For families and caregivers
You are frightened too. That deserves attention.
When someone you love starts dialysis, your life changes as well. This page is for you — what helps, what does not, what to watch for, and how to keep something for yourself.
Your role matters more than you think
Patients who have someone in their corner tend to attend more consistently, follow their food and fluid plans better, and cope far better emotionally. You are part of the treatment, not a bystander to it.
You will also be the one who notices things first — the swollen ankles, the extra tiredness, the low mood that has lasted too long. Trust that instinct and tell us.
And you are allowed to find this hard. Grief, resentment, guilt and exhaustion are normal for families. Naming them is not disloyal.
Start with the journey pages
Reading these will tell you almost everything you need to picture what is coming.
Practical support
Four things families ask us how to do
What to say
“I am here, and I am not going anywhere” does more than any advice. Ask what they need rather than assuming. Let them be angry or quiet without trying to fix the feeling.
What to do
Practical help lands best: cooking within their food plan, keeping the medication list current, driving on transport-free days, sitting in on appointments and writing things down.
What to watch for
Breathlessness, swelling, confusion, chest pain, a very rapid or irregular heartbeat, heavy bleeding from an access site, or fever. These need urgent medical attention, not a wait-and-see.
What to tell children
Simple, honest and repeated. “Granny’s kidneys are tired, so a machine helps clean her blood three times a week.” Children cope far better with a plain fact than with a whispered secret.
Do
- Learn the treatment schedule and protect it — missed sessions are genuinely risky.
- Help keep salt, potassium and phosphate in check by cooking with them in mind.
- Keep a written medication list and take it to every appointment.
- Never squeeze, lean on, take blood pressure from, or draw blood from a fistula arm.
- Encourage gentle activity on non-treatment days.
- Ask questions at the clinic. There is no such thing as a silly one.
Please avoid
- Do not push food or drink as comfort — fluid and potassium limits are medical, not fussiness.
- Do not offer herbal remedies or supplements without asking the nephrologist first.
- Do not treat every quiet day as a crisis, or every good day as a cure.
- Do not take over decisions they can still make themselves.
- Do not use a salt substitute in cooking; most are potassium-based and unsafe.
- Do not carry it all alone until you are exhausted.
Seek help urgently
Signs that should never wait until the next session
If you see any of these, phone the clinic or go to your nearest emergency department immediately. Do not wait to see whether it settles.
- Breathlessness, or being unable to lie flat
- Chest pain, or a very fast or irregular heartbeat
- Sudden or worsening swelling of the legs, face or abdomen
- Confusion, extreme drowsiness or fainting
- Bleeding from the access site that will not stop with firm pressure
- Fever, or redness, heat, pus or pain around a fistula or catheter
- Persistent vomiting, or not passing urine at all when they normally do
What families ask us
Looking after yourself
- Share the load. Divide lifts, cooking, admin and appointments across the family.
- Keep one thing in your week that is entirely yours.
- Accept help when it is offered, even if it feels easier to do it yourself.
- Tell your own doctor if your sleep, mood or health is slipping.
- Talk to other families at the clinic — they understand it without explanation.
This is general information and does not replace professional medical advice. Please speak to your doctor or our team about your own situation.
Ask us the question you have not wanted to ask in front of them
Families are welcome to contact us directly. If there is something you would rather discuss privately, send us a message and we will make time for you.