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Tom and Peggy Misciagna were at home recently at their home in Manassas, Virginia. They were talking about children they adopted abroad in the 1980s, when Tom, 64, remembered a major detail.
"We have two children from India," he said.
Peggy, 59, intervenes. "Philippines".
"Oh yes, Philippines," said Tom, a retired CIA officer. He smiled wryly at his wife. "It's Ollie who speaks."
Ollie is their nickname for Alzheimer's, the disease Tom diagnosed with cancer seven years ago. For Misciagnas, Ollie is a third presence at home, a presence they have never invited. But since he is here, they give him room. And while it may seem counterintuitive, they even try to have fun with him.
This approach – giving the disease a nickname, zigging smoothly after hitting a zag – places the Misciagnas in a growing camp of people determined to approach dementia care differently, addressing it with a sense of urgency. openness, play and even wonder.
This is a stark contrast to previous generations of Alzheimer's patients and their caregivers, who saw the disease as something to hide. According to a 2015 report by the Alzheimer's Association, less than half of patients with Alzheimer's disease are told that they have it. According to a study conducted in 2012, this cancer has surpassed cancer, a disease feared by Americans. He was caught in shame, stuck in what Bill Thomas, a geriatrician who works to change attitudes towards old age, calls "the story of the tragedy".
"The main framework America has to deal with this is. . . that it's a terrible and destructive race until you die, "he said. "While this is true, it is extremely useless for families and seniors."
Family members often try to convince a loved one to correct the facts or remember things correctly, but as the disease progresses, it can transform their daily interactions into grim and increasingly frustrating struggles. .
Instead, Thomas and others advocate a more joyful approach, which could help caregivers and patients. This involves a lot of flexibility and willingness to broaden one's ideas about how things are supposed to be – even, crazy as it may seem, to consider Alzheimer's as a kind of gift.
Too much attention is focused on the medicalization of the diseasesaid Mary Fridley, co-creator of the workshop "The Joy of Dementia (you must laugh!)" at the East Side Institute, a research center on alternative psychology and education in New York.
"Dementia is extremely painful," said Fridley, who wrote about caring for his mother, who died of Alzheimer's and died a year ago. But, she added, "I really believe that it is an opportunity, if people wish, to improvise, to make idiotic, to play, to free us from the constraints truth, knowledge and suppositions. "
A pilot study conducted in 2016 in a Canadian retirement home revealed that the behavioral and psychological symptoms of patients with dementia had significantly decreased and that their quality of life scores had significantly improved after 12 weeks of elderly clowns who had used humor, empathy and improvisation. Caregivers also seem to benefit: An Australian study in 2016 found that dementia care staff with positive attitudes and "person-centered" strategies felt more competent in their ability to provide care.
Although large-scale studies of positive approaches to dementia remain to be done, an increasing number of groups in the United States are adopting them.
Thomas's organization, ChangingAging, is hosting a traveling show called "Disrupt Dementia," which explores the emotions associated with dementia. And in Seattle, a collective movement known as Momentia facilitates social gatherings in cafes, museum visits, zoo rides and even gibberish conversations for people with dementia and their caregivers.
It's familiar to Fridley. "With my mother, especially when she started to lose, her ability to speak, she babbled and the words were nonsense, "she said.
Rather than being confined to a precise idea of what language is, Fridley has stopped worrying about it.
"Sometimes we created a poem together. She said something and I would say something that, quote, rhymed, then she said something that rhymed: "I die"; "You die"; "I dine"; "I'm having dinner before I die."
Jennifer Carson, director of the recently launched advocacy, education, and dementia research program at the University of Nevada in Reno, is encouraging this type of commitment.
"Alzheimer's disease can be a liberating event, an opportunity to steal," she said. "This is by no means to dismiss the pain and suffering resulting from dementia, but to understand that much of this pain and suffering comes from the response."
Carson thinks that the social reaction after the diagnosis is causing a lot of suffering, which she describes as being treated as if you were not there anymore. "Tell someone that he has dementia, then ignore him: it is suffering, much more than the tragedies intrinsic to dementia itself."
This is the experience of Brian LeBlanc of Pensacola, Florida, who was diagnosed with Alzheimer's four years ago. People walked and turned to "whoever I was with and asked," How is he? ". I turned to them and said, "I'm fine and I can still hear you," he said.
LeBlanc, 58, knew the disease painfully – his mother, grandfather and great-grandmother had it – and receiving his diagnosis was devastating. But, he said, "I did not want to stay in this dark place."
Her mother never wanted to talk about her Alzheimer's and withdrew after her diagnosis. However, Mr. LeBlanc had a background in public relations and marketing. So he started doing what he knew best: traveling and speaking in public, hoping to educate people about the feelings of Alzheimer's disease from within.
From the beginning of his diagnosis, LeBlanc used humor as the mechanism of adaptation. After learning that he was suffering from the disease, a friend sent him a photo of a t-shirt that reads:
"The roses are red
Violets are blue
I have Alzheimer's disease
Cheese on the toast. "
"I thought it was the funniest thing," he said. "These are the kinds of things that move me forward. I am sick of the stigma of those who say that I do not look like Alzheimer's disease. But those are really my friends, who will stay with me and joke and say, "Hey, do you have the $ 20 you owe me?" And then I have to stop and think, and they will start laughing. "
Rethink "the idea of normal"
In a ballroom at a volunteer fire station in Walkersville, Maryland, in November, Karen Stobbe asked the public, which included professional and family caregivers, to partner. Some were there with spouses with dementia. Stobbe showed them how to be reflected in the movements of their bodies, letting their partners lead, until the whole room was a bow-arm dance and erect heads.
Stobbe, 54, has spent a third of his life as a caregiver, first for his father with Alzheimer's disease, who died in 2000, and then for his mother, who has been living with the disease for 17 years. and died last March.
She had trained as an actress and found that theatrical improvisation techniques also worked with her: she met them where they were and followed their signals, no matter how unexpected they were.
Now, as part of In the Moment, a nonprofit Stobbe has been created to train people in the interactive care of dementia. She spoke to 150 members of the Greater Maryland Chapter of the Alzheimer's Association.
Do not deny; agree, she told them. Do not argue. Fluidity, rather than resistance, is the key to successful interaction. When a patient asks for something unreasonable or impossible, rather than saying "no," say "yes," then insert a workable suggestion.
"If someone says," I want to go home, "you can say" Yes, and tell me about your house ", or" Yes, and it's a little cold; let's go get a sweater, "she said. "What it is, it's a dressing for the moment. It is to calm her down and say, "Yes, I hear you."
For caregivers, staying positive means giving up expectations about how things should go, Stobbe said. "We have this trend where we want this person to be back in our world," she said. "We think it's not normal and we want them to stop. If someone sitting at the table rips napkins and he feels joy, why not let him do it? Just because it's not our idea of the normal?
Instead, she said, it can be rewarding to know their world.
So, if they see a duck on their heads or monkeys outside the window, playing with "what's out of their mouth because the edit button is off" can allow everyone to relax and to have fun. "Laugh or sing with them," she says, "and they see that everything is fine."
Fridley encourages people to see the non-linear, often fictitious dialogues of Alzheimer's patients with the same expectations they would have for poetry. "I think almost everyone agrees that the experience of writing and reading poetry is different than writing and reading a newspaper," she said. she declared. "Poetry is not loaded with truth. I think most people see this as a language game, and people accept it for that and like it because it allows us to connect in a non-cognitive way. "
After all, she said, there are many things we do in everyday life that do not really make sense. "We dance nonsense, we look at the moon, we fall in love with love and all these things are wonderfully unreasonable."
Make things more fun
Recently, Tom and Peggy Misciagna were at Bowl America on Mathis Avenue with black shirts matching the Iron Eagles, a mixed league Friday morning. Tom, a man solidly built with perfectly trimmed pepper and salt hairs, picked up a ball and leaned over, sending him crushing against the bowling pins – the last picture of the day.
It was not really a strike, but it was close. His teammates applauded.
A small smile appeared on his face as he joined his wife on the bench.
"I came hard, did not I?"
"Good game," she said, and their fingers tied for a second.
It was lunch time. At Captain D on Centerville Road, they ordered their usual three-piece fish platter and talked about their lives and how their illness changed them. How difficult it was at first for him to tell people that he was a bearer. How, now, when they tell how they met, he needs her to clarify the key details that he once knew by heart.
Since her diagnosis, the couple has made a point of trying to have fun together. Tom started new activities such as darts and coloring books. He had never danced before; Now he and Peggy are going to dance. He never played a musical instrument, but he started playing the violin. And they joined the Forgetful Friends Chorus, for people with dementia, their friends and their caregivers, although he had never sung before.
"Wait a minute, wait a minute," he added. "When I was a child altar, I had to sing."
"In Latin," Peggy added.
He smiles. "In Latin, not less."
Peggy is grateful for Tom's ability to joke about his failing memory. Nevertheless, she must constantly know how to speak with him about her limitations. "It's almost like a child – if you say to a child," You have to do it, "well, they will not do it. . . . If we are doing the lawn and I do not stop saying, "Tom, do that; Tom, do it, "at one point he becomes a little rebellious, like a child. If I ask him to take some leaves, he will say, "No, I'll do it later." A few minutes later, he will say, "What can I do to help?" And I will say: "Can you go get those leaves there?" And then he'll go do it. "
Peggy makes her life easier. But it also puts Tom at ease. And it makes things more fun.
Like the day he was shaving in the bathroom and she heard him shout, "Oh my God, what did I do?"
He appeared in the doorway – with only one eyebrow.
"Can you fix that?" He asked.
"No," she said, unable to stop laughing. "Make a fuss of the other. It's only an eyebrow.
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