Chapter 15: The Later Stages and Saying Goodbye

A Common Situation

A woman in her sixties has been caring for her father at home for several years. Over the past months he has grown weaker. He sleeps more, eats only a little and spends most of the day in his bed by the window, where he can see the tree he planted long ago. At his last appointment, the doctor spoke gently with them both about the time ahead and said that the aim now is to keep him comfortable. The woman is grateful for the doctor's honesty, but she also feels frightened. She wonders whether she will know what to do, whether her father will be in pain and how she will manage when the end comes.

These are among the most natural questions a carer can have, and no one needs to face them alone. In this last chapter I will explain gently what care looks like in the later stages of life. I will describe the idea of palliative care, how to talk about wishes while there is still time, the simple things that bring comfort at home, the signs that the end may be near and how nurses can help a family understand them, what happens in the hours after a death, and how grief and the carer's own life continue afterwards. I hope this chapter brings calm rather than fear, because the end of a life can be cared for with as much tenderness as any other part of it.

Comfort Care and the Person's Wishes

Palliative care is the name care textbooks give to care that focuses on comfort and quality of life when an illness cannot be cured, or when a long life is coming to its natural close. Its aims are simple to say: to relieve discomfort, to protect dignity, to support the person's feelings and beliefs, and to support the family as well. The doctors and nurses look after symptoms such as pain, breathlessness or restlessness and decide how to relieve them. The family's part is to be present, to notice and to tell the nurses or doctors when something seems to trouble the person. Palliative care can be given in many settings, and in many places it can be given at home.

Palliative care looks at the whole person, not only the body. A person near the end of life may have worries about family members, unfinished matters, faith or the meaning of their life. Some people want to talk about memories, some want to see an old friend, and some want to hear a familiar prayer, a piece of music or the sound of grandchildren in the next room. Nurses, doctors and others who work in palliative care are used to these needs and often know who can help with them. A family that asks, "What else could make this time better for him?" is asking exactly the right question.

Palliative care also looks after the family. Caring for someone at the end of life is tender work, but it is also tiring and sometimes frightening, and the people who work in palliative care know this. Nurses can explain what is happening and what may come next, answer the same question as many times as the family needs, and help the family plan who will be with the person and when. In many places there is also help so that the family carer can rest, such as someone who sits with the person for a few hours or overnight. A family that feels supported is better able to stay calm and close, and that calm is a comfort to the person too.

The later stages are an important time to talk about wishes, while the person can still share them. Important questions include where the person would like to be cared for, who the person would like nearby, what matters most in the time that remains and what the person would like to avoid. Some people want to stay at home whatever happens; others feel safer with nurses close at hand. Some have religious or cultural customs that are important to them at the end of life. Listening carefully, without hurrying to reassure or to change the subject, is one of the greatest kindnesses a family can give.

Not everyone wants to talk about these things, and that is all right. Some people say a few important words and then prefer to speak about everyday matters. Others share their wishes slowly, in small pieces, on different days. A gentle way to begin is to ask, "Is there anything you would like us to know, or anything you are worried about?" and then to let the person lead. If the person has written wishes, or has spoken about them earlier, it helps to read them again together and ask whether they still feel right, because wishes can change as life changes.

Once wishes are known, it helps to share them with the person's doctor and nurse and to write them down, perhaps in the care notebook described in Chapter 11. The doctor and nurse can explain what can be arranged, what help is available at home and whom to call at any hour. The rules for recording wishes formally differ from place to place, and the doctor or the official contact points where you live can tell you what applies. Knowing the person's wishes often brings the family a deep sense of peace later, because they can feel sure they did what the person wanted.

Comfort at Home

Much of the care in the later stages is simple, quiet and close. A dry mouth is common when a person drinks little or breathes through the mouth, and gentle mouth care brings great relief. Nurses can show the family how to keep the mouth and lips moist and clean in a way that is safe for this person, for example with a soft, damp swab and a little lip balm. Small sips of water or other drinks may be offered if the person can still swallow safely, but the person should never be pressed to eat or drink. Many families find that caring for the mouth becomes a tender moment of closeness.

Position matters for comfort. A person who spends most of the day in bed may need to change position regularly, gently and with good support, to rest the skin and ease stiffness. Soft pillows can support the arms, the back and the space between the knees. Nurses can show the family how often to change position and how to do it safely for both people, as Chapter 6 explains in more detail. Some people breathe more easily when the head and shoulders are slightly raised. Watching the person's face and listening to small sounds often tells the carer whether a new position feels better. A smooth sheet without wrinkles, clean and dry bedding and light, soft covers all help the skin stay comfortable, and the nurse can say which areas of skin are worth checking each day.

Quiet presence is one of the most comforting gifts of all. Sitting beside the bed, holding a hand, stroking an arm or simply being in the room can tell a person that they are not alone, even when words are no longer possible. Nurses often say that hearing may continue even when a person seems deeply asleep, so it is worth speaking gently, telling the person who is there and what is happening, and saying the things that matter. Many families talk about shared memories, read aloud, play quiet music or sing an old song together.

Familiar things help the room feel like home. A favourite blanket, photographs, flowers from the garden, the sound of birds through an open window or the smell of a much-loved soap can bring comfort. Soft light is often kinder than bright light, and a calm, unhurried atmosphere helps everyone. Visitors can be welcomed when the person wishes, but it is fine to keep visits short or to limit them when the person is tired. A family member can gently explain this to visitors at the door, so that the person does not have to. A pet who has always shared the home may be a great comfort too, if it can lie quietly nearby.

The carer needs comfort and rest in these weeks as well. It is tempting to stay by the bed day and night, but no one can do that for long without becoming exhausted. Many families take turns, so that each person can sleep, eat a proper meal and step outside for some fresh air. Friends and neighbours who offer to help can be given simple tasks, such as bringing food, answering the phone or sitting with the person for an hour. Accepting help at this time is not a sign of loving less. It allows the carer to be present with more calm and more tenderness when it matters most.

Comfort also includes relief from discomfort, and this belongs to the doctors and nurses. If the person seems to be in pain, restless, breathless, sick or distressed, it is important to tell the nurse or doctor promptly. They can explain what they see and decide how to make the person more comfortable. Families sometimes hesitate to call, especially at night, but nurses who work with people at the end of life want to be told. It helps to keep the numbers to call by the phone, along with a note of whom to call first, so that no one needs to search in a difficult moment.

When the End Is Near

As the end of life comes closer, the body slowly begins to change. Many people sleep more and more and may be hard to wake. They often lose interest in food and drink, because the body is gradually needing less. This can be hard for a family, since giving food is such a natural way of showing love. Nurses can explain why these changes happen and how to keep the person comfortable instead, for example through mouth care and gentle company. Care textbooks explain that wanting less food and drink is a usual part of this stage, as the body changes in a natural way, and nurses can tell the family what is helpful to offer and what is better left aside.

Other changes may appear in the last days or hours. Breathing may become irregular, with long pauses, or it may sound noisy when the person can no longer clear the throat. The hands and feet may feel cooler and the skin may change colour a little. The person may speak less, seem confused or restless at times, or appear to be looking at something far away. Not every person shows every sign, and the order can differ. Nurses can explain these signs to the family, say what they mean for this person and help with anything that seems to cause distress. Knowing what may happen often makes the time much less frightening.

Many families want to be present at the moment of death, and some are. Others step out for a short rest, a meal or a phone call and return to find that the person has died. This happens often, and it is not a failure. Some nurses say that a person sometimes seems to slip away when the room is quiet. What matters is the love and care given through the whole time, not one particular minute. A family member who was not in the room can still sit with the person afterwards, hold a hand and say goodbye.

Many families wonder what to say in the last days. There are no perfect words, and the simplest are often the most meaningful. People near the end of life often value hearing that they are loved, that they have mattered, and that the family will be all right. Some families say thank you for a lifetime of care, ask for forgiveness for old hurts or offer forgiveness, and finally say goodbye. These words can be said aloud, whispered, written in a letter and read to the person, or simply shown through touch. Even when the person can no longer answer, saying what is in your heart can bring peace to both of you.

After the person has died, there is usually no need to hurry. Many families take time to sit quietly with the person, to speak to them, to pray or to follow their own customs. It is fine to call other family members to come and say goodbye. The doctor or nurse will have explained beforehand whom to call and what happens next, and it helps to keep this information written down by the phone. The official steps that follow a death, and who takes care of them, differ from place to place, and the doctor, the nurse or the official contact points where you live can explain them.

In the days that follow, there may be many tasks: informing friends and relatives, arranging a funeral or memorial according to the person's wishes and customs, and dealing with papers. Sharing these tasks among family members, as Chapter 13 describes, makes them lighter. It is also kind to let friends and neighbours help with meals, errands or company, since many people want to do something useful and do not know what to offer. A carer who has given so much does not need to carry these days alone.

Grief and the Life Afterwards

Grief is the natural response to losing someone we love, and there is no single right way to grieve. Some people cry often; others feel numb or very tired for a long time. Grief may come in waves, quiet for a while and then strong again, perhaps at a familiar time of day, on a birthday or at the sight of an empty chair. Many carers are surprised to feel relief as well as sorrow, relief that the person is no longer struggling and that the long work of care has ended. Relief and love can live side by side, and feeling relief does not mean that the carer loved the person any less.

Children and young people grieve too, though they may show it differently from adults. A child may seem sad one moment and want to play the next, and this is normal. Children cope best when they are told the truth in simple, gentle words, for example that grandmother's body stopped working and she died, rather than words such as "went to sleep" that can confuse or frighten them. It helps to let children take part in saying goodbye in ways that feel right to them, such as drawing a picture, choosing a flower or sharing a memory. Above all, children need to know that their feelings are welcome and that the adults around them will keep caring for them.

Carers often find that grief brings an unexpected emptiness in daily life. For months or years, the day was shaped by care: the morning routine, the meals, the appointments, the listening at night. When that work ends, the hours can feel strange and quiet, and the carer may wonder who they are without it. This is a common part of grief for carers. It helps to be patient with yourself, to keep a few gentle routines, to eat and rest well, and to spend time with people who knew the person and can talk about them.

Slowly, step by step, life can open up again. Many former carers return to friendships, interests and plans that were set aside, and some take up new ones. It is worth booking your own health check, which may have been postponed during the years of care. Some people find comfort in a group for people who are grieving, in their faith or in quiet time outdoors. If sadness feels too heavy to carry, if daily life does not seem possible, or if you have thoughts of harming yourself, please talk to your doctor or a helpline, or in danger call the emergency number. Reaching out at such a time is a wise and brave step.

Looking back, many carers remember not only the hard days but also the moments of closeness that care made possible: a laugh shared over breakfast, a hand held in the night, a story told one more time, a quiet thank-you. Caring for an older person at home is, in the end, a long conversation of kindness between two people. The person who received care was not only helped with meals, washing and walking. That person was seen, listened to and treated as someone who still mattered, every day.

And the person who gave care received something too. Many carers say they learned patience they did not know they had, found a closeness with their parent, husband, wife or grandparent that they will always treasure, and discovered how much strength and tenderness can live in ordinary hands. I hope that this book has walked beside you through the days of care, and that you can look back on them with gentleness. Whatever lies ahead, the care you have given remains, quietly and warmly, a part of both your lives.

A Question to Think About

When you think of all the care that has passed between you and the person you care for, which small, warm moment would you most like to remember? You might keep that moment close, write it down or share it with someone you love, as a reminder of the good that care has brought into both your lives.