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Family and carers

This section is for family and carers of people who have had a stroke

In the first few days and weeks after a stroke, you may find there is a lot to take in, at a time when others are turning to you for information and support. As well as the distress of what has happened you may feel overwhelmed by the volume of information and practical arrangements you have to deal with.

Below is some general advice to help you both achieve a positive quality of life after stroke:

  • be wary of being over protective (for example doing things for them that they may be able to do for themselves, or speaking for them) – it does not always help
  • encourage them to do things they used to enjoy
  • if communication difficulties are present encourage them to take part in conversations, and try to find a way to help them to express themselves
  • for anyone who has cognitive difficulties, it is still important to include them in decision making and planning where possible

Your feelings

A stroke can be a shock to everyone. Partners and family members may feel a deep sense of loss, if they feel that the stroke has changed the person they know and love. Many carers go through feelings of loss and grief for the way that their life and that of the person they care for has been changed. Caring can be difficult and stressful and it is not unusual to have feelings of anger, resentment, guilt, anxiety or depression. These are usual reactions to what can be a difficult situation. In addition:

  • ask professionals involved to help you understand any behaviour or personality changes in your loved one which you find difficult
  • make time for yourself – take time away from your role as carer to treat yourself and relax, socialise or practice a hobby
  • ask for and accept help from family, friends and professional carers and staff
  • if you find yourself with excessive feelings of guilt, anger, resentment or depression, speak to your GP or stroke team
  • consider joining a carers support group
  • social services may be able to help arrange respite care so you get some time to yourself.

If your relative agrees, detailed information about their care, treatment and progress is available from the staff involved. Please ask a member of staff if you have any questions or concerns.

  • Check the ward for information leaflets
  • Contact the Stroke Information Service
  • The Stroke Association Family Support Workers can visit you and your relative in hospital or at home (if available in your area).

If you have any queries or concerns about your relative’s treatment or stay in hospital contact the Patient Advice and Liaison Service (PALS), available in our hospital.

Recovering from a stroke is a gradual process. The time it takes and the degree of recovery varies. Some people will recover, however some will improve only a little and may require long term care. If it seems that a person will need a lot of support after leaving hospital, their needs should be assessed and a care plan devised before they leave.

Assessment

The stroke team will arrange an ‘assessment of need’ to work out what help you may need with washing and dressing, special equipment, day care etc. There are schemes which mean you can buy your own services – more details are available from the stroke team.

Carers assessment

If you are going to provide care for a loved one who has had a stroke, you also have a right to a separate assessment of your own ‘ability to care’ under the Carers (Recognition and Services) Act 1995. Under this particular act, carers can ask for your views – and any needs or difficulties you have in coping with caring – to be taken into account when deciding what services will be provided, for example regular respite care. Social services should review your situation from time to time to see whether your needs or your loved ones needs have changed. If you think your situation has changed and your loved one has more or different kinds of help, ask for a review straight away.

Emergency support

Gateshead Social Services or local carers’ organisations provide an emergency service which can respond quickly to you in a crisis situation. They can work with you to agree an emergency support plan. This will ensure that agreed alternative care will be provided usually for 48 hours until longer term care arrangements can be made

Medical support

If the person you care for has a medical concern you should contact NHS Direct or their GP. If you suspect they are having another stroke use the FAST test and dial 999. As a carer your health is very important, let your GP know that you are a carer and continue to attend all appointments.

Work

If you are working, you may consider stopping work. However, think through the implications carefully. Giving up your job is likely to mean a drop in income when you most need it and less social contact outside the home. It is worth considering alternatives, such as reducing the hours you work or a period of unpaid leave or compassionate leave. Talk to your manager about some time off if you need it. You have a legal right to ‘reasonable unpaid time off’ to deal with emergencies with dependants.

Money matters

Caring for someone who has had a stroke is likely to involve extra expense – for example, paying someone to help with caring, larger heating bills, extra equipment, contributing towards some of the support services or perhaps alterations to the home.  Ensure that both you and the person you are caring for have a full benefit check as there are several benefits available to help. Some are means tested but others are not and are payable based on the amount of personal care and attention that someone needs.

Planning for the future

Many carers feel it is helpful to prepare for the future and need advice about managing someone else’s affairs or making a will. The person you care for can arrange a Lasting Power of Attorney. This means that someone they have appointed can take over the management of their affairs and make decisions about their medical treatment if they lose capacity. You will need to contact a solicitor. Further information about this is available from The Office of the Public Guardian.

Young carers

If there are children in the family their needs will need to be considered too. They may be struggling to understand and appreciate the difficulties caused by the stroke or be worrying about the health of the other parent or blaming themselves for what has happened. As a young carer they need support and the opportunity to talk to people who understand the effects of these caring responsibilities and the changes that it may bring to family roles. They also need the opportunity at times just to play and be children, free of these responsibilities. They may also need extra support to balance school work and domestic duties.

Long term care

There may come a time when caring for someone at home becomes difficult and you may need to consider other choices such as sheltered housing, home care, nursing or residential care. People with serious medical conditions may be eligible for fully funded NHS care. Gateshead Social Services will be able to provide an assessment and information on the funding available through Gateshead Council and the financial implications for you and your loved one. They will also have registration details of care homes and nursing homes in your area. Details of the latest independent inspection reports for care homes are available from the Care Quality Commission.

Call us on 0191 482 0000

In emergencies dial 999 / Non-emergencies dial 111

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