As a public inquiry into the deaths that occurred in CHSLDs during the COVID-19 pandemic begins, an 80-year-old lady with Alzheimer's has just been transferred to a room comparable to “the hole” in prison, denounce her relatives. Micheline Baril has lived at the CHSLD Saint-Lambert-sur-le Golf, located in Montérégie, for five years. “You parked me there,” she still sometimes reproaches her husband. She often had the idea of jumping down the second floor and sometimes tore off the mosquito net. “If you jump, you will get hurt and stay in a wheelchair all your life,” warned her husband, Paul Ménard, who could no longer take care of her at home. Since March, Micheline's life has taken another turn. Tested positive for COVID-19, she was put in isolation in wing D of her CHSLD. The establishment Made the headlines this spring for its lack of staff and the sharply increasing number of COVID-19 cases. In June, Ms. Baril was placed in an empty room with no access to water (except for the water on her tray at mealtimes) and without toilet paper. “They moved it without talking to my dad. She had no spare clothes or bathroom accessories, such as a comb or a hairbrush,” her daughter Sylvie is outraged.
“My mom was treated like an animal. With no phone or television, she cried and was slowly dying.”
-Sylvie Menard
However, her spouse's visits were maintained. The rules in times of pandemic are rigid. Wearing a mask, visor, and hospital gown are mandatory, and it is forbidden to bring anything in from outside. Mr. Ménard therefore secretly concealed in his underwear a case containing a tube of toothpaste and a toothbrush intended for his spouse. “My mom has been in her room since March. Nobody takes it outside to feel the wind or the sun. It's as if she were in prison,” laments her daughter Sylvie Ménard.
War measures
For people suffering from Alzheimer's, the conditions in CHSLDs have been particularly painful, deplores the Quebec Federation of Alzheimer Societies. Overnight, visits from caregivers and family members were interrupted. “This created a lot of anxiety because these patients no longer recognized the faces of those who entered the room. This disturbed them, and they therefore withdrew into themselves,” assesses the executive director of the Federation of Alzheimer Societies, Sylvie Grenier. The anxiety generated by this situation caused some to stop eating.
“We've heard all sorts of horror stories,” adds Ms. Grenier, who doesn't want to blame anyone, however. Some patients wanted to run away. As a result, many received higher doses of medication.
“We increased medication so that people in CHSLDs could stay calm. Many slept more. It was the only way, says Ms. Grenier. Because to avoid medication, you have to animate them, organize activities, take care of them, get them out, make them walk...”
In the absence of family and caregivers, all of this was impossible. In CHSLDs, patients were transferred to a red or yellow zone. Relatives often did not know where their mom or dad had been moved. Ms. Grenier spoke with several directors of CHSLD. Some have told him that they are not proud of themselves. “These were war measures,” she said, “in the face of a pandemic that no one had anticipated.”
In regression mode
This confinement, which lasted about a month and a half, caused sequelae among residents of CHSLDs in Quebec, 80% of whom suffer from cognitive disorders. This long isolation, believes Ms. Grenier, has encouraged the progression of Alzheimer's disease and the increase in the state of confusion in many of them. This is what happened for Micheline Baril, according to her family and friends. After her stay “in the hole”, the lady was more confused when she returned to her room, her spouse noted. Dr. Judes Poirier, researcher, professor and director at the Douglas Research Center, agrees and explains that stimulation is vital for patients with this incurable disease.
“We underestimate the importance of interacting with people. If you don't make an effort to get active and move, the disease will progress more quickly,” he observes. In times of pandemic, walks in the corridors were forbidden to residents of CHSLDs and centers for seniors. “For their own good, they were deprived of socialization, physical activities and memory stimulation. It was the worst thing to do. It's like a deflated balloon. Once the air has escaped, you can't put it back in. It is irretrievable. That is the problem.”
Online courses
Overnight, at the peak of COVID-19, members of the Red Cross and the Canadian Army intervened with people with Alzheimer's. Some had never been in contact with an elderly person. “When you work with them, you have to know how to understand and interpret their behavior. That's why we offer a dozen video courses”, mentions Sylvie Grenier. The aim is to equip anyone working in a public or private accommodation environment who must support a person suffering from a neurocognitive disorder such as Alzheimer's disease. For the families of those affected, these videos represent a gold mine of information. In particular, it dissects causes, symptoms, risk factors, and stimulation strategies.
Fear and candor
As for Paul Ménard, Ms. Baril's spouse, he did not want to make waves about his situation, for fear of reprisals. “I talked to the director and the social worker at the center and gave them a chance to get out of it. I don't want to blaster them,” said Mr. Ménard, a former manager in charge of maintaining power plants at Hydro-Québec.In the meantime, La Converse contacted Judith Lecours, the director of nursing care at CHLSD Saint-Lambert-sur-le Golf. We asked him if it was normal for a patient to be in a red zone without toiletries or a change of clothes.
“There may be failures when you rush to transfer a patient who has tested positive for COVID-19. We should not dramatize,” said Ms. Lecours, who stressed that the situation was improving. “I have nothing to hide,” she adds. We are following ministerial guidelines. Caregivers and visitors are still limited to one person at a time. You need to have strict rules in order not to go backwards in terms of the number of cases.”
Tidal wave
Finally, Dr. Poirier recalls that Quebec should expect an explosion in the number of Alzheimer's cases. “At an advanced or severe stage of the disease, Alzheimer's patients don't listen. They're going to ignore the staff and go from room to room. In some places, units are isolated using electronic doors.” “In addition, medication has little effect,” he adds. The only way to slow the progression of the disease is cognitive stimulation, including social interaction, which maintains brain activity. According to Dr. Poirier, governments have understood that in the event of a second wave of COVID-19, these vulnerable people will have to be taken care of first. “The authorities know that restricting family access is not the best idea in the world. Visitors will have to continue to wear masks and visors, but that's still 10 times better than not seeing anyone.” Dr. Poirier recently took part in a video conference with experts from Italy, Denmark, Sweden and England. “Everyone made the same observation: we forgot the old people in the CHSLDs to focus on hospitals. They escaped them the same way we did.
Only Germany was spared a bit more.”
The reason? “The Germans have put in place strict protocols in order to avoid the risk of viruses spreading. A doctor working in a CHSLD cannot end up in a clinic where there are young children struggling with measles, for example. That is not the case here in Quebec.” In the event of a second wave, the authorities know how to manage the crisis and, above all, how to control it.
“We now know the consequences for this vulnerable population that are people with Alzheimer's. We are all more sensitive to their fate, and I want the second wave to be smaller,” concludes the researcher.