If incontinence is not managed well, the person with incontinence may experience feelings of rejection, social isolation, dependency, loss of control and may also develop problems with their body image. Equally, if not managed well, incontinence may lead you, as their carer to, feel overwhelmed with the stress arising from changes in your life and in the relationship, the cost burden of continence care and aids, and the increasing time and cost spent on cleaning clothes and bedding.
Research tells us that many people with incontinence do not seek help. Depending on the individual’s personal beliefs and feelings about incontinence, the person you are caring for may not be bothered by it, may try to hide it, may deny it and may not want to talk about it. You may find these behaviours difficult to understand and accept, making it harder for you to help the person achieve the best outcomes for you both. As a carer, work out how much warning time there is, if any, and if the person you are caring for is aware of the problem. This will help you know when to attend to the person’s toileting needs before the problem arises.
As a carer, it is especially important to recognise your own changing emotions and feelings. These may be in response to the situation you are facing. Although the following is mainly written about the person you are caring for, some of it may also apply to you.
Sometimes when a person is challenged by a change in their life circumstance, a part of them may want to deny that there is a problem, even when there is overwhelming evidence that a problem exists. It may be embarrassment or it may be fear that’s behind the denial. Equally, denial might simply reflect that the person doesn’t fully or accurately understand what the problem is. Some may recall an aged parent having the same problem and believe incorrectly that nothing can be done to manage it effectively. Others believe that it is simply a result of ageing, having children or prostate surgery and therefore see no point in seeking help. When a person comes to believe that things are hopeless and that they are helpless to do anything about it, they are very prone to becoming depressed.
Even when people do seek help, they may not admit how serious the problem is. It is only as they become comfortable with their continence nurse advisor or doctor that they may be willing to reveal the full extent of the problem and be open to hearing about current continence management options.
Because passing urine or faeces is regarded as a very private and personal activity in most societies, many people are prone to feeling embarrassed about any accidental leaks and smell associated with incontinence. As a result, it is understandable that many people with incontinence and their carers might become very anxious when thinking about or planning social activities.
It is common for people experiencing anxiety to try to avoid the situation they most fear. They may try to reduce their anxiety by avoiding social activities such as shopping, going out or having friends over. It is also common for people experiencing incontinence to try to manage their problem by reducing the amount or type of food they eat or fluid they drink.
Frustration is a normal human reaction when a person feels they are unable to achieve something that they want, value, believe they have a right to, or believe that they should be able to do. A person who is incontinent may show their frustration when they are unable to master their incontinence or some aspect of their care or treatment.
A key to helping someone who is angry is to listen while you explore the needs that are unmet. Lack of sleep due to frequent toileting at night or from some other reason such as stress, pain or depression is likely to exhaust the person and you as their carer. Irritability, impatience and reduced tolerance can result and place severe strain on the health and relationships of both parties.
Carers and those with continence problems who are experiencing anger and frustration should seek advice from their doctor or continence nurse advisor on how to access support in managing these emotions.
Grief is a very normal response to any change in a person’s life. It represents their response to actual or perceived loss they experience as a result of that change. For that reason, grief is usually a transient state that lessens and passes with time as we adjust to a loss. Grief may feel like depression but tends to be different in the time it lasts, its intensity of feelings and the way that it affects a person’s beliefs.
However, grief is always an individual experience.
If you think that you or the person you care for could be depressed, it is important to raise your concern with the doctor, as depression and incontinence are common conditions. For more information on symptoms of depression, phone BeyondBlue (1300 22 4636) or go to beyondblue.org.au
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