Confronting a devastating disease

It takes time for many to realise that a member of the family is suffering from Alzheimer’s disease.

Every time she visits him, Annie looks for some sign or flash of recognition in her father’s vacant eyes, but in vain.

“My dad was the carer in the family. Every time one of us children fell sick, he would be hovering around our bed like a mother hen, pressing us with food and hot fluids, checking temperature or giving us massages. He would peel and chop fruits every day and make sure that all of us kids ate it. He would make himself sick with worry that if at all I was late from college… More than my mother, it was to him that I ran to whenever I needed a shoulder to cry on…Often, these thoughts keep me awake at night because I am unable to take care of my dad the way he used to take care of each of us…” says Annie.

It has been nearly four years after her family entrusted her father, Jacob, a retired engineer, to Sneha Sadan, a care home for Alzheimer’s patients in the city, run by the Alzheimer’s and Related Disorders Society of India (ARDSI). Even though her father no longer recognises her or other members of the family, he always gets up and comes out on the verandah of the care home, whenever he sees her car coming in.

“Maybe, he knows deep inside that it is me. I have to believe in that,” says Annie, a lawyer, residing at Sreekaryam.

It took the family a while to come to terms with the fact that her father had Alzheimer’s disease. The signs were all there — forgetfulness, irrational behaviour, aggression, restlessness — but it was all put down to depression or some other psychiatric disorder.

“He would get up in the middle of the night and turn all the lights on, leave taps open or soak all the clothes in water. He would pace around the compound aggressively, chasing imaginary thieves away. He would insist that he has not eaten anything immediately after he had finished lunch. Later on, he would refuse to brush or shave or bath – my dad as I knew him, would never eat food without having had a bath. My mother could not cope nor understand that it was the disease which was changing him. Her coaxing him to do things irritated him so much that twice he struck her down. I retrospect, if only we had recognised the signs and symptoms of Alzheimer’s early, we could have taken care of him differently,” says Annie. It was her mother’s withdrawal from the role of the primary carer which changed things. Annie was carrying her second child at the time, and had been advised total bed rest.

“My mother was married at a young age to my dad who was 12 years her senior. All her life, she was used to my dad taking care of her, the house, the kids…he decided everything for her and she was happy to let him. Perhaps, that is why she was totally unequipped for a role reversal when she was expected to take charge. She did not know how to take care of him as his aggression grew,” she remembers. After her mother was struck down — she fractured her arm in the fall — and dad’s aggression was getting out of hand, the family had to think of alternatives. The home nurse who was engaged to care for him could not cope, after which he was taken to Sneha Sadan.

Mr. Jacob is a much more calm and sober now but just a shadow of his old self. “Except for our friends, not many in the neighbourhood know that he has dementia. At one level, the stigma of the disease haunts us too. We need more families to come out and talk openly about this, share experiences, and offer support to one another,” Annie says.

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Printable version | May 25, 2020 3:01:57 PM |

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