Myelofibrosis

Caregiving

The fatigue that often accompanies myelofibrosis may affect your ability to do certain activities. When your symptoms are controlled, you may feel healthy and able to lead your usual lifestyle with minimal assistance. At other times, such as when you are preparing for and receiving lengthier treatments, you will require more help. A caregiver is an important and valuable person in the life of an individual managing blood cancer.

If you are a candidate for a stem cell transplant, a full-time caregiver will be a necessary member of your care team. This is usually a family member or close friend. Often multiple people make up a caregiving team.

Most transplants occur in the hospital setting for the first few weeks. When recipients leave the hospital, they are typically deconditioned and able to care for only their own most basic needs like bathing, dressing, toileting and feeding themselves. The caregiver will assist with important day-to-day activities that require more energy.

Caregivers will receive education from your transplant team along with specific instructions for all phases of this procedure, so you and your caregivers understand your needs. After the transplant, a caregiver can help with the following:

  • Grocery shopping and food preparation
  • Preparing your food safely, and keeping your home clean in accordance with the guidelines from your transplant team
  • Monitoring you for signs of infection and other complications
  • Transporting you to frequent medical appointments
  • Ensuring you take your medications as prescribed by the doctor

Other types of treatment, along with the disease itself, may cause varying degrees of fatigue. A caregiver can assist with many other responsibilities, including tracking medication, attending medical appointments with you, helping with personal care, managing paperwork, relaying information to the medical team and providing emotional support.

If you do not have a loved one to help, ask your nurse navigator for a referral to a support group.

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