On the phone, Lakshmi Jagannathan sounds exhausted. Her husband has dementia, and being the main caregiver during the lockdown is taking a toll on her. It has been pure misery, and Lakshmi puts a number to it.
“Today is the 40th day since he is at home full-time,” volunteers Lakshmi.
Since Dignity Foundation’s Dementia Day Care Centre at Anna Nagar closed temporarily due to the Coronavirus outbreak, Jagannathan (70) has been her responsibility.
Otherwise, Jagannathan is accustomed to having a routine away from home. Every day, except for Saturday and Sunday, around 8.30 a.m., he is taken in a van from his home in Kotivakkam to the daycare centre where he is introduced to psycho-social activities with 30 other dementia patients.
No support system
“I wish he listened to me. I cannot compel him but it’s emotionally draining to see him not do anything; most of the time, he just lies in the bed. Now, every day he says, ‘Today is Sunday, so no office’ and prefers to stay idle,” explains Lakshmi.
Jagannathan is good at yoga and calculation but with his routine disrupted, he feels lost and engulfed by an almost debilitating indolence.
Merita Joseph, a counsellor with Dignity Foundation, says the lockdown is making some of our dementia patients disoriented. “I am more worried about caregivers at this time as some of them are stressed out, as they don’t get sufficient sleep and don’t have food on time,” says Merita
“Our team calls the caregivers every day, and it is not unusual for the latter to break down while talking about the challenges they face,” says Merita.
It’s more stressful for those dependent on only one caregiver.
“Caregivers need a window to vent their feelings and the least we can do during these times is talk to them and offer some help,” says Merita.
Sudha Meiyappan, founder, Parivarthan for Parkinson's Foundation, agrees that it’s difficult for caregivers as a part of their regular routine which includes going for a walk, and taking up any other activities has been curtailed due to the lockdown. “Unless they have someone younger at home, it becomes a challenge for the caregiver,” she says. The support group meeting that Parivarthan had has now switched to a virtual platform every Saturday.
“We have had dance sessions, art therapy for the caregivers and the persons with PD,” says Sudha. Also check out its Facebook page parivarthanforparkinsons Chennai that has posts on how to beat the lockdown blues.
Database of caregivers
Dr. R. Sathianathan, vice-president of Chennai Chapter of Alzheimer’s and Related Disorders Society of India, says there's a need for an alzheimers’ registry, which among other details should also have information about caregivers. “This will help us reach out to people who are facing any challenges, the pandemic is one example when there’s a lot of trust in the caregiver,” says Dr. Sathianathan. He has been offering support via phone.
Caregivers of children with autism spectrum disorder also need a helping hand during these times.
“Talking to people facing similar challenge can sometimes be comforting,” says Major General Suresh, a member of Autism Society of India. He says members are open to receiving calls and offering emotional support to caregivers.
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Support services for caregivers
* Parivarthan for Parkinson's Foundation -- Sudha Meiyappan 093810 35979
* Dignity Foundation -- Felista 9840395943
* Autism Society of India -- Major General Suresh 9341245332
* The department of neurosurgery at Kauvery Hospital 4000 6000
* Alzheimer’s and Related Disorders Society of India -- Dr. Sathianathan 98 4101 9910