nbmtLINK - National Bone Marrow Transplant Link
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Southfield, MI
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Bone Marrow/Stem Cell Transplant Frequently Asked Questions
Helpful information for patients, caregivers and families
(Bilingual Spanish/English)

17. What are the responsibilities of a caregiver?

Ideally, you may be able to arrange to have more than one caregiver, as the role can be very demanding. Even though many people successfully make it through the transplant with only one caregiver, having two or more caregivers is an advantage. This allows each caregiver to rest and return to the hospital more refreshed. Since caregivers may experience a high degree of anxiety, sharing the responsibility of caring for you can serve to alleviate some of the tension.

In many cases, it will only be possible for you to have one caregiver with you during the week. If this is the case, you may consider arranging alternate caregiver support during weekends so that the caregiving task does not fall on just one person. Finally, having more than one caregiver provides a safeguard in the event that a caregiver gets sick and is unable to be on the transplant unit.

Your caregivers are very actively involved during the pre-transplant and post-transplant process. Their responsibility after discharge from the hospital significantly increases as they are required to alter their lifestyle and other needs to assist you. It is important that caregivers are provided emotional support and monitored for signs of distress and fatigue. The role of a caregiver may include:

  • Providing emotional support
  • Providing physical care during and after hospitalization
  • Caring for the central line (catheter in a vein in the chest)
  • Helping administer oral medications
  • Recording the medications taken
  • Giving intravenous fluids and medications using a pump device
  • Identifying changes in the patient's condition
  • Obtaining medical care if needed
  • Reporting symptoms to health care staff
  • Gathering information
  • Keeping family members and friends up-to-date about the patient's condition
  • Monitoring the number of visitors
  • Maintaining a clean home environment after hospitalization
  • Preparing food
  • Providing transportation to and from the hospital for follow-up care

Knowing that your caregiver is well prepared for his/her responsibilities may give you greater confidence. Organizations exist that support caregiver needs, and it may be worth the time to contact these groups. Sharing unique concerns with other caregivers and receiving mutual support can help. Check if caregiver discussion groups are offered at the transplant center. This is a good place to voice concerns and get practical suggestions about caregiver responsibilities. Caregivers won't want to burden the patient with additional problems, and these groups may provide needed support for them.

Please call the nbmtLINK at 800-LINK-BMT (800-546-5268) or e-mail info@nbmtlink.org for additional information.

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