social life has decreased with only a handful of friends with whom we are close.

Dealing with the ripple effect of the transplant and its impact on our close relationships is complex, and requires good communication, compassion, and understanding. Recognizing that our caregivers have also been on their own cancer journey and have had to struggle in the process of supporting us can be useful. Like us, they too have suffered losses and made gains as a result of the transplant. And like us, when put to the test, they have struggled with their strengths and shortcomings, and have had to persevere to get to this point.

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