MDS is a bone marrow failure disorder
Caregiving: Living with MDS: Resources for Managing Each Day

Caregivers are an essential part of the health care team. They are most often family or close friends, but may also be professionals that assist with organizing and delivering care. There are many distinct roles for caregivers. Many involve everyday activities such as home management, shopping, and running errands. When you are living with a diagnosis of MDS either yourself or with your loved one, these daily routines may be more difficult to maintain. In addition, there are several other tasks that will be necessary to accommodate the treatment routine.

Common roles for a caregiver:

  • Providing support and encouragement
  • Giving medications
  • Helping manage symptoms and side effects
  • Coordinating medical appointments
  • Providing a ride to appointments
  • Assisting with meals
  • Helping with household chores
  • Handling insurance and billing issues

Caring for or being around children

The time spent enjoying the company of family, including children, is important. Most patients with MDS can enjoy their family without restrictions. Discuss any recommendations for limiting contact with children with your health care team. Specific recommendations for contact with children are recommended for patients undergoing a stem cell transplant, leukemia therapy, or who have very low white blood cell counts (neutropenia).

Things you can do:

  1. Focus on your needs, too. Ask for Help. Build a support team. Strike a balance each day.
  2. Maintain a healthy lifestyle: nutrition, exercise, sleep
  3. Practice relaxation or meditation
  4. Make an appointment to see your health care provider for a wellness check.
  5. Seek help if you are feeling anxious or depressed
  6. Talk with a financial counselor and your certified public accountant for financial guidance

Additional Resources:

MDS Foundation: Being a Caregiver Sharing Responsibilities:
Family Caregiver Alliance: Community Resources
Be the Match: Caregivers and Bone Marrow Transplant

Review answers to commonly asked questions or get answers to your questions from an MDS expert