My mom figured out she had Multiple Sclerosis when she was 34, two years after she gave birth to me. I say “figured out” because the disease was in it’s early stages of identity in the eighties, so diagnosis was more elusive and took longer.
It was progressive MS, we slowly realized, as her symptoms increased with few remissions. She went from using a cane, to crutches, to a wheelchair, as her body became paralyzed and she lost control over it. When she was 39 and I was 5, she checked into a nursing home in order to receive the around the clock care that she required. There were no other options. My family didn’t have the money for in-home care, especially at the level needed, and the only other route was a hospice facility, which she didn’t qualify for because she wasn’t considered “terminally ill”. The prognosis was ambiguous – her body was deteriorating but her mind and vital organs remained in tact.
What ensued over the following decade before she died at age 51, in that nursing home, was a very intimate relationship between our family and that place. I grew up there, in part, and it’s atmosphere—the smells, sounds, colors and light—are forever lodged in my psyche.
And, guess what? It was the worst. The place, that is. The nurses that cared for my mother were gracious and professional for the most part. The environment on the other hand, was downright depressing.
I doubt this comes as a surprise to anyone reading this. Most people think of nursing homes as stuffy, stale, harshly lit places, with insipid vinyl wallpaper and luke warm food. That is a pretty accurate depiction of the place where 1.4 million Americans call home. Most nursing homes were built in sixties and seventies, after the Hill-Burton Act provided federal grants to fund the industry, and many of them--if not most--have not had any renovation, beyond structural upkeep, ever since. Instead, they retain the same gloom and staleness that made them notoriously loathsome in the seventies (when nursing home abuse became a national scandal). Here’s the rub: it is now a 100 billion dollar industry, with 66% of nursing homes operating for profit. These expired and depressing environments seem to have less to do with lack of funding and more to do simply with lack of interest and incentive in changing them.
Perhaps we are not phased by this broad and detrimental oversight because most of us have only been for a few visits, and we see it as a temporary environment for our elderly relatives. Kind of a long-term hospital. From that perspective, it’s not that bad. But the reality is that this environment is not very temporary (hence the word home). For the majority of residents, who are over 65 and stay until their death, the average length of stay is 3 years. And for the 15% of residents who are below age 65 and suffer from long term terminal illness or disability, like my mother, stay lengths can be as long as 10 or 15 years.
According to the CDC, the number of nursing home residents in America in 2014 was 1.4 million. With much of the baby boomer generation reaching retirement (by 2050, one third of Americans will be 65 or older), this number is growing.
In this renaissance of rethinking and redesigning space to better align it with our functions, needs and wellbeing, how might we come up with innovative ways to improve the not-so-temporary environments of nursing homes, where so many people spend their final years? In addition to considering the design of new facilities, how can we change existing homes to make a broader and more immediate positive impact on the residents?
Circling back to my story… fast forward to 2016, fifteen years after my mother passed away in 2001. I’m an interior designer living in New York City, working for a firm that does mostly hotel design. Most of our projects are not new builds. They are existing hotels--usually motels—built in the mid century that we renovate and redesign. I spend my days thinking about cost effective solutions to make spaces functional, current and relevant and to give guests a personal, comfortable and welcoming experience. Often we phase the renovation to keep occupancy at a maximum during the process and it’s amazing how simple changes to space and experience—from lighting, to branding, to integrated technology—can have a profound impact, on both the guests and the staff.
What if we rebranded the nursing home experience and updated the space to make it a covetable and not loathsome prospect, much like we do in hotel design?
Comfort, peacefulness, self-sufficiency and privacy. These are things we know people want to have in their final stage of life. They are also things that are deeply connected to, if not reliant on, space and environment. The nursing home is an opportunity to implement spatial changes, on small and large scales, and incite these feelings of wellbeing and humanity that we all deserve to have in the end of life.