Nancy began caring for her husband about eight years ago when a routine blood test diagnosed him with early-stage blood cancer. The doctor informed Nancy’s husband that his best hope for longevity was a stem cell transplant, so he went on the waitlist. There was a lot of anxiety for Nancy while they were waiting for the transplant because there was some uncertainty with her husband’s genetic markers, but she feels they had the ability to handle this anxiety with resources and space to process the information they were given.
Nancy was provided education by the healthcare team through a pre-transplant training session. She got to meet everyone on her husband’s team and was informed about their various roles.. She was also provided literature to read, which was helpful but could also be very scary, because the literature states everything that could happen, creating the potential for additional anxiety.
The most difficult part of being a caregiver for Nancy was immediately post-transplant. Nancy had to essentially be a nurse technician and provide her husband with the proper amount of medication through a port, which was incredibly nerve-wracking for her. Outside the bubble of the hospital with ready information and help, Nancy didn’t feel as confident, but it had to be done—the only other option was to have her husband remain in-patient. Regardless, they still had to visit the doctor and see a visiting nurse every week.
Nancy found support in the form of her friends and family, who would visit with her for some respite time. She also felt her husband’s healthcare team would check on her as the caregiver. During her time as a caregiver, Nancy recognized the importance of taking time to care for herself and started seeing a therapist. Nancy had very good health insurance and did not struggle financially during this time. However, knowing costs and how much money went into just accommodating her husband’s new diet, Nancy can’t imagine how caregivers and patients can go through this process without good insurance.
There was no support or information provided on anticipatory grief, and Nancy thinks it would have been helpful if the center had prepared her a little in case things went wrong. Nancy did ask to meet with a palliative care team herself, although they never needed to be utilized. However, she thinks focusing too much on negative what-ifs may scare caregivers, so there needs to be a balance.
Nancy realizes that she and her husband were in the best possible position regarding education, familiarity with the healthcare system, and financial stability. She knows others don’t have these resources, and she sees ways further help can be provided to caregivers.
Nancy is now involved in a peer-to-peer telephone line for stem cell transplant caregivers to help others like her. She believes there should be an available line for all transplant caregivers to call and speak to a real person to get actual information and support. She also thinks there should be more outreach to determine what each individual caregiver needs, and more local services. In her time on the peer-to-peer line, Nancy has also realized caregivers are concerned about the state of their home. Since transplant recipients are immunocompromised, the homes they are returning to need to be clean and well-kept. She thinks home visits to let caregivers know how to make the space safer for their care recipient could help ease some anxiety.