~ Raising awareness of Alzheimer’s Disease ~
September is World Alzheimer’s Month with the theme “Remember me.” St. Maarten Alzheimer’s Foundation wants to take this opportunity to call attention to the people in our community who are dealing with memory challenges from a variety of reasons, with the goal of broadening our understanding of the scope of these concerns, and creating more support from grassroots to government.
WEEKender had the opportunity to visit with some of the people in our community who are dealing with memory loss. Regional representative for Alzheimer’s Disease International and secretary of St. Maarten Alzheimer’s Foundation, Drs. Raymond Jessurun, brought by Henry and Mireya Ostiana, who we profiled in last Saturday’s edition. Another person with a story to tell is Vivvet Cramer.
Vivvet’s dementia has not been classified as Alzheimer’s. In fact, her condition has gone undiagnosed for five years, since the morning she woke up and could not recall what she had done the day before. She asked her daughter, “What did I do yesterday? Did I go to work?” At first, her daughter thought she was joking, but then she saw the expression on her mother’s face and knew it was a serious situation.
That occurred when Vivvet was only 40. She and her family have sought medical help, but to no avail. Jessurun explained that there is no neurologist on the Dutch side, and the French side could not find what is wrong. She even visited her home country of Guyana to get a diagnosis, but no one could determine the cause of her sudden memory loss.
With the help of the Alzheimer’s Foundation, Vivvet has learned some ways to cope with her lack of memory. “I find people and places are my biggest challenge. My long-term memory is very good, though, I can remember my youth clearly. But when it comes to yesterday, last week or earlier today, I have gaps.” It might seem like a scary situation to not be able to trust your own mind; but with help, most people with dementia can deal very effectively with their challenges.
Jessurun: “We train them not to be scared, but to accept the situation. We give them practical tips to help them remember. One method is just what we all learned in school. Write notes. “If you write it down, you can then refer to your notes and know who called on the phone or whatever has happened.” Another skill involves storing away information in a new part of the brain, having someone tell you what happened and you input that information consciously where you can then retrieve it at a later time. It helps to repeat it aloud.
Vivvet was in the prime of life with a fulfilling career as a school teacher when she suddenly developed dementia. She feels she could still have a role to play in the schools, perhaps as a teacher’s aide. She is still an effective teacher with children needing specialized one-on-one attention. Her friend and colleague Sheila Peterson helped her find a place to help children in an after-school program. “She is very, very creative and when she teaches, everything goes well. She doesn’t need any motivation; she just needs someone to lean on now and then.”
“This is the thing,” said Jessurun. “What are the opportunities out there for people to still be an asset in this community? Too many times, the employer doesn’t understand the situation. For them, it is either to perform like they expect or as soon as you have a little disability, they send you home.” Sheila agreed: “I think if our community is more aware, it will be better for everyone. We need people to help out, show compassion. She can do it. She’s able. Why should she just stay home and go down the hill?”
Sheila knows first-hand the struggles Vivvet is facing because her own mother is dealing with Alzheimer’s Disease. “My mother’s situation is totally different than anyone else’s situation here. “There is such a broad spectrum. In fact, both my mother and my ex mother-in-law have Alzheimer’s; but they are just totally different cases. I am very lucky that we can afford someone to come in to help take care of my mom, because if I had to do it alone, I don’t think I could manage; and there’s not really any place here. She goes to a gathering by John Larmonie Center, but that is really just for older people in general. My mom doesn’t like to stay inside. Also, she is in denial about it all, which makes it more difficult. She was the head of accounting for Food Center for over 30 years.” Sheila pauses for a moment and thinks: “There should be more help coming from the government because if you can’t afford a caretaker; what can you do? You kind of have to put your whole life on hold for them.”
Jessurun: “We need a place for people and we need more support. We have a plan to build this kind of day care centre, but with all plans, you end up with the same question: ‘Who’s going to pay the bills?’ At the end of the day, the key point is that these people have given their lives to the society; and when they have needs, society is turning its back on them.”
Mireya Ostiana-Wyman shared her opinion: “I find that society is too quick to judge and employers always want to take the easy way out. In other countries, e.g. in the Netherlands, they will guide you through the process to reincorporate you into the work environment and your employer has an obligation towards you. Because before you got sick, you were the employee; so after you are sick, you are still the employee. They see they have an obligation to assess what you can still do and find how you can contribute. They will place you somewhere else in the company. And that is something that I find is missing here. They go for the easy way. They say simply, ‘You are no use to us anymore.’”
Dementia is a growing epidemic and the foundation hopes to encourage government leaders and the community to support those dealing with dementia.
Jessurun: “I think also what is needed is education. Employers and society simply don’t know what to expect in these situations. So we have to raise the awareness and we have to educate. But the only way to learn this is to get to get in contact with these people and their loved ones, who are basically the ones that know them the best. They are worthy of living a life that is dignified; life that is still enjoyable, and not to become depressed. When I met this family [the Ostianas] for the first time, they were depressed. And it’s because of the work we do – counselling, educating, providing information and looking for opportunities – that now they are active and coming forward, without shame, to share their stories to help others.”