CHAPTER 1
Who We Are
My family history is a mix of immigrants.
Our roots run as far back as the first American settlers, on my French-English side, to the turn of the 20th century, on my Irish-Italian-German-Jewish side. Yet, as far apart and dissimilar as our sides might seem, there's one thing that that ties us together: the bond to family.
I was taught, by all sides, that you should give more than you get, and while this started with family, it expanded outward to include neighbors, and then, country. Some might see this as an obligation, one that is heavy and often hard to bear, but I don't. I believe that one of the greatest gifts my ancestors gave me was a passion to put family first. Growing up, I heard stories about what this meant to the earlier generations, and sometimes, I saw it clearly, myself.
In Canton, Ohio. Sunday dinners were hosted by my paternal Italian grandmother.
Regardless of the economics of the time, her table was always full of food and people. All were welcome, and all showed up: cousins, friends, borders from the past, as well as the present. I heard that none of that changed much, when, even in midst of the Depression, my great-grandparents, Antonio and Assunta DeCosmo, shared all they had with their neighbors, so no one would suffer.
In southern West Virginia, close to the New River, my maternal grandparents lived on top of Hix Mountain and had their own orchards and gardens. "Extreme hospitality" sounds like it could be the name of a reality TV show, but it was actually my grandparents, John and Gerline Lilly's manner of living. Their table was always full of wonderful food, and their door was always open to anyone passing through. Just as in my Italian grandmother's home, here too, it was a high offense not to eat what was given. The only difference? Grandma Della (Assunta's daughter) offered pizza as an appetizer, dandelion greens salad, sautéed green, red and yellow peppers and sausage, spaghetti, and sliced oranges with olive oil and pepper. Compared to Grandma Lilly's offering of meatloaf, fresh green beans, white beans with corn bread, loaded with butter, made in a cast iron skillet, and pies of every possible variety.
Though food was a large part of what it meant to care for someone, or show your love, it didn't stop there. You could always count on having more attention being lavished on you as guest in either of their homes than at a 5-Star resort hotel. Should you find yourself sick, you'd receive better treatment than if you were in the intensive care unit at a major hospital. And though I was grateful to be nursed back, not just to full health, but to perfect health, part of me always feared what seemed to be the very real possibility of smothering to death under the weight of heavy wool blankets, or drowning to death by a third, necessary, cup of tea.
Growing up I thought this was all quite normal, and understood that loving each other meant supporting each other ... in whatever way was needed.
So when I started my business 18 years ago and my daughter, Adellina, was ill, I didn't hesitate to ask my mother to move to Columbus to help. It was ideal, as it would provide a house for them to live in for as long as they desired. The kids would grow, and need less and less help, which was a perfect plan, because as my parents aged, they'd probably be able to help less. Not only would they not have to worry about what they could, or could not, afford to move into after my father retired, the house had room for family to visit comfortably.
She accepted our offer, and two years later, after my father retired, he followed; during those two years he drove the two hours down from Canton every weekend to be with my mother. It was the ideal exchange, as she could help with my kids, and have room for the rest of the grandkids around when they'd come from all around: Kentucky, Las Vegas, and other parts of Ohio. There were summers when my mother would pack up the kids and drive them down to West Virginia to see her parents, my kids' great-grandparents, while other summers saw her heading out with them to Las Vegas to visit my sister who lived there.
But as innovative an idea as this may sound, it really wasn't. When my father's parents could no longer function at home by themselves, they'd rotate among their four kids' homes. My grandparents enjoyed living this way right up until their last two years of life, when, at 98 and nearly 100 years old, they moved into an "Assisted Living" home. But for them, and their families, "assisted living" was really what they had been doing all those years.
Seeing everyone in the family always pitching in to help each other out, seeing multiple generations together, this was all normal for me, and so in the back of my mind I always had a Master Plan, and with my parents living in a house nearby, Phase One was officially up and running.
In 2004, my grandfather John Lilly, a former West Virginia coal miner, got black lung disease. The decision was made to sell the farm on the mountaintop, the one with the beautiful orchards and gardens, and move in with my parents in Columbus. Every morning, my children would go to my parents' house and would have breakfast with their grandparents and great grandparents. Is that normal? For my kids it was. And when my grandfather passed after 3 months, my grandmother continued to live with my parents.
The years went by and things went on this way, trouble-free. But as with every good story, this plot had a twist, and it can be described in one word: Grandma. First she turned 91, then 92. She was living with my mother and father (see the pattern?) and one day it suddenly dawned on me, Grandma could live to 99, or 100, just like my other grandparents! And what on earth would happen if she did? And moreover ... what on earth would we do if she did?
Maybe you're wondering what kind of monster I am to be so callous? But the exact opposite is true; I adore my grandmother. Growing up, some of my best memories are of us traveling to visit her in West Virginia. Once there, she always made the best food, always let us explore and be independent adventurers in a beautiful land — of course "independent" meant gourmet lunches packed for us all. She loved us and she showed it, and I was beginning to realize that soon it would be my turn to do the same for her. How soon was soon? That, I didn't know yet.
I was raised in a family with faith; it was a family where longevity was the norm and a sense of humor was a necessary part of survival. When our Great Aunts, Uncles, Grandparents died, there was sadness, but also lots of great stories, and always an appreciation that they lived, not just a long life, but it was a quality life. Translation: they weren't wasting away by themselves in the "home." With Grandma, while I didn't want her to take that ride on the "celestial elevator," I knew that when she did, she would not be sad. She had lived and loved well. She had faith, and she desired to be with my grandfather again. But she was still going strong into her 90s and that created our plot twist.
Phase Two of my Master Plan had always been the following: when my parents' home became too much of a burden, sell it and move them in with us. Lately, it seemed like we were getting very close to rolling out Phase Two. I'd already started noticing my parents and grandmother, struggling to handle their 4 bedroom, 3 bath home. Struggling with its full front and back yards, struggling with its mother-in-law suite. And while they loved the house, and their neighbors, eventually, the struggles became too great.
Phase Two was viable because of my life's work. I'd been Director of Interior Design at a leading and award winning, Senior Living company in the United States. Now I owned my own award winning interior design firm, and one of our areas of specialization was Senior Living. Additionally, I wrote and spoke on the subject of Dementia and Alzheimer's design.
However, Phase Two had a specific snag: our house was a four-story box. A French Manor house that was on the National Historic Register, which we loved and that worked beautifully for the four of us. But for it to work for all 3 generations would require an elevator. I had even researched putting one in for my parents. Unfortunately, even with an elevator, it would not be feasible to have all 4-Generations living under this home's mansard roof.
There was another solution, a little more complicated, perhaps, but a solution nonetheless. And so I started looking for another house, one that would serve all of our many and diverse needs. It had to have enough room for four generations and enough space for my son and daughter to spend their high school years, with as many friends over as needed and with all of them feeling welcome and loved. This was saying a lot since both Jacob and Adellina were on soccer teams, and Jacob was in the drum line, and Adellina in the choir, and they both were leaders in Young Life. The house needing to accommodate 20-40 kids in the home at any given time was a real possibility.
The hunt was on, and one night I saw the perfect house. It wasn't far from where we were living, so the kids would have a smooth transition, and the yard was like a national park. Though there had already been several additions to the house, there was no mother-inlaw suite, and so a renovation would be required. That was fine, we'd be able to handle that. Things moved fast: we bought the house, put ours up for sale, and later put my parents'/grandmothers' house on the market, too.
Things were going along snag-free, and for a while, I was actually starting to breathe. No, not easier — after months of feeling like I was holding my breath, I felt like I was finally just breathing again. And then I started noticing something--Grandma, was starting to experience some dementia. From my work, and the speaking I'd been doing on the subject, I knew she would get worse, never better, and from knowing Grandma, I also knew she would never move from our house into any kind of Senior Care facility, willingly. And so I decided this would be my opportunity to not only honor her- her fierce privacy, her great beauty, her love of family, but to also practice what I preach: create a memory care environment that I would be pleased to have my family live in. Saying it that way doesn't grasp the large and loving sense of responsibility I felt about creating this design. An anonymous old person wasn't going to be living there, my amazing grandma would be! Although I took it to heart to do my best for others, this was deeply personal.
I got right to work on the renovation using designs for memory challenged seniors that had been tested, and proved effective, in facilities my firm had designed. I also incorporated some design concepts that were new and untested, which I thought would be great. Every detail was considered, in a commercial code way, and in a common sense, affordable way, too. At their core, all the design ideas were done to help my grandmother (and parents) live life independently and with dignity for as long as possible. I was so excited to do this for her, my husband worked tirelessly to transform the house to meet their needs.
Perhaps you know the expression that no one is a prophet in their own hometown (or something to that effect?) Well, that was true here, and you can include "or their own family," too. In my field of senior living, I'm considered an "expert." Plus, I've been practicing interior design for over 25 years (with my primary focus of senior living design for 20.) Yet, it became clear that there was no prophet to be found anywhere near, or around, South Parkview Avenue, in Columbus, OH.
The issue came into focus early on. In these intertwined lives of my life, my Parents and some of my siblings believed I was designing Hive the spaces incorrectly, which (to them) meant that living in the house could, or even would, cause harm to my grandmother, or my parents. My challenge was clear: I somehow needed to shift expectations from, "Let's dumb down spaces for the good of our home's senior population," to a more elevated expectation of, "The more active they are, the better they will be, both mentally and physically." The design phase was easy compared to the shifting belief phase that followed it.
As anyone who has any type of arthritis knows, with arthritis moving can be a challenge and when stationary for too long, it's even worse. Like getting a long train moving down the tracks, the wheels grind and require maximum effort to get moving, but once they do, once the rust is all knocked off, and the wheels actually start moving, they turn pretty smoothly, and with very little effort.
Today, with our mobility scooters, lift chairs, and walkers, many people have adapted the mindset that when physical difficulties come a callin', you let off the gas, settle for less, and watch yourself continually decline.
Not in this house.
Sorry Mom, sorry Dad, sorry Grandma, but that way of thinking goes completely against what I was taught at my first senior living design job at Karrington Assisted Living (now Sunrise) where I was Director of Interior Design. Here's what you could expect at Karrington: if you rolled in in a wheelchair, we'd have you in a walker in two weeks; if you ambulated in using a walker, a cane was waiting for you in two weeks, and if you hobbled in using a cane, two weeks later we'd be sure the handrail was your new best friend/ support system. Karrington understood that muscles decline, and two weeks was the magic number it took to build them back up again. More than that, though, they also understood they'd not only be building up the body, but the mind and spirit, also. I saw this happen time and time again. And so we encouraged residents to use the stairs. Yes, you read that right, and we told them it wasn't how fast they did them, but simply that they did them. When there were challenges around mobility, our therapists got folks up and about and eventually moving to the stairs. When medicine is regulated, and bifocals are properly adjusted, stairs can be the best form of exercise a senior can utilize.
So why am I telling you all this? My design for our home was focused on getting that long train back running on two sets of tracks. One set pointed in the direction of my grandma's Bedroom Suite, and the other set went up the stairs to my Parents' 2nd floor suite. And in 2014, with all of these controversial renovations completed, our family moved in together. The move was most difficult for my grandmother, as would be expected, when change takes place for someone with Alzheimer's/Dementia. Yet, with all the snags and plot twists, we did it!
And so we embarked on what I call our "4-Gen Social Experiment," which was such a more fun and hip way to think of it as opposed to calling it, "Living with my Parents, Grandma, Husband, two Kids, and a dog." We were all here, living with the many, many tangible "design items" I'd thought about when drawing up our plans. I knew the home needed to be inter-generational, and knew that its outside needed to draw us into its beauty. I understood the home would need to have spaces where everyone could have privacy, could escape, and would never feel as though they were a burden. Finally, though, I realized what would be the most important ingredient of all — and it was an intangible one: appreciation. Appreciation that the environment would not be perfect, no matter how hard we tried and no matter how many details were considered. Appreciation of the fact that this would be hard on everyone and that flexibility would be required. Appreciation in understanding that as life changes the environment would also have to. And finally appreciation in knowing that, at whatever age, we would all be getting the gift of "doing life." Whether we were 16, 19, 46, 47, 72, 74 or 92, we were all getting to do this social experiment together, we were all figuring out what works and doesn't together, and hopefully, we were all, along the way, having a richer and fuller life experience, together.
It's said that the quality of one's life is more important than the longevity of one's life; my company's mission is to improve quality of life by design. My family has always lived full, rich lives, adding value to each other's lives as we've loved one another, and followed our dreams.
And so we move forward ... four generations under one roof, in Columbus, Ohio, where "my little social experiment," is really the physical fulfillment of the bond that ties us together, and where I'm just carrying on the long tradition of giving back to my family. And it's all normal to me.
