Caregivers

Living with GVHD can be incredibly difficult; so is serving as the caretaker for someone living with the disease. It can be exhausting in every way imaginable—physically, emotionally, and mentally. It’s a lot of responsibility, and a lot of stress.

You’ve likely heard the analogy of the airplane oxygen mask—in the event of an emergency, you should always put your mask on first so you can then help others effectively. The same is true of caregiving. You can’t show up as the caregiver you want to be running on fumes…which means taking care of yourself isn’t selfish—it’s essential.

Here’s a few ideas for how to do that:

  • Seek out support from other caregivers — having a support network for yourself is vital. Ask the healthcare system where your loved one is receiving care if they have resources and local groups they can connect you to. You can also connect with others virtually through online support groups: https://bmtinfonet.org/support-group-list.
  • Create a routine, and build time into your day to take care of yourself. Self-care often becomes an afterthought in these situations, and that’s not healthy. Actively work to keep yourself physically and mentally strong by eating healthy, exercising, and seeking support and counseling.
  • Don’t be afraid to ask for help — you can’t do it all on your own! Think of things others can help you with…preparing meals, taking care of children or grandchildren, assistance with appointments, etc.
  • Speak up! Your needs are important, too, and effectively communicating them to others is essential. Relationships and roles may change, and it’s important to talk about it.
  • Take breaks — if you have someone else you can lean on, let them step in from time to time so you can pull back and recharge.
  • Plan ahead, but realize that chronic disease is ever-changing — the more flexible you are the easier the ups and downs will be to handle.
  • Give yourself credit…you’re doing great! And treat yourself the way you would a friend…be compassionate and understanding with yourself.

For more information, check out this article from BMT InfoNet for additional resources and suggestions: https://bmtinfonet.org/transplant-article/gvhd-caregivers