Hvovi Bhagwagar, a clinical psychologist who works a lot of persons with Bipolar Disorder and their families, puts the spotlight on challenges faced by the family caregivers and what they can do to help the persons with Bipolar Disorder as well as themselves.
Arman is a 32-year-old social activist. He is well-respected for his many welfare activities. Diagnosed with Bipolar II disorder in his teens, his life has been a constant internal struggle. His parents, one of whom was diagnosed with depression, could not adjust to his condition. He left their home in his 20s and married his college-mate. His wife is caring and helps him calm down when he has temper outbursts and also supports his constant swinging between jobs. However, she has a difficult juggle between caring for Arman, a demanding career and their 2-year-old child.
Paromita had been meeting me for 2 years. A bright engineering student, she had been diagnosed with Bipolar I disorder during her teens. She is on mood stabilizers and functions better than earlier. However, there would be intense periods of depression when she could not leave the bed. On other days she would have bursts of energy staying up until late night to finish projects. Her parents received intimations from her college regarding her inconsistent attendance. They found that managing Paromita was slowly burning the family out. She would at times wander outside the home with no contact. Other days she would stare listlessly at the ceiling refusing food. Worst were the days she would pick fights, raging at the family and at times breaking household furniture.
People with Bipolar Disorder (BD), at a conservative estimate, constitute 4 million of the Indian population and BD is the sixth leading cause of disability worldwide. This disorder is characterised by repeated episodes in which the patient’s mood and activity levels are significantly disturbed. This disturbance has occasions of an elevation of mood and increased energy and activity (mania or hypomania), and on other occasions of a lowering of mood and decreased energy and activity (depression). The illness usually starts early in life, i.e., during teens or early adulthood, and people suffering from BD have symptoms of illness for the major part of their lives.
Most people diagnosed with Bipolar disorder (BD) are reliant on one or more caregivers, and for each caregiver, there is a specific challenge.
If you have someone you know diagnosed with BD, here is what you can do.
1. Watch for signs: Be alert to changes in the person’s usual behavior and thinking.
Some red flags of a Manic/hypomanic episode include:
- Sleeps less
- Is more active or pursues more goals (has lots of energy)
- Is irritable and impatient
- Talks much more than usual or speaks very fast
- Has increased self-confidence, self-importance or optimism
- Has lots more ideas and plans
- Starts doing more risky activities
Some red flags of a depressive episode include:
- Is less interested in doing things that they usually enjoy
- Is tearful or sad
- Neglects certain tasks
- Is more forgetful
- Withdraws from social interaction
- Daily routine suffers
However, we all go through everyday mood fluctuations and pointing them out to the person must be done gently and sensitively or it can lead to frustration. Remember: Bipolar moods a) last longer and are harder to change, b) are more intense and cause more disruption to the person’s daily life and c) are unrelated to good or bad events.
2. Support during episodes: In addition, caregivers play a crucial role during episodes of depression and Mania. During depression, encourage the person to set small manageable goals to do things and didn't take over, acknowledge the person’s small achievements, offer love even if they can’t reciprocate, help them participate in physical activity. During episodes of Mania create a calm environment, set limits on spending money, move away from arguments, don’t participate in grandiose plans.
3. Managing a bipolar crisis: Caregivers will usually be the first line of support during a crisis. If the person seems be severely ill, can’t do the daily tasks or is in danger of doing something damaging, then hospitalization may be needed. Plan for this in advance by keeping in touch with the person's psychiatrist regularly, having emergency contact people at hand and keeping ready the number of a nearby hospital. An advance directive can be highly beneficial during a crisis/emergency (unless the person is severely incapacitated).
Another form of crisis is the possibility of suicide, as people with BD are classified as a suicide high-risk group. Watch for signs of suicide, make the environment safe (eg: stow away pills and sharp objects), keep a watch on the person. Most importantly, if you suspect the person is contemplating suicide ask them as directly as you can.
While the family members/primary caregivers are dedicated to helping them recover, they feel uninformed, isolated, overwhelmed, sad, and at times, angry and hopeless.
The role of caregivers - undermined, and yet essential
The primary caregiver is identified as an adult relative (a spouse, parent or spouse equivalent) living with a patient, who is involved in the care of the patient on a day-to-day basis, takes the responsibility for bringing the patient to the treatment facility, stays with the patient during the inpatient stay, provides financial support and/or is contacted by the treatment staff in case of emergency, provides intensive involvement in the care of the patient is often associated with significant caregiver burden. (Rammohan, Rao and Subbakrishna, 20023). Varying evidence, both research-based and anecdotal suggest that it is possible to mitigate the negative impact of life’s stress-causing events, including the symptoms brought about by the illness through caregiver support. The lack of help from third parties is a risk factor for symptom recurrence and results in poor prognoses for mental illness. However, the challenges of caregiving are rarely the focus of research.
One of the few studies in India on the role of caregiver burden was recently done by a group of researchers in Kashmir. Their view is that to reduce caregiver burden, the emphasis in psychiatric rehabilitation needs to shift from a patient-focused approach to a combined patient and caregiver-focused approach (Gania, Kaur et al 20192).
Between a rock and a hard place:
Caregivers of patients with Bipolar disorder are a marginalized group. Social support in Bipolar Disorder has been the subject of only 13 research studies so far (Studart et al 20154). Healthcare policies, health workers and the ecosystem at large are unaware of the experiences of family members supporting a relative with BD. An interesting account of these experiences was researched by Baruch and colleagues in 20181. They conducted interviews with 18 family members (partners, parents, adult children, and siblings) and identified 6 themes to their stories- ‘not knowing: like being in a minefield’, ‘It’s out of my control: sitting waiting for the next thing to happen’, ‘treading on eggshells’, ‘Picking up on signs’, ‘Times of crisis: between a rock and a hard place’, and ‘I have to make my voice heard’.
In addition to its impact on quality of life, caregiving strain has been associated with compromised health and mental health among caregivers of patients with major affective and other chronic mental disorders. Thus, caregivers need to take extra-special care of themselves too.
Just as the friendly air hostess guides us to put our oxygen mask on first in case of emergency; Remember: If you are a primary caregiver for someone with BD-follow this important Mantra “self-care comes first”.
Some self-care tips for caregivers:
- Take breaks regularly from caregiving activities. Join a class, seek out some entertainment.
- Delegate Tasks, and seek support from friends, neighbors, and relatives.
- Seek Peer support
- Go for outings guilt-free, even if the person cannot come along
- Seek help from Government and Insurance schemes for healthcare benefits.
- Recognize you will have professional disappointments due to caregiving duties.
- Maintain boundaries: Say No to unreasonable demands, set limits with risky behavior, set safeguards for physical aggression.
Join the Bipolar Support Group if you are a caregiver of a person with Bipolar Disorder
Caregiving can be a fulfilling and rewarding role when managed properly. Many caregivers that I meet tell me they benefit from any and every kind of support (professional and social) as it helps them see the positives in their loved one. People with Bipolar Disorder can be challenging but also extremely empathic, creative and generous souls. Once you support yourself better you will see your loved ones in a new light, and bond with them even more strongly.
In view of this, more efforts are being made by the healthcare community to create awareness for caregivers on the management of Bipolar illness. Recently the Minds Foundation in Association with Bipolar India released the “Caregivers Manual for BD and Depression”. More such efforts are needed in the future to reduce the cost of caring.
Hvovi is a Clinical Psychologist and full-time clinical practitioner with her office “MANASHNI” at Powai, Mumbai. She works with adults, children and teens diagnosed with mental health issues. She writes to spreads awareness about mental health through her blog and articles.
Citations
- Baruch, E., Pistrang, N. & Barker, C. Soc Psychiatry Psychiatr Epidemiol (2018) ‘Between a rock and a hard place’: family members’ experiences of supporting a relative with bipolar disorder. 53: 1123. https://doi.org/10.1007/s00127-018-1560-8
- Gania, Kaur, Grover, Khan, Suhaff, Baidya & Damathia (2019). Caregiver burden in the families of the patients suffering from bipolar affective disorder. BJMP 2019;12(1):a006
- Rammohan A, Rao K, Subbakrishna DK. Burden and coping in caregivers of persons with schizophrenia. Indian J Psychiatry 2002; 44: 220-7.
- Studart, Paula Mendonça, Bezerra Filho, Severino, Studart, Ana Beatriz Didier, Almeida, Amanda Galvão-de, & Miranda-Scippa, Ângela. (2015). Social support and bipolar disorder. Archives of Clinical Psychiatry (São Paulo), 42(4), 95-99. https://dx.doi.org/10.1590/0101-60830000000057
