Remember they are socially isolated and will need to be stimulated. Tell them what day it is and talk about what is happening in the outside world. Read extracts from a national or local newspaper and encourage friends and family to send cards and texts about what they are up to. Remember to include them in all conversations, even if they can’t respond verbally.

Make use of your tech! Read to them or offer to play an audio book on their smartphone or tablet. Download films, favourite TV shows and music onto their device and watch or listen together if you can, with one earbud each.

Financial concerns may be causing anxiety, especially if the patient is the main wage-earner. Get in touch with the Social Worker at the hospital who will advise on benefits. Alternatively, Citizens’ Advice offers free expert advice which you access online, or by phoning your local office. Stay in regular contact with employers and make sure you understand the absence and returning to work processes. There is more information about returning to work later in the booklet.
GAIN may be able to help through our Personal Grants Scheme with travel costs for frequent journeys visiting a family member in hospital.

The little things you can do will mean a lot. Do they need a hair wash or a shave? Do nails need manicuring? Can you help by massaging their hands or feet? Eating and drinking while you’re visiting might have a negative impact, if they are unable to swallow anything, so make sure you have something before you arrive.

Some patients have pain in the acute stage, others as recovery kicks in, and some have no pain at all. Try to understand what pain they have, if any, and the frequency and type of medication being given to alleviate it.

GBS patients tire easily, may be on sedative drugs and tend to nap quite frequently. They might not want visitors over and above one or two close family members, especially in the early stages following diagnosis and the start of recovery.

At the end of your visit, make sure you leave them in the best possible frame of mind. Turn off any device that might cause irritation or disturbance and make sure they have what they need or can attract attention if required.

As things improve, they will be taken off the ventilator, often starting with just a few minutes and building up gradually. Patients can get quite panicky at the beginning of this procedure as they have become reliant on the ventilator and might not believe that they can breathe again without it. Reassure them that their natural ability to breathe is returning and that this is the start of getting well.

Once off the ventilator, it is likely that they will soon be transferred to a general ward for a time before moving into a rehab unit or being discharged home. Moving out of ICU, where patients are monitored continuously, can be stressful in itself, but it’s all part of recovery, and no one will be moved until the medical team is satisfied that they are ready.

Your role is to offer love, comfort and reassurance during this difficult period. Try to remain calm and positive and give lots of encouragement on progress. Keep yourself well informed by the medical staff. Writing a few lines each day in a journal will help you keep a perspective on progress. You can share this over the coming weeks to show how far they’ve come since those early days. For close family, this period of the illness can be an exhausting time of stress, uncertainty and disruption, as you struggle to maintain other commitments alongside frequent hospital visits, so don’t forget to look after yourself and stay well.