Chapter 9: The Toilet, With Dignity

A Common Situation

A man in his seventies has been caring for his wife since her walking became slow. One morning he finds that the bed is wet. His wife is upset and ashamed, and she tells him not to look at her. He changes the sheets quietly, but neither of them says much about it. Over the next weeks it happens again a few times, and his wife begins to drink less tea during the day and to refuse invitations to visit their friends. He wants to help her, but they have been married for many years and have never talked about such things. He does not know whether to mention it to anyone, or how.

Using the toilet is one of the most private parts of life, and needing help with it is something many people find very hard to accept. Families often feel just as uncomfortable, and so the subject is left unspoken, even when a little help could make life much easier. In this chapter I will talk about the toilet calmly and plainly, as care textbooks do. We will look at how to talk about it with respect, how to make the toilet easy to reach, how to respond kindly when accidents happen, how to care for the skin, why drinking enough still matters, and which changes are worth telling a doctor or nurse about. At every step, the person's privacy and dignity come first.

Talking About It Calmly

Changes in the bladder and bowels are common in later life. The bladder may hold a little less than before and may give less warning when it needs emptying, so the person may need to go more often and more quickly. Some people need to get up at night to pass urine. The bowels may move more slowly, especially when a person moves about less or drinks too little. Many of these changes are part of the usual aging that Chapter 2 describes. Some changes, however, have causes that a doctor or nurse can look into and often help with, so they are never something a person simply has to put up with in silence.

The word care professionals use for the ability to control the bladder and bowels is continence. Losing some of this control, so that urine or stool leaks out before the person reaches the toilet, is called incontinence. It can be a small leak when coughing or laughing, a sudden urgent need that comes too fast, or difficulty reaching the toilet in time because of slow walking or memory changes. Knowing these plain words can make the subject easier to talk about with professionals. At home, though, the person may prefer softer words, and it is kind to use whatever words the person is comfortable with.

When you need to raise the subject, choose a quiet, private moment, not in front of others, and not just after an accident when feelings are raw. Speak in an ordinary, matter-of-fact way, as you would about any other part of health. You might say that many people have this kind of difficulty, that it is nothing to be ashamed of, and that a doctor or nurse can often help. Let the person speak, and listen to the worries behind the words: fear of smelling, fear of being a burden, fear of losing independence. A calm, warm tone tells the person more than any particular sentence can.

Privacy matters at every step. Knock and wait before entering the toilet or bathroom. If the person needs help to sit or stand, help with that step and then step outside or turn away, if it is safe to do so, until the person calls you. Keep the person covered as much as possible, and never discuss accidents in front of visitors or children. Some people would rather be helped by a professional than by their own son or daughter, and this wish deserves respect when it is possible. A person who still feels in charge of his or her own body will usually accept help more easily.

Many carers worry about whether to tell anyone, and the answer from care textbooks is clear: telling the person's doctor or nurse is a caring act, not a betrayal. Many problems with the bladder and bowels have causes that can be looked into, and some can be helped a great deal. In many places there are nurses who specialise in continence, and the person's doctor can explain what help is available where you live. If possible, ask the person's permission before you speak to the doctor, or go to the appointment together, so that the person stays at the centre of every decision.

Memory changes can affect toilet habits in their own ways, and knowing this helps families respond without hurt feelings. A person with memory problems may forget where the toilet is, especially in a new or rearranged home, may not recognise the feeling of needing to go, or may forget the steps of undressing, sitting and washing the hands. Sometimes a person passes urine in a place that is not the toilet, such as a corner or a bin, because it looks to the person like the right place. This is not done on purpose, and scolding only causes distress. Calm guidance, clear signs, a light left on in the toilet, and gentle reminders at regular times usually help more. If these changes appear suddenly, it is worth telling the doctor, because a new problem may be behind them.

Making the Toilet Easy to Reach

Many toilet accidents happen not because the bladder or bowels have failed, but because reaching the toilet in time has become hard. A person who walks slowly, needs a walking aid, or has trouble with buttons may simply not get there quickly enough. Making the route to the toilet short, clear and safe is therefore one of the most useful things a family can do. Chapter 5 explains how to make the home safe from falls in general. For the toilet, the main points are a clear path without rugs or clutter, good light by day and night, and a toilet that is easy to sit on and stand up from.

Light is especially important at night, when many falls on the way to the toilet happen. A night light in the bedroom, the hallway and the toilet, or lights that switch on when someone moves, help the person find the way without searching for a switch. Leaving the toilet door open, or putting a simple picture or sign on the door, helps a person with memory changes find it. A toilet seat in a colour that stands out from the floor and the wall can be easier to see. Grab bars beside the toilet and a raised toilet seat, if the professional advises them, make sitting down and getting up easier and safer.

When the toilet is far from the bedroom, or the person cannot walk there safely at night, other arrangements can help. A commode, which is a chair with a toilet pan under the seat, can be placed near the bed, and a urine bottle may suit some people. These are common kinds of equipment, and a nurse or occupational therapist can advise which would suit the person and how to use it with dignity. A screen or curtain gives privacy if the commode stands in a shared room. Keeping toilet paper, wipes and a way to wash the hands within reach lets the person manage alone for as long as possible.

Regular times can help a great deal. Many people find that going to the toilet at set moments, such as after waking, after each meal, before going out and before bed, means fewer surprises and less worry. For a person with memory changes, a gentle reminder or an invitation at those times may be needed. Look for signs that the person needs the toilet but cannot say so: restlessness, pacing, pulling at clothes or suddenly standing up. A common moment is when a person refuses the toilet when asked directly but agrees when you say, "Shall we wash our hands before lunch?" on the way past the toilet door.

Clothes also play their part. Trousers and skirts with elastic waists, wide openings, or simple fastenings are much easier to manage than tight belts, small buttons and complicated zips. Clothes that can be pulled down quickly can make the difference between reaching the toilet in time and an accident. Chapter 8 describes clothes that are easy to put on, and the same ideas help here. Give the person time once seated, and never hurry anyone in the toilet. Bowels in particular work best when a person sits comfortably, feet supported on the floor or on a small step, and does not feel rushed or watched.

Sitting down on the toilet and standing up again are moments when a person can lose balance. The textbook principles for helping someone stand and sit, which Chapter 6 explains, apply here too: explain each step, let the person use the grab bars and do as much as possible, and never pull on the person's arms. A door lock that can be opened from outside, as Chapter 5 suggests, lets help reach the person quickly if needed, while the person can still close the door for privacy. A small bell or a simple way of calling, agreed in advance, lets the person ask for help without shouting. These small arrangements allow privacy and safety to exist side by side.

When Accidents Happen

Even with the best arrangements, accidents may happen, and how you respond matters more than anything else. Stay calm, speak kindly, and treat it as an ordinary event that can be dealt with. Avoid words of blame, sighs, jokes or comments on the smell, because the person is likely to feel ashamed already. You might simply say, "Let's get you comfortable," and move quietly to help. Afterwards, there is no need to talk about it again unless the person wants to. A calm reaction tells the person that he or she is still respected, and that nothing about the relationship has changed.

Being prepared makes accidents easier for both of you. Keep a change of clothes, clean towels, wipes or a washcloth, and a bag for soiled items in a place that is easy to reach. A waterproof cover under the sheet protects the mattress, and some families keep a spare set of bedding ready. For outings, a small bag with a change of underwear and wipes can give the person the confidence to go out. Gloves can be used by the carer for cleaning, and washing your own hands well afterwards protects you both. Wash soiled clothes and bedding separately, following the usual washing instructions on the label.

There are absorbent products designed for people with incontinence, such as pads that sit inside ordinary underwear, pull-up pants and products for use at night. They come in many kinds and sizes, and the right choice depends on the person's needs. Before relying on them, it is best to talk to the doctor or a continence nurse, because the cause of the problem may be one that can be helped. A nurse can also advise on which kind would fit and how to use it comfortably. Whatever is used, it should be changed regularly and promptly when wet or soiled, and the person should be helped to stay as involved in the choice as possible.

Skin care is an important part of continence care. Urine and stool can irritate the skin, and skin that stays wet becomes sore and breaks down more easily. After an accident, wash the skin gently with warm water and a mild soap or a soap substitute, rinse it, and pat it dry carefully, including in the skin folds. Washing from the front to the back is the textbook rule for the private areas, especially for women, because it helps prevent infection. A protective cream may help if the nurse suggests one. Check the skin for redness or soreness, and tell the nurse about skin that stays red, becomes broken or seems painful. Chapter 8 explains more about protecting fragile skin and preventing pressure sores.

Accidents can affect the person's feelings and social life as much as the body. Some people stop going out, stop seeing friends or stop drinking enough because they fear an accident in public. Others feel low or lose confidence. Gentle encouragement, practical preparation such as knowing where toilets are on a regular route, and the reassurance that many people live with these difficulties can help the person keep an active life. If the person seems withdrawn or sad for a long time, that is worth telling the doctor about too. The aim is not only to keep the person dry but also to keep the person connected to the life he or she enjoys.

Drinks, Regular Habits and Changes Worth Mentioning

When accidents happen, many people try to drink less, and families sometimes encourage this without thinking. Care textbooks are clear that this usually makes things worse rather than better. When a person drinks too little, the urine becomes stronger, which can irritate the bladder and make the urge to go more sudden. Too little fluid also makes constipation more likely, and a full bowel can press on the bladder. In addition, as Chapter 7 explains, not drinking enough can cause tiredness, dizziness and confusion. It is better to drink regularly through the day, perhaps with a little less in the last hour or two before bed, if the doctor or nurse agrees that this suits the person.

Some drinks can make the bladder more active in some people. Drinks containing caffeine, such as coffee, strong tea and some soft drinks, and also alcohol, are often mentioned in care textbooks in this way. This does not mean the person must give them up, especially if a morning coffee is one of the pleasures of the day. If you think certain drinks may be making things harder, the doctor or nurse can advise whether any change would help. Changes in what a person drinks are best made together with the person, explained gently and never forced.

Regular bowel habits help comfort and well-being. Food that contains fibre, such as vegetables, fruit, beans and wholegrain bread or rice, together with enough drinks and some daily movement, helps the bowels work well. Many people find that the bowels are most likely to move at a regular time, often after breakfast, so giving the person a calm, unhurried moment in the toilet then can help. Constipation, which means passing stool less often than usual, with hard stools or straining, is common in later life and can cause discomfort, poor appetite and restlessness. If it lasts for several days or keeps coming back, talk to the doctor or nurse.

Certain changes in toilet habits are worth telling a doctor or nurse about promptly. These include pain or burning when passing urine, needing to go much more often than usual, urine that is cloudy, very dark or strong-smelling, any blood in the urine or stool, black or very dark stools, sudden new accidents in a person who was managing well, difficulty passing urine at all, loose stools that go on for more than a short time, or a change in bowel habits that does not settle. A sudden change in the person's behaviour or alertness, together with any of these signs, is especially worth mentioning, because in older people some infections can show themselves first through new confusion rather than through pain. If you notice sudden serious signs, such as great pain, high fever with confusion, or being unable to pass urine at all, contact the doctor urgently or call the emergency number.

It helps to write down what you notice: when accidents happen, how often the person uses the toilet, what the person drinks, and anything that seems to make things better or worse. A simple record over a few days gives the doctor or nurse a clear picture and often leads to useful advice. Chapter 11 explains how a care notebook can bring such notes together. Keep these notes private and treat them with the same respect you would want for your own. When the person can take part in keeping them, so much the better.

I want to end this part with a reminder that is easy to forget. Help with the toilet is one of the most intimate kinds of care, and it asks a great deal from both people. If you find it hard, that does not mean you are doing it wrong. Many carers say that, with time, a calm routine develops and the awkwardness fades, and that the trust built through this care brings them closer. If this part of care becomes too much for you, it is a good reason to ask for outside help, which Chapter 14 describes. Doing so is a way of caring for the person, not a failure.

A Question to Think About

What would help the person you care for feel more relaxed, private and in control when using the toilet, at home or when going out? You might think about it quietly first, and then, at a calm moment, ask the person what would make things easier, listening with patience to whatever the person is ready to share.