The concise Oxford English Dictionary defines Caregiver as a carer, further it defines a Carer as “a family member or a paid helper who regular looks after a sick, elderly, or disabled person. That said, being a care giver or a carer is an experience that words cannot describe for we cannot narrate feelings and emotions, thoughts and behavior while we do this role. It is, I feel, a rather neglected and unsupported set of people in the society.

My involvement as a caregiver and helping a caregiver has been difficult yet experiential.

The patient, my father,

In 1996, my father was diagnosed with Cerebellar Atrophy when he was about 61 years of age and at that time I was 31years young and had been married for a few years. That was the beginning of the end for my father and the next 8 years can be best described as turbulent. My mother was his primary caregiver and I was the secondary caregiver, being there for my parents in person and financially. The saving grace was that my husband did not raise an eyebrow when I said that we should stay with my parents and neither did my in-laws have any concerns with this arrangement. Not a day went by when we did not learn a new aspect of the dreadful condition called cerebellar atrophy. The whole experience started with our general physician Dr. Pradeep Tara, suspecting that there was a problem due to the constant ataxia. After an angio-MRI he told us that my father has this progressive degenerative condition called the Cerebellar Atropy in which the thinking mind, the cerebrum, remains intact but since the cerebellum atrophies, the muscular coordination and balance is affected, thereby rendering its patient with multiple symptoms over time, such as wide based walking, lack of hand and feet coordination, slurred speech, difficulty is swallowing, cramping and disfigured limbs. The disease or condition starts with minimal symptoms and it progresses slowly to affect one part and then the other. I think that my father was a very good patient and he endured treatment and care without any complaints, being cheerful most of the time, watching television and still keeping track of the world events. He was an advocate practicing in the Supreme Court of India and a crusader for the needy and the down trodden and I can only imagine how difficult it would have been for him to adjust when his very life was altering, from being a fiercely independent and active person with a view on all things political. As the disease progressed he went from being able to walk, then only stand, then just sit and finally to lie in bed all the time which brings with it, its own concerns.

The Experience

My initial thoughts as I came to realize the impact of such a diagnosis for my father was a mild feeling of anxiety like when he were to be unwell with fever. I did not know then that the disease would sap life not only from my father but also from my sister, my mother and me. It changed our very being and out relationships. Sometimes I still wonder what if my father had been healthy, how would our lives have been, would we have become as strong as we are today?

My thoughts were always around my father’s health, what medicines should he be taking, in those days of no internet there was only one source of information on the prognosis and that was the treating doctor, Dr. Pradeep Tara, so what questions should I ask him.

The feelings, less said the better, because it one whirlwind of emotions and feelings: sad, upset, anxious, trapped, helpless, sometimes hopeless, empathy, sympathy, compassion, strong, weak all of them rumble and it has its own pattern. Sometimes many feeling come together at times one feeling comes and it remains for many days. A time came when I could not understand what I was feeling and I became an angry person. I was angry at the situation, at my God because he made me go through such hell or so I believed, myself for not being able to deal with the situation. I forgot happiness, what gave me happiness or to do things that made me happy. I was jealous of those around me at work, at parties, my relatives, all those who would laugh out loud as if they had no care in the world. I was constantly worried about my mother’s health and well being as she herself had a medical condition and had to be the primary care giver. I wanted to give my sister the freedom to pursue her dreams and did we did everything in our capacity to help her go study in the US but at the same time I envied her freedom. Guilt set in immediately on having such feelings. I did wish to be carefree and be free of responsibilities. I limited the number of people I interacted with and that only because I had to live with them, work with them, needed them. There was no spontaneity in my relationships and I know that it was forced. Heaven knows how my marriage survived? If it had been any other person other than my husband, Debashis, it may not have. The atmosphere at home was very anxious and tense.

My behavior, now when I think back, has been atrocious. I was diligent at work but that was it, I completed my work as I was instructed to and delivered it, I did not go beyond what was required of me because I had no energy and no interest but I needed to keep my job because I needed the money. I restricted people from meeting my father because I hated the comments on how we could care better.

The ask of a care giver

It is not right to say to a caregiver “I can understand what you are going” through to a caregiver in any form. No one does unless they are in that situation. What a caregiver wants are as follows:

1. Comforting words, not “be strong, for you have to bear it and be brave for your family”; so what about me?

2. Supporting relative, not sympathy, but their presence when I am scared and anxious, some one who will be with me when the doctor is performing procedures on the patient

3. An understanding doctor, a General Physician who will stand with you through the length of time and through the stages of the disease and in that we were very fortunate to have Dr. Tara. He would arrive home to see my father and help at a moments notice, giving my mother and me comfort and helping my father. He has done numerous procedures for my father at home for which any other doctor would have asked us to take him to a hospital. For that we are eternally grateful.

4. A good help at home, someone who will do all odd jobs and not just clean or cook and go away. They are the very foundation for the caregivers. In this aspect too, I feel fortunate to have Shiv and Jacob staying and helping us through those tough days

5. Psychiatric or counseling help because the carer is carrying a burden that is not seen by the people around them, they carry it within them and that needs to be shared with someone. Any help to allay the difficulties and feelings at that time

6. A reliever, not someone who says “I can help if you need help”, but someone who will actually comes, sits and relieves the carer from the anxiousness and tension for a few hours.

7. Relatives and friends who are willing to help in taking decisions and support by giving some free time to the carer and not those who “drop in to see” and walk away. There is nothing see but suffering and the carer does not want suggestion nor does the patient want sympathy

8. Friends of the patient who will talk to them as if they are a whole individual and not treat them as a “wonder” or a “phenomenon” or an object. They have a sharp mind and love to reminisce

But for my daughter, Veda, who gave us joy by her sheer presence, but for our being together through the tough times, but for our belief in each other and trusting each other, we may have been far worse than we are today. Now when I look back, I think we had our cross to carry and we were able to carry it with humility because the cross could have been larger and heavier.