Caregiving for a person with a chronic or progressive mental illness is a daunting responsibility. The caregiver plays multiple roles that include day-to-day care, supervising medications, taking the patient to the hospital, taking care of their diet, and looking after their financial needs. The caregiver also has to cope with the person's behavioral changes. All this is bound to cause a lot of stress and burden to the caregiver.
From the time the caregiver comes to know of their loved one's illness and through the entire period of caregiving, they go through a lot of emotional upheavals. This process is natural and is likely to occur with most, if not all caregivers.
Each person reacts differently to the situation. Some may take it very lightly and deal with the problem like any other, while others may take it very seriously and react with intense emotion.
Experts have identified a set of emotions that caregivers experience in general, and in a phased manner.
When the caregiver comes to know about the mental illness (schizophrenia, bipolar disorder, etc.) for the first time, they think that it is a passing phase and the person will be alright after some time. For a long time, they think it is a minor issue. This misconception is due to lack of awareness and knowledge on mental health. When the person does not show any signs of improvement, they start worrying. Yet they are still in denial mode and believe that it is due to some religious factor, black magic or some other faith related incident that has caused this problem. So, they resort to religious and faith rituals to ward off the illness.
It takes some time for the caregivers to come out of this phase and approach a doctor to learn about their loved one's illness and take them for treatment.
Caregivers start questioning themselves: 'Why did this happen to my family member/spouse/child?', 'Am I responsible for this condition?' Initially, they are angry with themselves, thinking that they are the cause of this problem. Later, they look for reasons and start blaming others to get over self-guilt. For instance, when their son or daughter is diagnosed with depression, anxiety, eating disorder, or any other mental illness, parents start blaming their child's friends for leading their child to develop bad habits; or they may say the problem was caused by ragging in college. Parents may also blame the college authorities for being strict and having high expectations for students to score well in exams, and so on. In case of people who are employed, family members may blame workplace policies, management, or authorities for causing workplace issues, which they believe have affected the person's health.
Most of the time, it is natural to feel this emotion. In a way, it is therapeutic because it helps you vent your frustration. Once you come out of this phase, you will be in a more able to take some action and help your loved one seek treatment.
Note:Anger that is unexpressed or suppressed can lead to anxiety, stress, or in some cases, depression. Anger that explodes can jeopardize relationships and even harm others. So, one can learn ways to deal with anger either by seeking help or by practicing techniques to control anger and rationalize situations.
Some caregivers may start bargaining with fate, saying that the condition is not so serious and nothing major has happened, even though the person is affected with serious mental illness. They also assume that doctors can completely cure the illness.
Caregivers may become defensive when they hear critical comments from others, or they read information that is contrary to their views. While nobody knows your loved one as much as you do, being defensive can make you close-minded. You may risk losing out on help and support. For example, a social worker or friend may have a perspective or a suggestion to handle the situation in a better way.
This emotion is still so forbidden that many caregivers are hesitant and afraid to admit it. This is mostly because of our society's attitude, where sacrifice, compromise and adjustment at the cost of one's well being are glorified, without bothering about the caregiver's life, their desires, emotions and intentions.
The caregiver (usually one person in the family who spends most of the time in caregiving), often feels let down because the other family members don't help taking care of person with mental illness. The family may take the caregiver's role for granted and assume that it is the sole responsibility of this one person to do everything, which can be quite strenuous for the caregiver.
In India, as most of the caregivers are women, they may have to leave their jobs if there is a need for full-time caregiving. They may also not get enough social support, as it is a norm in Indian culture for the woman to do all the house work. Most of the time, lack of sufficient finances to manage their life coupled with the family's disregard for their effort can be very painful and frustrating to the caregiver.
Overall, when the caregiver's work life, marriage, health or activities outside the home are compromised, it can lead to anger and resentment.
Note: Having a feeling of resentment towards the person with mental illness and the family members is normal, as long as it does not make a caregiver take any drastic steps, either for themselves or their loved one who is affected with mental illness.
We may assume that caregivers do not have grief because most of the time, they sport a formidable demeanor and smile. But this may not be the true picture. Many a time, we link grief with death, but people experience a similar emotion known as anticipatory grief when a loved one is suffering from a mental illness, especially when the illness is chronic and terminal. Anticipatory grief is a common emotion among caregivers and it can be experienced at any time, but it is more common at the middle and late stages of illnesses such as Alzheimer's, dementia, cancer, etc.
It helps if you are aware of your feelings of sadness and pain. Try to express it to your loved ones or someone who is supportive, and who has the ability to understand what you are going through. Showing a happy face belies the truth and it can be very frustrating after some time.
Take some time for yourself and do things that makes you feel relaxed. It may also help you put things in perspective.
As much as we try not to worry, we cannot escape from this feeling. Our love and concern for the person with mental illness makes us worry about their education, finances, marriage. Questions such as "What will happen after my death?" are some of the nagging thoughts that keep intruding into our minds.
Being concerned is good, but over-worrying or obsessing about the future problems will only affect your activities, disrupt your sleep, cause headaches and other body aches, and could lead to health issues.
If you notice that such worrying thoughts are affecting your health and daily activities (work, diet, sleep), then you need to take some action to get over this feeling. Seek help from a trusted counselor or any other therapist, who can help you express your negative thoughts and redirect you to think more constructively.
These feelings are experienced both by the family and the person with mental illness. The family is ashamed of their loved one's illness due to the prevalent stigma and misconceptions in society about mental illness. They hesitate to speak up or reveal this problem to their relatives and friends for the fear of being socially isolated.
The person with mental illness is also affected as much as the caregivers. They feel helpless because they are not able to express their feelings and emotions with the loved ones or friends, due to the same fear of stigma, discrimination, and social isolation. The father of a young man with mental illness said: “People have stopped coming to our home. We are not invited to any wedding or social gathering.”
Caregivers have a feeling of self-imposed guilt. They presume that they have not done enough, have not behaved or acted the right way, have not taken appropriate decisions at the right time, that they do not have the right knowledge on mental health, and so on. Caregivers burden themselves with a long list of “if only I could” “I should have” “I could have” thoughts. For example, "I should have taken my son for treatment earlier”. “I could have been more patient with the person”, “I should have spent more time taking care of my daughter, which could have avoided her eating disorder”, and so on.
The feeling of guilt is unavoidable and caregivers are bound to get these thoughts because of the despairing situation. Due to this constant ruminating thoughts, caregivers can suffer from depression at some point in time and might need treatment.
Note:It helps if you do not have too many idealistic thoughts and expectations. Accepting the fact with all its limitations can help you handle the situation in a better way. Try to go with the flow instead of punishing yourself for it.
Long periods of caregiving can be quite strenuous and can affect the physical and mental health of the caregiver. They feel stressed, anxious, which could lead to emotional exhaustion. In the long run, they may get into depression. Doctors then treat the caregiver so that they recover soon and are able to take care of the person with mental illness.
After some time, depending on the caregiver's ability to cope with the situation, they finally come to terms with the illness and decide to seek professional help. They then follow the prescribed treatment and support their family member. Along with treatment, they may perform some religious rituals or believe in some faith for solace. Doctors do not advise against their beliefs or practice as long as it does not harm the patient and does not interfere in their treatment.
If doctors observe that caregivers are causing physical harm to the patient (beating, burning camphor on the hand, tying up the person) through religious rituals, they strictly advise caregivers to stop such hostility.
Note: Caregivers spend a lot of money on such rituals and blind beliefs and by the time they consult a doctor, they may not have enough finances for treatment. This is the disadvantage of such religious customs and rituals.
It takes time for a caregiver to overcome all these range of emotions. The caregiver also needs support, love and care from other family members, friends and the community at large, to cope with the situation.
Caregivers' emotions when a woman is affected with mental illness
Caregivers are more worried when a woman is affected with mental illness. Society, especially in the rural communities, still think that a woman can lead a good life only if she gets married and is 'settled'. When a woman is affected with mental illness, the first thought that comes to family members is about how she will lead her life alone, or who will marry her. A mother of a young unmarried daughter said: “The family has to hide the illness because she is unmarried. If we tell anyone, we will face difficulty in finding a suitable match for her.”
In our society, the situation is different for a man because even after marriage, he stays with his parents who support him. But a woman after marriage moves to her husband's home, where she has to adjust to the new environment. So she loses her family's support, which she had received earlier. Her family gets concerned about whether her husband and in-laws would understand her problem and support her. There are a lot of issues for women, because society is still conservative and women are more stigmatized than men when it comes to mental illness. Due to this reason, the woman struggles to lead a functional life.
This article has been written with the help of inputs provided by Dr Jagadisha Thirthahalli, professor of psychiatry, NIMHANS