Khaleej Times, Kelly Clarke/Dubai, September 21, 2015
On World Alzheimer’s Day today, we remember the love of those who cannot remember
“Daddy really struggled after the initial diagnosis. He was a very disciplined and organized man and within an instant his independence was ripped off from under him.” It was Alzheimer’s that stole the independence from Rusi Gandhi. Here, his son Cyrus Gandhi, candidly talks to Khaleej Times about his battle with the oft-forgotten disease. “He first started showing symptoms in 2008,” Gandhi says.
After several bouts of memory loss, it was a simple request from his wife which proved to be the beginning of his downward spiral. When asked to collect some blue scissors from the kitchen cupboard, Gandhi’s father returned to his wife with a red-handled knife in hand. “My mummy thought he was playing a joke on her at first and she told him again to go and bring her the blue scissors.”
But the 71-year-old’s response alarmed her
“He asked her what ‘scissors’ were.” Soon after, the diagnosis came. It was Alzheimer’s.
In the space of a few months, Gandhi says he watched him transition from an active and social father, husband and grandfather into a withdrawn and agitated patient. But so too did his mother – his caregiver. “My mummy wasn’t a patient herself, but Alzheimer’s made her a prisoner in her own home. She was bearing the brunt of the disease, not my father.” A progressive disease that destroys memory and other important mental functions, Alzheimer’s doesn’t just affect the patient. It impacts the lives of loved ones, too.
As World Alzheimer’s Day falls today, Gandhi has one message to the world: “Don’t forget, simply support”. Gandhi says his personal experience with the disease has taught him one thing. It’s the caregiver who “bears the brunt”. Caring for a loved one with Alzheimer’s can be a 24/7 job, taking an emotional, financial and even physical toll on caretakers. The word ‘sacrifice’ becomes part of a carer’s everyday lexicon and for Gandhi’s mother, she too transitioned from a social and active person into a withdrawn and burdened individual.
“Not only was she dealing with the hard task of being a carer, she was forced to watch the man she loved, the man she had been with for 48 years, turn into a stranger,” Gandhi says. “That would take its toll on anyone.”
After nearly seven years’ caring for her beloved husband, Gandhi’s mother passed away in her sleep in 2013, from what Gandhi calls “indirect depression”. The following year, after 15 months without his wife, Gandhi’s father passed away in a nursing home in India. Describing Alzheimer’s as a “sad disease with no time limit”, Gandhi says it is up to other people to put a positive spin on what is otherwise a very negative circumstance.
“Patience pays. In my experience, the patient never truly suffers because they are unaware. It is the caregiver who suffers. It’s them we need to give support to.” Calling for more people to come forward and participate in Alzheimer’s awareness and education in the UAE, Gandhi is optimistic about the future.
“Right now there are limited resources in Dubai which are solely dedicated to supporting those living through the disease. But awareness is slowly gaining pace and hopefully in the future we can set up a home here where volunteers can support the patient and the carer. This is my dream,” says Gandhi.
The vision behind 4get-me-not
After her father was diagnosed with early onset Alzheimer’s several years ago, 4get-me-not Founder, Desiree Vlekken, wanted to ‘fix’ the problem. “It was hard for me to accept my father’s condition at first but I didn’t know much about the disease so I made it my mission to learn more about it,” she told Khaleej Times.
After consulting many healthcare professionals in the UAE and knocking on “countless number of doors”, she soon realised it was a disease little talked about in this region. It was at that time 4get-me-not was born. A non-profit organisation for Alzheimer patients and carers, 4get-me-not is one of few support groups in the UAE solely dedicated to Alzheimer’s awareness. Its mission is to educate people about the often-forgotten disease. “Initially I started 4get-me-not as an information platform for Alzheimer’s disease, but it became apparent very quickly that giving information wasn’t enough.”
Vlekken said the organisation aims to help tackle the misunderstandings surrounding Alzheimer’s.
“We need to open up a discussion about the disease here in the UAE. The best advice I can give to carers and sufferers is ‘hang on in there. We know you are there and we are trying to give the best support we can’.” Collaborating with voluntary counselors, doctors and pre-med students across the country, the organisation now offers one-on-one and group support to patients and families of all nationalities in the UAE.
“Our aim is to make awareness consistent. We want to crush the stigma associated with Alzheimer’s and tell those who are suffering in silence to make their voices heard.”
What therapies work? Working with volunteer psychologists and representatives from neuron-centric facilities in Dubai including the German Neuroscience Centre, Vlekken said 4get-me-not aims to promote therapeutic activities in a bid to “prevent, not cure” the disease.
“Patient interaction is such a huge part in managing this disease successfully. We cannot cure it but research has shown that interaction with animals – or touch therapy – lowers blood pressure and promotes a calming effect in individuals.”
As a result, Vlekken and her team are now looking at setting up a social programme with some of Dubai’s animal shelters where Alzheimer’s patients and carers can meet with the animals and take part in interactive group therapy sessions. “This will be a great outlet for those affected by the disease and it has already proven to be a huge success in the US and UK.”