As a family carer, you help most by understanding the disease together with the person you love, supporting without taking over and looking after yourself. With consent you have a right to information, the municipality must offer support when care is heavy, and NAV has schemes for time off work.
By the Nyrami editorial teamPublished 2 October 20269 min read
When someone you love gets kidney disease, you often become part of their treatment without asking to be. You cook, drive to appointments, keep track of medicines and worry. This guide is for partners, children, parents and friends: how you can help, what rights you have in Norway, and where you can get support yourself.
Kidney disease can change food, holidays, finances, roles and moods in a family, and how much depends on the stage. Many people with chronic kidney disease (CKD) live for a long time with few problems. With severe kidney failure and dialysis there is more: fixed treatment days, dietary advice, a fluid limit and tiredness. It is common for family members to feel worry, anger, grief and guilt.
LNT (the Norwegian association for kidney patients and transplant recipients) advises families to talk about how each of you is experiencing the situation, to share tasks deliberately and to talk about more than the illness. It is fine to laugh and have good times, even in the middle of the hard parts. Read more in Chronic kidney disease and Life on dialysis.
You help most by supporting, not controlling. The person who is ill owns their treatment and makes their own decisions. Ask what they would like help with, and agree who does what. That protects their independence and makes things easier for both of you over time.
Come along if the person who is ill wants you to. Two people hear more than one, and you can take notes. Write your questions down in advance, for example:
See also Understanding your test results.
Call the out-of-hours medical service (legevakt) on 116 117 if the person you care for passes very little urine, becomes confused or unusually drowsy, gets short of breath or swells up quickly. The same applies to sudden muscle weakness or an irregular pulse in someone who has had high potassium. If life is in danger, call 113.
As a family member you always have a right to general information and guidance from health services. With the consent of the person who is ill, the closest relative also has a right to information about their health and treatment. The patient decides who their closest relative is. If they can no longer make decisions about their care, the closest relative gains a right to information and to take part.
The Norwegian Directorate of Health’s guide on family members (Pårørendeveileder, in Norwegian) describes what health services must do: involve family members, find out what you need, and offer support and guidance, including to children. You can refer to it if you feel left out.
The municipality must offer necessary support to people with particularly heavy care responsibilities, including training and guidance, respite care and a carer’s allowance (omsorgsstønad) (Health and Care Services Act, section 3-6). Nobody has a statutory right to the carer’s allowance itself, but every municipality has the scheme and must assess your needs together with you.
If you are employed, you have a right to up to 10 days of leave a year to give necessary care to a parent, spouse, cohabiting partner or registered partner (Working Environment Act, section 12-10). Whether you are paid depends on your employment contract or collective agreement.
There are several schemes, but the conditions are strict, and most only apply when care is extensive or long term. Some are paid to you, others to the person who is ill. Always check the conditions on nav.no and with your municipality before you plan around them.
Schemes that may apply with kidney disease in Norway
Carer’s allowance (omsorgsstønad)
Respite care, training and guidance
Care benefit at the end of life (pleiepenger i livets sluttfase)
Attendance allowance (hjelpestønad)
Basic benefit (grunnstønad)
Pension credits for care (omsorgsopptjening)
The end-of-life care benefit requires that you have had earned income, and that the person is cared for in a private home, not in hospital or a nursing home. Several people can share the 60 days. It may apply, for example, if the person you love stops dialysis and wants to be at home for the last period. The attendance allowance does not cover what home nursing already does, and for basic benefit towards a special diet, NAV requires that a specialist has made the diagnosis and described the diet.
Dialysis and transplantation take a lot of time and travel, and the family often comes along. Haemodialysis in hospital usually takes around four hours, three times a week, plus the journey. Home dialysis, either peritoneal dialysis or home haemodialysis, gives more freedom, but requires training. Around a quarter of dialysis patients in Norway have dialysis at home, according to the Norwegian Directorate of Health.
Travel to dialysis and check-ups is covered under the patient travel scheme (pasientreiser). If the patient needs someone with them for health reasons, the treatment centre must confirm it, and then your travel as a companion is also covered, and in some cases lost earnings. Children under 18 always have a right to a companion. If you as a family member are called in for training, for example before home dialysis, your travel may also be covered.
All kidney transplants in Norway are carried out at Oslo University Hospital, Rikshospitalet, and most patients have check-ups there for the first eight weeks. If you live far away, the transplant recipient can stay at a hotel, and family members can stay with them. According to Oslo University Hospital, family members then pay their own travel and accommodation.
Many family members wonder whether they can give a kidney. In 2024, 71 of the 255 kidneys transplanted in Norway came from living donors, according to the Norwegian Directorate of Health. Read more in Donating a kidney and Kidney transplantation.
Many families eventually need to talk about whether or not to have dialysis, and about the last part of life. It is fine to ask the kidney specialist directly what the figures mean for you, and to ask for another conversation. The patient decides, but may want you there. Read more in End-stage kidney failure, How long can you live on dialysis? and Kidney failure in older people.
Children notice when someone in the family is seriously ill, and they have their own rights. Section 10 a of the Health Personnel Act says that health professionals must help look after the children and siblings under 18 of patients with serious illness, for example by talking with the patient about what the child needs and giving the child information adapted to them. Hospitals must have staff responsible for children who follow this up. Feel free to ask the care team to talk with the children together with you.
If it is your child who has kidney disease, you may be entitled to care benefit (pleiepenger) from NAV when the child is under 18, needs continuous supervision and care and is followed up by specialist health services. You can also apply for extra days of care leave (omsorgspenger) when the child has a chronic illness, and for training allowance (opplæringspenger) when you need to learn to care for the child at an approved health institution, also after the child turns 18. LNT has family contacts for parents.
It is common to become exhausted as a family carer, and it does not mean you are doing anything wrong. Research shows that many family carers struggle with sleep and low mood, and that those who manage to keep part of their own life more often stay well themselves, writes NHI (in Norwegian). If you are tired over a long time, sleep badly and lose the joy in things you like, you need help yourself.
Many people use the Nyrami app together before an appointment: values such as eGFR, creatinine, albumin and blood pressure are in one place, explained in words and over time. The food scanner assesses potassium, phosphorus, sodium and protein for you, including when you are the one doing the shopping. The app is free for iPhone and Android.
Turns the advice into something you can use in the shop and the kitchen: scan food and see potassium, phosphorus and salt assessed for you, and follow your numbers over time. Free on iPhone and Android.
Kidney function declines with age in everyone, and an eGFR of 60 to 89 is common in older people. Kidney failure often causes vague signs such as tiredness, poor appetite and confusion. Dehydration, infection and medicines can cause acute kidney failure, which is urgent.
End stage kidney failure means the kidneys have almost stopped working (stage 5, eGFR below 15). Dialysis, a new kidney or supportive care without dialysis is then needed. You have the right to say no to dialysis or to stop it. Symptoms can be relieved, and family members can get care allowance and leave.
What is good for your kidneys is the same as what is good for your heart: little salt, plenty of vegetables, fruit and wholegrains, water when you are thirsty, activity and no smoking. No food cleanses or repairs the kidneys. If you have kidney disease, the advice on potassium, phosphorus and protein may be different.
