Caring for a loved one with Guillain–Barré Syndrome

Caring for someone with Guillain–Barré syndrome (GBS) can be a very frustrating experience for a caregiver. This rare neurological, autoimmune disorder attacks the peripheral nervous system, and can paralyze the patient’s muscles from the lower extremities, to the torso, and to the upper limbs. This can effectively deprive a person of his or her movement control – including bladder and bowel movement – but it doesn’t stop there. Damaging the nerves that send signals from the brain to the muscles can also make it difficult to breathe and swallow. Thus, like Joe Bonham in Johnny Got His Gun, the patient cannot move, breathe, or eat without assistance. Severe instances of GBS require immediate hospitalization. There, the person is connected to a ventilator and has his or her heart rate and blood pressure monitored. Two tubes may be attached to different ends of his/her body; a catheter to drain urine from the bladder, and a nasogastric tube to feed them. If necessary, their airways and lungs will be cleared with suctioning.  Seemingly everything is being taken care of. What’s a caregiver to do? At that point, there is only one that a caregiver can do, but it’s a doozy; just being there for your loved one.

Consider that as relieving as being able to breathe again (shout out to Toni Braxton) is, the person will also understandably experience a series of emotions such as fear, surprise, alarm, shock, and others – especially given that the symptoms of Guillain–Barré syndrome can become critical in a matter of hours (though it might take days and weeks as well). A familiar face will be mightily reassuring under those circumstances. Moreover, the person will not be able to speak either. Therefore, the caregiver must become his or her advocate. You don’t have to have a telepathic link with your loved one – though some people do seem to have one – to know what they want and communicate it to the outside world. Letter charts can be helpful for the patient to spell out their thoughts. There is also the old ‘one blink for yes, two blinks for no.’ And if push comes to shove, code Morse like in the aforementioned Johnny.

As an advocate, the caregiver’s job is to learn as much as possible about GBS from books in libraries, authoritative websites, and from the very same healthcare provider(s) in charge of your loved one – usually neurologists and physical therapists. Ask as many questions as you see fit to understand the condition afflicting your relative. Keep a diary or log of the comings and goings of doctors and nurses. The caregiver can also serve as a liaison for other relatives and friends; updating them on the patient’s condition, encouraging them to visit – or discouraging them in the case of overly sensitive people who may be traumatized by the sight of their loved one in a ventilator. Additionally, the caregiver can perform certain duties that may or may not fall within the nurses’ job description – but which they may be too busy to fulfill – such as personal care and grooming. Furthermore, your loved one will undoubtedly appreciate if you remember to turn him or her in bed; immobilized patients often develop bedsores (also known as pressure ulcers). This can actually be a delicate task, so it’s not a bad idea at all for nurses and caregivers to join forces to prevent the person’s arms or legs to get caught in the bedrail. Alternatively, you can ask the hospital whether it can provide computerized air-beds which can be inflated and deflated side-to-side, providing continual turning. You can also read to the patient or simply, like Almodovar suggested, talk to her or him.

Rest assured that Guillain–Barré syndrome is temporary; it’ll end sooner or later. However, it could be said that caregiving really starts with recovery – or even before actually. While the patient is still bed-ridden, the caregiver can help by moving the patient’s arms and legs to help keep the muscles retain strength and flexibility. This is just the beginning, though. People who have suffered a bout of GBS often face a long, hard road to recovery, which may take anywhere from months to years. The first step on this journey is the transition to a rehabilitation hospital where physiatrists and physical, occupational, recreational and speech therapists – as well as psychologists and psychiatrists – will help your loved one return home to his or her daily lives. Speaking of which, the caregiver should consider undertaking a few home modifications ahead of the patient’s return – including the acquisition of a number of home care medical supplies –, as outlined below:

Home modifications for Guillain–Barré syndrome-recovering patients


·         Ramping.

·         Good lighting.

·         Cover from the elements.


·         Raised toilet seat.

·         Grab bars on both sides of the toilet and in the shower.

·         Shower seat.

·         Hand-held shower.

·         Towel hook.

·         Shower without glass doors.

·         Portable commode.

·         A wash basin if the patient cannot stand upright to use the sink.

·         Soap-on-a-rope or liquid body soap.

·         Electric shaver.

·         Sonic or electric toothbrush.


·         Velcro® strips, moving buttons, or a temporary inexpensive wardrobe.

·         A key ring put through the end of a zipper pull for a better larger grip.

·         Shoes that are comfortable and attractive to the patient – a larger pair to fit a larger foot, if one foot is more swollen than the other.


·         Pill organizer.

Assistive devices

·         Molded ankle-foot orthosis.

·         Eating utensils.

·         Wheelchair.


Overall, the caregiver will have more to do when their loved one returns home, and progressively less and less as the person regains strength and endurance. All things considered, a medical care team comprising some of the professionals mentioned above and others should supervise continuing care from the moment the patient with GBS is admitted to the hospital, until the person goes back home – and perhaps beyond that point. But guess what? The caregiver is an integral member of that team; maybe even the most important one. After all, the caregiver knows the care receiver better than any doctor or nurse does. Furthermore, the caregiver has to be on the lookout for a million little details, such as making sure the house is well equipped to host someone recovering from Guillain–Barré syndrome, or making sure that their loved one is using a wheelchair safely, or checking that the bath water is not too hot if the patient’s senses have been compromised, and so and so forth. Not to say that while healthcare providers are burdened with the technical aspects, it is the caregiver who bears the emotional brunt – many a time even more so than the actual patient. And it is not unusual for a caregiver to have to drop everything after a loved one is diagnosed with GBS.

Last but not least, once the patient fully recovers and goes back to work and life in general, there is the possibility that the caregiver – who has grown accustomed to this role for what may might have been years – starts to feel useless and obsolete. He or she now has to go through his or her own process of re-adaptation. In a few words, Guillain–Barré syndrome affects both care receiver and caregiver physically, mentally, and emotionally, and therein lies the importance of healthcare providers for both parties. In the end, caring for someone with Guillain–Barré syndrome is a team effort.

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