Living with stroke

If you feel that you need help or someone to talk with during the acute phase, you should ask the staff at the hospital for a talk. Speaking with health personnel gives you as a family member or close person an opportunity to influence the course of treatment. Ask to be included in the discharge consultation. At the consultation you will have an opportunity to ask questions about the plans for continued follow-up, rehabilitation, and check-up appointments, and who is responsible for further follow-up.

Coming home from hospital is the beginning of a new phase. As an immediate family member you fill many different roles: you need to be a source of knowledge and information, a caregiver, a health service coordinator, and perhaps also a spouse or parent. Everyday life quickly becomes a matter of fixed routines, and your own needs are likely to be last in line.

Many family members of stroke survivors feel lonely because they have to handle the challenges involved on their own. It is also difficult to know how to behave towards a loved one who may act in a way that is both demanding and difficult to understand because they are sick. Talking with other people in the same situation can be a good source of support.

Look into what networks and meeting places are available in your local area.
Knowing what changes can come with stroke makes it easier to handle the challenges one faces in daily life in the recovery process. In this booklet you can read about the most common consequences of stroke.

Things are especially difficult if the person affected by stroke has children, or one has a child that suffers a stroke. Children need to be given information to understand the illness and its consequences. It is important to take children’s signals seriously, to talk with them and – if the children are close to a person affected by stroke – take them to hospital to visit. Children who are close should be allowed to be involved in the rehabilitation process so they can see what is being done and understand why it is done. Sometimes children feel that their healthy parent is less there for them than before, and they may have the feeling that they have lost more than one parent.

It is important to prioritise your own health, both for your own sake and that of the person affected by stroke, who depends on your help and support. Sometimes taking a break from the needs and burdens of everyday life can renew your energy and vigour. Try doing things that are pleasurable and make time for the hobbies you had before the stroke.

You know yourself best. What help and support do you need? You could write a list of the things you need. Be honest and share your list with family members and friends you can trust. It is possible that you won’t get the answers you wanted, but sharing your thoughts makes it easier for the people around you to understand your situation. Finding out more about how you are doing and your needs makes it easier for them to help.

Some advice:

• Go through your network and map out who you can ask for help.
• Contact the municipality’s case processing office.
• Talk with the health personnel involved; you could also contact a social worker for advice and tips.
• Talk with your G.P.
• Talk with your family, friends, and colleagues.
• Discuss adapting your work situation with your employer.

Serious illness can affect our close relationships and everyday interactions. Roles can change.

It is possible that you have become your partner’s caregiver and no longer feel as if you and your partner are equals. In this new scenario, closeness and intimacy can be as important as sexual relations. Don’t be afraid to ask health personnel about questions related to sexuality and intimate relationships after stroke. They know a lot about these things and can give advice and guidance. You can also speak to your G.P.

If you are close to a person who has been affected by stroke, it is important that you find out as much as possible about your own rights and those of your loved one. The municipal health and care services can help you with information about all kinds of things: from adapting the home and user-controlled personal assistance (BPA) for the person affected by stroke to attendance allowance and caregiver wages for family members.

• Hospital: All hospitals in Norway should offer patient and family education services.
• The Learning and Mastery Centre (in Norwegian, “Lærings- og mestringssentret”): This centre often has courses for stroke patients and their family members.
• The municipality is responsible for supporting family members, caregiver wages, and respite services.

Serious illness often involves extra expenses and a drop in income. As soon as you can, get a good overview of your financial situation. Don’t hesitate to ask for help. It may be a good idea to look more closely at the points below and consider whether there is a need to make changes:

• Your insurance arrangements.
• Mortgage and loan terms.
• NAV can help you with information about attendance allowance and how to combine work with social security benefits.
• Coverage of travel expenses: If a doctor issues a confirmation that it is necessary for you to accompany the stroke patient, you can have your travel expenses covered.

If you as a family member need to reduce the hours your work due to your duties as carer, you may be entitled to pension points from NAV to compensate you for the part of your pension you are losing out on.

Contact your employer and tell them about your situation at home. Under the Working Environment Act you are entitled to up to ten days’ unpaid leave a year in connection with severe illness; however, your employer may have special rules making it possible for you to be paid while you are on leave. If you work for the government, the possibility of paying wages will be evaluated on a case by case basis. Other employers may have similar rules.

If you are working and have a family member at the end of their life, you can be paid care benefit for end-of-life care for up to 60 days. Care benefit for end-of-life care is earmarked care work in the home. If required, the days can be divided among several family members.

If you need to be absent from work because your child under 18 has had a stroke, you may be entitled to care benefit. There is no cap on how long care benefit can be payable. Care benefit can be paid out at a percentage rate of full-time equivalent, down to 20%. Both parents can be paid care benefit at the same time.

Further information is provided on the websites of the Norwegian Directorate of Health, the Centre for next-of-kin of and carers (“Pårørendesenteret”) and the National Association for Heart and Lung Diseases – Stroke (“LHL Hjerneslag”).