CHENNAI: One of the biggest problems of being a caregiver to a loved one with Alzheimer’s or Dementia is the lack of community support group. To see their loved one live through a time loop where the past and the present collide and nothing makes sense anymore is a gut-wrenching ordeal. The disease progresses rapidly and there’s no coming back from it.
For instance, a monthly trip to his hometown in Palakkad is a ritual that Chennai-based Suresh does not miss. After his mother Leela (86) was diagnosed with Dementia more than four years ago, he has chosen to be by her side for at least a week every month. Suresh’s mother lives with her daughter Neeraja, the eldest of her five children.
Suresh says, “Since my vocational interests are in Chennai, I have to be here most of the time. But, I ensure that I am by her side at least for a week and help my sister take care of her. I am glad that despite her failing memory, she remembers me even though in her head, she seems to be trapped in a different time.”
Suresh says they saw the earliest signs of the condition soon after his mother underwent a heart surgery a few years ago. “Her persona had completely changed. She looked a lot more aggressive and even though she recognised me, she would soon forget that I was staying with her for a few days,” he says.
Over the years, the condition has progressed quite rapidly. To help Neeraja, Suresh and his wife Lalitha, spend at least a week in Kerala.
Leela, who spent her early days of life in her ancestral home in the same vicinity, tells her children that she wanted to go to her old home, a house which was demolished years ago.
“She is always talking about going to her old house and doesn’t accept our explanation that it’s no longer there. My sister is 60-plus and has to keep a constant watch over her. Since she wanders a lot, Neeraja has to ensure that the door is locked,” he adds.
Leela’s husband passed away early this year, but she had already forgotten him a couple of years ago. During a holiday in Guruvayoor, Suresh and his family were shocked when she said that there was a strange man in her room. “Father was always her priority, but that day she had no memories of him,” says Suresh.
Suresh’s daughter Vani, who visits her grandmother once in two months, finds the whole ordeal painful. “She still thinks I am in school,” rues the 25-year-old. “Initially I kept telling her that I am working, but then I realised that she isn’t registering anything. So now I tell her that I am doing well at school.”
There have been many times when Leela didn’t remember that she had eaten, “The most worrying part is her forgetting to have medicines. To prevent any untoward incident, we keep tablets from her reach. My sister has a tough time assuring her about medicines and food. But she has no other choice,” Suresh says.
Vani adds that her grandmother continues to collect mangoes and coconuts from their grove for everyday cooking. “She gets tired, but if we stop her she gets annoyed with us. She is stuck in a past that we find difficult to cope with, and for her, we are in a time, she is unable to relate to,” adds Vani tearfully. All the caregivers City Express spoke to have said that without community support, it’s that much harder for caregivers to not only identify and access resources needed to take care of their loved ones, it makes their struggle an isolated one.