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'I would've retired years ago but I forgot where I work.'

My mother: Oh, there are some people in this place you wouldn’t believe. They don’t even know where they are

Me: Well, in Alabama, they could’t be there at all. If your memory slips too bad, you are considered too sick for assisted living and have to be moved out.

My mother: Well that makes sense.

Me: No, back to independent living. It is illegal to provide assisted living those with memory problems in Alabama

My mom and dad moved from Louisiana to Marietta Georgia after The Storm (on the Gulf Coast we now date everything by August 29, 2005. That’s the day Katrina made landfall in Louisiana). They were in Baton Rouge and were in their late 70s when the storm hit. They had their own home and could drive without too much effort to get necessary items and run routine errands. They had lived in their house for 53 years and were comfortable.

Post Katrina, their lives changed substantially. Baton Rouge almost doubled in size from the influx of New Orleans refugees. What was a simple chore (driving to the store) became a nightmare of left turns into rapidly moving oncoming traffic unimpeded by traffic lights. They were older people living in a first ring suburb in the sunbelt south. If you were older with failing reflexes you had to make the best of it. Without a car there was no food, no doctor, no post office.

They moved into an independent living community for older individuals in Marietta (by my sister). It is like what my kids used to call a college “wonder dorm,” only for older folk. Separate apartments, common areas for dining and socializing. Difference is that in college the turnover is dictated by the ebb and flow of college life. At the facility my folks are in, folks tend to stay. They stay, that is, until they lose their independence or they pass away. On my weekly phone calls I hear tales of which person is losing touch with reality. “Mr Soandso is grabbing everyone.” I’ll hear one week then two weeks later “Remember Mr Soandso, well they had to take him away.” Ambulances are a regular occurrence with the inevitable return of the resident just a little less functional than before he or she left. If only a little confused when they leave, they are a lot confused when they return. Soon, they are removed to another facility. My folks can’t help but wonder when the inevitable will catch up with them as well as they notice their memory slipping with age.

Why have we not come up with a better way? As I told my parents, in Alabama it is even worse because, with any type of dementia, regular assisted living is out. Alabamians have to move into a “specialty care assisted living.” There are only about 300 of those in the state with a total of 3000 beds. To quote a recent article:

The quality of care can vary significantly from one facility to another. The best assisted living facilities provide comfortable and healthy homes for patients in early and moderate stages of physical and mental decline. But inspection reports reveal that many fail to adequately staff facilities and train workers caring for patients – leading to falls, errors, abuse and even death.

In Alabama, we have 89,000 people living with dementia. With only 3000 beds, what happens to the rest of these folks? Some are admitted to the nursing home, losing their independence prematurely. In fact, the Alabama Medicaid crisis is precipitated in part by the $808 million spent annually on dementia care (about 20% of the budget). Most are cared for at home by a “volunteer” caregiver. In Alabama it is projected that 302,000 caregivers provide care for these folks. This is $4 billion of unpaid care with a huge toll on the caregiver’s health.

The baby boomers changed our society. We embraced the car. We became much more mobile. Little remained untouched. Boomers are now hitting their seventies. Inevitably they will lose their independence. Inevitably, many will lose their cognitive functions. Will they (and their caregiver children) demand better care for those who are aging out? For my sake I hope so.

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