Terry’s sister experienced her first episode of psychosis when she was in her mid-twenties. Her sister was working overseas at that time and living on her own, which was part of the reason why Terry missed all the early warning signs of her mental breakdown. By the time psychosis hit her, it was full-blown and out of control. Terry had a hard time getting her to accept the medical help that she desperately needed. Terry did not understand why her sister could be so difficult and angry when all Terry wanted was the best for her.
Finally, Terry managed to bring her sister to the emergency department of a hospital. By then, her sister was in a catatonic state—she could not speak nor move nor respond to the people around her. Terry’s heart broke when she saw her sister so broken. She wondered if her sister was going to be permanently disabled.
But after a week of hospitalization and medications, her sister came back to herself. Terry thought the worst was over, but that was just the beginning. Over the next eight years or so, her sister has had two major relapses, a scattering of minor ones and intermittent bouts of clinical depression, where she seriously considered ending her life. Terry’s caregiving journey for her sister was fraught with challenges.
Terry noticed that in the aftermath of dealing with a loved one’s serious mental breakdown, many caregivers just want to move on and be happy with the fact that they have gotten better. However, with mental conditions, relapses are common and sometimes unavoidable. Terry found that talking through the issues and challenges she faced as caregiver to her sister when she was of sound mind was immensely helpful.
In one of their ‘aftermath discussions’, Terry’s sister came up with the idea to create an emergency resource sheet in response to Terry’s difficulties in making decisions for her when she was unwell. This resource sheet documents the warning signs to look out for as a prelude to her relapse, and how Terry could respond to them. It also provided practical information like the contact details of her mental health team, close colleagues at work and family members, and even the hospital she would like to be admitted to for a serious relapse.
This kind of advance care planning gave her sister control over her recovery plan, even when her illness was controlling her mind. Terry felt that the advance planning became a guide to follow her sister’s wishes for her medical care made when she was of sound mind. The resource sheet also provided Terry a basis for getting her sister to receive the treatments she would otherwise have deemed unnecessary in her subsequent relapses—Terry’s sister could get extremely paranoid and distrustful even of her closest family members at the height of her illness.
Terry held on to the belief that her sister is not her illness, and that recovery is possible. There were times when Terry felt disheartened, that things will never change for the better. In times like these, Terry found it helpful to assess and examine her own expectations of her sister’s recovery. She found that taking the process in small bites, celebrating little successes, was a great way to hold on to her faith and belief. Terry believes that this approach is essential to achieve long-term recovery. Terry sees that she is working alongside her sister, on the same team, to help her battle her conditions.
Today, Terry’s sister has sustained and meaningful relationships with friends and family. She is gainfully employed in a career of her choice. She is a proud owner of a cosy little home. All these came with plenty of hard work and more than a few heart breaks along the way. Her sister’s decade-long recovery journey is one of self-discovery, both for herself and for Terry.
Our caregiver contributor wrote her story with a pen name because she has much to offer to another caregiver but wished for anonymity. We hope the figures below give you an idea of the number of caregivers struggling in obscurity.
Without adequate support, caregivers are susceptible to burnout and depression in the long run.
However, resources are available.
