- Consider all your options— there are many services available;
- Appreciate your family member for who they are;
- Re-establish your personal contacts and networks;
- Enable other family members to become involved & responsible for the Stroke person;
- Get assistance before reaching breaking point;
- Initiate new interests, pursuits and hobbies;
- Validate each other’s feelings – be honest;
- Embrace change and try to be flexible;
- Realistic expectations of yourself and your situation are important;
- Sex can remain an important source of enjoyment in a relationship.
- Be patient – It may take some time to come to terms with changed circumstances.
- Get outside assistance, when necessary – talk to people about your situation.
- Carers should look after themselves – take breaks to do things you enjoy.
- Acknowledge and discuss problems – do not pretend that everything is all right.
- Decisions may affect other family members. Involve them when appropriate.
Your Carers Association can assist you. Contact 1800 242 636
Rehabilitation Back to top
Rehabilitation is a process where you are assisted to relearn or find new ways of doing activities or functions lost as a result of the Stroke. A team of health professionals works with you to assist you to reach your maximum level of functioning.
Rehabilitation may take place in a variety of settings
There are various models of Rehabilitation utilised in NSW Hospitals. Your rehabilitation will begin as soon as you are medically stabilised. Rehabilitation will occur in one of the following settings:
- Rehabilitation services located within the Stroke Unit
- A rehabilitation setting within the same hospital but located in another ward
- A Specialist Rehabilitation Hospital
- A Private Hospital that specialises in Rehabilitation.
- Rehabilitation in the Community
It is important to remember that rehabilitation is very different from being “treated” in hospital (acute care) and convalescent or nursing home care. In a rehabilitation setting you are not considered medically ill so do not need further hospitalisation to “get better”.
This is when your recovery from Stroke becomes a great deal harder.
The philosophy of rehabilitation is to maximise your independence. This is achieved through goal setting, which you direct with guidance from the specialised allied health staff.
Your clinicians hold regular case conferences to update all team members on your progress in regard to your goals. It is important to know when these occur and for you and your family to have input in to these discussions.
In Rehabilitation it is expected that:
- You are much more involved in your treatment.
- You are encouraged to do as much for yourself as you can safely
- You are expected to actively participate in therapies and other activities.
- Rest periods may be shorter than you are used to in the acute hospital.
- You may also be encouraged to eat your meals with others in the dining room.
Highly trained medical, nursing and allied health staff work closely with you, your family and friends.
Length of Stay
Rehabilitation begins while you are in the acute hospital or Stroke Unit and continues after you go home, taking place over months and even years. There may be changes in your functioning over time; sometimes these changes will happen quite fast, other times they may happen very slowly. Each person progresses through rehabilitation at his or her own pace.
You may not regain all of the abilities you hoped to, and your rehabilitation may continue after discharge, either at home or via outpatient treatment.
Your stay in the Rehabilitation Centre will depend primarily on how you progress with your recovery. Staff will meet with you and your family at regular intervals to discuss your discharge options.
Your stay may be longer or shorter than the average, as everyone makes progress at his or her own pace.
It is important that you take an active role in therapy and rehabilitation by:
- Keeping track of your daily schedule and attending therapies and meetings on time. In most Rehabilitation Hospitals, appointments are listed on a weekly timetable. Remember to keep track of the time of your appointment and who you saw each day.
- Working towards increasing your independence by using the skills you have learnt in therapy in your daily routine
- Practising some exercises in your own time if your therapist suggests that you should do so. This is an area where your family and carer can become more actively involved. Knowledge of daily exercises is important as they may be relevant to continue when you go home
- Raising any concerns or problems you may have with the relevant therapist, or the Nurse Unit Manager
It is difficult to provide definite answers about your expected progress in rehabilitation and the likely outcomes as each person’s pattern of injury or illness and potential for recovery is different. No one wants to take away hope or give unrealistic expectations. The best solution is to work on improving the functions you currently have and evaluate your progress regularly.
It is important for all members of the family to be informed and involved in all aspects of treatment. On admission to a rehabilitation facility, you are assigned a team of Health Professionals who are primarily responsible for your therapy, treatment, education and discharge. This team may include a nurse, doctor, dietitian, occupational therapist, physiotherapist, psychologist, recreation therapist, social worker and/ or speech pathologist.
It is important to have a single person to be a point of contact about your rehabilitation program.
Physical effects Back to top
Feeling extremely tired after a Stroke is very common. People tell us that this goes on for quite a long time. Even young people feel fatigued for at least 6 months after a Stroke, so it is important to allow yourself plenty of time to rest and not feel bad about it.
A common consequence of a Stroke affecting the right side of the brain is neglect. The person affected by Stroke does
not take note of, or perform actions, within space to the left of their body midline. Neglect may be accompanied by paralysis on the left side, or may occur when there is no paralysis. The symptoms of neglect usually improve as recovery continues.
The right hemisphere of the brain is primarily concerned with the non-verbal world. The most important function of the right side of the brain is the understanding of space. We need it to find our way around, position our bodies relative to other objects, draw, read, write and build things. Since every Stroke, and every person, is different, neglect can vary in type and severity.
Effect on movement depends on the nature and severity of the Stroke, the person’s age, weight and the presence of medical complications. Paralysis, muscle weakness, reduced perception of body position, and sensory awareness may occur as a result of Stroke. Consequently, rehabilitation programmes concentrate on sensory as well as movement re-education. There are many techniques involved, which vary according to the nature of the Stroke. Members of the Stroke Team, particularly the physiotherapist, will teach these techniques.
Position and Transferring
Placing a paralysed limb in the correct position will assist the person to be more comfortable. Lying on one’s side is a good resting or sleeping position. An affected arm should be supported on a pillow. If a leg is the problem, another pillow placed between the knees will help. Sheepskins are useful for comfort and protection. Bed covers should be loose. Do not pull a person up to a sitting position by their paralysed arm. This may cause the shoulder to dislocate. A firm mattress and attention to bed height make it easier to get in and out of bed.
Balance, Standing and Walking
Paralysis of limbs is the most visual sign of Stroke, which will cause difficulty with standing and walking. A person’s balance may also be impaired by Stroke, leading to walking and standing difficulties. A person may not realise that their foot is in an awkward position when sitting or standing, or may not leave adequate space when walking around a piece of furniture.
The Physiotherapist will advise the best techniques on mobility and show you, if necessary, appropriate aides, such as a frame or a four-pronged stick.
Communication involves many parts of the brain and a Stroke can affect speaking, understanding, reading or writing. Common speech problems following Stroke may be:
Means people with unintelligible speech or no speech at all. However they may be able to communicate their wishes by writing or gesture.
People who have slow or slurred speech, stemming from weakness of the mouth, tongue or voice box.
Where a person has a problem expressing or understanding speech, resulting from Stroke. They may have difficulty naming objects, finding the right words, expressing an idea in words, speaking fluently, repeating, understanding simple instructions, or following the thread of a conversation or television programme.
Reading, writing and basic mathematics skills may be impaired. Reading may also be affected by disturbances of vision, such as
- An inability to see one half of the page,
- Eye movements resulting in inability to smoothly scan the lines on a page.
Writing may be difficult for someone with a weak arm, but they often manage by holding the pen in the other hand.
Psychological effects Back to top
Memory and Thinking
A Stroke does not affect all aspects of the brain equally. Neither does it affect all aspects of memory and thinking. Depending on the part of the brain that has been damaged, the severity and recency of the Stroke, varying problems with memory and thinking occur. Many people affected by Stroke find their ability to remember day-to-day events, people’s names or even faces is not as good as previously.
It may be difficult to follow instructions, or find one’s way around new places. It is important to allow time to re-learn these things. Notes, prompts or other devices can assist. Others may find solving simple problems, reasoning through a task or organising themselves difficult, needing extra supervision and guidance. Management of home affairs such as budgeting, handling new equipment or organising a meal may require assistance.
Changes in personality following a Stroke may be rare but often very disturbing to the family. Personality is the unique combination of an individual’s thoughts, feelings and reactions toward themselves, others and their environment. After a Stroke some may not seem the same person as before. The way in which they think, feel and react may be altered. Family and relatives need to understand the new and puzzling changes. Problems and activities once tackled easily may be difficult or impossible, while other tasks are unaffected. People may become confused, self-centred, uncooperative and irritable, and may have rapid changes in mood. They may not be able to adjust
easily to anything new and may become anxious, annoyed or tearful over seemingly small matters.
Loss of control over emotional expressions such as laughter or crying is called emotional lability. Physical changes within the brain itself can temporarily interfere with or destroy the normal controls over emotions. A person affected by Stroke may laugh or cry uncontrollably for no apparent reason and be unable to stop. Family and friends sometimes misinterpret the laughter or tears and attempt to scold or console them accordingly. Being able to understand that this is a result of the Stroke and offer support in these situations is the key.
A person affected by Stroke may experience decreased motivation and impaired ability to initiate an activity. These issues are a direct result of changes within the brain. With mild motivation problems, the person appears apathetic but carries out normal activities quite adequately, particularly familiar activities. In more severe cases, some people do little beyond simple self-care tasks, and to the observer may appear disinterested. This is not the case, but simply a side effect of Stroke. Gentle guidance, prompting, support and encouragement will assist.
Depression often occurs in people who have had a Stroke. They mourn the loss of their previous self. They may have many fears, uncertainties and altered feelings about themselves, as well as experience losses in social activity, ponder questions about future prospects, financial security and returning to work. The person may see little purpose in living and express thoughts of death.
In situations such as this, depression may become an obstacle to rehabilitation. They need reassurance, time and understanding. People who talk of dying may be signalling for assistance, for someone to listen and share their problems. Depression may be treated with medication and psychological counselling. There are varying degrees of depression, and initial recognition that depression has developed is an important step. Depression is a highly unrecognised side effect of Stroke and it is necessary to persist until the condition is correctly diagnosed and treated.
According to a Report in Stroke, Journal of the American Heart Association, “Because many Stroke patients are in the same age group in which Alzheimer’s disease is prevalent, medical professionals can’t always be sure of the causes of dementia.” Robert G. Robinson, MD of the Department of Psychiatry at the University of Iowa, says, “The symptoms of dementia due to Stroke or Alzheimer’s disease are similar. The difference is that, in Alzheimer’s disease, the condition is progressive, but, in Stroke patients, the symptoms are at their worst at the time of the Stroke and then tend to improve somewhat.”
The situation is complicated by the fact that depression is often considered a “natural” part of a person’s post-Stroke condition and in many cases goes untreated. “Our findings provide another compelling reason to evaluate all Stroke patients for depression and to treat depression aggressively when it’s found”, Robinson says. (For more details see Depression following Stroke)
Drepession after Stroke Back to top
Depression is a generic term that covers a number of different situations where the common factor is the feeling of depression or a state of depressed mood. After a Stroke, depression may occur but the situations in which it arises will lead to different types of treatment needs. Depression as an illness is common in the general community and the incidence of it is increasing with time. There are many reasons why a person may get depressed and almost as many ways to treat it. The two common terms used to describe depression after Stroke are major depression and reactive depression.
This is a formal clinical diagnosis that may be made be a psychiatrist/psychologist or general practitioner. In a major depression there is a state of low mood or a loss of enjoyment of day-to-day activities. Sleep may be disturbed with a characteristic pattern of waking in the early hours of the morning and not being able to return to sleep. Appetite is poor and weight loss common. Constipation, a sense of physical slowing, social withdrawal and a loss of sexual interest are the classical symptoms. Suicidal ideas, feeling of guilt and worthlessness are also described.
The person may have a past history of depression or a family history of depression. It is possible especially if the Stroke has been on the right side of the brain that the person will then develop a depressive illness with these risk factors. Having a Stroke in the left front part of the brain is a risk factor for the development of depression regardless of a past or family history. One in four people will after a Stroke develop a major depression. The importance in recognizing the condition is that is can be treated. In those people who have a Stroke and become depressed, failure to treat results is a less than optimal rehabilitation outcome.
The management of a major depression will involve the use of medication. These antidepressants are used to correct the chemical imbalance that has been precipitated by the depression. Treatment will usually only involve one medication and will probably need to be for 6 to 12 months. In combination with the antidepressants, cognitive therapy should also be incorporated into the treatment plan. This is a talking therapy that helps a person look at how their thinking style may be unhelpful and therefore maintain the depression. Usually ten sessions are allocated to help a person with depression. Obviously this therapy may have to be modified if the Stroke has affected the communication areas.
This is a term used to describe a depressed state that occurs after an event or change. Typically reactive depressions are less severe than major depression and there is little role for medication. A reactive depression is common after Stroke and may occur in combination with a major depression.
When a person has a Stroke there are a number of things that will happen. For many people, if the Stroke involves hospitalisation it will be their first contact with a system that is new and therefore they are unfamiliar with. The common theme in reactive depression is the state of transition. Most people fear change and it is seen as a stress. All of us grow up with a set of coping mechanisms. The commonest scenario is the half empty jug situation, a person with a positive cognitive will see the jug as half full, a more negatively inclined person will be upset that the jug is half empty.
How a person deals with transition will be influenced by their coping mechanisms and their set pattern of cognitive sets (belief systems).
A Stroke is a time of transition. The person who has the Stroke may have to learn how to do things differently; they may need to rely on someone else for things that in the past they could easily do themselves. Often the greatest transition after a Stroke is the change from independence to dependence. However, other changes also occur – there may be the change from working to retirement, physical activity to inactivity, acute mental ability to slower thinking, driving oneself to relying on others and the list goes on. The transition phase is also for the family and partner of the person who has had the Stroke and they may also go through their own reactive depression.
The most important feature of the reactive depression is the need to recognise that it occurs and that it is okay to have some depression. Following the recognition of the state is the process of dealing with the depression. This is a dynamic process and the focus of the treatment will need to be on the current issues as the situation post-Stroke is usually a changing one.
The management of the transition involves talking therapies. This can be obtained from rehabilitation counsellors, psychologists, psychiatrists, and general practitioners. Community health centres and the local hospital are often the place you will find people with the necessary expertise to help in this time of transition. The rate at which the person will respond to the treatment will vary according to how flexible they are in their thinking patterns and how great the changes have been. Every person will have his or her own unique timetable of adjustment.
The process of the counselling is to identify unhelpful thinking patterns and suggest ways that the person may change their thinking style. Stages of change are mapped out for the person so that they can see the road to recovery. In the course of the treatment, the therapist aims to help the person face the changes that have occurred, reduce the patient’s fear of the changes and see that the new situation does have positives. Transition counselling needs to occur in conjunction with all the other post Stroke therapy. Often it may occur very informally in the course of the various therapies. Overall, people will respond to the therapies and recover.
Article courtesy of Dr. Patricia Jungfer
Social Aspects Back to top
If the Stroke affected person is the main income earner in the family, a sudden loss of income exaggerates the anguish experienced. The Social Worker can assist by liaising with the employer for payment of sick leave, or commencement of sickness benefits is leave is exhausted. If return to work is not possible the person is eligible for a Disability Support Pension. If the person is retired the Mature Age Allowance or Age Pension will continue as before. Centrelink will provide further information. A Stroke often serves as a reminder of the importance of keeping one’s financial and legal affairs in order.
The Social Worker has a most important role in this respect. Very occasionally, a Stroke may permanently impair decision-making abilities. This may be a serious problem, particularly when a person is in a position of responsibility or of influence or controls substantial assets. There are legal means for accepting responsibility for a person’s financial affairs, but this requires careful and discrete deliberation between family, doctors and solicitors. Difficulty in expression does not necessarily mean that intellectual faculties are impaired.
The Stroke affected person’s role in the family, may change dramatically, particularly in the short term. When the person cannot fulfil a role, it may be taken over by the spouse or a family member. There may also be complex cultural issues pertaining to specific cultural backgrounds, which will need to be considered. These extra responsibilities may include managing the finances, looking after the garden, doing household chores and shopping. The person who has had a Stroke may welcome such a change of roles or it may cause depression and loss of self-esteem. Sympathetic discussion of these problems will lessen the impact.
Occasionally, other family members are incapable of assuming the new responsibilities, either because of age, illness, inability to cope with increased stress, or lack of proximity, or simply lack of desire. It should be noted that some Stroke affected people may have difficulty accepting outside assistance, particularly the elderly, and will stubbornly reject assistance of this nature, unless the matter is broached tactfully. Return of the Stroke affected person to their family can be trialled, first for a day, then for a weekend etc. This provides opportunities to resolve difficulties, and for both the Stroke person and their family to become confident that they will manage. Should the person or their family be unable to manage, then placement may be needed in special accommodation or a nursing home. These decisions must never be taken lightly, as this can be extremely traumatic for the Stroke person.
Many people affected by Stroke and their partners are afraid to resume sexual relations, fearing sex might provoke another Stroke. They are also embarrassed about discussing the matter with doctors. Sexual intercourse seldom causes Stroke, and by the time the person has returned home, any risk has passed. Stroke does not physically impair one’s capability for sexual intercourse, but there may be a number of psychological problems inhibiting satisfactory resumption of relations. If this occurs, your social worker or general practitioner can refer you for appropriate help.
If the Stroke affected person regains only partial independence, enormous stresses and strains can be placed on a partner, which may cause sleep disturbance, depression and anxiety. It is virtually impossible for one person to do all the tasks of both partners, so you should not be embarrassed about enlisting the help of a handyman, local service club and community support services. A Stroke person can be very demanding, and it is often difficult to carry on with every day activities. However, it is most important for the family to maintain social contacts and outside interests.
Stroke affected people and their families often worry about the likelihood of further Stroke and can be on tenterhooks all the time. Such anxiety is common and should be discussed with members of the Stroke Team. This often places enormous stress on the family due to the anxiety related demands placed by the Stroke person on the family or reluctance of the family to allow the Stroke person to return home and or live independently.
When Stroke occurs in the younger age groups special issues in relation to children may need to be addressed. Anxiety that a further Stroke will occur is just one factor. Others include the change in body image and change in the ability to interact as they were prior to the Stroke (care for, play, talk, express emotions) and these may need to be addressed. These issues will need to be discussed with both the children and the Stroke person.