Hands That Help

A Gentle Guide to Caring for an Older Person at Home

Before You Begin

Care often begins quietly. A mother needs a little help with the shopping, a husband starts to hold the handrail on the stairs, a grandfather asks the same question twice in one afternoon. Little by little, someone in the family finds that they have become a carer, often without ever deciding to. If that is where you are now, or if you think it may be where you are one day, this book was written for you.

It is a book for anyone: grown-up children looking after a parent, husbands and wives caring for each other, grandchildren, neighbours and friends who lend a hand, and older people who want to understand the care they may one day receive. You do not need any special knowledge to read it. The words that carers and nurses use are explained the first time they appear, and there is a short list of them at the end of the book.

The knowledge in these pages is the basic knowledge that nurses and care workers learn in their training: how the body and the mind change in later life, how to help someone move safely, how to make mealtimes, washing and the night easier, and how to look after yourself while you look after someone else. I have tried to explain it gently and simply, the way a kind teacher would, and to show it in the common situations that so many families meet at home.

Each chapter begins with one of those situations and ends with a question to think about. You can read the book from the first page to the last, or open the chapter that fits the week you are having. The questions are there to help you pause, alone or together with the person you care for and the rest of the family.

A few things are worth keeping close at hand from the start. What help is available, who pays for it and how to ask for it are different from country to country, and sometimes from town to town, so the official contact points where you live, such as the local public office for older people and the person's own doctor, are the best places to ask what applies to you. When you are worried about a change in the person's health, talk to their doctor or nurse; in an emergency, call the emergency number. And if you ever notice signs that an older person is being hurt or neglected, or if you fear that you yourself might hurt the person you care for, please contact a helpline or the official contact point; asking for help is a caring act.

Caring for someone at home is hard work, and it is also one of the most human things we do. I hope this book makes the work a little lighter, and helps you to find, in the middle of the everyday tasks, the moments of closeness that care can bring to both of you.

Chapter 1: When Care Begins at Home

A Common Situation

A woman in her fifties visits her mother every Sunday afternoon. For a long time the visits were simple: tea, a walk to the shops, a talk about the family. Over the past year, the daughter has begun to notice small things. The fridge holds very little food, and some of it is old. Letters lie unopened on the table. Her mother, who always loved to cook, now says she is "not very hungry" and eats bread and fruit most days. One Sunday the daughter finds a bruise on her mother's arm, and her mother says she slipped in the bathroom but did not want to worry anyone. On the drive home, the daughter wonders whether her mother needs help, what kind of help, and whether she herself is ready to give it.

Moments like this one happen in many families. There is often no single day when someone decides to become a carer. Care grows quietly, one small task at a time, until one day a person realises that they are looking after someone. This chapter explains how care at home often begins, what the word "caregiving" means in everyday life, and a few ideas that care workers and nurses learn at the very start of their training. It also introduces the circle of people who can share the work, and it gives a short map of the rest of the book. You do not need to know anything about care before you begin. You only need the wish to help, and that wish has brought you here already.

How Care Often Begins

Care at home usually begins in one of two ways. The first way is slow. A father who was always proud of his garden stops going outside. A grandmother starts to leave the stove on, or forgets whether she has taken her morning tablets. A husband notices that his wife holds the banister tightly on the stairs and avoids the bath. None of these changes is dramatic on its own, and each one is easy to explain away. Only when the family looks back do they see a pattern. Many carers say that they were already helping for months before they used the word "care" at all.

The second way is sudden. A fall, an illness or a stay in hospital can change everything in a few days. A person who managed alone on Monday may come home on Friday needing help to stand, to wash or to remember the new instructions from the doctor. Families in this situation often feel that they must learn a great deal very quickly, while they are also tired and worried. If this is how care has begun for you, it may help to know that the first weeks are usually the hardest. Routines form, questions find answers, and the household slowly finds a new shape. It is also normal for the person you care for to need more help just after a hospital stay and to regain some strength in the weeks that follow.

At the start, the carer's own feelings deserve a moment of attention too. Many people who begin to care feel a mixture of love, duty, worry and sometimes resentment, all at the same time. A son may feel glad to help his father and, in the same week, frustrated that his own plans have been put aside. A wife may feel tender towards her husband and also frightened about what lies ahead for both of them. These mixed feelings are very common and very human. They do not mean that you care too little. Noticing them early, and finding someone to talk to about them, makes it easier to keep going with patience over the months and years that care may last.

Whichever way care begins, it often begins with worry. You may notice a change and feel unsure whether to say anything. The older person may notice it too and feel embarrassed, or afraid of losing their freedom. A gentle first step is simply to talk. You might say what you have noticed, in plain words and without blame, and ask how the person feels about it. "I saw that the letters are piling up. Would it help if we went through them together?" is easier to hear than "You cannot manage anymore." Chapter 4 of this book looks at talking and listening in much more detail.

It also helps to remember that change in later life is not always a loss. Some older people find that a little help with the heavy tasks gives them more energy for the things they enjoy. A woman who no longer has to carry shopping home may have the strength to visit a friend. A man who receives help with the garden may sit in it again with pleasure. Care, at its best, is not about taking a life over. It is about helping a person keep living the life they value, in the place they know, for as long as that is good for them.

When you first notice changes, it can be useful to keep a few simple notes. Write down what you saw, on which day, and anything that seemed to make it better or worse. These notes do not need to be long or neat. They help you see whether something is slowly changing or has changed all at once, and they are very helpful when you speak with a doctor or nurse; Chapter 11 shows how to gather them in a simple care notebook. If you are worried about a change in the person's health, talk to the person's doctor or nurse; they are the right people to look into it. If a change is sudden and serious, such as sudden weakness, trouble speaking or trouble breathing, call the emergency number.

The Everyday Activities of Life

Nurses and care workers often use a simple idea to understand what kind of help a person needs. They speak of the "activities of daily living". These are the basic things that every adult does to look after their own body each day: eating, washing, dressing, using the toilet and moving about, for example getting out of bed, standing up from a chair and walking from one room to another. Some lists also include keeping control of the bladder and bowels, and looking after one's teeth and hair. These activities are so ordinary that most of us never think about them, until one of them becomes hard.

There is a second, wider group of tasks that textbooks sometimes call the "instrumental activities of daily living". The name is long, but the idea is simple. These are the tasks that keep a household running and keep a person connected to the world: shopping, cooking, cleaning, doing the laundry, handling money and bills, using the telephone, travelling outside the home, keeping appointments and taking medicines as the doctor and pharmacist have explained. Many people first need help with these wider tasks, long before they need help with washing or dressing. The mother in the opening situation, with her empty fridge and unopened letters, is a common example.

Thinking in terms of these activities is useful for several reasons. First, it turns a vague worry into something concrete. Instead of feeling that "things are not right", you can see that the person manages washing and dressing well but finds cooking and shopping hard. Second, it helps you notice what the person can still do, which is just as important as what they cannot do. Third, it gives you a shared language with the professionals you may meet later. When a nurse or a care worker asks how the person is managing, you can answer clearly, activity by activity.

One way to begin is to think quietly through an ordinary day in the person's life, from waking to going to sleep. How does the person get out of bed? Do they wash and dress without help, or with a little help, or not at all? How do meals happen? How does the person get to the toilet at night? Who does the shopping, and who opens the post? You may find that the answers surprise you. Some families discover that they are already doing far more than they realised. Others discover that the person manages better than they feared, and that one or two small changes would make a big difference.

As you think, keep in mind that the need for help is rarely the same every day. Many older people have good days and harder days. A person may dress easily on a warm afternoon but struggle on a cold morning when the joints are stiff. Someone may manage well at home but feel lost in a busy shop. Tiredness, a cold, poor sleep or a sad piece of news can all make ordinary tasks harder for a while. For this reason, it is wise to look at a whole week rather than a single day before deciding what help is needed. It is also wise to look again from time to time, because needs can grow smaller as well as larger, for example when a person regains strength after an illness.

It is best to do this thinking with the person, not about them, whenever that is possible. The older person knows their own day better than anyone. They may tell you that mornings are hard because their hands are stiff, or that they avoid the shops because the walk home is long. They may also tell you what matters most to them, such as cooking their own breakfast or choosing their own clothes. These wishes are a guide for everything that follows. A plan made together is more likely to work, and it shows respect for an adult who has run their own life for many years.

Supporting What the Person Can Still Do

One of the most important ideas in care is easy to say and harder to practise: support what the person can still do, instead of doing everything for them. Care textbooks sometimes call this an "enabling" approach. The carer's task is not to take over each activity, but to give just enough help for the person to do as much as possible themselves. If a man can button his shirt but not tie his shoes, the carer ties the shoes and leaves the buttons to him. If a woman can stir the soup but cannot lift the heavy pot, the carer lifts the pot and hands her the spoon.

There are good reasons for this approach. The body keeps the strength and skills that it uses, and slowly loses those that it does not use. A person who is helped out of every chair may find, after some weeks, that standing up alone has become much harder. In the same way, a person who no longer plans meals or handles small sums of money may lose confidence in these skills. Using abilities, even slowly and imperfectly, helps to keep them. Many carers find that the person they care for becomes brighter and more active when they are given real tasks again.

There is also a reason that has to do with dignity. Every adult wants to feel useful and in charge of their own life. Being helped with everything, however kindly, can make a person feel small or like a burden. Doing things for oneself, even slowly, says "I am still me". This is part of what care textbooks call "person-centred care": seeing the whole person, with their own history, habits, likes and wishes, and shaping the care around them rather than around the routine of the house. A woman who has always made her bed with neat corners may want to keep doing it, even if it takes her a long time.

In practice, this approach needs patience, and patience is not always easy when you are busy. It is often quicker to dress someone than to wait while they dress themselves. A helpful habit is to plan more time for the activities that the person can do with support, and to break each activity into small steps. You might lay out the clothes in the order they are put on, or place a chair where the person can sit to pull on socks. You might offer one step of help and then wait. Many carers learn to ask, "Would you like me to help with this part?" instead of simply taking over.

It can help to know that help comes in different amounts. Care workers often think of a kind of ladder. On the lowest step, the person only needs someone nearby, watching quietly in case anything goes wrong. On the next step, the person needs a reminder or a prompt, such as "Your glasses are on the shelf" or "It is time for lunch". Next comes guiding: showing the way, handing over the next item, or explaining one step at a time. Only on the highest step does the carer do the task with their own hands. Starting with the smallest amount of help that works, and moving up only when it is needed, keeps the person as active and confident as possible.

Supporting what a person can do does not mean leaving them to struggle or to take risks that are not safe. If a task has become dangerous, such as climbing a ladder or carrying hot water up the stairs, it is right to find another way. The aim is a balance between safety and independence, and that balance is different for every person and may change over time. Later chapters look closely at safety in the home, at moving and walking, and at washing and dressing, and each of them returns to this same idea of helping the person do what they still can.

The Circle of Care

When care begins, one person often takes on most of the work, especially a daughter, a son, a husband or a wife who lives nearby. It is easy for this person to feel that everything rests on their shoulders. Care, however, works best when it is shared by a circle of people. At the centre of the circle is the older person, with their own wishes and abilities. Around them may be family members, friends and neighbours, and further out, professionals such as doctors, nurses, pharmacists, therapists and care workers. Each person in the circle can help in a different way.

Family members who live far away can still be part of the circle. They can telephone regularly, help with letters and paperwork, find information, or come for a few days so that the main carer can rest. Friends and neighbours can be very important too. A neighbour who looks in each morning, or who brings in the post, may notice when something is wrong. A friend who comes for coffee once a week brings company and news from the wider world. Many older people value these small, regular contacts as much as any practical help. Chapter 13 looks at family talks and sharing the work in more detail.

Professionals are part of the circle as well. The person's doctor can look into changes in health, and nurses can explain how to manage everyday care safely. Pharmacists can answer questions about medicines, and therapists can suggest ways to make moving and daily tasks easier. In many places there are also care workers who visit the home, day centres where older people spend part of the day, and other kinds of support. Knowing that this help may exist can make the first steps feel less lonely. Chapter 14 describes these kinds of outside help, and Chapter 11 explains how to work well with doctors, nurses and medicines.

It is important to know that care systems differ from country to country. What help exists, who pays for it and how to apply for it are different in different places, and they can also change over time. The best way to find out what applies to you is to ask the official contact points where you live. The local public office for older people or for care can usually explain what help is available and how to begin. The person's doctor is another good first contact, and can often tell you where to ask next. It is worth making these first enquiries early, before a crisis, so that you know where to turn if more help is needed.

This book follows the path that many families walk. The next two chapters help you understand the person you care for: how the body changes with age, and how feelings, memory and the mind may change. After that come the practical chapters of daily life at home: talking and listening, safety in the home, moving and walking, meals, washing and dressing, the toilet, and sleep and the shape of the day. Then the book turns to working with doctors and nurses, to caring for yourself as a carer, to family talks, and to help from outside the home. The last chapter speaks gently about the later stages of life and saying goodbye. You may read the chapters in order, or turn first to the one that matters most to you today.

Finally, I would like to say something about you, the reader. Whether you are a grown-up child, a husband or wife, a grandchild, a neighbour, or an older person thinking about your own future, you are already doing something valuable by learning. Care is a skill that anyone can learn, step by step, and nobody begins as an expert. You will make mistakes, and so does everyone who gives care. What matters most is not perfection, but kindness, attention and the willingness to ask for help when you need it. Looking after yourself is part of looking after the person you care for, and Chapter 12 is given to that subject alone.

A Question to Think About

If you imagine an ordinary day in the life of the person you care for, from waking to sleeping, which parts of that day can the person still do on their own, and which parts are you helping with already? You might think about this quietly by yourself first, and then, when the moment feels right, talk it over with the person, so that the two of you can see the day through each other's eyes.