Chapter 14: Help From Outside the Home

A Common Situation

A man in his seventies has been caring for his wife since her strength began to fade two years ago. He cooks, helps her wash and dress, and walks beside her to the bathroom at night. He has always been proud that the two of them manage on their own. Lately, though, he has hurt his back, and some mornings he finds it hard to help his wife out of bed. Their daughter suggests asking for outside help. The man hesitates. He is not sure what kinds of help exist, whom to ask or what strangers in the house would mean for his wife's privacy and for his own pride. He also wonders, quietly, whether asking for help means that he has failed her.

Many carers feel exactly this hesitation, and it is worth saying clearly at the start: asking for help is not a failure. It is one of the most caring decisions a family can make, because good help protects both the person who receives care and the person who gives it. This chapter explains where to begin asking, the kinds of help that exist in many places, how to prepare for the first conversation, how to work well with care workers and nurses who come into the home, how to think calmly about another place to live if home care becomes too much, and how to notice the signs that an older person may not be safe, wherever care happens.

Where to Begin Asking

What help exists, who pays for it and how to apply are very different from one country to another, and sometimes from one area to another within the same country. For this reason, the best first step is to ask the official contact points where you live. In many places this means the local public office that deals with older people or with care, and the person's own doctor, who often knows what help is available nearby. A nurse, a hospital social worker or a pharmacist may also be able to point the family in the right direction. These people answer such questions every day, and a family should never feel that a question is too small to ask.

When a family first contacts an official office, someone may ask about the older person's daily life: what the person can still do alone, what has become difficult and who is helping now. In many places a trained worker visits the home or talks with the family to understand the person's needs before any help is arranged. This can feel like an examination, but its purpose is to find help that fits. It is important that the older person takes part as fully as possible, because the help is for that person and should match that person's own wishes. The office can also explain what the family may need to pay and what papers are needed.

A little preparation makes the first conversation much easier. The care notebook described in Chapter 11 is very useful here, because it shows what has changed and when. It also helps to write a short list of what is hard in daily life, in plain words: "She cannot get out of the bath alone," "He forgets whether he has eaten," "I cannot lift him when he slips," or "I have not slept a full night for weeks." Families sometimes leave out the carer's own difficulties because they seem less important. They are important, and the people who arrange help need to hear them.

It also helps to write down your questions before the conversation and to note the answers as you go. Useful questions include what kinds of help are available, how long it usually takes to arrange them, what they cost, whom to call if something changes and whether there is help for the carer, such as rest or advice. If anything is unclear, it is fine to ask the person to explain it again or more slowly. Many families bring a second person, such as a son, a daughter or a friend, to listen and take notes. Two sets of ears remember more than one.

Arranging help can take time, and families are sometimes passed from one office or one person to another. It helps to keep a simple record of each contact: the date, the name of the person you spoke with, what they said and what will happen next. This record makes it easier to follow up politely if nothing has happened after a while, and it saves the family from explaining everything again from the beginning. If needs grow quickly while you are waiting, for example after a fall or a stay in hospital, it is right to call again and say so clearly. The people who arrange help need to know when a situation has changed.

Some older people are unhappy at first about the idea of outside help. They may worry about losing privacy, about strangers seeing their home or about what the neighbours will think. It helps to talk openly about these worries and to begin with something small that the person can agree to, such as help with cleaning or a weekly visit from a nurse to check the skin. When the person keeps choices, such as the time of the visit or which tasks are done, the help feels like support rather than a takeover. Many people who resisted help at first later say they wish they had accepted it sooner.

Kinds of Help in Many Places

The help available differs from place to place, but care textbooks describe several kinds of help that exist in many countries. Knowing the kinds makes it easier to ask the right questions. One common kind is the visiting care worker, sometimes called a home care worker or a home helper. A visiting care worker comes to the home at agreed times to help with daily tasks such as getting up, washing, dressing, preparing meals, using the toilet or going to bed. Some visits are short and focused on one task; others last longer. A good visiting care worker supports what the person can still do, as described in Chapter 1, rather than simply doing everything.

A second kind is the visiting nurse, sometimes called a community nurse or a home nurse. A visiting nurse comes to the home to look after health needs that a family cannot manage alone: checking the skin, caring for a wound, watching for changes, helping with health equipment and explaining what the doctor has advised. A visiting nurse can also teach the family safe ways to help with moving and personal care, and is often a calm, experienced person to ask when something seems different. In many places a visiting nurse is arranged through the person's doctor or the local office.

A third kind of help happens outside the home. A day centre is a place where older people can spend part of the day in company, with activities, a meal and sometimes help with bathing, while trained staff look after them. Many people enjoy the conversation, the outing and the change of scene, and the family carer gains a few hours of rest. A short stay is a stay of several days or longer in a place where staff provide care around the clock, so that the family carer can rest, travel or recover from an illness. Day centres and short stays are both forms of the respite care that Chapter 12 explains.

Other kinds of help support daily life in smaller ways. In many places meals can be delivered to the home, which helps when cooking has become difficult or tiring. There are services that help with cleaning, laundry or shopping, and in some areas there are volunteers who offer company, a friendly phone call or a lift to appointments. There may also be groups where carers can meet one another, share experiences and hear practical ideas. The official contact points can usually tell a family which of these exist nearby and how to reach them.

Equipment and changes to the home are another important kind of help. A shower chair, a raised toilet seat, grab bars, a bed that can be raised and lowered or a walking aid can make daily tasks safer and easier for both the person and the carer. An occupational therapist or a physiotherapist can visit to see what would help most and show how to use it. In some places there is help with the cost of equipment or with adapting the home, such as widening a doorway or building a ramp. It is wise to ask a professional before buying anything, because the right piece of equipment depends on the person and the home.

Families do not need to take all these kinds of help at once. Many start with one, see how it works and add more when needs change. It is also fine to stop or change help that does not suit the person. A useful way to think about outside help is as a set of tools: each tool solves a different problem, and the family, together with the older person and the professionals, chooses the tools that fit this home and this life.

Working Well With Care Workers

When care workers or nurses begin coming into the home, the first weeks are a time for everyone to get to know one another. The older person may feel shy or uneasy, and the family carer may feel unsure about handing over tasks. It helps to welcome the worker warmly, to introduce the person by the name the person likes to be called and to explain a little about who the person is: a former teacher who loves gardening, a grandmother who always takes her tea strong, a man who likes the radio on in the morning. Care workers learn that knowing the person's story is part of good care.

Many families find it useful to write a short page about the person and keep it where visiting workers can see it. The page can describe daily habits, likes and dislikes, how the person prefers to be helped with washing or dressing, what the person can do alone, any hearing or sight needs and what usually comforts the person when he or she is worried. It can also list the family's contact numbers. This page saves the older person from explaining the same things to every new face, and it helps different workers give care in a steady, familiar way.

Clear, friendly communication helps the arrangement work well. Some families keep a notebook in the home, as part of the care notebook or beside it, where care workers and family members write short notes after each visit: what was done, how the person seemed, anything to watch. The family can also tell the worker about changes, such as a poor night or a new instruction from the doctor. If a visit is cancelled or the time changes, it helps to know whom to call. A worker who feels trusted and informed is better able to notice small changes and to mention them early.

Care workers and nurses are trained professionals, and they work best when they are treated with respect. They often have many visits in one day and limited time in each home, so it helps to agree clearly which tasks they will do. A kind word, a thank-you or a cup of tea when time allows can make a real difference to someone who does demanding work. At the same time, the older person remains the head of his or her own home. The person's privacy, habits and wishes should be respected by everyone who comes in.

It can take time for the older person and a new care worker to feel at ease with each other, especially with personal care such as washing or using the toilet. Family carers sometimes stay close by at first, which can be reassuring, but it often helps to step back a little after the first visits so that the person and the worker can build their own relationship. Many carers also learn to use the time of a visit for themselves: a walk, a nap, a phone call with a friend or simply a cup of tea in another room. That time is not wasted. It is part of what makes the help worthwhile for the whole household.

Sometimes something does not go well. A worker may arrive late, rush a task or not get along with the person. It is fine to raise a concern, and it usually works best to do so calmly and early, first with the worker if it feels comfortable, and then with whoever arranged the help. Describe what happened, when and how it affected the person, and say what you would like to change. Most problems can be solved with a conversation. If the person does not feel comfortable with one worker, it is reasonable to ask whether a different worker is possible.

When Home Care Becomes Too Much

For many families, care at home works well for a long time, especially with outside help. For some, there comes a point when it becomes too much. The person may need help through the whole night, the carer's own health may be failing, or the home may no longer be safe even after changes. Thinking about another place to live, such as a home where care staff are present day and night, is not a betrayal. It can be a loving decision that gives the person safer care and allows the family to return to being a husband, a wife, a daughter or a son rather than an exhausted carer.

Such a decision is best thought through calmly and, whenever possible, together with the older person. The person's wishes, fears and values matter as much here as anywhere. Some people are relieved not to worry about being a burden; others feel deep sadness at leaving a home of many years. It helps to talk early, before a crisis forces a hurried choice, and to involve the person's doctor, nurse or the official contact points, who can explain what options exist where you live and how they are arranged. A family can also ask whether more help at home might be possible first.

If the family and the person decide to look at other places to live, visiting is very helpful. A visit shows things no description can: whether the people living there seem comfortable, how the staff speak to them, whether the rooms are clean and bright, and what the place feels like. It is reasonable to ask many questions. Families often ask how many staff are present during the day and at night, how the place supports what each person can still do, how meals and activities are arranged, how the staff work with doctors and nurses, how families can visit and stay involved, and what happens if care needs change. Visiting more than once, at different times of day, can give a fuller picture.

A move to a new place is a big change, and the family's role does not end on moving day. Familiar things such as photographs, a favourite chair, a blanket or a radio help the new room feel like home. Regular visits, phone calls and outings keep family bonds strong. The family can share the page about the person's habits and likes with the new staff, just as with care workers at home. Many families find that once daily care is in other hands, their visits become calmer and warmer, filled more with conversation and less with tasks.

Wherever care happens, at home, at a day centre, during a short stay or in a new place to live, the older person has the right to be safe and treated with dignity. Most care, by families and by professionals, is given with great kindness. Still, care textbooks teach everyone to know the signs that an older person may be suffering abuse or neglect. These signs include injuries or bruises that are not explained, sudden fear or silence near a particular person, being left unwashed, hungry, thirsty or without needed medicine or aids, unusual weight loss, money or belongings going missing, bills suddenly unpaid, and being kept away from friends, family or visitors.

Seeing one of these signs does not always mean that someone is doing harm, but it does mean that the situation deserves attention. Anyone who notices such signs, whether a family member, a neighbour, a friend or a care worker, should contact a helpline or the official contact point where they live, which can look into the situation and offer help. If the person seems to be in danger right now, call the emergency number. Speaking up is not an accusation; it is a way of making sure the older person is safe. And if you are a carer and fear that you yourself might hurt the person you care for, reaching out to a helpline, a doctor or the official contact point is a strong and caring step, as Chapter 12 explains.

A Question to Think About

If someone offered you a few hours of help each week starting tomorrow, what would you most like them to do, and what would you do with that time yourself? You might think about this alone first, and then share your answer with the person you care for or with your family as a starting point for asking for help.