My dad was diagnosed with Stage III lung cancer at the age of 74. He lived for about 18 months following his diagnosis and passed away in February 2012. During this time, my siblings and I became his caregivers. It was both the most stressful and most rewarding work I’ve ever done – it varied sometimes hour by hour which was which!

There came a day when his care needs exceeded what we felt capable of and we asked him to move into assisted living. He was reluctant, but he recognized that he might not be as safe as we all wanted him to be at home so he agreed to give it a try. We fairly quickly got him moved into a building that I was familiar with – in particular, I liked the staff there and thought that they would take good care of him.

I was so hopeful that this would be a good fit for all of us, but it turned out to be a bit of a disaster. Three months later, when my brother and sister went to pick him up to bring him home for Thanksgiving dinner, he was nearly all packed up and announced that he would NOT be going back. When I took him to his next round of treatments and appointments, he told everybody that he had “gone over the wall” and compared it to a prison escape.

He chafed at the requirement that he sign in and out every time he came and went from the building. He could not take his PRN pain meds on his own schedule because the nurses insisted that they were the only ones that could dispense those to him. His eating schedule became dependent on the medication administration schedule and he lost weight when he couldn’t eat when or how he wanted to. While he had a kitchenette in his apartment, staff preferred to do medication administration in the dining room so he went down there despite his preference to eat in his own apartment. His one great interest at the time was conducting online genealogical research and the facility never completed the promised wiring repair so that he could do that in his apartment. When he tried to use the communal machines, he was subject to time restrictions.

I’ve been thinking a lot about this experience lately after reading the story about the 92 year old woman who shot her son because he wanted to move her into assisted living. It actually wasn’t super-clear to me whether or not he had intended to move her into assisted living, or into a skilled nursing facility because those terms were used interchangeably in the coverage of the situation . This is not the first time that I’ve seen those terms used that way.

I’ve seen some gnashing-of-teeth industry articles about the AL “image problem” and calls for more consumer education about how assisted living is really different from nursing facilities, but I’m not sold that this is just an “image problem” or that the solution really is just to better educate consumers. I believe that there may be some real challenges to the AL industry to differentiate itself from nursing facilities.  Some of this may be self-imposed; some may be driven by state regulations. I’m not even sure that there is real consensus about what the term “assisted living” connotes.

At the time of my father’s illness, I was not educated enough to recognize that there are two different types of assisted living in my state. Both call themselves assisted living, but some of them tout that they can ensure better quality because they are licensed by the State Dept of Health. They were in fact, licensed as residential care facilities (RCFs) under the same statute and rules as comprehensive care facilities (aka nursing facilities). My father was in an RCF that marketed itself as assisted living, but in our experience, the assisted living apple did not fall too far from the nursing facility tree.

I can see how this could be characterized as a one-off – perhaps he was just an individual who was not a good fit for assisted living. Just one person, one family’s experience cannot characterize a whole industry. But my experience did not end there. In 2014, I became the Director of the Division of Aging in Indiana. Just as I began what was to become an incredibly steep learning curve in my new job, I learned of the new CMS Final Rule on Home and Community Based Settings, i.e. the Settings Rule. As we worked over the years to come to understand the rule and its implication for Indiana, I had the opportunity to visit several assisted living facilities in Indiana, licensed and unlicensed, and learn more about the experiences of individuals living in these communities. I found my Dad’s experience was not so unusual. The unusual part was that he had the option of going over the wall and back home with family again. So many people find themselves without options.

I have met a lot of AL staff, administrators and owners during these last several years. Most of them care about their residents and about providing a quality service. AL, congregate residential options in general, are a vital piece of the long-term care spectrum. I knew the community my Dad moved into. I knew it was a quality facility and the staff really cared about the residents. I knew the building was well maintained. Dad got the care we were paying for and I felt better because he was safe, and people were looking out for him.  But Dad wanted more. He was a capable adult who wanted to control his own life and his own schedule and who doesn’t want that? Why should any disability or impairment including those that come with age take that dignity from people?

The people caring for my Dad did not take away his autonomy intentionally. Neither did I. We were just not focused on helping him hold on to it. The Settings Rule is an opportunity for states and providers to do just that. As I worked on Settings Rule compliance in Indiana and as I work with states and providers now as part of Sage Squirrel, I will be remembering Dad going over the wall.