Once a month, the bright, airy compound of this house in Besant Nagar transforms into a cafe of a different kind. People sit around at tables eating snacks cooked by children with special needs. The visitors all have one thing in common — they care for someone with dementia and try to live a normal life while facing the trauma of seeing a complete personality change in their loved one every single day.
“Caregiving for dementia is very strenuous. The patients are demanding; they become childlike, and suffer from incontinence and disorientation. It becomes very difficult for the caregivers,” says Vimal Balachander, who started the initiative, SAND (Support Alzheimer’s N Dementia) Cafe in February. The cafe runs in an open kitchen built in the house of her mother-in-law, for whom she is a caregiver. It’s an initiative of a larger support group Mitr, which also helps parents of children with special needs.
Her mother-in-law developed dementia when she was 72, and had moved in with them. But things worsened quickly and she started getting violent; so she was moved back to her old house with attendants, where she was calmer because of the familiar surroundings. “Being around familiar things is better for people with dementia; it worsens when you move them to a new place. Every time we had to travel, we would have to move her to her other son’s house and when she came back, she would forget where the bathroom and kitchen were,” she recalls.
Dementia is a degenerative disease. There’s no ‘getting better’ or ‘coming back’ from it. It can get traumatic for the family, who can neither see improvement nor an end, making life very hard for the caregiver — be it the spouse, children and their spouses, sometimes even grandkids.
“Their demands keep changing; how many years can you keep doing it? Especially for the next generation, it is very hard because you have to sacrifice several years of your life,” she says. With the idea of giving caregivers a space and a platform to meet, relax and share concerns, SAND Cafe was born. “We are still trying to see what we can do to help…sometimes it is just about making friends,” she says.
With caregivers spending time with patients all days of the week, a big problem is isolation. “People stop visiting our home. We are alone despite being in the internet age, as we never show our unhappy side. All selfies are happy. So we need a place to share our problems too,” she says, and adds that such a common problem is a great cementing factor.
“Old friends don’t often match up to expectations. Everyone is dealing with their own issues; nobody wants to be burdened with your problems all the time. I’d rather spend time with a group of people like me,” she explains.
Here, the group of people hail from diverse backgrounds and age groups, but the common problem they face make it very easy for them share their issues and concerns. “I have made a good friend who takes care of her spouse with dementia. She is over 50, and I find her very inspiring,” she says. The group even includes a man who believes he has dementia and is here to understand better. Caregivers, who are always in the presence of the elderly, enjoy interacting with the youngsters with special needs as they cook.
Vimal urges other caregivers to fulfil their own needs too — physical, social and entertainment needs. “Only if you are in a state of well-being can you care for someone. Taking a break for a week or two is nothing to feel guilty about, because you are going to care for them for years. Otherwise, you will just end up crying wherever you go — to your spouse, to friends or relatives,” she explains.
SAND cafe at Kalakshetra Colony, Besant Nagar, opens on the second Saturday of every month from 4pm to 6 pm, for caregivers and patients of dementia and Alzheimers. Call 98409 31790 for more details
Dementia Care Notes
Provides information on aspects of dementia, links to resources and organisations in India and interviews with caregivers. There are also case studies. Visit www.dementiacarenotes.in
DemCares
An initiative of SCARF, the Dementia Resource and Training Centre has clinical, research and support projects.The organisation also has support group meetings every month. Call 49539768
Dignity Foundation
Aimed at improving the life of the elderly, the organisation has a Dementia Day Care centre, with occupational therapy, rest and relaxation for people with dementia. Visit www.dignityfoundation.com