Continuing care at home and institutional care after a stroke

Stroke can result in permanent physical impairment which makes daily tasks hard or impossible. People who have had a stroke are sometimes provided with continuing care on their return home from hospital. 

People talked about a range of different support they had, including visits from a stroke nurse or community rehabilitation team, occasional help with cleaning tasks or daily carers to help with personal care. A few people that we spoke to were cared for at home by family members but had used respite care to give their family members a break. Others had eventually decided to move permanently into a care home. Some people had a hard time accessing care and wished that more had been available, particularly in the earlier stages following hospital discharge.

Difficulty accessing community services
Most people accessed some level of support in the community after leaving hospital; however some people experienced great difficulty in accessing care. Some were not aware of what was available, and had to navigate on their own, while others had difficulty accessing community care due to long waiting periods, cost, or lengthy transportation.  

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Finding useful services in the community
Some people sought out additional community supports on their own including community swim programs, programs in the local gym, or pilates and art classes. These services, which were not always known to or recommended by health professional, helped them to adapt to life after their stroke.

Community stroke teams/nurses
In some areas, time in hospital after the stroke is followed up by on-going support from a community rehabilitation team or a stroke liaison nurse. This support was usually offered for only a limited period of time. They were seen as a good opportunity for people to chat and ask questions about anything that was worrying them now that they were home. 

Some people were taken out on short walks or trips in the community to help build their confidence. Others were helped to set goals for things that they would like to achieve, for example, cooking a meal, getting out to the shops, computer courses or, for younger people, getting back to work (see 'Leaving hospital' and 'Stroke recovery' Physical aspects and mobility'). 

Sometimes people were provided with additional equipment to help about the home. A few people had their blood pressure checked or were asked how they were getting on with their medication.

Help at home/care packages
Sometimes it was necessary for people to have regular help from home helps or carers with domestic tasks and personal care. These care packages were usually put in place before the person left hospital and were available to both those who lived alone and those who had family support. The daughter of a woman who had a stroke advised others in her situation to make sure they fight for a care package. 

Some people had help for just a few days a week with heavier cleaning jobs. They often felt that this was enough because it allowed them to still do some of the daily tasks and keep a bit of independence. A few only had assistance when they first came out of hospital after the stroke and were still feeling weak. After a few months they felt that they were strong enough to do things for themselves and found that care was no longer needed, or found ways to do things. 

Some needed additional, more intensive, daily care. Older people who lived alone sometimes had a carer to help them with their morning and evening routine, bathing and dressing and with preparing food.

Carers were sometimes employed to assist with the most personal parts of care such as bladder and bowel management. Although this was very difficult to accept it allowed people to stay in their own homes and took the pressure off other members of the family.

Having carers did not always work out. Sometimes getting into the house was a problem because the carers did not have keys and the person could not get to the door. One woman had overcome this by getting a key safe with a code fitted outside her mother's door. Sometimes carers were not able to help with heavy lifting because of health and safety. A few people found it difficult if they did not have the same carer most of the time.

Having a carer made some people feel they had lost their independence and they eventually decided they could manage on their own. Others said that they could keep enough independence by still doing some things for themselves.

Going into care and respite care
A few people that we spoke to had eventually had to go into care or had used occasional respite care.

Respite care can give families a rest or can be used in an emergency when the care giver in the family is unwell. A woman who had resisted her husband going into permanent care eventually accepted that respite care was a good idea when a nurse advised her that her health was beginning to suffer.

People sometimes end up in permanent care because their care needs after a stroke become too much for their family or because there is no family support at home. 

We only spoke to a few people whose families could no longer cope. Whilst some were very resistant to the idea of care homes others decided it was the best thing even though it meant they could no longer be together. One woman whose husband had gone into care when she became ill realised that her husband would actually have a better quality of life and more company in the home although she regretted not being able to be there for him.

The person with the stroke sometimes realised that their relative's health was beginning to suffer and helped make the decision about going into care. 


Last reviewed June 2017.
Last updated August 2011



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