A Carer's Guide to the First Six Months

Nobody hands you a job description. One week you are a husband, a daughter, a friend, and the next week you are also a driver, a note-taker, a pharmacist, a cook, and the person who notices things.

This is written for you, the carer, and not for the patient. The two jobs are different, and pretending otherwise is how carers disappear.

Month one: most of the fear is surprise

The first dialysis session is deliberately short and gentle, often around two hours, with a slow blood pump. That is a protection against a complication called dialysis disequilibrium, and it is not a sign that anything has gone wrong. Knowing that in advance saves a bad afternoon.

After that, in-centre haemodialysis is usually three sessions a week of about four hours. With travel and setting up, a four-hour session is often a six or seven hour day. Afterwards, many people feel washed out, sometimes for hours. That is common, it tends to improve, and it usually gets better when the team adjusts how much fluid is coming off and how fast.

What helps in those first weeks is mundane and it matters: warm layers, because units are cold. Something to do for four hours. A lift home if you can manage it. And your presence, without a running commentary.

Learn the access rules, because you will be the one enforcing them

If they have a fistula or a graft in one arm, that arm has rules, and tired staff in an unfamiliar department will sometimes forget them. You will not.

No blood pressure cuff on that arm. No blood tests from it. No drips in it. No tight clothing or jewellery. Nothing heavy carried with it. They should feel for the thrill, the buzz over the access, several times a day. If it disappears, that is an emergency and it is time-critical: the unit needs to know within hours, not tomorrow.

If bleeding from the access will not stop with firm, continuous pressure, press hard, do not let go, and call for emergency help. That is the one that frightens people most, and it is the one where knowing what to do in advance actually saves someone.

Agree, in advance, who calls

Sit down once, when nothing is wrong, and agree what triggers a phone call and who makes it. Then it is a plan rather than an argument at nine at night.

Call the emergency number for: chest pain or tightness; severe breathlessness, especially lying flat, or waking up gasping; collapse, fainting, a seizure, or new confusion; sudden weakness or numbness down one side; bleeding from the access that will not stop.

Call the unit the same day for: a weak or absent thrill; fever or shaking chills, particularly with a catheter; redness, heat, swelling, pus or discharge at any access site; cloudy drained fluid or tummy pain on peritoneal dialysis, which is peritonitis until proven otherwise; a cold, painful, numb or pale hand on the access side; new swelling or new breathlessness; and a missed session.

That last one is not a small thing. Missing dialysis is dangerous, not merely inconvenient, and missing the session after the long weekend gap is the most dangerous of all (BMC Nephrology, 2020). If a session is going to be missed, the answer is to ring the unit, never to just skip it.

Food: help, do not police

This is where good intentions do the most damage, so here are the three things that are actually true.

Protein goes up when dialysis starts, not down, to around 1.0 to 1.2 g per kg of ideal body weight per day (KDOQI Nutrition, 2020). If you are still enforcing a pre-dialysis low-protein rule, you may be helping them towards malnutrition, which is a bigger risk than most families realise.

Salt, not water, is the real lever on fluid. Salt makes you thirsty, thirst makes you drink, and everything drunk has to come off in the next session, fast, which is what causes the cramps and the crashes. Cooking with less salt is the most useful thing in this entire article, and it works better than counting somebody's glasses of water at them.

And the specifics belong to a renal dietitian, not to a website and not to you. Your job is to make the good option the easy option, and to come to the dietitian appointment with a food diary that is honest rather than flattering.

If dialysis comes home, you may become the technician

Home haemodialysis gives real freedom, and it is more work than the brochure suggests. Someone has to learn to needle a fistula and run a machine, training takes weeks, and there is more intervention needed on the access with more frequent dialysis (FHN Daily Trial, New England Journal of Medicine, 2010). Very often, that someone is the partner.

Name that out loud before you agree to it. Ask what happens on the day you are ill, or away, or simply cannot face it. Ask about assisted peritoneal dialysis, where a carer or nurse does the exchanges, if the alternative is you doing everything forever. Ask about respite.

A care partner who burns out is not a small clinical event. It ends the modality.

The mood nobody warns you about

Depression is common on dialysis. When properly assessed by interview, roughly 23% of people on dialysis are depressed; on questionnaires the figure looks higher, partly because the physical symptoms of kidney failure, the exhaustion, the poor sleep, the poor appetite and the poor concentration, look exactly like the symptoms of depression (Palmer et al., Kidney International, 2013). A high score is a reason to be properly assessed, not a diagnosis.

It matters because depression is linked to missed treatments, which closes a dangerous loop. It is treatable. Renal units have counsellors, psychologists and social workers, and asking for one is not an admission of anything.

Grief is not depression. Anger is not ingratitude. Loss of identity, particularly around work and independence, is a normal response to a genuinely large loss.

And one thing that is almost never discussed: sexual difficulties are the norm rather than the exception in kidney failure, and most people are never treated for them. It is common, it is not anybody's fault, several of the causes are treatable, and it is worth raising with the team rather than quietly grieving.

Look after yourself, honestly

You are allowed to find this hard. You are allowed to be exhausted by someone you love. You are allowed to want an afternoon that has nothing to do with kidneys in it.

Tell your own doctor that you are a carer. Ask the renal social worker what support exists. Take the respite when it is offered rather than saving it for a crisis, because the crisis is when it stops being available.

And do not become the only person who knows anything. Bring one other person into the loop, so that a flu or a work trip does not become an emergency.

Six months in

Rhythms form. The unit stops being frightening. The machine becomes furniture. Most people find that the first month was the worst month, and that is worth saying out loud in week two, when it does not feel like it could possibly be true.

One thing to raise early, and not to wait for: ask the team whether a transplant assessment is appropriate. A transplant before dialysis is ever needed gives the best outcomes, the work-up takes months, and finding a living donor takes conversations that need time to happen. The question is worth asking long before anyone thinks it is due.

Sources

• KDOQI Clinical Practice Guideline for Nutrition in CKD: 2020 Update, American Journal of Kidney Diseases.
• National Kidney Foundation, Hemodialysis Access. kidney.org
• FHN Daily Trial (Chertow GM et al.), New England Journal of Medicine, 2010.
• Palmer S et al. Prevalence of depression in chronic kidney disease. Kidney International, 2013.
• Hospitalization and mortality following non-attendance for haemodialysis. BMC Nephrology, 2020.
• NICE NG107, Renal replacement therapy and conservative management, 2018. nice.org.uk

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This article is general information, not medical advice. It does not diagnose, it gives no doses, and it must never be used to start, stop or change a treatment. Your dialysis prescription, your fluid allowance, your diet and your medicines depend on your own blood results, your own remaining kidney function and your own other conditions, and those decisions belong with you and your kidney care team. If you are unwell, contact your dialysis unit. In an emergency, call your local emergency number.