Caring for a patient at home

Most of the care a patient receives does not happen in a hospital. It happens at home, in the weeks between appointments, done by their family. This article is about that work: what you actually do with your hands, and when. It sits beside two others rather than repeating them — "A guide for caregivers" is about you and how you hold up, and "During treatment" is written for the patient, about their own days.

Before you take them home

• Ask to be shown the mouth care and the feeding once, and to do it yourself while a nurse watches. Reading a discharge sheet in the car is not the same as having done it once.
• Ask for the instructions in writing, in the language you will actually read them in: which medicine, how many times a day, and for how many days.
• Ask who to call and at what hours, and write that number somewhere other than one person's phone.
• Ask what is normal in the first week after this particular operation, so you are not guessing at what counts as a change.

Mouth care after head-and-neck surgery

• Do it at the same times every day. A routine survives a bad night; "we will do it when we remember" does not.
• Keep a torch and a mirror wherever the care is done, and use both. You cannot look after what you cannot see.
• Photograph the mouth on the day you come home — same light, same angle — and again every few days. A change over a week is very hard to see day by day and obvious against a photograph.
• Follow the instructions your surgeon gave for this operation rather than general advice, including this page's. Which rinse, how the wound is handled and what may touch the area are all decided by what was done and where.

Eating, when swallowing is hard

• Eating and speaking can be difficult for a period after treatment to the mouth and throat, and a speech and swallowing therapist works with the patient from the start. Ask them to watch one ordinary meal at home, rather than only a mouthful in the clinic.
• Before you buy anything special, ask the dietitian whether what the house already cooks, softened, is enough. The answer often changes what you spend.
• Weigh on the same scale, on the same day each week, and write the number down. It is one of the few useful things a family can collect between appointments.
• On the difficult days, write down what actually went down. "He isn't eating" and "he managed half a bowl of khichdi and two glasses of water" are different sentences to a doctor.
• Eating is not a test anyone passes or fails. On a hard day the target is fluids and a note for the team, not a full plate.

Medicines, and the record you keep

• One box for every medicine, and one written list beside it — name, dose, what time. The list goes to every appointment.
• Anti-sickness medicine is prescribed for a particular treatment, and when to take it is part of the prescription. Ask for that timing in writing and follow it rather than a general rule.
• Write anything you notice on the day you notice it, with the date. At the next appointment it is the detail that is useful, and by then the detail is gone.
• Keep one folder for everything, oldest at the back, and take the whole folder every time.