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 (click here)
- 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 GBS. Knowledge is power. Though debilitating, this is a disease that has specific stages. It’s very helpful to know that the acute phase, however frightening, is temporary. 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 needs is 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.
Children with GBS
When a child has GBS the entire family is affected. Parents’ attitudes towards the patient and the illness will trickle down to every family member. This is the time to gather information and remain on the positive side of honesty.
Although it’s a long and painful process, 80% to 90% of patients recover completely. Study after study on recovery (from any kind of illness) show that a positive attitude contributes greatly to the outcome.
All of the general caregiver advice applies here, plus additional strategies to maintain as much of a ‘normal life’ as possible for the patient and siblings in the family.
What YOU Can Do (click here)
- Maintain the general routine as much as possible. It’s important to communicate to the patient and their siblings that life goes on, that this illness is a bump in the road and not a dead end.
- Maintain rules and responsibilities. Do not excuse a child recovering from GBS from responsibilities if they are capable. Revise expectations, but being a part of a family means helping in some way. A recovering child maintains a sense of belonging and usefulness when he or she can contribute.
- Answer questions based on fact. Young children can make up reasons for the illness that exist in the magical realm. Children may believe that their comments or actions can be connected to the cause of the disease. That said, the reality of the disease will bring up feelings and questions to be addressed. Every feeling that a child has should be discussed and acknowledged.
- Involve siblings in the recovery process. Siblings can help with homework, physical therapy, and making accommodations for the patient. Be careful not to rely too much on siblings – their experience of childhood is equally important.
- Allow the patient to participate in medical decisions. Giving choices to a child develops responsibility and reasoning skills. If a child can handle it, participating in treatment choices can be extremely beneficial to their emotional development. Scheduling decisions, describing physical sensations to doctors and nurses, learning to adjust to social interactions, learning to communicate their limitations to friends, and making accommodations in the home and at school – all of these can be a discussion with the patient, giving them a sense of power in a powerless situation.