The short answer
- Plan the care round the dialysis daysThree sessions of about four hours a week at a unit, or a daily routine at home. The evening after a session is when help is most needed.
- The fluid allowance can be the hardest partThe kidney team sets it, and it covers soup and jelly as well as drinks. A measured jug and a written chart make it easier to keep to.
- Know which changes mean ringing the unitA fistula that has stopped buzzing, redness round a line or catheter, a cloudy bag, a temperature, or more breathlessness than usual.
- A carer does not do the dialysisNeedles, lines and exchanges are for the renal team, or for somebody they have trained and signed off. A carer supports everything around them.
This page covers what happens at home between sessions. It is not medical advice and does not replace your relative's own plan from the kidney team. Carers on PrimeCarers charge £18 to £25 an hour for visits, with our fee included.
The condition
What kidney disease means from one day to the next
Chronic kidney disease is a long-term condition in which the kidneys do not work as well as they should. What it changes at home depends on how far it has gone.
The kidneys filter waste and extra water out of the blood and turn it into urine. When they work less well, the NHS explains, there are often no symptoms at all in the early stages, and later there can be tiredness, swollen ankles, feet or hands, breathlessness and feeling sick. There is no cure, but treatment can ease the symptoms and slow it down. The NHS kidney disease pages have the full picture, and the health conditions guide covers how care at home works for other long-term conditions.
Doctors describe kidney disease in stages from 1 to 5, based on a blood test called the eGFR. The stages matter to a family only as far as they change daily life, and the table groups them that way.
| What it means | What changes at home | |
|---|---|---|
| Stages 1 to 3 | Kidney function is normal or reduced. There may be no symptoms at all. | Usually very little. Blood pressure tablets, regular blood tests, and asking before buying painkillers. |
| Stage 4 | Kidney function is severely reduced. | Symptoms such as tiredness become more likely. The kidney team may bring in a renal dietitian and talk through the treatment choices. |
| Stage 5, kidney failure | The kidneys have lost almost all their function. | Dialysis, a transplant, or care that manages the symptoms without dialysis. This is where the week changes shape. |
Stages 1 to 3
- What it means
- Kidney function is normal or reduced. There may be no symptoms at all.
- What changes at home
- Usually very little. Blood pressure tablets, regular blood tests, and asking before buying painkillers.
Stage 4
- What it means
- Kidney function is severely reduced.
- What changes at home
- Symptoms such as tiredness become more likely. The kidney team may bring in a renal dietitian and talk through the treatment choices.
Stage 5, kidney failure
- What it means
- The kidneys have lost almost all their function.
- What changes at home
- Dialysis, a transplant, or care that manages the symptoms without dialysis. This is where the week changes shape.
Stages from the NHS kidney disease diagnosis page. Your relative's own kidney team will say which stage applies and what it means for them.
The rest of this page is mostly about stage 5, because that is when dialysis starts and care at home has to be arranged round it. Kidney Care UK is the charity for people with kidney disease and their families, with plain information on each treatment and support for the practical and emotional side.
The treatments
Dialysis at a unit, dialysis at home, or choosing not to have it
Each option asks something different of the house and of the family. Knowing which one your relative is on tells you where the care needs to go.
| How it works | What it asks of the house | What it asks of the family | |
|---|---|---|---|
| Haemodialysis at a unit | Usually three sessions a week, each about four hours, at a hospital or dialysis unit. Blood is cleaned by a machine through a fistula in the arm or a line in the neck. | Nothing. The equipment stays at the unit. | The journeys, the early starts, and the tired evening after each session. |
| Haemodialysis at home | The same treatment on a machine at home, sometimes more often than at a unit, agreed with the kidney team. | A clean room near running water, plug sockets, possibly new pipes, and storage about the size of a double wardrobe. | A family member or carer can help, but only after full training from the kidney team. |
| Peritoneal dialysis | Fluid is run into the tummy through a catheter and drained out. Done every day, either as exchanges in the daytime or on a machine overnight. | A cool, dry store for supplies about the size of a double wardrobe, and monthly deliveries. | Most people do it themselves after training. Keeping the area clean and watching for infection matters. |
| Care without dialysis | Conservative kidney management: the kidney team treats the symptoms and supports quality of life without dialysis. | Nothing beyond what the person needs day to day. | Regular appointments, and help at home as needs change. |
Haemodialysis at a unit
- How it works
- Usually three sessions a week, each about four hours, at a hospital or dialysis unit. Blood is cleaned by a machine through a fistula in the arm or a line in the neck.
- What it asks of the house
- Nothing. The equipment stays at the unit.
- What it asks of the family
- The journeys, the early starts, and the tired evening after each session.
Haemodialysis at home
- How it works
- The same treatment on a machine at home, sometimes more often than at a unit, agreed with the kidney team.
- What it asks of the house
- A clean room near running water, plug sockets, possibly new pipes, and storage about the size of a double wardrobe.
- What it asks of the family
- A family member or carer can help, but only after full training from the kidney team.
Peritoneal dialysis
- How it works
- Fluid is run into the tummy through a catheter and drained out. Done every day, either as exchanges in the daytime or on a machine overnight.
- What it asks of the house
- A cool, dry store for supplies about the size of a double wardrobe, and monthly deliveries.
- What it asks of the family
- Most people do it themselves after training. Keeping the area clean and watching for infection matters.
Care without dialysis
- How it works
- Conservative kidney management: the kidney team treats the symptoms and supports quality of life without dialysis.
- What it asks of the house
- Nothing beyond what the person needs day to day.
- What it asks of the family
- Regular appointments, and help at home as needs change.
From the NHS dialysis pages and Kidney Care UK's guides to haemodialysis, home haemodialysis and peritoneal dialysis.
A unit asks the least of the house. Home haemodialysis gives more control over when sessions happen, but the kidney team visits the home first to check the space and the plumbing, and training takes several weeks. Kidney Care UK's guide to home haemodialysis sets out what that involves. For peritoneal dialysis the NHS says a nurse shows the person how to do it, and the treatment happens every day, so the week has no dialysis days as such: every day has the same routine.
Some people decide with their kidney team not to have dialysis. That is a recognised choice with its own care behind it. Kidney Care UK describes it as managing the symptoms and focusing on quality of life, with regular appointments with the kidney team, and the NHS describes it as medical, psychological and practical care for the person and their family. Help at home supports that choice in the same way it supports dialysis. Choosing not to have dialysis explains the decision in more detail.
The week
How a week of dialysis is shaped, and where care fits
Most of what a family arranges comes down to three kinds of day: the dialysis days, the days between, and the longer gap at the end of the week.
An example week of dialysis at a unit
- Dialysis at the unit
- A day between
- The two-day gap
Before
Up, washed, dressed and fed in time for the transport or the lift. One hospital guide asks people using hospital transport to be ready two hours before their session.
Where a carer fits: A morning visit that starts early enough, with the bag packed and the tablets taken as the plan says.
At the unit
Weighed on arrival to see how much fluid has built up, then about four hours on the machine, plus the journey each way.
Where a carer fits: Usually nothing: the unit staff do the dialysis. A carer might travel with them if that has been agreed.
After
Tired, sick or washed out, sometimes for the rest of the day. Cramps and dizziness can come on shortly after a session.
Where a carer fits: Somebody there when they get home: a meal ready, help to bed or a chair, and the evening drinks added to the chart.
Morning
Usually the better day, and the one for shopping, the GP, a walk or seeing people.
Where a carer fits: Help with a proper wash, the jobs that were too much yesterday, and the fluid jug measured out for the day.
Through the day
Everything drunk, and some foods such as soup and jelly, counts towards the fluid allowance until the next session.
Where a carer fits: Meals cooked to the dietitian’s plan, drinks in a small cup, and each one written down.
Evening
Fluid builds up between sessions, so this is the time to notice swollen ankles or more breathlessness than usual.
Where a carer fits: A look at the ankles and the fistula arm, and a call to the unit if something has changed.
The weekend
In a three-session week one gap is two days rather than one. Fluid keeps building up until the next session, so the weekend is when the fluid chart matters most.
Monday, Wednesday and Friday is only an example: the unit sets the days and the session time. Peritoneal dialysis is done every day at home, and home haemodialysis follows a pattern agreed with the kidney team, so the week looks different for both.
A dialysis day is longer than the four-hour session, with the journey each way and the weighing on arrival, which tells the nurses how much fluid has built up. Both kinds of dialysis can leave somebody tired and sick afterwards, and the NHS notes that haemodialysis can also cause cramps and dizziness during or shortly after a session. Plan for the evening after a session to be a quiet one, with food ready and somebody there when they get home.
The days between are usually the better days, and the ones for shopping, appointments and seeing people. They are also when fluid builds up, which is why the fluid chart matters on those days as much as on dialysis days. If the evenings after a session are when your relative needs somebody, morning, lunch and tucking-in calls explains how visits at different times of day work.
Fluid, food and medicines
Fluid, food and medicines: what the kidney team decides
It is natural to want a list of what your relative can eat and drink. The answer is different for each person and it changes over time, so it comes from the kidney team and the renal dietitian. What a family can do is keep to the plan they write.
| The kidney team decides | What happens at home | |
|---|---|---|
| Fluid | Whether there is a fluid allowance and how much. Kidney Care UK says everyone's is different, and it can change. | Measuring the day's allowance into a jug in the morning and pouring from it. Soup, gravy, yoghurt, custard and jelly may count, and so does the water taken with tablets. |
| Potassium | Whether potassium needs limiting. Too much can affect the heartbeat, but not everyone with kidney disease needs to cut down. | Cooking the way the dietitian suggests. Salt substitutes such as Lo-Salt contain potassium, so do not use them without asking. |
| Phosphate | Whether phosphate needs limiting, and which binder tablets to take. High levels can weaken bones and cause itching. | Making sure binders are taken with meals, at the time the label says. They only work around food. |
| Salt | How much salt is right. The NHS advises less than 6g a day for people with kidney disease. | Less salt in cooking, and watching bread, soup and ready meals. Salt makes people thirsty, which makes the fluid allowance harder. |
Fluid
- The kidney team decides
- Whether there is a fluid allowance and how much. Kidney Care UK says everyone's is different, and it can change.
- What happens at home
- Measuring the day's allowance into a jug in the morning and pouring from it. Soup, gravy, yoghurt, custard and jelly may count, and so does the water taken with tablets.
Potassium
- The kidney team decides
- Whether potassium needs limiting. Too much can affect the heartbeat, but not everyone with kidney disease needs to cut down.
- What happens at home
- Cooking the way the dietitian suggests. Salt substitutes such as Lo-Salt contain potassium, so do not use them without asking.
Phosphate
- The kidney team decides
- Whether phosphate needs limiting, and which binder tablets to take. High levels can weaken bones and cause itching.
- What happens at home
- Making sure binders are taken with meals, at the time the label says. They only work around food.
Salt
- The kidney team decides
- How much salt is right. The NHS advises less than 6g a day for people with kidney disease.
- What happens at home
- Less salt in cooking, and watching bread, soup and ready meals. Salt makes people thirsty, which makes the fluid allowance harder.
Sources: the NHS kidney disease treatment page, Kidney Care UK's diet, fluid and bone health guides, and NHS trust dietetics leaflets. Your relative's own plan overrides all of it.
The fluid allowance can be the hardest part of haemodialysis to live with, because it means being thirsty and saying no to a cup of tea. It exists because a session can only safely remove so much fluid, and what builds up between sessions has to go somewhere: into the ankles, round the eyes, or onto the lungs. Kidney Care UK suggests small cups, sips rather than gulps, spreading drinks through the day, ice cubes, and cold drinks rather than hot. Their guide to managing your fluid levels is worth printing. Where heart failure sits alongside kidney disease the two plans overlap, and heart failure at home covers the daily weight and the swelling from the heart's side.
Food needs to stay worth eating. A diet built round limits can become dull, and somebody tired after dialysis may already have a poor appetite. The renal dietitian can suggest swaps rather than cuts, and nutrition and hydration for the elderly covers keeping meals appealing.
Warning signs
When to ring the kidney unit, and when to call 999
The unit will give your relative its own list and its phone numbers. These are the signs the NHS and renal units ask families to watch for, grouped by how quickly to act.
What to do about a change, from least to most urgent
Mention it to the nurses at the unit
- Cramps, dizziness or sickness during or after sessions that seem worse than before
- Itchy skin that is keeping them awake
- Eating much less, or losing interest in food
- Low mood, or saying they cannot face another session
None of these needs a phone call tonight, but the unit may be able to change something: the fluid taken off, the dry weight, or a medicine.
Ring the kidney unit straight away, or NHS 111 if you cannot get through
- You cannot feel the buzz in the fistula
- The skin round the fistula, line or tummy catheter is red, hot, swollen, painful or oozing
- Peritoneal dialysis fluid that looks cloudy or has white flecks, or new tummy pain
- A high temperature, or feeling hot, cold or shivery
- More breathless than usual, or new swelling round the ankles or eyes
- Peeing much less than usual, or the heart beating faster than usual
Do not wait for the next session with a fistula that has stopped, because the sooner the unit hears, the better the chance it can be rescued. Keep a cloudy bag and take it with you.
Call 999 and do not wait for the unit
- Bleeding from the fistula that will not stop. Press firmly on the spot with gauze and two fingers while you wait
- Severe difficulty breathing: gasping, choking or not able to get words out
- A chest that feels tight or heavy
- Lips or skin turning very pale, blue or grey, or sudden confusion
For bleeding, tell the call handler it is a dialysis fistula. Otherwise, say your relative is on dialysis.
From the NHS dialysis and breathlessness pages, NHS trust renal unit leaflets and Kidney Care UK. Your relative’s unit will give its own numbers for working hours and out of hours, and its advice comes first. Write both numbers on the fluid chart.
The fistula is the join between an artery and a vein, usually in the arm, that carries blood to the machine. Renal unit leaflets ask people to feel for its buzz every day, especially on waking and at bedtime, and to ring the unit straight away if they cannot feel it. The same leaflets ask that nobody takes blood pressure or blood from that arm, and that tight sleeves, watches and sleeping on the arm are avoided.
For peritoneal dialysis, the first sign of an infection inside the tummy is usually a cloudy bag, and renal units ask for it to be reported as soon as it is seen. The NHS page on dialysis complications lists the signs that need an urgent appointment or NHS 111.
A carer at home
What a carer does, where the job stops, and what it costs
A carer does not treat kidney disease and does not do the dialysis. What a carer can do is make the rest of the week work: the early starts, the evenings after a session, meals to the plan and the fluid chart.
Getting there and back
Dialysis days
The evening after a session
Dialysis days
The fluid chart
Every day
Meals to the plan
Every day
Tablets prompted and recorded
Every visit
Noticing a change
Days between
If you need somebody there on the evenings after dialysis, you can search for carers near you and compare their rates and the hours they can cover. Every carer has had their identity and right to work checked, holds an enhanced DBS on the Update Service, and has been interviewed online, and carers are insured while they work. We do not check qualifications, training or references, so what a carer says about their experience with kidney disease is their own account on their profile, for you to ask them about. PrimeCarers is an introductory service rather than an agency or a care provider: carers are self-employed, and you agree the visits and the rate with them directly.
If you are the one doing the driving and the evenings, you are entitled to ask the council for a carer's assessment of your own needs.
Questions
Questions families ask about kidney disease and dialysis
It varies from person to person and from session to session. The NHS says both kinds of dialysis can leave somebody tired and sick afterwards, and Kidney Care UK describes feeling washed out. Taking off a lot of fluid can make it worse, which is one reason the fluid allowance matters. Plan for the evening after a session to be quiet, and tell the unit if the tiredness is getting worse.
A carer can help with everything around the dialysis, such as the transport, meals, the fluid chart and the evening after. A carer does not put in needles, handle a line or do a peritoneal exchange unless the renal team has trained them, assessed them and delegated the task to them by name. Delegated healthcare tasks explains how that works.
Only the kidney team can say. Kidney Care UK says every fluid allowance is different, even for two people on the same treatment, and that cutting down without being advised to can do harm. Once there is a figure, measure it into a jug each morning and pour from that, remembering that soup, jelly, custard and the water with tablets can count.
NHS England says everybody in England who has haemodialysis at a unit should be offered transport support. That may be hospital transport, a taxi, or repayment of travel costs, agreed with the unit. It does not usually cover a relative or carer travelling with them. Ask the unit how transport is arranged locally.
Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency. Two hours on each evening after a session is six hours a week, £108 to £150. You agree the hours and the rate with the carer directly, and the care cost calculator gives figures for your area.