Her mother was not allowed anything: not for a walk outside, not in the hallway, especially no contact with other residents. “My mother was not sick of corona and wanted to go outside. Because she was demented, she kept forgetting why she was not allowed to leave her room. She thought she had done something wrong, that is why she was isolated. The longer it took, the faster I saw her back down.”
Monique still has a hard time thinking about her mother’s death. “It hurts so much, it could have been different,” she tells RTL Nieuws.
Positive test
Her mother was an active, sociable woman, even when she came to the nursing home in June last year. She helped with cleaning, preparing food, setting the table. Every day she walked with Monique or her son outside for an hour.
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Until Monique tested positive in February. It turned out she had corona. Because she had visited her mother that week, she was also tested. She turned out to be positive, as did seven fellow residents in the nursing home.
In quarantine
The nursing home took measures: everyone had to be quarantined until there was a negative test. “In the nursing home they not only looked at whether the test was positive or negative, they also looked at the CT values. They were not good on my mother every time.”
Monique came to visit her mother again after ten days of quarantine, but she had to stay longer in her room, her values were not yet good.
Still locked up
After three weeks, she was still locked up, and her values were still not good. Monique didn’t understand it and wanted to explain the policy and discuss the options, but the manager of the care institution only called back after a week.
“We are working on a settlement,” they said. But it was now four weeks later and nothing had been arranged. After 4.5 weeks, Monique’s mother was suddenly allowed to leave her room. “Her values were the same, I don’t know why it was allowed now.”
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By now her mother was very confused. “She kept running away, throwing things. That’s why she ended up in the crisis shelter. That’s where things went completely wrong. They tried to calm her down with medication, but that had no effect.”
‘No quality of life’
“Because of the many medication, she fell constantly. When she had fallen heavily on her head again, they wanted a scan at the hospital. I refused, what was the point? That weekend she got pneumonia. It got worse so much.” quickly that we made the difficult choice together with the practitioner to let her go. My mother no longer had any perspective.”
There was nothing left of the decent woman she was. At her funeral, I said she didn’t slide down the slide, but jump off a ten-foot diving board. That’s how fast it went. I have a lot of respect for the hardworking employees of the nursing home, but I really don’t understand the policy at all.”
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Door locked, medication through the porridge
Monique’s mother is not the only one to be isolated for a long time. More people with dementia are restricted in their freedom or experience involuntary care without looking for alternatives. “It is very alive and is much more common than we thought,” says Julie Meerveld, manager of advocacy and national aid at Alzheimer Nederland.
It is difficult to say exactly how often it occurs, according to Meerveld, but the interest group regularly hears stories of involuntary care. Locking the door, stirring medication into the porridge without anyone knowing, placing a wheelchair tray or bed rail so someone cannot get up, taking someone in the shower while resisting: these are well-known examples. And they don’t just happen alone. in the nursing home, but also in the home situation, which is less well known, where people with dementia are often restricted in their freedom.
Care and Coercion Act
Precisely to counter this, the Care and Coercion Act adopted on January 1, 2020. The aim of this law is to ensure that people with dementia are restricted as little as possible in their freedom.
“An important law, because restriction of freedom, or ‘involuntary care’, is still common among people with dementia. If the law is not applied, it is often said that this is due to corona, because of safety, people with dementia are in their care. locked up in the room.”
This is not allowed by law. Healthcare professionals must follow a step-by-step plan; they must first look for alternative solutions together with family. Locking up is only allowed if there really is no other option.
Resistance
But there is a lot of resistance to the law, which would mainly create more bureaucracy. Because if there is no alternative to incarceration, the step-by-step plan states that healthcare professionals must evaluate after a certain period whether incarceration is still necessary.
More consultation, therefore, between healthcare professionals, doctors, behavioral experts and the family. Meerveld: “And that costs money. But we think that law is very important. It contributes to better legal protection for people with dementia. It is therefore important that the law is properly applied, also – or even especially – in times of corona. “
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