An unending cause for concern and debate in mental health circles of family caregivers!
Sambandh Health Foundation in Gurugram is a caregiver initiative to address mental health issues, started by families of people living with mental illness, coming together in 2011.
Let me share a recent experience. I was attending the funeral of a Sambandh client ( ‘Member’ of Sambandh). It was an untimely death.
In the Sambandh family self-help group meetings, I had seen the pain and the desperation of the family and their inability to deal effectively with their loved one living with bipolar disorder. This is very common.
The family shifted from Delhi to Gurgaon, so that the daughter could visit Sambandh, the only hope they saw for her recovery. They built their house in a way that it could be used as a ‘group home’, a form of ‘Supported Community Living’ after the parents was no more. All arrangements were being made to make her future secure.
But as luck would have it, she could not visit Sambandh after shifting. She was diagnosed with a terminal illness. Her suffering was escalating. But even in that suffering, the family saw her acceptance of the fatality of the illness as if it came as a solace to her. She was more at peace with herself than ever before.
When I met the mother at the prayer meeting, for the first time I saw the relief on her face. She was calm and peaceful. She said to me ‘You have no idea how grateful I am to God for what has happened.’ Every time I touched my pillow at night the worry about ‘what after me?’ would overtake me from the time she developed a mental illness. Now I know that I have looked after my daughter to the best of my ability. I have fulfilled my duty. I know that she rests in peace and I am feeling so relieved, not having to worry about her future without me. Her suffering has ended and so has mine.
A family member has the courage to openly admit her relief at her loved one’s untimely death, which in any other situation would be an event of so much grief for the parents!
How do we resolve this issue?
Families struggle to,
- find residential facilities
- create a financial trust and find reliable trustees
- ensure that medical insurance is in place
- have psychiatric ambulances available in their state
- advocate for home visits by mental health professionals become part of the health care system, for ensuring medication, food and other physical needs after the rest of the family is no more
All of these are essential, given the nature of the illness. But are these enough? Is that going to satisfy us?
Will all this be enough so that we can sleep each night in peace and not worry about our loved one?
Can we as families be satisfied in continuing to live in unhappy relationships with our loved ones while we are still alive? Are we happy to see them live marginalized lives and be on the fringes of society?
What is it that we are willing to do now to change the quality of our lives and those of our loved ones?
People get unnerved with the experience of mental illness. Families are unable to understand the changes. I saw it happen in my own home with a sibling. I saw my brother’s transition from being a brilliant, socially vibrant person to an angry, stressed out person, losing touch with reality, hearing sounds, coping with unpleasant visions and life slipping out of his hands.
Mental illness can bring along a gap in education, in doing a job or continuing to be a natural part of a family. It makes the person feel that he is left behind and will never be able to catch up. There are identity and self-worth issues to be addressed, readjustment of expectations, rebuilding skills and relationships! I could feel my brother’s desperation. Not just him, the whole family was in pain.
In silence, we shared the pain and denial. The feelings of guilt, of shame, and a lot of self-doubts suddenly surfaced from some dark corners of our unconscious minds and gripped us all. The families need awareness and understanding of mental illness, they need help. But it was not easily available.
Most human beings are intrinsically helpful, but not understanding an illness, confusing it with bad behavior or bad upbringing is responsible for the stigma around mental illness and social isolation. Building a supportive community by spreading awareness is a crucial part if we want perceptions to change.
The behavioral changes, the uncontrolled symptoms give rise to the idea of ‘madness’. People get fearful and want to stay away. The one good thing my parents did was to share the problems with people they trusted so there was no conscious alienation from people close to us. But my brother was isolated anyway, always trying to be in his room, not wanting to interact. It was years before we realized that he was not being difficult. He was living with an untreated illness.
The limited perception of people living with mental illness is the biggest barrier in the path of recovery. There are ample examples in society today, of people living their lives well, even with mental illness. Treatment is available. Today we know that people can and do live happy, successful and meaningful lives.
Sambandh health foundation’s Recovery Model, based on the latest research, addresses all these concerns, those of the person, the family and community at large, through its various programmes.
The Community Integration Centre (CIC), a Recovery Centre in Gurgaon, helps its clients living with mental illness (Members) to rebuild confidence, find a friend circle, strengthen their core to be able to move out into the community with hope, a positive sense of self, changing attitudes, a renewed outlook of life and resilience.
For this to happen, talking to each other, moving out into the community doing those things that are useful for independent living or sharing the household chores play an important role, while still being a part of the safe Sambandh Community at the Recovery Centre. Learning to manage money, operate a bank account, learning new life skills, sharing leisure with friends on weekends, going back to jobs and education reintegrates the person into their own community.
People in need of support can decide where they would like to start and how they would like to participate. The relationship of trust and respect with the staff gives the members the courage to open up and share their deepest desires and find support in realizing them.
Members venture out to participate in conducting workshops on ‘Mental Well-Being’ and create awareness about ‘Mental Health Issues’ by sharing their own personal journeys of recovery. This also empowers them and helps remove the internal stigma.
Sambandh’s family self-help groups meet for emotional support, finding solutions, getting professional inputs, overcome the feeling that ‘we are alone’ and much more! Families also come in for individual counseling for their caregiving role.
Awareness, as part of Sambandh’s Community Mental Health Programme in Gurgaon city and 4 villages around it, helps people to come out of their shell, seek help if they need or refer their friends and relatives to us. And then the recovery work begins. Collaborating with the existing stakeholders in the communities is a great source of strength for us.
Sambandh ‘Group Home’, a form of supported living in the community, in a flat near CIC, with flexible supports and recovery planning, provides opportunities for learning an independent living.
Along with the Haryana Government, we have started Project Recovery, to take the recovery work into each of Haryana’s 22 districts.
People need to experience recovery and self-reliance while the families are still alive so that the families can leave in peace when the time comes.
Sambandh with its the web of human relationships and the connection with all stakeholders provides comprehensive opportunities on an ongoing basis to people living with mental illness and their families to live a fuller life.