Preparing to come home after a hospital stay for brain injury: a guide for families

Discharge: the moment it all becomes real

After weeks or months in hospital, discharge has two faces. On the one hand it is good news: the patient is stable enough to continue recovering outside the hospital. On the other, it is the moment when the family takes on the weight of a kind of care nobody has really prepared them for.

This guide is written for families at that moment: the first days and weeks after a patient with a brain injury comes home. Whether it follows a stroke, a traumatic brain injury, a spinal cord injury or another neurological condition, the challenges are similar, and there are concrete things that can make the transition safer and more manageable.

Before leaving hospital: questions to ask

Before signing the discharge papers, there is key information the family needs to be clear about. If you have not been given it explicitly, ask for it:

• What are the warning signs? Which symptoms mean calling emergency services? Worsening speech, new weakness, seizures, fever, difficulty swallowing.
• What medication is to be taken? Names, doses, timing, what it can be combined with and what must be avoided.
• When and with whom is the follow-up? Neurology, family medicine, rehabilitation. Dates of the next appointments, or instructions for booking them.
• What can and cannot the patient do? Shower alone? Walk? Climb stairs? Drive? Work? These restrictions should be set out clearly in writing.
• Has rehabilitation been prescribed? When does it start and where? If it has not been prescribed, how do you request it?

Preparing the home: basic adaptations by condition

There is not always time for a thorough adaptation of the home before discharge, but there are basic measures that significantly reduce the risk of falls and make daily life easier:

For patients with hemiparesis or balance problems (stroke, traumatic brain injury)

• Remove rugs and cables from the floor.
• Install grab rails in the bathroom (beside the toilet and in the shower).
• Use a shower chair or bench.
• Make sure corridors are clear and well lit.
• Check whether the bed is at the right height for transfers.

For patients with a spinal cord injury or using a wheelchair

• Access to the home: ramps, doorways at least 80 cm wide.
• Bathroom adaptation: level-access shower, room to manoeuvre.
• A height-adjustable bed, or one with a side rail.
• A desk or dining table at a height reachable from the chair.

For patients with dysphagia (difficulty swallowing)

• Follow the food-texture instructions given by the hospital's speech therapist or dietitian.
• Keep thickener available if it has been prescribed.
• Never leave the patient eating alone until the dysphagia is under control.

The first days at home: what to expect and how to handle it

The first days at home are usually harder than expected, even when the family has prepared. Some things it helps to know:

• Fatigue is normal and does not mean going backwards. The effort of adapting to a new environment exhausts the patient. Frequent rest periods are necessary, not a sign of deterioration.
• Emotional changes are common. Irritability, tears, apathy or anxiety are expected reactions to loss and upheaval. They should not be read as failure or a poor prognosis.
• Routine helps. Structuring the day with set times for getting up, eating, exercising and resting reduces the sense of chaos and makes it easier for the patient to take part in their own recovery.
• The carer needs to sleep too. Set up a system of shifts or support from the start so the main carer can rest. A carer burning out early is one of the factors that most undermines the quality of care.

Starting rehabilitation: the steps to take

Rehabilitation, at home or at a centre, should begin as soon as possible. Every week without treatment is a week of neural plasticity going unused. The practical steps are:

• If the hospital has prescribed it: book an appointment at the designated rehabilitation centre as soon as you can, without waiting for «the patient to settle in».
• If it has not been prescribed: ask the GP for a referral to rehabilitation. If the wait is excessive, consider private rehabilitation rather than losing time.
• Keep a progress diary: note each week what has improved, what is the same and what has got worse. It is valuable information for the professionals, and it helps the family recognise progress that would otherwise go unnoticed.
• Do the exercises at home. Treatment at a centre is essential, but daily practice at home between sessions multiplies the results. Ask the physiotherapist or speech therapist for a home programme.

Support resources for families: you do not have to do it alone

There are support resources that many families do not know about or do not claim. The ones listed here are the Spanish ones, which is where the centre and its patients are:

• The hospital social worker: can advise on dependency benefits, financial support, day centres, respite services and home help.
• Patient associations: in Spain, FEDACE (brain injury), ASPAYM (spinal cord injury), ASPACE (cerebral palsy) and similar organisations offer information, support groups and complementary services.
• Telecare and home help: municipal social services can fund or arrange home help according to the recognised level of dependency.
• Psychological support for carers: a carer's emotional exhaustion is a real health problem and deserves professional attention.

When to consider a specialist neurorehabilitation centre

If conventional rehabilitation is not proving enough, if progress has stalled, or if the patient has potential for improvement that is not being used, it may be time to seek an assessment at a centre specialising in neurorehabilitation.

At Centro Sanitario Foltra we see patients at every phase of recovery from neurological damage: from the subacute phase to years after the injury. If you want to know whether we can help, the first step is an initial assessment, with no obligation.

This article is particularly relevant for the families of people finishing hospital rehabilitation after a stroke or a traumatic brain injury. If you are going through that, it may also help to read about caregiver burnout and how to recognise exhaustion.