Brigita Sivadas is in her mid-60s and needs to be cared for like a child. It is difficult to give her a bath or get her to change her clothes, and she needs to be fed as she would forget to eat her full meal. At night, she needs to be led to the bathroom at least twice. She had spent her working life among children at quite a few kindergartens, but now she does not recognise her son and grandchildren, though she loves watching her grandchildren play.
She is one of the thousands who live in that twilight zone of memory and forgetfulness, a state of being known widely as dementia. Her condition had deteriorated in the last five years and the family had to seek the support of a day-care centre so that her husband, K. Sivadas, at 70 years, would get some rest. She would not allow anyone else to take care of her. Having chosen to come back to Kerala after working in many places as an RBI official, Mr. Sivadas now spends all his time caring for his wife. At the day-care centre run by the Alzheimer's and Related Disorders Society of India, which is the country's first such centre, they take care of quite a few patients like Brigita, who are not bedridden.
Alzheimer’s Day
Every September 21 is observed as World Alzheimer’s Day, to create public awareness of the silent suffering that individuals and families go through as a family member, often one who is just getting ready to enjoy a peaceful life after years of hard work, begins to lose touch with the world and slowly begins to show memory loss and altered behaviour, popularly understood as dementia. Lack of scientific knowledge about this neurological disorder continues to prevent people from sending their loved ones for day care even as taking on the challenge of a caregiver might push the family members to seek psychological intervention for themselves.
Nandini Balakrishnan, one of the caregivers at a day care-centre in Kochi, has been with the institution for 13 years, handling patients with rare tact that she has learnt over the years. There have been instances when the family members of the patients have called her for help and cried over telephone. Some patients are too difficult to care for as the degenerative disease progresses. “I have had to rush to the house of a patient to prevent him from eating his own stool. The family was in tears, not knowing what to do,” she says. Yet another patient, a gentleman otherwise, had started using abusive language that the wife could never fathom he knew? Many a time, dementia patients throw sexually explicit abuses that make the family cringe. Sometimes a daughter-in-law, who does not accept or understand the disease, would feel rather insecure, says Ms. Balakrishnan.
The caregivers have to forget these abuses and look after the needs of their patients as they would do for a child. At the day care, she is a ‘daughter, mother, sister, friend or even a wife’ and they look up to her for support in various activities, sometimes even having a protective concern, which brings on a smile for Ms. Balakrishnan. “We keep them engaged in some activity according to their moods, sometimes playing ball, sometimes playing Carrom or cards or just giving them tasks like threading some beads, or singing songs to them to which they join in at times. We also have to keep an eye to ensure that they do not hurt themselves, and we keep dangerous things away from their reach, just like we do with children.” At the end of the day when they are transported back home, the family is able to manage them and put them to bed for a good night’s sleep.
ARDSI helpline
The national helpline of the Alzheimer’s and Related Disorders’ Society of India (ARDSI) gets calls from various parts of the country and the coordinators offer counselling over telephone and direct them to seek the help of a neurologist. If the callers provide feedback, the ARDSI also updates their list of neurologists whom they could suggest to a caller from a given city. The national dementia help lines are 09846198471, 09846198786, 09846198473 and details about dementia management can be had from www.ardsi.org
