Many individuals spoke about the importance of social support as they recovered from their stroke. They spoke highly of family and friends who rallied around to assist the person as they adjusted to new routines and environments.
When social support is limited or non-existent
In some cases support from friends, family or a significant other was not available. One man commented that formal care providers should not assume that families and friends are available and that this should be taken to account in an individual’s care plan. On the other hand, a woman who had been divorced felt that the absence of a partner forced her to do more on her own which helped her recovery and regain independence.
Ralph feels that care providers should not assume that family and friends are always available.
Jackie explains that being unmarried forced her to do more for herself and be less reliant on…
Initial impact on family and friends
Individuals who had social support noted that the initial impact of the stroke on family and friends was nearly always shock, disbelief and fear, particularly as the stroke was often unexpected. Some people felt that they had been very close to dying and that this had been upsetting and difficult for their family to come to terms with.
Most people said that families and friends rallied round and were a tremendous support. A few, however, took some time to adjust and where initially reticent to visit the person in hospital. One younger woman felt that she needed to protect her parents from the stroke and found it easier to ‘cry on the shoulder’ of a social worker rather than worry her parents.
Her parents were badly affected by the stroke and didn’t initially come to visit her. She wanted…
Visits in hospital
Visits from family and friends in hospital were invaluable to most and several people commented on the huge time commitment and sometimes long distances that people travelled to visit every day. Some people had not wanted to see anybody for the first few days after the stroke or had been concerned that young children might be scared by slurred speech or appearance.
Impact on young children and grandchildren
The impact on children and grandchildren caused considerable concern particularly to those who had young children. The daughter of one woman had not wanted to visit her in hospital which she found upsetting but totally understood. Some noticed that their grandchildren were more wary of them because of changes in their voice or appearance although they usually came to accept the changes with time.
Their daughter’s son was initially wary of her husband because his voice had changed by the…
Two women with young babies had been eager to continue caring for them as they were changing every day and they hated missing out.
People often worried about the long-term impact of their stroke on their children, on top of the usual life changes young people go through, and made huge efforts to try and make their lives as normal as possible. Whilst some felt that children had come through relatively unaffected a few noticed problems months and even years later which had required counselling.
She tried to keep things as normal as possible for her daughters but worries that they have been…
A few years after her stroke her son needed some counselling because the experience had caused…
People often felt that their impairments interfered with their roles as a parent or grandparents, for example being able to read or help in education because of communication difficulties or worrying about holding a child because of weakness and numbness.
Worries about holding her young grandson because of loss of sensation but hopes that things will…
Hopes and aspirations for children and grandchildren often spurred on recovery or kept people going when they were feeling down. Events like seeing a child or grandchild married were important goals.
Set himself a goal of being able to speak and stand for his daughter’s wedding and got a standing…
Changes in roles and responsibilities
Regardless of age a stroke can have a huge impact on people’s roles and responsibilities in the family and on their levels of independence.
Most of the people that we spoke to returned home after their stroke and many of these had a partner at home to help out. Those without support sometimes temporarily or permanently stayed with or got help from relatives – younger people from parents and older people from adult children. Care was sometimes provided through the social services (See ‘Continuing care at home and institutional care after a stroke’).
People who had had a stroke found it difficult that their spouse had to take on extra responsibilities – they felt guilty sitting by and watching them struggle although said they were very grateful for the support. Men in particular found it difficult to see their female partners doing manual tasks or dealing with finances.
Some partners had initially taken time off work although most eventually returned. One man felt guilty that his partner had to come home from work and start cooking and cleaning, tasks which they used to share. He was pleased to be able to get back to helping out. Another who could no longer work found it difficult to take on household chores while his wife went out to work.
He felt guilty seeing his wife go out to work and then come home and do the house work.
Many felt that they had lost independence because they were so reliant on help from others. This was particularly a problem when people needed help with washing and dressing or could not go out or travel alone.
Some had found it frustrating because they wanted to resume doing some of the things they used to do and were not allowed to by concerned or over protective relatives. Whilst this could lead to disagreements several people advised pursuing the things that you wanted to achieve as it helped with recovery and overall mood.
She had several disagreements with her mother because she was helpful after the stroke but was…
Advises other peoples families to not discourage the person from trying to do things for…
One woman said that her children were always suggesting things which she did not necessarily want or need.
Support for family members
Several people recalled that there was very little support for family members, although some said it was available but was hard to access.
They think that support is mainly given to the patient and should be more readily available for…
One father commented that he is concerned about what will happen to his son (who had a stroke) when he and his wife pass away.
The support of friends had been important to many people particularly those without family support. Initially visits in hospital and cards and letters had given people a real boost. Later people valued trips shopping, days out and people that came to visit them. One man had been on a weekend away with friends, who had done everything to accommodate him including lifting his wheelchair. Whilst some people valued being able to talk about the stroke with friends others preferred to talk about other more enjoyable things.
Lives alone but feels her friends have been very supportive and have given her lifts everywhere.
His friends were happy to take him away for a weekend and didn’t have a problem with him being in…
Not all people kept up with friends. Some said that friends reminded them of the active person they used to be and did not keep in touch. Others said friends drifted away and were not willing to make the effort to visit them. Older people found that their contemporaries also experienced poor health. Whilst this meant that they were sometimes understanding it also made it difficult to stay in touch.
Meeting new people
Strangers and less close acquaintances were sometimes unkind in the things that they said or did. Some people had been accused of being drunk because of a stagger or limp. Those in wheelchair had occasionally been ignored and some thought that people associate stroke with a mental impairment.
People with speech impairments felt it was important for them to explain that their problems so that people would be patient and speak slowly if necessary (see ‘Speech and communication after a stroken’).