Parents as Caregivers
All patients having a bone marrow transplant (BMT) need a personal caregiver—that is, someone who can provide comfort, physical care, observation, and emotional support during the entire transplant process, from the first clinic visit through hospitalization and the return home.
For most children having a BMT, one or both parents are the primary caregivers. Although our doctors and nurses will take care of all the complex care, especially during hospitalization, your child will benefit tremendously from the constant companionship, watchfulness, and support of the primary caregiver. This close support may even allow your child to leave the hospital sooner.
Typical parent caregivers help in these ways:
- Planning ahead, making decisions, and keeping track of all appointments
- Making arrangements, such as transportation to and from the clinic
- Accompanying their child to appointments
- Providing emotional support
- Providing physical care
- Helping their child take oral medications
- Taking care of their child’s central venous catheter
- Giving intravenous fluids and medications using an electronic pump
- Recording medications taken by their child
- Identifying changes in their child’s condition
- Obtaining medical care if needed
- Reporting symptoms to health care staff
- Maintaining the home environment
- Preparing food
- Gathering information
- Serving as a communication link with other family members and friends
We Will Prepare You to Be a Caregiver
Caring for a child who is undergoing a BMT may seem daunting, but we are here to help. The Seattle Cancer Care Alliance (SCCA) staff will help you prepare for your role as your child’s caregiver with weekly classes that cover topics such as care at home, food safety, what to watch for, and long-term recovery. Individualized instructions will be provided about your child’s medications, central venous catheter, and other topics. Your responsibilities will be tailored to your comfort level, skills, and background. All the instructions will also be written down in clear and detailed language, with phone numbers to call if you have questions. You can also learn about caregiver tasks in the support groups for parents of children undergoing transplants, which meet at both SCCA and Seattle Children’s.
We Will Provide Support
Parents who are taking care of a child during a BMT need to take care of themselves as well. We provide support for caregivers through support groups and individual appointments with social workers, chaplains, and Child Life specialists.
The Patient & Caregiver Resource Manual that you will receive when you arrive in Seattle includes resources and suggestions that will help you take care of yourself and other family members during this stressful and challenging time.
If you are coming to Seattle from outside Western Washington, you can also ask for the support of an SCCA patient family volunteer. Our volunteers offer companionship and practical assistance for families and caregivers of patients who have no local support. For example, a volunteer can meet you and your child at the airport when you arrive and provide transportation for grocery shopping and errands. Volunteers will also join you and your family for social activities, such as movies, sightseeing, or restaurant meals, or will take children and teens on outings to give you a break. Contact the director of Volunteer Services at (206) 288-1071 for more information.