Multiple Myeloma

The Caregiver’s Role

Practically speaking, having multiple myeloma changes things. It may alter your ability to physically do certain things you usually don’t think twice about, such as taking out the trash, moving furniture or lifting a heavy box. Because your bones may be weaker now, these ordinary activities could cause fractures or other injuries. As you think about how to tackle these and other occasions, consider asking for assistance.

A caregiver can be a spouse, loved one, friend, neighbor or professional health care worker, and the responsibilities can be shared among multiple caregivers. How much help you’ll need will differ depending on treatments, disease progression and side effect management. 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.

Some infusions, for example, can take several hours. A caregiver can ensure you prepare properly by eating and drinking enough and dressing comfortably, and take you to and from the treatment center. By keeping you company during and after the procedure, the caregiver can also help watch for side effects that should be reported to your health care team.

Another example is a stem cell transplant. A full-time caregiver will be instrumental in your recovery. Generally, having your cells harvested takes several hours in multiple sessions. It can make you extremely tired, and it’s necessary to have help in a variety of ways, from food preparation to making sure you’re steady on your feet. After your cells are harvested, your immune system is depleted, greatly increasing your risk of infection. As a result, having someone to do the grocery shopping and run errands enables you to avoid being in crowds where there are more germs.

After the transplant, a caregiver will be crucial in these and other ways:

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

Your transplant team will provide you with specific instructions for all phases of this procedure so you and your caregivers understand your needs.

Take Care of Your Emotional Well-Being

Your diagnosis may make you feel as if you’re on an emotional rollercoaster, causing feelings such as anxiety, anger and depression. Your ability to do certain activities may cause a shift in responsibility at home, which may be difficult to accept. It may also be unsettling moving back and forth between needing help and being self-sufficient. These feelings are normal, and it is essential to find healthy ways to express them.

  • Explore meditation, gentle yoga, massage therapy, deep breathing exercises or other relaxation techniques.
  • Spend time outside. Stroll through a park. Watch birds. Enjoy the flowers. Breathing fresh air and being in nature can be therapeutic.
  • Take charge of things you can control. If decision-making feels overwhelming, ask your loved ones to handle routine decisions for now.
  • Stay positive, but it’s just as important to give yourself a break on bad-attitude days.

Many people who have multiple myeloma also recommend having support that is separate from your caregiver, whether it’s a trusted friend or other multiple myeloma survivors who’ve had similar experiences. Having someone who listens, lets you complain when you need to and laughs with you is extremely valuable.

If you have feelings of hopelessness or depression that last more than a few days, contact your doctor. Seek medical attention immediately if you have thoughts of suicide. 

 

Key Takeaways

  • It’s helpful to have at least one caregiver.
  • How much help you need may change.
  • Support is key.

Additional Resources

 

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