Part 1
Some of them look just like the lobby a mid-level hotel clinging to a midwest airport. The tan carpets with giant paisley-like patterns swirl below faux art-deco chandeliers. Concierge desks with a little lamps stolen from libraries that held real books lurk about. The dark wood desks are unattended, presumably to keep with the mid-level hotel motif. These are recovery and long-term health care facilities, where you end up after surgery or a hospital stay.
I am caring for two elderly grandparents who are in a difficult stage. Old people spend a lot of time in and out of these institutions. If it is only for a few days or a week it may indeed seem like a Marriott with nurses. But there is one thing that always gives the precocious ‘hotel’ façade away: the distinctive and pervasive smell of human urine.
In the last eighteens months I have seen the interior of twelve of these facilities. My grandmother has Alzheimer’s and has reached a final threshold. She can no longer walk or even stand. She can barely speak. She will eat, if fed each bite with a spoon. She is almost unrecognizable as the shorthand-writing Irishwoman who raised me cursing in Turkish and quoting Shakespeare.
At this final stage of chronic conditions - right when you need the most care at the most critical moment -insurance companies set patients adrift. My grandparents are now left to pay out of pocket or through Medicare. A bill that is currently $14,000 a month keeps my grandmother comfortable - and one of us feeds her two meals every day. This is financially (and emotionally) sustainable for about a year.
Eleven of the twelve long-term care centers I have toured have haunting similarities. Corridor walls are filled with big (cheap) posters on various artistic themes- nudes (sometimes seriously racy but hey, whatever), one was even mostly Picasso (true story and seemingly cruel) most are carelessly cluttered with factory landscapes. They all have wheelchair after wheelchair after bed after wheelchair filled with semi-conscious old people.
That’s right, they are parked right in the hallways as staff bustle about. Sure, they have big tanks filled with colorful fish, nicely appointed dining rooms (on the tan paisley theme again), mini movie theaters and little frog fountains bubbling away on flowery garden patios . But they have a parade of mentally and physically ill elderly people. All of them as vulnerable and dependant as an infant.
None of the old people in the hallways look happy. They wear a common mask of confusion or plain fear.
Only some of the patients have any family visit at all, let alone participate in care management or everyday activities.
So far I have seen one truly terrible environment. It reeked of vomit, feces and urine among the cramped 2-bed rooms. There was no patio or aquarium. After a hospital stay for dehydration, she was forced there by the insurance company. On a sunny day in winter I wheeled grandma into the warm rays streaming through big windows at the end of a corridor. The only view was the parking lot.
A UPS truck arrived and heaved a pallet wrapped in clear plastic in front of the building about 20 feet away. Big labels declared the boxes inside to be gloves and drugs. A maintenance person (blue shirt/pants with white oval name patch - red thread declares “Mike” - high-tops and generic baseball hat) casually smoked a cigarette (Newport box visible in front pocket) and sorted the boxes. He set a few of the smaller ones carefully aside with a reverence and joy at finding prized narcotics that was comically visible.
We had grandma out the next morning on an out-of-pocket ambulance ride, feeling strangely similar to when I’ve bailed friends out of jail in the middle of the night. 48-hours there left her with dangerous pneumonia resulting in another trip to the hospital...and yet another recovery center.
Now, every day is spent managing the care of these two people through doctors, lawyers, technicians, specialists, billing managers and insurance companies. Their medical care would cost much more if we attempted the process at home. A deep vein of religion means that pragmatic hospice hasn’t been on the table. As a family we feel relegated to watching dwindling finances, visiting and deliberately holding out another spoon of pureed cherry cobbler.
It is an ugly cycle and the system for treating patients like my grandmother is terribly inhumane.
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