We now encounter more discourses, both popular and professional, about how to deal with the needs of ageing parents. Daniel Jay Baum's story is about his mother's life in a residence which he calls Glengrove, vaguely defined as an assisted living facility (ALF), a term which now accounts for about 200,000 places in the United States. Baum lived in Canada, 1,000 miles from his mother, but other family members also visited and helped out. He tells the story well, making us keen to see how it will end. The dilemmas involved are universal, but let me provide some contrast by presenting the way ‘ageing in place’ is organised in Sweden.
My mother lived in a small house in the Swedish countryside, her childhood parish, to which she returned after being widowed when aged in her fifties. Like Baum, my six younger sisters and I gradually became distant carers, all of us living several hours car-drive away. Four years ago, following a spell in hospital due to pneumonia, our mother accepted publicly-provided home help and a stove monitor, but refused a med-alert button (with a monthly fee). Gradually the home-help provision expanded, in response to her increasing ‘forgetfulness’. The case manager began to suggest a move to the local residence for older people, but instead we bought an apartment with her own money near my sisters. For nearly a year she managed there, with daily home help and my sisters cooking her evening meal on a rota organised on the web. The arrangement became untenable when my mother's restlessness made her wander and get lost. Administrators again suggested institutional care, although the official Swedish policy is ‘ageing in place’ with community services. Legally this can be demanded but recent appeal court cases show that municipalities no longer have to provide ‘unreasonable’ amounts of community care, i.e. more than three to four hours home help a day. My sisters found a good place. Mother had a pleasant room (shared rooms do not exist in Sweden) and the staff were kind. Most residents were ‘in the land of forgetfulness’ but there were few of the restrictions that characterised Daniel Baum's mother's life at Glengrove.
The charitable Jewish foundation that runs the upscale residence where Baum's mother intended to ‘age in place’ lived up to what its brochure promised, but only so long as a resident's health remained reasonably good. In spite of being a professor of law, Baum had not read the fine print or understood what was entailed, nor had he drawn any conclusions from seeing the ‘sick building’ next door, connected to the ALF by a long corridor. The fear of this unit among the residents is evident in Baum's book, in a way reminiscent of Jaber Gubrium's anthropological analysis in Living and Dying at Murray Manor. When too frail, Glengrove residents were moved on (or evicted if they ran out of funds). The foundation's chairman ran it as a business which meant steep rent rises and heavy charges for extra inputs. Many of the restrictions seemed to derive from fear of lawsuits. These protect the institution, not the resident (alcohol use and sex were banned activities). On the other hand, residents had their weight and blood pressure monitored. This is not a routine in Swedish residences which cherish their ‘social’ character although residents often are very sick and not infrequently malnourished.
Many ‘service houses’ were built in Sweden during the 1970s, similar to ALFs and popular for some time. Yet, it was impossible to ‘age in place’ in them, as they were understaffed like the ALFs. This often meant later moves to the feared nursing-home. In the early 1990s all institutional care in Sweden was merged into one uniform type (äldreboende), and residents are no longer moved, avoiding Baum's main objection to the ALFs. But residents have also changed; today they are much less healthy than those who moved to the ‘service houses’ in the 1970s. Hence ageing in place in institutional care means living and dying surrounded by mentally and physically frail persons. Most older people and their families therefore shun these places for as long as possible. This has led to ALFs catering for the well-to-do and, in the Nordic countries, private ‘senior residences’ are enjoying remarkable growth. These are retirement communities, often owner-occupied or cooperatives, sold primarily to the middle classes. They usually provide few or no services (residents are entitled to public services), apply a minimum age of 55 years and sometimes, in a futile attempt to avoid very high levels of dependency, a maximum age on entry of 75 years.
Baum's wish is that having read his book people will make wiser, or at least better informed, decisions than he and his mother did; in short, be better consumers. He wants to live and die at home, something he had not managed for his mother. One way to ensure this is through a ‘naturally occurring retirement community’ (NORC). He ends his book with a description of his own NORC and how this relatively exclusive vertical neighbourhood in Toronto works. Similar arrangements can be had, he argues, in any type of neighbourhood. Real-world examples of organised NORCs are still rare. They could be an alternative for many, although they seem to depend on affluence, rent-control, government funding and also on community services being available. This feature is largely absent from Baum's vision of ageing with dignity, maybe reflecting the situation where he lives.
The book is a good read. The justifiable bitterness that occasionally breaks through is balanced by a fair measure of (dry Jewish) humour. The text is full of well-chosen references to media reports, the gerontology literature and statistics on the ALFs and nursing home industry and the not always successful regulatory laws. It is, therefore, appropriate not only for any adult son or daughter in Baum's predicament but also for teaching gerontology and for field workers in the old-age care industry.
