Carers' self-care
What might a caregiver feel?
It is normal to be distressed and upset when a family member is diagnosed with a mental illness.
Some common emotions include feeling as though they have lost the person they used to know (i.e. the person you love has became someone else), or feeling that all hopes are lost for the patient’s future (i.e. the child cannot handle a full-time job anymore). This is particularly so when patients are young. Other than that, a change of roles may happen within the family (i.e. parents having to take up as much responsibility as they did when their child was younger), and loss of confidence (i.e. blaming themselves for not being able to protect their child), etc.
Some family members may feel guilty and feels partially responsible for the illness of the patient. This may put further stress on the caregivers. Family members may also be extremely sad about it. In order to recover from grief, it is important to acknowledge and accept the emotions felt at different stages. The experience of grief varies from person to person, even within the same family, and each family member may feel different degrees and stages of sadness. Nonetheless, there are some common stages we may go through:
Shock/ In Denial
This response is a psychological defense mechanism to protect us from sadness. Usually family members may trivialize the symptoms and attribute that to other causes such as lack of sleep etc. Some example of response including family members may say that “this can’t be”, or that “the doctor doesn’t know what he was talking about” etc.
Anger
Family members may be angry when they are feeling helpless and weak. The anger can be directed at those whom we consider to be responsible for the onset of the disorder, ourselves, relatives, or even at the people who are trying to help the patient (i.e. professionals, social workers, teachers etc.).
Negotiation
Family members may keep thinking about what could have been done, or what might have been done better to avoid this situation. If these feelings are not dealt with properly, the guilt may stop us from recovering from grief.
Depression
When family members realised the severity of the illness, they may become depressed. Depression can be reflected in the following behaviour, thoughts or feelings: appetite or sleep patterns may be affected, fatigue may be experienced, the person may feel detached, lonely, isolated, numb or self-pitying, tearful etc. Sometime professional help may be needed.
Acceptance
In this stage, family members will learn that life goes on even though the patient is ill. We start to accept the fact that we have lost something, and are capable of handling different emotions. When family members are able to perceive the loss as part of their life experience, they may start to recover from the grief.
Experiencing the above stages is very common, but not all family members will experience them, and the duration of each stage may vary. If you are experiencing them, try not to avoid these feelings, but instead accept them, as they will gradually help you to recover.
What expectations should I have?
Expectations can often be the source of stress. Sometimes we may not be aware of how unreasonable our expectations for the patients are; for example, we think that their learning and working abilities should be as good as before, we may compare their extent and speed of recovery with other patients, and have unrealistic expectations for the patient’s future and lifestyle, or want the patient to appear well in front of relatives etc. Sometimes we express these expectations with good intentions, such as hoping that it would serve as motivation for the patient to improve or to recover as soon as possible; however, we have to understand that it can be very stressful for the patient, and may even lead to relapse.
Moreover, family members often misunderstand the patient due to their lack of understanding for the negative symptoms, and therefore respond to their behaviour based on assumptions; they may accuse the patient of being lazy, or impair the patient’s confidence etc. As family members, we have to thoroughly understand the negative symptoms of psychosis (i.e. rarely speaking, lack of motivation, losing interest in things, reluctance etc.), different stages of recovery and understand that the patient’s behaviour may have been influenced by their negative symptoms or other aspects of the illness (i.e. they appear to be lacking motivation). Instead of blaming the patient, we need to express our expectations sensibly and encouragingly in order to help the patient recover. The most powerful is the unconditional support and care from family members, so that the patient doesn’t feel alone in leading a new life. If necessary, family members can accompany the patient to social activities and help them develop new interests for their leisure time.
It is perfectly understandable for family members to have certain expectations, for most of the people would have expectations for themselves too. However, when a family member is ill, we have to understand that they are fighting bravely against the effects brought on by the disorder and the medications; if they have to adjust themselves in order to deal with the difficulties, we should adjust our expectations accordingly too. Maybe we can figure out the appropriate expectations for the patient by redefining “success” with consideration of the patient’s ability and condition. We should also avoid comparing the patient with other people as means to prod them into improving - we should allow the patient to make progress at their own pace. Family members and the patient may discuss and establish goals together, which can also be broken down into smaller, more achievable targets; we can also suggest creating a timetable to help with achieving them. When we adjust our expectations relating to the patient, and give them unconditional and consistent support, not only can we reduce pressure on the patient and help with their recovery, we can also help ourselves lead a happier life.
Am I stressed?
Stress evidently has an effect on our mood, behaviour and thoughts. We will encounter different challenges while taking care of our ill family member; when we think that we lack the required resources or capacities to face these challenges, it could lead to stress and some negative emotions. It can lead to certain undesirable behaviours, such as detachment, criticism or overprotectiveness of the patient.
The stress of a caregiver can concern numerous aspects, such as financial pressure, and the stress of taking care of the family and the patient. If the patient happens to be the breadwinner before the onset of disorder, it is very common for them to be forced to leave their position due to psychosis, which may consequently bring on financial pressure to the family. Therefore, some families may let other members go to work or take on a few more part-time jobs in order to support the family. If the patient happens to be the one who looks after the family prior to the onset of psychosis, the disorder may affect their moods, and prevent them from taking care of other family members or complete housework, which may results in the disruption of the familial structure and cause other members of the family to feel the stress. Due to the symptoms of psychosis, the patient may struggle with tasks that they used to be able to do; their self-care ability may also be affected. Some of the patients may have more severe negative symptoms, which cause them to lose interest in things, be unconcerned about surroundings, or even disregard personal hygiene and cleanliness, making it more stressful for the caregivers. Other than that, stress can stem from concerns regarding the patient’s recovery and potential uncertainty of future. We need to relax ourselves and be composed while communicating with the patient in order to understand the needs of the patient. The concern of future uncertainty can usually be helped by focusing more on the here and now issue.
When we are stressed, there will be both mental and physical signs, such as:
Physical Symptoms
Headache, trembling, back/neck pain, tensed muscles, dizziness, cold hands and feet, sweating, dry mouth, stomach ache, diarrhea or constipation, insomnia, chest pain, increased heart rate, tiredness, increased or decreased appetite etc.
Psychological Symptoms
Anxiety, worrying, guilt, irritability, becoming easily angered or frustrated, hostility, depression, feeling like they are going to collapse from the burden, crying frequently, feelings of loneliness or worthlessness, restlessness and hopeless etc.
Cognitive Symptoms
Difficulty concentrating, nightmares, difficulty learning new things, forgetfulness, indecisiveness, unwillingness to interact with other people etc.
If our bodies have been showing warning signs, we have to take good care of ourselves so that we can be prepared ourselves both physically and mentally for more challenges.
If you would like to learn more about relaxing yourself, please click here.
If you would like to seek help, please click here.
How can I relax myself?
Generally speaking, to be physically and mentally healthy requires you to have a regular lifestyle - enough sleep, well-balanced meals, a suitable amount of sports, having hobbies and a social life, and a positive attitude etc. There are a lot of ways to deal with stress, for example: exercising, listening/playing music, appreciating art, religion etc. The most important thing is to find an activity that is suitable for you, that way the activity will really make you relaxed and less stressed.
Caretakers and family members face a lot of stressful situations. In order to lessen the stress, family members and caretakers alike can consider the following suggestions:
Direction | Action |
Stay healthy and rest well, so we have energy to keep on going | Exercise regularly, explore nature, breath deeply to make yourself more relaxed. Be inclusive and let other family members take responsibility for taking care of the patient and doing household chores. Remember that the patient’s wellbeing should not solely rely on one person in the family. The care and empathy of each and every family member is very helpful towards the recovery of the patient. |
Maintain a healthy mindset, positive thinking can help us change how we deal with the situation | Sometimes positive and negative thoughts are only a matter of choice. However, these choices have the chance of bringing better feelings, actions and conditions into the situation. Therefore it is important that we hold a positive attitude towards any situation – accept our emotions and try to let go, appreciate and encourage ourselves to go for reasonable expectations. At the same time, we should always think about our own needs and be aware of our own mental health, avoiding long-term stress and anxiety. Give yourselves some space to do things that you enjoy, eg. meditation, reading or religion. When the patient is not emotionally stable, try to keep calm and control your emotions. |
Maintain a healthy social life, and make connections with resources and people of the same situations | Share your experiences and worries with friends, listen to others opinions and find chances to spend time with your friends. Be active in joining events related to psychosis to gain more knowledge and eliminate prejudices about the illness. Join community groups with people of similar experiences so that you can connect and share your burdens to feel less lonely in your experience. Moreover, frequent communication with patients and caretakers can help sharpen your communication skills. In times of need, do not be afraid to look for resources (eg. Dormitories, rehabilitation centres etc) or professionals (eg. social workers, nurses etc) for help. |
Family members can try to find the best way to eliminate stress for them and make it a regular routine. Regular activities help to increase your mental strength to face this situation with other family members. Finally, it is very important to understand that in order to take good care of the patient, we have to first take good care of ourselves.
How should I express praise and care?
Express praise
Appropriately expressing praise not only helps the patients acquire good habits, but also boosts their confidence and strengthens family relationship. When we intend to praise them, the following techniques can be considered:
- Closely observe; Provide instant feedback
As we have been living with our family members for long, we may not notice their strengths or room for improvement. When we closely observe, we can realize their strengths, and then we should instantly express our praise.
- Make concrete compliments; Explain the reason
We need to clearly explain what they have done worth-praising, and why. We should make our compliments concrete.
- Express feeling
We can express our present feelings.
We can also consider using more precise vocabulary, such as praising their good qualities such as being caring, credible, knowing how to respect others, attentive, responsible, organized, diligent, and persevering, etc. For instance: “It’s such a good self-discipline that you wake up yourself! I’m glad to see you work hard.”
Express care
Concisely describing the patients’ condition can be one of the ways to show care. For instance we can simply say something like, “after a day of work, you look a bit tired”. But we need to be careful to strike a balance between expressing care and providing enough space to let patients choose to do or not to do. Otherwise, care can be easily turned into control. For instance, when the weather is cold, we do not need to ask them to wear more clothes for thousand times; instead, we can simply put his coat onto the chair, and provide them space to choose. This can already express our care.
Look for topics
Sometimes, we feel difficult to communicate with the patients, or do not know what to talk with them. When we have no idea what to talk, we can try the following ways:
- Describe precisely and concisely
It is not a must to prompt the patients to talk by asking questions. We can describe their condition briefly, such as “you look tired”, to start conservation. If we really hope to start conservation by asking questions, open-ended questions are more appropriate.
- Disclose your own thoughts
To start conservation, we can also disclose our thoughts and feelings first. If a common topic can be found (e.g. television series, news, latest information), it is easier to start the conservation than talking about your own matters (e.g. your work).
How should I express discontent?
Patients tend to show irregular or abnormal behaviours when they are affected by their symptoms like hallucinations or delusions. Moreover, patients often find it hard to control their emotions, leading to conflicts between family members and caretakers, some extreme cases might even involve violence. These situations may affect relationships in the family such as feeling very frustrated towards the patient, or even criticizing and alienating the patient. Family members may tend to chastise the patient, thinking that patient isn’t fulfilling their expectations thus wanting to force the patient change; or maybe family members might use a negative attitude to judge the patient, thinking that the patient is the root of the problem. Research has found out that the chance of relapse of a patient is positively correlated with the number of conflicts in the family, meaning that the more conflicts in the family, the larger the chance of the patient relapsing. On the other hand, if family members can strive to be compassionate and understanding towards the patient, it will be helpful towards the recovery of the patient.
As family or caretakers, we should understand that metal conditions and medications do have certain effects on the patient; therefore we need to be reasonably accepting and compassionate to the patient. But, if there are situations in which something unreasonable happens, we should also give suitable criticism. Suitable criticism helps us empathize right the situation more and it also reminds others to be more disciplined. Criticism should be simple, clear and serious, at the same time we should remember to respect our family members, and try to comment on the situation but not the person. While we are considering giving criticisms, we can consider the following techniques:
State the behaviour that was inappropriate | Stating the specific action and behaviour is crucial to the understanding of what is right or wrong | |
1. | Explain why the certain behaviour is inappropriate | letting patients or family members know the reason behind helps them understand why the behaviour is inappropriate |
2. | Express feeling and emotions | This is relatively difficult for a lot of people, but it is crucial to express one’s feelings to let the patient empathize and understand with your standpoint |
3. | Show trust and support | This can support and encourage the patient to improve |
4. | Suggest reasonable expectations | This can help the patient know what is expected of him/her and have clear direction on what to improve on |
For example: ‘You came back really late at night, and you might have the chance to encounter danger. I hope you understand that this will make me very worried. I believe that you will know how to to make me trust you more. If you know you are going to be late next time, would you mind giving me a call beforehand?’
Sometimes, when we are really angry and frustrated, it will be very hard for us to control our emotions. We can consider expressing our emotions then leaving the scenario for a while to let the steam off before dealing with the situation with a mature and calm way. For example: ‘I am really angry and disappointed right now. I need a little time and space. Hopefully when I come back I will able to deal with this in a calm and mature attitude.’