Of course, if you live in North America and the United Kingdom you simply can’t ignore how COVID-19 ripped through “long term care” or “nursing homes” drop-off depots for the immobile and those suffering from some form of dementia. Is this our fate and it could well be since Alzheimer’s Disease (AD) is the third largest killer in the United States where $84 billion in research money hasn’t really turned out much of importance.
So why the high COVID death count? Reduced governmental inspections, privatization, overcrowding, low wages that cause workers to work in multiple homes, lack of compassion or under resourcing? Perhaps some or all of these. In the 1970’s I worked part time in a nursing home in Montreal. While it was initially a tremendous shock seeing all these abandoned, demented or wheelchair bound residents. If you took time to get to know them well that made these pour souls and shocked young man feel better. Generally speaking, they were well taken care of. A different era? But it is hard to ignore that faint smell of urine, the fleet of wheelchairs and the many vacant looks. I don’t even think AD was even recognized in those days.
Not only that experience but seeing a parent with dementia made “It is Not Over Yet” a must see. It is about a Danish nursing home founded by nurse May Bjerre Elby and is named Dagmarsminde based on her personal experience, like me, at 17 working in a nursing home that smelt of urine, was all gray, full of unhappy staff and neglected patients that inspired her to enter nursing as a profession. Then her father entered the same nursing home with staff making no attempt to get to know him and leaving him his food when he had forgotten how to feed himself. Eventually it is her view he died of neglect. So she saved for 7 years and opened a small nursing home in the countryside. Not for the rich as most are seniors relying on Norwegian state pensions.
While the documentary is sad seeing these once active and intelligent elders decline and die every attempt is made to treat them with the utmost respect, dignity, compassion and love unlike most nursing homes. Drugs are kept to a bare minimum. As Elby states we like to give them lots of cake. Well actually it is not the cake and sparkling wine that is served at birthdays and anniversaries that is the medicine it is the fact they are given to celebrate. The residents are not forgotten. Regular staff meetings are held to evaluate each resident. Even when the caskets are rolled out there is a celebration of the deceased’s life with a toast. Meals are taken in a communal fashion where the setting is more like a welcoming inn than an institution. Chickens roam outside during the day and the home has its dog and cat.
Even death is treated in a respectful manner as the staff usually know when “the process” has started. They back off and if the resident does not want to eat or drink they are left to die in dignity and not harassed to eat, drink or participate in activities. Obviously many industrialized countries with nursing homes have much to learn from Elby.
I give the last words to director Louise Detlefsen,” When we first met, May told me that being happy in the moment means a life of happiness, since a life with dementia is ultimately living now. The past is disappearing, so it is all about living for the moment. What happened yesterday is not important, what was said hours ago is already gone. What is going on between us as humans at this very moment is essential. This perception of reality hit me emotionally. It was so simple, but at the same time mind-blowing. Being present in the moment is difficult for me, like for most modern people, I imagine. And coming to this realization, I learned a lot about life by spending time with the residents with their dementia. It has been a strong, emotional experience creating this documentary film about Dagmarsminde and to be reminded about the power of human contact and the joy of living here and now. This was my personal starting point and these simple thoughts have been my guideline throughout my filmmaking process.” Mindfulness as applied to dementia!
This 94-minute film is in Danish with English subtitles. It is directed by Louise Detlefsen. You can purchase tickets here https://hotdocs.ca/p/hot-docs-festival
The film is part of Toronto Hot Docs and can be seen between 29April-9May.Only available to those in Canada or as they say it is “geo-blocked”.