By Nishi Pulugurtha
It has been exactly eight years since that fateful day when Amma left home. We found her after 48 hours and the diagnosis was Alzheimer’s. It has been a difficult journey for us since then. For her, it meant that she had someone to supervise her at home always; she could never be left alone; she could never go out alone; the house keys were kept away safely beyond her reach (if she laid her hands on them, she would open the gate and go off; the tendency to wander off was very strong in her). Even if she wanted to go out for a walk, there would be someone with her, chaperoning her, escorting her, being very careful to see that she did not go off. There were always a pair of eyes on her. I know she did not like all of that. It was stifling for her surely, but concerns for her safety were of paramount importance. There were times when she rushed off the moment we were looking elsewhere and however fast she was, I could get to her and keep her safe. When we went out, which in the initial years we did very often, I always had my hand on her shoulder, she did not like to hold hands and would push off.
Amma often got angry with the help at home. She had the keys with her and Amma wanted them always, it was her house after all. She loved being out, enjoyed walks, movies, shopping, eating out, catching up with the neighbours, exchanging pleasantries, reading, tending to her plants, travelling. After the diagnosis too she did all of this, but never just by herself. I knew she would have loved doing all these by herself at times, but then it was no longer possible. Her safety was our first concern. All of the supervision troubled her. However, Amma was a very jovial, fun-loving person, who adjusted to each and every situation. Even if she disapproved of it, there were not many complaints, maybe a mention here and there and that was it. She would go about her work as usual.
At home she looked after her plants with great care, watering them, removing the weeds from the pots and speaking about any new developments that she noticed in her plants. The help would be with her as she did work at her pots. Her freedom and independence had become completely curtailed. Alzheimer’s was bringing about great changes in the nerves and we really had to be very careful. In the initials stages she often said she was forgetting things as she was getting old; she often laughed about it too. She was completely alright with the visits to the doctors and all the clinical tests that needed to be done. Of course, she did not like to wait, got very impatient and always wanted to leave. I often distracted her attempts to leave by talking to her, but then her attention span was very short. After a couple of minutes she wanted to leave again and the pattern would continue. At times, we did have to leave the waiting area and walk about for a while – no amount of talking could convince or distract her. With the doctor, she was her fun self in the initial years after the diagnosis, answered questions, did whatever she was asked to do and once even told me that the doctor was mad as he was asking her to do all strange kids’ actions with her hands. She was no kid she said. We spoke in Telugu, so the doctor had no inkling of what she said. She spoke to him in English and Bengali.
The help at home had instructions not to interfere with her activities, to let her be by herself and at the same time to keep strict vigil on her. Amma knew that and disapproved of it. She did not like not being able to go out on her own and do things she liked to. Amma often told me very disapprovingly that the help at home had kept the keys of the house with her and that whenever she was out in our compound she was there keeping a watch over her. At times she made it clear that she did not like all of this. However, she forgot about it after a while and would begin chatting with the help, reading the SMS-es she got, telling her what to type in the SMS, scolding her, enquiring about her home and children.
Coming to terms with these and many more behavioural changes is an extremely difficult task. One can just never be prepared for it. It is even more difficult to come to terms with these changes in a parent and loved one. It creates a great deal of stress for the carer who is at a loss at how to deal with the scenario that she/he finds herself/himself in. Each day throws up new challenges, new problems, some can be dealt with, some one learns to deal with and with some, one needs to struggle to learn how to deal with.
Dr. Nishi Pulugurtha is Associate Professor, Department of English, Brahmananda Keshab Chandra College, Kolkata. She is an academic with varied interests and writes on travel, too. Twitter: @nishipulu
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