Being a Caregiver to Someone With Castleman’s Disease

As a caregiver for someone with Castleman’s Disease, or any serious illness, you will likely have many questions about how to best support your loved one. First and foremost, you should understand that, at times, it may be difficult to be a caregiver. There may be many challenges that you’re handling with the patient, additional stresses, or feelings of being overwhelmed. Always remember that these are normal feelings, and it will be helpful for you to also develop a network to support you when needed.

It is important for the patient to speak up when he or she needs help with daily tasks, doctor appointments, or for someone to talk to. And it is equally important for you, as the caregiver, to express when you need help, too.

Helping a loved one diagnosed with an illness is very admirable, and you should always feel proud of the support and assistance that you are providing. The following tips will guide you as you develop your own plan for being a caregiver:

  • Take time (even 30 minutes) each day to do something that you enjoy, such as reading a book, taking a walk, or calling a friend.
  • Maintain a calendar of doctor appointments, treatment schedules, and any other important reminders. Being organized and aware of upcoming activities will help you better manage your daily life.
  • Know when you need a break. When the stress of caring for your loved one becomes too much, ask a friend or another family member to step in so you can relax and recharge.

To learn more about being a caregiver, listen to Deb's story.