No One Can Prepare You For This
It’s not easy to watch your family member or close friend in pain. Especially when they have a rare disease you’ve never heard of and you don’t know what to do.
The GBS/CIDP Foundation can help. 90% of our volunteers have either survived GBS or CIDP and their variants, or supported a loved one through it. We provide support for everyone.
What YOU Can Do
- Get support for yourself. It’s important that your help comes from a healthy physical and emotional place. This is not an easy journey for either of you. Asking for and accepting help is one of the most difficult (and important) things a caregiver can do before reaching burnout. Don’t let it reach that point if you can. Many hospitals have social workers on staff to help.
- Take care of yourself. There is a good reason that airlines ask caregivers to put their oxygen masks on first in case of an emergency. Make sure you are eating well and getting enough sleep. Your self-care will fuel you to be available for the patient.
- Become familiar with CIDP. Knowledge is power. Though debilitating, this is a disease that has specific stages. It’s very helpful to know that however frightening, it is manageable. Ask a lot of questions. The patient will be assured that you know what is going on with the disease as well as treatment and can act as an advocate.
- Contact your local GBS/CIDP chapter. One of the most powerful things you can provide for the patient is a visit from a survivor. Speaking with another human being who has experienced the pain and the paralysis, yet walks into a hospital room with a smile is extremely reassuring.
- Be with the patient as much as possible. Losing control of oneself is a frightening experience, and a steady source of encouragement and support is very helpful for the patient. Bring your outside life in—work on a project of any kind in the hospital—knit, write, organize photos, pay bills, read out loud, blog, or bring in news and well wishes from other friends/relatives.
- Find a way to communicate. If the patient is on a ventilator, speaking is impossible. Not being able to communicate is extremely frustrating. The Foundation has a set of “communication cards” designed by a GBS patient/doctor (contact the Foundation to order the cards). Other options may be available in the hospital.
- Listen. This situation is new and frightening to the patient. All feelings are okay. Anger, fear, and depression are all normal reactions to a sudden, debilitating disease.
- Bring ‘home’ to the hospital. Photos of loved ones or a favorite painting can provide a sense of belonging. Watching movies and listening to favorite music or books on tape can provide a welcome respite from the realities of living through the acute phase of GBS.