“Do you hear what I am talking to you right now?”
When we said yes, the psychiatrist said:
“This is how the patient also hears, so reducing the dose doesn’t really help”.
This is one of the doctor’s responses when we discussed reducing my mother’s medication dosage. One of the most significant dilemmas that caregivers of psychiatric patients experience is the minimal or total absence of decision-making power regarding treatment. There is almost zero scope for offering suggestions on medication, and so most of the time, caregivers feel vulnerable and confused throughout the entire process of the treatment.
Who Cares About Patient Rights and Caregiver Knowledge
This approach to modern psychiatric care is a classic example of just treating the disease, where the collateral damage to the body is not a matter of concern. Whenever we attempt to initiate a discussion about the treatment, we are met with the counter-position that we need to control the patient’s symptoms. In the journey of controlling these symptoms, the medicines affect the person’s overall functioning.
In a conversation with one of my psychiatrist friends, I found that there are also holistic ways of dealing with psychiatric patients, but very few people incorporate them into practice. Then I realised that a rigid form of conventionalism exists in the framework of modern psychiatric treatment.
Even cancer patients can choose to deny treatment or discontinue medication. But when it comes to the case of psychiatric patients, patients are not given a position to take a call on treatment, and the caregivers are placed in a total dilemma.
Recently, I happened to attend a discussion on mental health policy and the discussion around the autonomy of the patient to choose the treatment and even the human rights concerns surrounding it. In my further interaction with a geriatric psychiatrist, I gained the insight that we can say NO to a high dose, which brought immense relaxation and clarity.
Another important and worrying thing we realized during the treatment process was regarding the brief duration of a single psychiatric consultation, especially in the follow-up check-ups where the time that a patient gets is often less than 10 minutes. This was so disheartening for us to go through this and realize that the psychiatrist’s duty is mostly limited to prescribing the medicine, and not interacting with the patient meaningfully.
The saddest part is, even when we insist on guidance on what the caregivers can do here, most of the time, the answer is simply to make sure that the patient is taking medicines properly. We were sure that there was more to be done. But we never received any guidance in that regard.
I believe this is a problem arising from both the insufficient number of mental health professionals available and the limitations of the current treatment modality. I strongly believe that psychiatric treatment needs a more inclusive and empathetic framework.
My Mother on Medications: There and Not There
I’m discussing this as one of the caregivers (along with my sibling and family) of my mother in her journey of psychiatric treatments for the last eight years, and the encounters we had in the process of it.
It is a life-altering experience when all of a sudden, an energetic person turns to be silent and dizzy all the time and lies down the entire day due to the high-dose medicines after being diagnosed with schizophrenia in 2018.
It is also about realising as grown children, that we are actually losing out on the mother that we have seen and who brought us up. The shift was intense – she wasn’t calling us or talking, there was no family gossip, and there was complete withdrawal from almost all social functioning, including reading the newspaper. We had to transition from care-receiving children to care-giving adults, and it was too much to process and act on.
Though my father acted as the primary caregiver for a long time, we quickly started feeling the mechanisms of a single-parent household in the total absence of inquiries about our health, absolute silence on our presence during festivals etc. That was painful to process, and even after 8 years of treatment, we haven’t completely gotten over it. Though we realise the need to be responsible adults, even in that process of adulting itself, sometimes we wish to receive the same warmth, concerns and check-ins that usually come from a mother. That pain is more about the emotional absence of a parent.
A major issue I encounter these days is that almost nobody understands that psychiatric care-giving is something different from caring for a patient with a physical illness. Even with the people we are close to, we need to put extra effort to make them realize the nuances. After a point, I found it to be too much labor to make others understand, and slowly stopped sharing the minute details of it.
An Uncaring World and Stigmatized Identity
Along with all these dilemmas on treatment, caregiving and emotional labor, the other issue I encounter is the lack of concern of people around the patient. We have seen people staring at her – at the slow physical movements and noticeable physical gestures that were medication induced. It was also disheartening to hear people making insensitive comments about someone’s illness during family and social gatherings.
After a point, I realized that ableism is a huge reality of the world. Watching the Hindi movie ‘Piku’ 10 years ago versus watching it now, I feel a huge difference. It’s a movie which depicts the story of an ailing parent; I watched it then as an outsider and now as a caregiver.
All of a sudden, our life got centered around doctors’ appointments, everyday checks, medicine, managing food and stomach upsets, arranging domestic help and training them about disease and behavior.
We had to manage micro details like remote discussions on carrying food if she is going out at odd times. From this journey, I understood that reality can only be truly understood through living it. We are unable to connect with others’ pain since we belong to the able and privileged majority… until it happens to us.
Accepting psychiatry itself is still difficult for people, and one needs to fight many odds and challenge many stereotypes just to seek treatment. In the case of geriatric psychiatry, the impact is doubled or tripled. There is a stigma against the medication process.
On one side, psychiatrists believe that medication is the only hope; on the other end, there is a huge community surrounding us still stigmatising medication for psychiatric treatment. Additionally, there is an absolute absence of integration of physical health issues that arise as side effects of the psychiatric medications.
We tried to engage with this issue multiple times with her previous doctors, but our concerns were not addressed. There is a critical flaw in looking at mental health issues as a separate problem. There should be a mechanism to holistically integrate mental health issues with the broader health issues and services. There is also a total absence of much-needed support groups for the caregivers or a community mechanism with a trained group of ground-level health workers.
Divya Kalathingal
Dr. Divya Kalathingal is a faculty member at the School of Liberal Arts, Alliance University, Bengaluru. Her work primarily engages with forests, conservation, and tribal studies. In this essay, she reflects on her experiences as a caregiver in the realm of mental health to explore questions of treatment, care, and patient autonomy, while contributing to wider debates on mental health interventions and rights-based approaches to care.