Caring for the CareGiver

Caring for your loved one with severe mental illness may take priority, but keeping yourself physically and mentally fit is important too


What is caregiver stress?

Caring for a loved one with a severe mental health disorder or psychotic illness can be challenging for the caregiver due to the various factors involved: having to accept that their loved one has been diagnosed with a mental illness and may not be able to function normally for a period; the intense emotions that arise while caring for their loved one, and the sheer practicality of having to balance caregiving with household chores or a job. To add to this, the stigma that surrounds mental illness in our society makes the task of the caregiver tougher in some situations.

The term ‘caregiver stress’ refers to the distress caused to a caregiver due to their loved one’s illness, or the strain posed by their caregiving duties

Caregiver burden

Experts use the term caregiver burden to refer to the distress and lifestyle adjudtments that a caregiver makes when they begin caring for their loved one. These adjustments could be practical: having more tasks to do as they assume the caregiver's role; Occupational (having to make significant changes at work, or quit their job if they are a full-time caregiver); financial (dealing with increased expenses and possibly, decreased income) and social (being unable to mingle freely with family and friends due to the stigma surrounding mental illness).

Conditions with distressing symptoms

Most people with severe mental health disorders such as psychosis or schizophrenia exhibit two types of symptoms: 

• Positive symptoms like hallucinations, delusions, disorganized speech, or odd behaviour.
• Negative symptoms are those qualities or tendencies that are seen in most people, but are absent in those who have a particular psychiatric disorder: the ability to take care of ourselves, the ability to interact with other people around us, and the ability to emote through facial expression or tone of voice, what we are feeling at a certain moment. Some people may have a limited ability to do these things due to the existence of their disorder. For instance, a person who has schizophrenia may not keep themselves clean (lack of hygiene and self care), may prefer not to interact with others (social withdrawal) and their facial expressions may appear uninterested or blank even when they are speaking about something that they are very interested in (flattening or emotions). 

Experts say that for caregivers, the negative symptoms can cause more distress than the positive symptoms.  This is generally due to two main reasons: first, that the medication is expected to manage the patient’s positive symptoms, and second – and most importantly -- , caregivers are concerned that the negative symptoms will single the person out as being ‘abnormal’ or mentally unsound.

Negative symptoms can come across as being more severe because they take something away from the 'normal' functioning of the individual; they are more easily observed by people around the person with mental illness, and mark them as being 'abnormal' in their behaviour.

Some people with mental health issues may be suspicious of their family and caregiver; this may be a source of stress for the caregiver, particularly when they do not want to be open about their loved one’s mental illness. The fears about being identified or found out could lead to lack of good relationship with friends, neighbors, family or community. The caregiver may have a sense of self-imposed isolation due to which they are unable to share their feelings or their challenges with the people around them.

Persons with some mental disorders – such as schizophrenia or psychotic disorder – may experience delusions or hallucinations. When a person has delusions or hallucinations, they may think that the caregiver is conspiring against them. They may get angry or laugh loudly in response to the delusions. This may lead to misunderstandings or mistrust between the patient and caregiver.

Persons with auditory hallucinations may be lost, withdraw into their own world, act out or speak to themselves. The caregiver may find this tough to understand or manage, especially in social situations. Sometimes, a person with delusions or hallucinations may lose their temper, abuse those around them, or get violent for no apparent reason.

Often, these behaviours can be observed as small variations of appropriate or socially-accepted behaviour. Unfortunately, the lack of awareness about mental health means that most caregivers wait until the behaviour becomes very pronounced or bizarre before they consult a mental health professional. Psychiatrists say that the earlier a person is brought to a mental healthcare center, the greater the chance of the person living an independent, functional life after treatment. Late diagnosis can lead to the development of certain behaviours that puts a strain on the caregiver, and could lead to caregiver frustration and burnout.

Stress caused by stigma

Very often, the stress caused by the person’s symptoms or behaviour becomes harder to manage due to the stigma surrounding mental illnesses. Take the example of Rajesh, who was diagnosed with paranoid schizophrenia.

Rajesh’s parents found it difficult to take care of him because he was always suspicious of them. The stigma made them hide the news from extended family and friends. Because they were afraid of the neighbours finding out about the illness, they began avoiding their neighbors and relatives, particularly when Rajesh had psychotic episodes. They were afraid of having to answer questions about Rajesh’s health or his changed behaviour. The fear of getting found out caused Rajesh’s parents a lot of stress. They also had to deal with the changes brought by Rajesh’s illness without any social support.

This narrative has been created with the help of mental health experts by taking into consideration symptoms and accounts from a cross-section of patients.

Other factors that make caregiving stressful

Sometimes, the caregiver of a person with a mental health issue has to make drastic changes in their own lives; they may need to quit their job and make some changes to their lifestyle. “Earlier, caregivers had more support due to joint family structure. Now, families are smaller, and everyone is working, so less support is available,” says Dr Santosh K Chaturvedi, professor of psychiatry, NIMHANS.

The stress can lead to the caregiver developing lifestyle disorders like diabetes, hypertension or other related health problems like diabetes.

Expressing distress through emotions

Expressed emotion plays a huge role in the recovery of a person with a mental illness. Very often, the caregivers; distress manifests in the form of expressed emotion. The caregiver may – consciously or unconsciously – express negative emotions, criticism or hostility while relating with their loved one. The attitude of the caregiver influences the course and the outcome of the illness. Very emotionally-charged situations can also lead to compounding the caregiver’s stress.

Expressed emotion plays a critical role in a person’s recovery. Experts say that in disorders such as schizophrenia, there is a direct correlation between the caregiver’s negative emotions, and the number of relapses. When a person with schizophrenia lives in a hostile atmosphere, their illness is more chronic, and they need more medication to manage it.

Seeking help for caregiver stress

If you are providing long-term care to a loved one with a mental illness, chances are that you will experience at least one of the stages of caregiver burnout at some point. Caregiver stress is a genuine mental health issue, and burnout is considered a long-term adjustment disorder.

Here are some signs of caregiver stress:

• You don’t remember the last time you were able to go out to watch a movie, or meet friends for dinner, or just indulged in a fun activity
• Your ability to concentrate on tasks has decreased
• You feel irritable and on edge most of the time
• You feel exhausted – even after a nap or a long night’s sleep
• You fall sick more often than you used to
• You are losing interest in activities you enjoyed earlier – reading, watching movies or having a meal with friends
• You find yourself unable to sleep well
• You may be smoking or drinking in greater quantities
• You snap at the person you’re caring for, even for inconsequential reasons
• You feel like there’s no point caring for the person anymore
• In some cases where the stress is intense, the person may have thougts of getting rid of their loved one, followed by extreme guilt due to those thoughts

Learning to identify the signs of caregiver stress can help you avoid getting into the burnout stage. If you think you are suffering from caregiver stress, reach out to a psychiatrist or counselor and seek help for yourself.  Your doctor or counselor may give you some suggestions or other activities that will help you cope better.

Stages of caregiver stress

Most caregivers go through these stages of caregiver stress:

The early stage or the honeymoon phase: where the caregiver is confident, sees caring for their loved one as a part of their duty. They take their duties positively, with the belief,  “Let me look after my loved one. This will pass.”

The monotony phase: Where the caregiver feels there are ups and downs in their caregiving journey.

The brownout phase: where the caregiver feels exhausted, fatigued and disoriented. They begin to see caregiving as a chore or a burden.

The burnout phase: During this phase, the caregiver distances themselves from the person they are caring for because it can be emotionally exhausting. They continue to care for the person, but the caregiving is mostly mechanical. The caregiver may be depressed, cynical or emotionless during this phase.

Preventing caregiver burnout

If you’re a caregiver and are feeling the signs of stress, reach out for help at the right time to avoid a burnout. You could opt for one among several interventions to ensure that your ward is well cared for, while you recoup and gear up to care for them again:

1. Dayboarder service or day care service, where the person is kept occupied from morning to the evening, by exploring their skills and learning new tasks. This allows the caregiver to follow their own routine, go to work, finish household chores and rest.
2. Respite care service, which can be used if there is something specific that requires your attention and your presence for a few weeks at a time. Respite care services offer boarding and specialized care to your loved ones. Many caregivers opt for respite care services when they need to travel, when they fall ill and are unable to care for others, or when they have other tasks that require their time. It is recommended that you use respite care services sparingly, only when absolutely necessary.
3. Sharing caregiving by seeking help from family and friends. This can give you a break from your caregiving tasks and help you focus on your own care. 
4. Enhancing your own coping skills by reaching out to a mental health expert. Developing a new hobby, going on holiday, adopting a pet or taking time out for yourself every day or every week can help you take care of your own needs too.

Caring for someone with a mental illness may demand a lot of your time and energy; at the same time, you will be able to care for your loved one only if you are well cared for. Remember to reach out for help when you notice any of the warning signs of caregiver stress to make sure that your caregiving tasks don’t get too overwhelming for you.

Credit:White Swan Foundation, a knowledge repository on mental health. To know more please visit White Swan Foundation