3 Preparing the family

Stroke is sudden and unexpected and, with little or no time to prepare, it can take a huge physical, mental and emotional toll on the families of stroke survivors. The majority of stroke survivors are able to adjust to life as it is after the stroke, but some find that they need a little help to make the change.

Some carers and family members find that their loved one acts differently after their stroke and the dynamics of the relationships that the stroke survivor has with others can alter as members of the family take on new roles, such as providing assistance with day-to-day care or becoming the breadwinner.

If your loved one has recently been affected by stroke, it is helpful to be aware of some of the potential consequences:

• Anxiety: some stroke survivors find that, understandably, they feel very uncertain about general daily life after their stroke. This can develop into an anxiety-based condition which prevents them from making progress in rehabilitation and completing daily activities.
• Aphasia: aphasia (or dysphasia) is a difficulty understanding what is said to you and/or expressing yourself. Aphasia does not damage intelligence, but does affect how someone can use language.
• Changes in mood: stroke may have significant impact on the survivor’s abilities and as a result their view of and confidence in themselves. It is quite natural to feel low in mood and need a period of adjustment to cope with the situation.
• Cognitive difficulties: a stroke often affects how the stroke survivor understands the world around them. This includes how you see and hear, how your brain recognises people and objects and how it remembers and organises information. An occupational therapist or clinical psychologist can identify and explain the problems which are occurring for the stroke survivor and give advice on adjusting activities and routines, so that they can continue to be as independent as possible.
• Depression: stroke survivors can often become disheartened after their stroke. However, this may progress into depression which makes it difficult for the stroke survivor to engage in rehabilitation or in daily life. Appropriate treatment may include talking therapies or medication.
• Dysarthria: slurred or distorted speech, due to changes in the control of muscles in the mouth and throat.
• Dyspraxia: an inability to control and co-ordinate movements. This can affect the co-ordination of arms and legs, or the muscles used in talking.
• Emotionalism: strokes can lead to personality changes and emotional imbalances. Stroke survivors often find that crying, anger and laughter occur more easily than they did before the stroke. In some patients ‘emotional liability’ occurs, when crying and laughter become uncontrollable.
• Fatigue: even after a relatively mild stroke or a mini stroke (TIA), many people say that they feel completely exhausted. Stroke survivors often describe fatigue as one of the most difficult problems they face. There are a number of approaches and techniques for managing fatigue to consider.
• Frustration: when everyday activities become difficult to do, it is unsurprising that the stroke survivor becomes frustrated. Sometimes this frustration builds up into anger at the situation which has resulted from the stroke.
• Incontinence: problems with bladder and/or bowel control are very common after a stroke. The stroke may have damaged the part of the brain that controls the bladder and/or bowel, or people may not be fully aware of their surroundings.
• Neglect: some stroke survivors neglect the side of their world corresponding to the side of their brain which was injured by the stroke. For example, a stroke survivor with left-sided neglect may ignore the left-side of the face when washing.
• Swallowing: nearly half of people who have had a stroke will initially experience difficulty swallowing (dysphagia). Without treatment people with dysphagia are vulnerable to dehydration and undernutrition, as well as infection caused by food or fluid ‘going down the wrong way’.
• Seizures following stroke: approximately 15% of stroke survivors will have seizures at some point after a stroke. It is more common in people who have had a very big stroke. Symptoms of seizure may include periods of vacant episodes, twitching or jerking of muscles and limbs and sometimes loss of consciousness for short periods.
• Sex after stroke: having a stroke does not have to mean the end of being sexually active, although changes may be involved. Physically, stroke can affect men and women in different ways. A woman may find that sexual arousal takes longer after her stroke and there may be a loss of sensation or a degree of vaginal dryness. A man may find he is unable to achieve or sustain an erection. Many people worry that having sex will raise their blood pressure too high. In fact, sex only affects your blood pressure in the same way as exercise does.

All members of the medical and rehabilitation team will be happy to discuss any concerns you may have about changes in you or your loved one' reactions or behaviour since the stroke.