Chapter 11: Working With Doctors, Nurses and Medicines

A Common Situation

A woman in her fifties takes her father to see his doctor. In the waiting room she remembers several things she wanted to mention: he has been more tired lately, he fell once in the kitchen last month, and he has stopped finishing his meals. But when they go in, the appointment moves quickly. The doctor asks her father how he is, her father says that he is fine, and the daughter does not want to contradict him in front of a stranger. They leave with a new paper about his medicines, which she puts in her bag. On the way home she realises that she did not ask any of her questions, and that she is not sure what the new paper means.

Many carers know this feeling. Doctors, nurses and pharmacists are important partners in home care, and working with them well is a skill that can be learned. In this chapter I explain how to be a helpful companion at appointments, how a simple care notebook can make every conversation easier, and how to prepare questions and share what the person you care for wants. We will look at medicines in daily life in the way that care textbooks describe: keeping the list, following instructions, storing medicines safely and asking whenever anything is unclear. Finally, we will look at the sudden signs that mean calling the emergency number, and at a short sheet by the phone that helps everyone act calmly if something happens.

Going to Appointments Together

When an older person goes to an appointment, a family member or friend who comes along can make a great difference. A companion can help with the journey, the waiting and the forms. A companion can also listen, take notes and remember what was said, because it is hard for anyone, at any age, to take in new information while feeling unwell or worried. But the appointment still belongs to the person you care for. Before you go, it is worth asking the person what kind of help is wanted: "Shall I come in with you? Would you like me to speak, or just to listen and write things down?" Some people want a companion beside them the whole time; others prefer to talk with the doctor alone for part of the visit.

In the room, speak to the person you care for, and encourage the doctor and nurse to do the same. If the older person has difficulty hearing, make sure hearing aids are in and working, and ask politely for the conversation to be face to face and a little slower. If the person wears glasses, bring them. Give the person time to answer questions in their own words before you add anything. When you do add something, do it with respect: "Father, may I mention the fall last month?" is very different from talking about the person as if the person were not in the room. This keeps the person's dignity and also helps the doctor hear the person's own view.

The situation at the start of this chapter shows a common difficulty: the person says "I am fine" while the carer has seen changes. Many older people do not want to be a trouble, or they forget small events, or they feel embarrassed to talk about them. There are kind ways to help. You can agree before the appointment which things you will mention together. You can write the main points on a sheet and hand it to the doctor or nurse at the start. Some carers telephone or send a short note to the practice before the appointment, if that is possible where they live, so that the doctor already knows what the family has noticed. The aim is not to overrule the person, but to make sure that the full picture is shared.

Before leaving the room, it helps to check that you have understood. A good habit is to say back the main points in your own words: "So the plan is to come back in a month, and to call if the swelling gets worse. Is that right?" Ask what to watch for at home and whom to call if you are worried, both during the day and at night. If a new paper or instruction is given, ask for it to be explained before you go, and write any notes on it. It is perfectly fine to say "I am sorry, I did not understand that, could you explain it again?" Doctors and nurses would much rather explain twice than have a family go home unsure.

Sometimes the carer cannot be there in person. Then a phone call before or after the appointment, with the person's permission, can keep everyone informed. Some people give written permission for a family member to speak with their doctor; how this works differs from place to place, and the practice can explain what is needed. Remember, too, that the person you care for has a right to privacy. If the person does not want a certain topic shared with the family, the doctor will usually respect that, and the family should respect it too. Trust between the person, the family and the professionals grows when everyone knows that the person's wishes come first.

Keeping a Care Notebook

One of the simplest and most useful tools in home care is a care notebook. It can be a paper notebook kept in one place, a folder, or a file on a phone or computer that the family shares. The idea is to write down, briefly and with dates, what you notice and what happens. When a doctor asks "When did this begin?" or "Is it getting better or worse?", the notebook gives the answer instead of a vague memory. It also shows slow changes that are easy to miss when you see the person every day. Many carers find that the notebook also calms their own mind, because they no longer have to hold every detail in their head.

What goes into a care notebook? A good start is the changes you notice: the date, what changed, and anything that seemed connected. "Tuesday morning: more confused than usual, did not recognise the kitchen. Had slept badly." "Last three days: eating only half of each meal." Falls, even small ones, should always be written down with the time, the place and what happened afterwards. You might also note good days and things that helped, because these are just as useful to know. The notebook does not need perfect sentences. Short, clear notes with dates are the most helpful kind. If the person you care for is able and willing, invite the person to write in the notebook too, or to read what has been written, so that it remains a shared record and not a file kept about someone behind their back.

A care notebook is also the natural place for the practical information that everyone needs. On the first pages you can write the names and contact details of the person's doctor, the pharmacy and any nurses or care workers who visit, and the dates of future appointments. A separate page can hold the list of medicines that the doctor and the pharmacist have given. Another page can hold questions to ask at the next appointment, written down as soon as they come to mind, so that they are not forgotten in the waiting room. When several family members share the care, everyone can read and add to the notebook, and the person who goes to the appointment takes it along.

Preparing questions before an appointment is one of the best gifts you can give to the person you care for and to yourself. A few days before, sit down with the person if possible and ask: "What would you like to ask the doctor? What is bothering you most?" Then add your own questions. Put them in order, with the most important first, because time may be short. Useful questions are often simple: "What should we watch for at home?", "What can we do to make daily life easier?", "Whom do we call if this gets worse?" and "When should we come back?" Write the answers next to the questions during or right after the appointment.

The notebook is also a place to record what the person wants. Care textbooks place great weight on the person's own wishes: what matters most in daily life, what the person is afraid of, how much the person wants to know about health matters, and who should be involved in decisions. Some people have strong views about going into hospital, about certain kinds of care or about where they want to be cared for in the future. If the person has written these wishes down, or has made formal arrangements, note in the notebook where those papers are kept. Sharing these wishes with the doctor and nurse helps them plan care that fits the person, and Chapters 13 and 15 come back to these conversations.

Medicines in Daily Life

Many older people take several medicines, and looking after them is an everyday part of home care. The most important principle is simple: the doctor and the pharmacist are the people who decide about medicines, and the family's role is to follow their instructions carefully and to ask them whenever anything is unclear. A pharmacist is someone trained in medicines who works in a pharmacy, and pharmacists are often easy to reach and glad to answer questions. Good questions to ask a pharmacist include what each medicine is for, the best time of day to take it, whether it should be taken with food, and what to do if a dose is missed. You do not need to understand everything about each medicine. You need to know where the instructions are, how to follow them, and whom to ask.

Keep an up-to-date list of all the medicines the person takes, as the doctor and the pharmacist have given them. The list usually shows the name of each medicine, how much is taken, at what times and what it is for. It should include everything the person takes, including medicines bought without a prescription and any other remedies or supplements, because the doctor and the pharmacist need the whole picture. Keep the list in the care notebook, take it to every appointment and to the pharmacy, and ask for it to be updated whenever something changes. If the person goes into hospital, the list is one of the first things to take along.

Follow the instructions exactly as the doctor and the pharmacist have explained them, and never change anything without asking them first. This means not stopping a medicine because the person seems better, not giving an extra amount because the person seems worse, not skipping a medicine the person dislikes, not breaking, crushing or mixing a tablet into food unless they have said this is safe, and never giving one person's medicine to another. If the person has trouble swallowing tablets, refuses a medicine, or forgets doses, tell the pharmacist or the doctor; there are often other ways that they can suggest. Many pharmacists can also help set up a box with compartments for each day and time, which makes it easier to see whether a dose has been taken.

Store medicines safely. Keep them in their original packaging with the label, in the place the label or the pharmacist suggests, which is often somewhere cool and dry and away from direct sun. Keep them out of the reach of children who visit. If the person you care for has memory problems and might take too much by mistake, it may be safer for the family to keep most of the supply in a closed cupboard and set out only what is needed for the day. Old medicines and ones that are no longer used should not be kept "just in case"; ask the pharmacist how to dispose of them safely where you live.

Ask the pharmacist or the doctor whenever something is unclear or seems different. A tablet that looks different from the last supply, a label that is hard to read, instructions that seem to disagree with what the doctor said, or a new medicine from a second doctor are all good reasons to ask. Changes in the person after a new medicine is started, such as feeling dizzy, unusually sleepy, more confused, unsteady on the feet or unwell in the stomach, are worth telling the doctor or pharmacist about promptly. Write such changes in the care notebook with the date. Asking is never a bother; it is exactly what these professionals are there for.

Moments of change need special care with medicines. When the person comes home after a stay in hospital, the list may have changed: some medicines may have been stopped, others added, and the times may be different. Before leaving the hospital, ask for the new list and for it to be explained, and ask whether the medicines already at home should still be taken. Then show the new list to the person's usual doctor and pharmacist soon after coming home, so that everyone is working from the same page. The same is true when a second doctor prescribes something, when the person stays with another family member for a while, or when someone new, such as a visiting relative or a care worker, starts to help with medicines. A short, clear handover, with the list in hand, prevents most mix-ups.

When to Call the Emergency Number

Most changes in an older person can wait for a normal appointment or a call to the doctor or nurse. But some signs are sudden and serious, and then the right step is to call the emergency number at once. Care textbooks list these signs in plain words. Call the emergency number if the person suddenly has weakness or numbness in the face, an arm or a leg, especially on one side of the body; if the face suddenly droops on one side; if the person suddenly has trouble speaking, finds words hard to understand or speaks in a confused way; or if the person suddenly cannot see properly or loses balance. With these signs, time matters, so do not wait to see whether they pass. Note the time when the signs began, if you can, because the emergency team will want to know.

Call the emergency number as well if the person has pain, pressure or tightness in the chest; if the person has sudden or serious trouble breathing; if the person cannot be woken properly, has fainted or is not responding as usual; or if the person has had a bad fall, especially with a hit to the head, great pain, bleeding that does not stop, or being unable to get up. Sudden confusion, when a person who was clear a few hours ago is suddenly much more muddled, drowsy or agitated, is also a sign that needs urgent help, because it can have causes that the doctors need to look for quickly. If you are not sure whether a sign is serious enough, it is better to call and ask.

When you call, try to stay as calm as you can. Say clearly that you need help for an older person, give the address, describe what you see and when it began, and answer the questions you are asked. Stay with the person and follow the instructions the person on the phone gives you. If possible, unlock the front door, turn on an outside light at night and ask someone else in the house to watch for the ambulance or the team arriving. Keep the medicine list and the care notebook ready to hand over. Afterwards, write down in the notebook what happened, so that it can be shared with the person's doctor.

A short "if something happens" sheet, kept by the phone or on the inside of a kitchen cupboard door, helps everyone in the house act quickly. On one page, write the person's full name, date of birth and home address; the conditions the doctor has named; any allergies; and where the current medicine list is kept, or a copy of it. Add the contact details of the person's doctor and of two family members or friends. If the person has written wishes about care, write where those papers are kept. Visiting relatives, neighbours and care workers can then find what they need without searching, even in a moment of worry.

It also helps to talk calmly as a household about what each person would do in an emergency. Who will call? Who will stay with the person? Who will tell the rest of the family? A carer who lives alone with the person may want to keep a phone within reach at all times and agree with a neighbour or relative that they can be called at any hour. Families who have talked this through once feel less frightened, not more, because they know that they have a plan. Look at the sheet every few months, and whenever something changes, so that the details stay correct. Most days will be ordinary days, and the sheet will simply stay by the phone. Its quiet presence is a kind of reassurance.

A Question to Think About

If you went with the person you care for to an appointment next week, what is the one thing that person would most want the doctor to understand? You might ask the person this question over a cup of tea, and write the answer at the top of the next page in the care notebook.