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For families and carers

Caring for yourself

Nobody hands you a diagnosis. Nobody books you an appointment. Nobody asks how you are, except politely, in a corridor, on the way to ask about somebody else. This page is the one that is about you.

Burnout is not a character flaw

Burnout is not weakness, and it is not a sign that you love them less. It is the predictable result of doing an open-ended, physically tiring, emotionally heavy job with no rota, no training, no pay and no end date, usually while also doing your actual life.

Dialysis is a particularly hard illness to care through, because it is not a crisis followed by recovery. It is a permanent timetable. There is no week when it stops. Crises are exhausting, but they are finite, and people rally round them. A timetable is not finite, and after the first few months, nobody rallies round anything.

What it tends to look like from the inside

  • You are tired in a way that sleep does not fix.
  • You have stopped doing the things that used to restore you, and you cannot remember deciding to stop.
  • You are short-tempered with them, and then flooded with guilt about it.
  • You have started to dread the days you used to look forward to.
  • You are ill more often, or you are ignoring something of your own that you would have taken to a doctor two years ago.
  • You have quietly stopped seeing people, because it is easier than explaining.
  • You feel numb rather than sad, and you have started operating rather than living.
  • Some part of you sometimes wishes it were over, and that thought frightens you more than anything else on this list.

If several of these are true, you are not failing at this. You are doing it without enough support, and that is a fixable problem with a different solution from trying harder.

What you are allowed to feel

You will feel resentment. Towards the illness, and sometimes, unmistakably, towards them. This is one of the most common things carers feel and one of the least often said out loud, because saying it feels like a betrayal of someone who is suffering more than you are. It is not a betrayal. It is a signal that you are carrying more than one person can carry.

You will feel guilt, usually about the resentment, and often about ordinary things: an afternoon off, a good meal, an hour when you did not think about them.

You will grieve, and you will grieve while they are still here. The person you married or grew up with has changed. The future you had planned has been rewritten by a machine and a timetable. That is a real loss, and you are allowed to mourn it without waiting for permission from a death.

You may feel a flash of relief at the idea of it ending, and then be horrified at yourself. Almost every long-term carer meets that thought at some point. It does not mean you want them to die. It means you are exhausted, and exhausted people want the exhaustion to stop.

And you may feel fiercely, unsentimentally proud, and love them more clearly than you ever did before. Both things live in the same house.

If they dialyse at home, you are part of the treatment

If they dialyse at home, you are not only a partner. You are, in practice, part of the treatment team. You may be the person who sets up the machine, who watches the alarms, who helps needle a fistula, who deals with the exchanges, and who is alone in the house with someone whose blood is going through a circuit.

That burden is real, and it is routinely under-acknowledged in the way home dialysis is discussed. Home therapies are usually presented in terms of the freedom they give the patient, and the training and the responsibility are usually presented as a technical hurdle rather than as an ongoing weight sitting on one particular person, who is you.

Name it. Say it to the home therapies team, in those words. Ask what support exists for care partners specifically, ask what the plan is if you are ill, and ask what respite looks like. A home dialysis programme that has no answer for the partner has a gap in it, and you are allowed to point at the gap.

Asking for help is part of the job

Asking for help is not an optional extra bolted onto caring. It is part of doing it well, for the simple mechanical reason that a carer who collapses stops being a carer.

The kidney team is not only there for the patient. Kidney care in many systems includes a renal social worker, and renal counsellors or psychologists as part of the standard multidisciplinary team, alongside patient and carer associations and peer support. Most families never find out, because nobody offers, and because a carer in a clinic room is trained by a hundred small cues to say "I am fine".

What to ask for, and who to ask

  • Ask the unit directly: what support is there for me, not for him or for her, for me. Say the word carer. Say the word tired.
  • Ask to speak to the renal social worker. Ask early, while you still have the energy to make the call, not at the point where you cannot.
  • Ask whether there is counselling or psychology available through the renal service, and whether it is open to family members.
  • Ask whether there is a patient and carer association or a peer group. Talking to someone twelve months ahead of you is worth more than any leaflet.
  • Ask what respite exists, and what happens if you get ill. Have the answer before you need it, not during.
  • Ask somebody in the family to take one fixed, repeating job. Not "let me know if you need anything", which is a way of doing nothing politely. One job, every week, on the calendar.
  • Keep your own doctor. Keep your own appointments. Your health is not a luxury item to be deferred until this is over, because this may not be over for years.

Things you are allowed to do

  • You are allowed to say no.
  • You are allowed to be somewhere else, doing something that has nothing to do with kidneys, without earning it first.
  • You are allowed to keep a friendship, a job, a faith, a walk, a football team, an evening.
  • You are allowed to find it boring as well as frightening. Long illness is both.
  • You are allowed to need help without waiting until you are in crisis to deserve it.
  • You are allowed to have limits, and to say what they are out loud, kindly and early, rather than discovering them by breaking.

Sources

  1. NG107: Renal replacement therapy and conservative management (decisions made jointly with the person and, where they wish, their family and carers) (NICE, 2018)
  2. Home haemodialysis and peritoneal dialysis: what is involved for a care partner (NIDDK)
  3. Prevalence of depression in chronic kidney disease: systematic review and meta-analysis (Palmer S et al., Kidney International, 2013)
  4. Living with kidney disease: support for families and carers (Kidney Care UK)

A note on what is not on this page. You will find websites quoting precise percentages for carer burnout and carer depression. We have not published any, because we could not trace a figure we trust for this population, and we would rather tell you the truth qualitatively than a number confidently. What is well established is that the burden on care partners in dialysis is real, is under-acknowledged, and is supported by services that exist and that you have to ask for.