~ Urging communities to support those with memory challenges ~
September is World Alzheimer’s Month and the 21st is the key day for activities associated with the theme “Remember me.” Alzheimer’s disease is, however, only one of the causes of memory loss; and the 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, whether it be due to disease, injury, stroke or from undiagnosed causes.
Too often we forget; we choose to forget; we look the other way and let the person with dementia waste away in solitude when, in fact, they can still contribute in many meaningful ways to our community. They should not be shut away and forgotten; they want to stay where the action is – involved in life and experiencing challenges. This is not only best for the person with dementia, but it’s also beneficial for the rest of us. By embracing the full spectrum of humanity – from childhood to old age, from able-bodied to disabled – we all grow in love, patience and understanding.
Regional representative for Alzheimer’s disease International and secretary of St. Maarten Alzheimer’s Foundation, Drs. Raymond Jessurun hopes to encourage government leaders and the community to support those dealing with dementia. The foundation is dealing with a growing dementia epidemic and is organizing caregivers and volunteers in monthly meetings, outings, and regional conferences where information is disseminated.
“Society is tempted to forget about what these people are actually going through,” says Jessurun. They have been doing a lot for society their whole lives, and know that because they have dementia, they are just set aside. And a lot of these people have the experience that once they are diagnosed, their friends and family just disappear. That’s why a lot of people don’t want to tell you that they have an issue with memory loss, because you are suddenly treating them differently. They can lose their job; they can lose friends; they can lose everything.”
WEEKender had the opportunity to visit with some of the people for whom these kinds of issues are a daily reality. Long-time married couple Mireya and Henry Ostiana are still very much in love, and they are facing Henry’s memory issues together with courage and positivity. Mireya’s house doctor had told her after Henry was diagnosed with dementia following a stroke that she would now have to make a choice. Mireya: “Leaving him is not a choice – never – I made my choice long ago: for better or worse.”
Mireya’s employer, the Council of Advice, has given her the go-ahead to bring Henry to the office where he can help her with certain tasks. “They understand that if I have peace of mind, they have in me a very good employee,” she said. “He has a lot of ability, really. He can make photocopies, he shreds. He would like to do more.”
When he stays home, he calls her several times a day, she says, to ask what she’s doing and when she will be home. Henry has a lot to say and states with clarity his mind: “I can do everything, but I can’t write normally; I can’t do that anymore. I used to work for the Court of Guardianship, but they sent me home. I think the government has to talk to the employers and tell them not to send people home. Make the employer aware that you can’t send a person home just because he has dementia. If he is a good worker, you have to keep him.”
Jessurun agrees: “They must find out what they can still do, and find alternatives that fit their abilities. I can tell you about a lady here in St. Maarten; she had a dementia condition, but she is like the walking archive of the company. She remembers everything that ever happened at the company, she knows all about all the documents in the files of the company. The younger people who come in don’t know all of that. They need her for her knowledge and experience. She needs help remembering something that happened today or last week. She has to be sure to write things down so she can access her short-term memory, but her long-term memory is accurate.” Most companies, however, don’t understand the value of such people; they only see the negative side.
Henry shared that he can read and, in fact, he reads a lot. “I am still going at the VKS, and I still do the control work. Every letter that goes out, I check it first.”
Jessurun emphasized, “You see, he still has skills from his former job. He has a lifetime of experiences. He can still offer those skills to someone. He even texts with me; and I…oh… I better answer him, because he expects me to answer.”
The Ostianas will soon be moving to Curaçao, where family can assist and help Mireya with Henry’s care. “This is part of the story, you see,” insists Jessurun, “because if our society could have provided him with more support, they wouldn’t have to leave.”
Not everyone has family to help out. Henry’s rehabilitation from where he was after the stroke to where he is now is great. “I can walk, I can talk, I am doing a lot now,” he said. But Jessurun believes that if from the beginning they had given him more speech therapy and more memory therapy, then he would be much further along. “But they didn’t detect it,” he says. “They didn’t see it.”