The suffering of family caregivers- WHO AFTER ME…

‘Who after me’- is a question which every parent whose child faces a disabling condition, which requires their care-giving, support and engagement, has to deal with. There are many ways to look at this question- to look at the individual side of the question, or look at the social side of the question. Since one cannot but act only at a small level in the short run, I will begin by answering this question at an individual level.

Personal history

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In fact, let me begin my question with myself. When I was extremely ill, my parents handled my full-fledged responsibility; I lived in their home, and they went to teach in their respective institutions (in Delhi University, both of them), while my grandmother and one dog was the remaining family. I was completely incapacitated, would not get up till 10:30 or even 11:00 in the morning on certain days. The depressions were so huge that life was completely unlivable. But whenever the skies would clear up, I would pick up my pieces and start mending the frame somewhere- I mean the frame of my existence.

One thing was clear- my siblings were both in the US, and had lives of their own, and I, the oldest, was with my parents, who both went to work. In other words, at the prime of my life, in my 20’s and 30’s I was sitting at home doing nothing, but some study, some reading, writing and singing. I could not imagine that my parents would keep on working and I would just spend the rest of my life that way. I was troubled, useless to myself and the world around and there was nothing I could do, would do or go meet anyone. (whatever exceptions were there in music or writing happened on days which were not so bad). There were no friends from any dimension- school, college or neighbourhood, no relatives who knew anything or if they did, they pretended to act ignorant, and there was nothing but a great spiritual stagnation.

At a very critical age of my life- at 35, I decided I could not live the life of my parents, I had to figure out my own. What would happen when they would not be around any more? I would have no skills to deal with anything. I would have no income of my own, no friends, no relatives to fall back on, nothing at all…where would I go and what would I do? So that brings me to the question of this post- the question that all parents face, whose children are incapacitated from doing the day-to-day actions of living and participating in life in ways what gives them hope , courage and happiness.

When I got well, whose story is written elsewhere in research, the one thing that progressively became important for me was to see whether this recovery was a chance or random act, or was it happening among others too and what pathways they were adopting to get there. This has been the general direction of my research as well- towards recovery solutions. So if I just come back to the first question, one has to see whether someone like me can act at an individual level or a social level.

At the individual level, one can engage with one person, nay one family at a time, help them comprehend distress, help them rehabilitate and recover the manner I have done myself or now hold many other hands- towards recovery solutions. I do not think people cannot recover- no matter what span of time they have been ‘ill’. But it is just like saying that someone who has been used to walking with crutches will now learn to run. So how to bring the turnaround and who will bell the cat- the suffering? Before they drop their crutches, they have to gain courage that they can indeed walk, that their limbs have strength and they will not tumble, just because they will let go of the crutch, which they have been depending upon for so long. (the crutch metaphor is only a metaphor, no intention to allude to another ‘disability’)

What can one person do?

I am very clear in my mind , that I cannot bring social change- that is for the government to accomplish for they alone have that many resources that they can empower, employ, and rehabilitate hundreds of people. However, that does not mean I cannot do anything at all. I, or anyone like me, can only deal with one person at at time. There are many people who create organizations in the hope that they can mediate with the government and bring in more interventions at a macro level which can transform society. Often a lot of times, these people have no model by which they want the change to come about. I do, because I AM THE CHANGE MYSELF, not just the change-maker, or someone fighting for change, without a concrete plan of action.

I believe that people can recover. Needless to say, I have seen them recover, both from bipolar and schizophrenia; I need not delve into other things of a less distressing nature, not that they do not make life difficult in any way. The only thing we can do is then from this prototype of recovery, to create more recovery outcomes. If recovery could be accomplished by the government then perhaps the whole country would have healed by now, and there would have been no problems.

Maybe some people have hope in the government and its systems, I do not. I think it is only up to me to do what I can and bring all resources I can, to reach out to the widest number of people- both families and individuals to let them know, first of all, that recovery happens all the time, many recover, and it happens all around the world- not just in resource rich countries.

The concern of parents that comes from the WHO AFTER ME question is a reflection of the unending suffering of both parents and their children who have become permanently dependent, thanks to a system of continued infirmity. I know one thing for sure, that if one remains dependent upon psychiatric medication, nobody can recover. Yes, you will most certainly become functional in many domains of life, but independent living, and handling life stresses- that can never happen. Each one of us (including John Nash) who recovers, anywhere, has gone off psychiatric medication at some or another stage of their life, by creating alternative resources, no matter what. So who after me, is a confirmation that the path of rehabilitation that they have followed has actually disabled their child, and made him/her permanently dependent, rather than making them recover any aspect of their lives.

A few months back, I was talking to Dr. K.S. Jacob of the CMC, Vellore on the subject of continued medication, and he brought a startling insight to my notice- that only one- third patients require long term medication. I was so shocked to hear that, because in my 18 years of psychiatric dependence, my psychiatrist NEVER EVER told me that I could go off psychiatric medication, no matter how many times I would implore him to help me reduce the drugs. Certainly he brought them down to a minimum, but no way he would say I could go off them. I would have to continue them for the rest of my life, what did it matter?

What did it matter to him that I had co-morbid conditions and I had gained so much weight that it contributed to a lack of self esteem and self worth? The mental fog that would waft through my brain at all times, never would lift for me to face any day of the year, any festival, any change of season with any ray of hope in my heart? I was just a patient who was a regular nuisance, because she would come and request a reduction in medication all the time.

Today when I look at my own recovery I am grateful to my parents that they let me make some important decisions of my life, including the choice to live alone, including the choice to come back home when one marriage did not work or more. I am grateful to my mother who never told me to take psychiatric medications, because she was quite open to other alternatives. In fact it was she who would regularly encourage me to try out new things and even eat them herself to offer me solidarity- one of them being the bitter leaf of ashwagandha that grew wild in my then home in Faridabad. Ashwagandha is known to be a mood stabilizer, and she would try getting me many sorts of ayurvedic pills and potions, or stand with me in queues of this or that vaidya.

I think one of the key people in my recovery are my parents, and they have always supported me in my choices, no matter how difficult they be. When I see other parents on the one hand I understand their suffering, on the other hand I see how they become the chief mechanism through which their children get medication for years and years on psychiatric drugs- for they never have the courage to look for alternatives. But like I said about mine, though they are the KEY PEOPLE, they are not the reasons for my recovery ALONE, in fact not in any significant way- if I did not have the scope to express myself through other means.

That is the sort of alternatives I am trying to bring together towards the recovery programs we are designing at Hamsadhwani- mostly for people suffering, but in one exceptional case- for parents too- The Caregivers’ Online Program, as part of which parents will not only get to meet many people who have recovered from serious mental illnesses but live lives just like anyone they know. Needless to say, psychiatrists who have a recovery orientation are part of the contributing experts as well as professors who have worked in clinical psychology and health psychology, activists who routinely meet and deal with people having mental illnesses.

Naturally enough all of us who work in mental health, regularly meet people- I also meet families due to my orientation towards family therapy, are more exposed to mental illness stories of people than parents who only know their one or two children or a few friends’ children with identical stories. It is only by exposure to new ideas can new solutions be found- for by now everyone knows that psychiatric medication can only go so far. We cannot solve the problems that we have created by the same thinking that created them (Albert Einstein). As Anil Vartak, the vice president of the Schizophrenia Awareness Association says, that solutions for mental illnesses can only come if those who have recovered actively set out to help more recover. That is also my effort via this program and that is why I have also roped him in.

Parents will have to continue worrying about their children permanently if their caregiving is so dependence-creating that they cannot enable their children to become functional, and self preserving. Instead of working on the deficit side of their children, if they can help them deal with their mental distress in ways that their existing strengths and abilities are only further consolidated, their worry about WHO AFTER ME, will never be a worry again, because after them, their children will be well enough to manage their own lives.

For that outcome to emerge they have to put their children in front, as agents of change in their own lives, and allow them to make mistakes and grow, rather than determine the direction of their growth all the time, proactively run around here and there looking for solutions and meeting all sorts of experts, all over the world.

ON a last note, I just remembered that my mother was a very active and valiant parent when we were growing up as children. She would actively fight against issues in the parent- teachers’ association in school and at another level in the politics of the teachers of Delhi University, among other things, such as women’s issues. However, I thank god that she never took up these roles in mental health, choosing instead to focus on me as the sole concern. In getting her priorities different from parents who created organizations to fight for the whole society, she created the scope for me to recover and possibly bring that knowledge to others, rather than keep debating with the government for more measures to deal with mental health. She did not have any hope from the government too, I reckon. No surprises, I am indeed her daughter.

Of course this is not to say that those who took these paths do not deserve recognition for it. I am certain in their own ways they may have contributed to some social outcomes, but has it also brought about a recovery in their own children’s lives? That is the key issue. If they have succeeded in that, then they may have a path to show to the rest of the parents, or else, it is we who have recovered, who have dedicated our lives and our youth, our homes and our families to the suffering of humanity need to take care of this responsibility.

And this is where I stand too.

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Published by

prateeksha sharma

Recovery Specialist in Mental Suffering- via counseling. Non Profit Founder. Love to write, tend to dogs, manage a little garden. Largely a hermit. Equally as much- classical musician with fingers in many pies. Parallel work in applied musicology-in particular pedagogy. Also...a Phd researcher

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