Afterword

When I think of caregiving at home, I think first of hands: a hand on an elbow on the stairs, a hand testing the warmth of the bath water, a hand holding a cup steady, a hand resting quietly on a blanket in the evening. Most of care is made of small movements like these, repeated day after day. They are rarely noticed and almost never praised, and yet they are what allow a person to go on living in their own home, among their own things, with the people they love.

In this book I have tried to gather the basic knowledge that nurses and care workers learn, and to set it in the ordinary rooms where care really happens: the kitchen, the bathroom, the hallway at night, the chair by the window. None of it asks you to become a professional. It asks you to watch carefully, to go slowly, to let the person do what they can, and to ask for help when you need it.

If there is one thing I hope you will remember, it is that care goes in both directions. The person you care for is not only someone who receives help. They are also someone who gives: their stories, their humour, their way of seeing the world, sometimes simply their trust. Many carers say, years later, that the time of caring was one of the hardest and also one of the closest times of their lives.

Please be as kind to yourself as you are to the person you care for. Rest, eat well, keep a friend close and share the work. Care is not a test that you pass or fail. It is a long road walked together, one ordinary day at a time, and every day that you walk it with patience and warmth is a good day's work.

Reading This Book Together

This book can be read alone, but many families find it helpful to read a chapter together and talk about it afterwards. The person you care for may want to read it too; the chapters were written so that an older person can read them and recognise their own wishes in them. A brother or sister who lives far away can read the same chapter in the same week, so that the next phone call starts from shared knowledge.

When you talk about a chapter, begin with what is going well, then talk about what is hard. Let the person you care for speak first about their own life. Write down anything you decide in the care notebook described in Chapter 11, and come back to it after a few weeks to see what has changed. The questions below, one for each chapter, can help to start the conversation.

One Question for Each Chapter

Chapter 1: Which tasks of the day does the person you care for still enjoy doing alone, and how can the rest of the day be shaped around them?

Chapter 2: Which change of later life, in seeing, hearing, balance or energy, affects the person's day most, and what one small change could make it easier?

Chapter 3: What helps the person feel calm and like themselves on a difficult day?

Chapter 4: Which choices in the day could be handed back to the person, so that they decide more for themselves?

Chapter 5: If you walk through the home slowly at night, with only the light the person would have, where would you be most likely to trip?

Chapter 6: Which movement in the day is hardest for the person, and who could show you a safer way to help with it?

Chapter 7: Who could share a meal with the person this week, so that eating is also a time of company?

Chapter 8: In washing and dressing, which steps does the person want to keep doing on their own?

Chapter 9: What would make the way to the toilet easier, especially at night?

Chapter 10: What gives the person's day a reason to get up in the morning?

Chapter 11: What would you want to have written down and ready by the phone if something happened suddenly tonight?

Chapter 12: When did you last have time that was only for yourself, and how could you make room for it again?

Chapter 13: Which task could someone else in the family take over, even for one day a month?

Chapter 14: Which question would you like to ask the official contact point where you live, and when could you ask it?

Chapter 15: Has the person you care for had a chance to say what matters most to them for the time ahead?

Words Used in This Book

Activities of daily living: the basic tasks of looking after oneself, such as eating, washing, dressing, using the toilet and moving about. Care workers often look at these tasks to understand how much help a person needs.

Care notebook: a simple notebook where the carer writes down changes, questions, appointments and the person's wishes, so that the whole circle of care can share the same information.

Circle of care: all the people around the person who help in some way, including the person themselves, family, friends, neighbours and professionals.

Commode: a chair with a toilet seat and a removable container, which can be placed near the bed so that the toilet is close at hand, especially at night.

Day centre: a place where an older person can spend part of the day in company, with activities and meals, while the carer has some time to rest or work.

Dehydration: a lack of water in the body. Older people may feel less thirsty, so drinks offered regularly through the day are an important part of care.

Dementia: a word for a group of conditions that cause changes in memory, thinking and behaviour that affect daily life. A doctor can look into the causes of memory problems.

Incontinence: when a person cannot always control the bladder or the bowels. It is common, it is nobody's fault, and a doctor or nurse can look into it.

Occupational therapist: a professional who helps people to manage the tasks of daily living, for example by suggesting changes in the home or new ways of doing things.

Palliative care: care that focuses on comfort, dignity and quality of life when an illness cannot be cured or when life is coming to its natural close. It also supports the family.

Person-centred care: care that is shaped around the person's own history, habits, wishes and values, rather than around a fixed routine.

Physiotherapist: a professional who helps people to move, to keep their strength and balance, and to use walking aids safely.

Pressure sores: damage to the skin and the tissue under it, caused by pressure on one place for a long time, often over bony parts of the body. Changing position and checking the skin help to prevent them.

Respite care: care given by someone else for a while, for a few hours or a few days, so that the main carer can rest.

Short stay: a stay of a few days or weeks in a place where care is provided, often to give the main carer a rest.

Where to Turn for Help

The official contact points where you live are the first place to ask about help with care: the local public office for older people or for care, and the person's own doctor. They can tell you what kinds of help exist where you live, how to apply and what it costs.

When you are worried about a change in the health of the person you care for, talk to their doctor or nurse. When something sudden and serious happens, such as a bad fall, trouble breathing, chest pain or sudden weakness or confusion, call the emergency number.

If you notice signs that an older person is being hurt, frightened, neglected or deprived of their money or belongings, please contact a helpline or the official contact point. If the person is in danger, call the emergency number. The same is true if you ever fear that you yourself might hurt the person you care for: asking for help early protects you both.

If you feel that you cannot go on, or if you have thoughts of harming yourself, please contact a doctor, a helpline or the emergency number now. You deserve care too.

About the Information in This Book

The knowledge in this book is the basic knowledge of caregiving and of later life that nurses and care workers learn in their training, explained for families caring at home. The common situations at the start of each chapter are imagined, drawn from moments that many families share.

Care systems, services and rules are different in different countries and regions. The official contact points where you live, together with the doctors and nurses who know the person you care for, can tell you what applies to you and help you with the next step.