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  • Sophia Casale

One Mad Mom, Carrie Leljedal, Attends the Center for Innovation Conference in July

Two of the biggest leaders in the culture change movement partnered to host four days filled with camaraderie, excitement, and bright ideas. Together the Pioneer Network and the Green House Project created a parent organization called the Center for Innovation (CFI), which from July 23rd through July 26th brought hundreds of like-minded individuals to Pittsburgh for their first-ever conference.

Appropriately, our very own Carrie Leljedal was there to take it all in. As a Family Advocate and Transformation Tuesday Co-Chair, Carrie has had extensive experience with traditional long-term care settings, and she recounts just how impressed she was with the way the Center for Innovation lived up to its name. This interview weaves together Carrie’s personal life and the lessons she learned from this year’s conference. Read below for the full interview which has been edited for clarity.

To start off, was CFI the first conference that you attended?

Well, this is the only long-term care conference that I've ever been to. Okay, the only other conference of any kind that I've attended over the years, that was more than a three-hour or something, was a medical conference for what my son has because it's so rare.

I see, so this must have been an exciting experience for you. Why did you decide CFI should be your first long-term care conference?

I have done work with them both [Greenhouse Project and the Pioneer Network] through the pandemic so I get their newsletters and all these different things. I just knew if there was any one conference that I needed to go to for multiple reasons, this would be it. A big part of my decision was also the connections. I knew what Pioneer Network was and I believe wholeheartedly everything should be resident-centered, resident and directed care. Anybody that's going to do anything to help facilitate means that I am right there with them.

Glad you are! So, tell me more about the conference. What was it like?

It was the most incredible experience that I've ever had. First of all, part of it was because I am the unicorn because of my son. I am truly the unicorn in the long-term care facility he lives in because it is such a great facility, and a Medicaid facility is also a unicorn. Some of it was just getting to meet people that I've been working on and off with over the last couple of years online too.

Besides that, it was seeing 500+ people all having the same amount of passion for fixing this screwed up system as I do. My goal was to create one law which was to get an essential caregiver bill passed at the federal level and I have a state law passed now. We actually passed the state law here [in Illinois], got it signed by our governor, and it went into effect in June.

Congratulations by the way! Would you say many of the attendees have a similar mindset to yours?

Thank you, we still need a federal law. Some of these people [at the conference] I had met while we were working on that [bill] and other things, and really my original goal was to do that. That's all I thought I needed to do to help long-term care. Well, the longer I've been doing this now, the more I realized it's not just that. I truly did not know how broken the system was until COVID and how much reform and change we need. Whether it is the true Greenhouse model or just some other kind of smaller home facility, it is absolutely these residence homes no matter where they are. We have to get away from 50 and 100 beds all connected in a hallway because that's how we had so many people die from COVID in the majority of places.

I think a lot of people thought going into this conference, “oh, all we're going to hear about is Greenhouse model, Greenhouse model, Greenhouse model.” Though, what we learned very quickly was they [the speakers] are very clear that this is not going to work for everybody, but you need a smaller house model. Whatever that looks like for your neighborhood facility/your company. Not everybody can do it the same way, but there are ways to do this to ensure safety, ensure a higher level of care, and to improve quality of life.

There were so many conversations amongst people surrounding all those areas. I mean it was coming from every angle from policies and procedures to the politics of how do we fix this, to how do we get around some of these corporations that own hundreds of facilities and all they're worried about is their bottom dollar. Many weren’t focused on just culture change, there were other aspects too.

Very interesting! You mentioned that you learned so much about how we can change the long-term care system so what would you say stuck out to you?

So, one of the best things that I heard and that I've repeated multiple times now is we don't need culture change, we need to create a new culture. We just need to change it all. Instead of trying to fix what's broken, why not just start over? At least to me, that was something that stuck.

How can we go about doing this?

Dr. Stephen Trzciak was the keynote speaker and he spoke about compassion and on empathy. He's done a lot of research on the outcome of a patient, he is an ICU doctor, and he has a lot of interest in gerontology. He talked about how if a doctor would spend 45 more seconds with a patient showing them compassion, then the level of outcomes [that arise] for that patient is huge. That compassion also reduces the level of pain meds that are needed and the time for recovery. I mean, who would've thought? Literally 45 more seconds for all these doctors that say, “I don't have time to have compassion. I just need to go in, do what I need to do and go.”

To me, listening to a lot of what he said was how pediatric hospitals work. Using that compassion, using the empathy, and involving the family in every step of what you're doing. I personally have said for years, I don't understand why pediatrics or why geriatrics is not run more like pediatrics. I like that there is so much commonality between the two. Yes, you're in the beginning of your life here and you might be in the end of your life here, but both subsets of people need more support.

They need more family support, and the more you involve the family, the better the outcome for both would be. Yes, we're looking for resident-centered care, we're looking for resident-directed care, but if you look at adding family-centered care, which is what pediatrics does, the outcome is totally different. I see that every day in my son's facility with the residents who have regular visitors and the residents who have no visitors.

I see this with my residents who have Alzheimer’s Disease and Related Dementia too though I hadn’t considered the correlation between pediatric and geriatric care. I think involving family could get a little messy when cognitively aware older adults may disagree with their family members, but there does need to be more of an effort to include the family in the care of their loved ones if desired. For those who may not have family or family who wish to be involved, how can compassion and empathy be brought into a facility?

Well, in ours it’s adults with developmental disabilities so some of the same cognitive issues, I mean like this afternoon I literally only stopped by to drop off a case of Gatorade for Lynn [ Carrie’s son]. I went into the lobby and came back out, but there was still a resident out there and he's not moving because he knew I was coming back out. He needs a hug, and he needs somebody to tell him they love him. I know that his mom passed a year before COVID, and all he has is a brother who doesn't see him hardly ever. Whether that's 10 seconds or a minute. That compassion, that empathy, totally, totally changes everything and it doesn't have to be anything major and substantial. It just has to be sincere and that's a lot of what this gentleman [Dr. Trzcaik] was talking about. Like he said, sorry, not everybody is born with it [compassion and empathy]. Not everybody has it naturally, but it can be taught, and it needs to be taught. You’re teaching by example more than anything else.

Thank you for sharing your experience with your son Lynn. I do this on a daily basis with my residents and I, too, can see how just stopping what I am in the middle of for a moment and giving them my attention can make their day. Have you seen anyone in your facility teach by example?

We are not non-profit. We are actually for-profit. We have a CEO who's been with the company for close to 50 years and he's in his office every day of the week. He knows every resident, every staff person…I adore the man, and he knows that.

That’s interesting because a lot, but not all, for-profit LTC owners are in it for the money and these types of connections fall to the wayside. Have you seen staff stay because of your CEO’s approach to leadership?

I think it was like 8% have 20 years or more with the company and well over 10% have 10 years or more. It's because he truly takes care of his staff…leading by example. If you teach someone, “if I take care of you because I need you to take care of the next person,” it's going to trickle down.

Impressive! My master’s thesis looked at what nursing home administrators can do to mitigate CNA turnover and increase retention rates, so I appreciate him leading by example from the top all the way down. I’d like to turn it back over to the conference though and ask you if there were any speakers who brought their experiences with them to the stage?

So, there were people there from 43 states, three provinces in Canada, and seven countries. There were people from Australia that came in for two reasons. One, somebody in Australia made a play that they've done about Dementia and their family, and I did not make it to see the play though. Second, they were there as presenters too and talking about how they created this and why they did it was because of either mom or grandmother that had Dementia. Australia is also currently at the very tail end of opening some of their first greenhouses.

There were other people at the conference too. There were ladies that were there from Canada who said the system has changed in Canada now. It didn't really matter what you have. You're all in the same facility together, whether it's mental illness, a senior citizen or somebody like my son. At least in some of the facilities. So, they [the Canadian ladies] said their system might even be a little more broken than ours. Then there were other people there that I just never would've expected.

Like who?

There were multiple architects there from around the country, some who have done small house models [and others who haven’t]. The fact that these architects were there to learn from everyone else and to listen was interesting. There was an attorney and his CEO, and I'm going to presume Doug was also an attorney, the CEO. Doug was in an accident at 18 and is in a wheelchair, but they do a lot of representation with housing issues and helping people with disabilities and the elderly.

I wouldn't have expected attorneys to be there. I wouldn't have expected architects to be there and to be sitting there listening and understanding why it is important. Not just for infection reasons, but every other reason. Why is it important for private rooms and private bathrooms and why sometimes it's one model is built this way and another one's built that way. They were there truly to learn from everybody else, which I thought was incredibly cool.

Definitely incredibly cool! This is crucial especially if we would like to see a new culture emerge. I believe we need to extend that thinking to our entire society, not just geriatrics and gerontology. I see we spoke about the physical aspects of a LTC facility that need to change, and spoke about the person-centered aspect of culture change so do you think the Pioneer Network and the Greenhouse Project’s collaboration for the first-ever CFI conference could help catalyze change?

It'll because so much of what they have both done over the years really runs parallel. One of them has done it about the physical structure. Well, I shouldn't say that because even though the greenhouse part of it is a physical structure, it's also about the training of the staff and the fact that they don't use CNAs. All those things are what makes that different. They [the Pioneer Network and the Greenhouse Project] both totally believe in the resident-centered, resident-directed care.

Could you feel others at the conference were motivated by this collaboration and believe there can be changes made to our LTC system?

I think that's what a lot of this is, that people through this whole conference, truly, they don't just believe it, they live it. That makes the difference and together enough of us can create change. It's not going to be a fast process. We have multiple things in this country that will slow us down, even just rebuilding. Okay so for instance, I think the average age of most long-term care buildings itself are over 50.

Crazy, isn’t it? A burning question I have for you is did the conference have any outside experiences? For instance, did you get to go to a greenhouse or newer-built LTC facility that implemented structural changes to accommodate the needs and desires of individuals?

They took us on a tour [of a greenhouse]. We spent half of a day there. This one was not a traditional greenhouse so even more cool because we got to see that it wasn't a traditional building. It was all Dementia care on this part of their property, and they have multiple facilities on this big, huge property outside of Pittsburgh in a beautiful, wooded area. It was a two-story building and each floor had 14 or 16 beds per unit, but they were completely separated so these 14 were there, these 14 were here. The only way you could get from one side to the other was through staff hallways that were deliberately placed because of the Dementia and because they truly wanted everything to be like you're at home.

They [the designers] built these doors into places where they weren't so obvious. Every apartment has a kitchenette area where they can put a microwave or a refrigerator. They have room for a bed and a small couch. Truly, this is their home.

Love it! Were there common areas too?

Oh, they have lots of common areas. The residents also eat their meals family style. The staff get them ready, and the staff eats with them too. Most greenhouses do all of the cooking right in the kitchen on the floor. This one doesn't, but they have a kitchen there where they can bake with the residents, and they can do all sorts of things there.

On one of the floors that we walked on had a courtyard and when they explained to us why this courtyard was done in the manner that it was done in, it was brilliant. You'll love this, so you know how people with Dementia have limited vision and they start having vision issues and all the rest? Well on every sidewalk [of the courtyard] where the sidewalk transitions to grass or anything but the sidewalk, they have a 10-to-12-inch narrow groove in it. Everything on that other side of it is painted black, not brown, nothing else is black. Essentially, that person as they're walking with their walker or whatever else can catch themselves and say, “oh, something's there. I shouldn't be going there.”

I learned a little bit about this during an Environmental Gerontology course I took at UMass. You have to play tricks on the eyes and subsequent brain.

It was brilliant! So, the other thing they did, because it's a Dementia unit and people sometimes forget where they're going, every hallway had a theme. The themes were all very related to Pennsylvania. Some fairs, hunting, and those sorts of things. The other brilliant design feature they did, which was really smart, and I've never heard of it done in any other facility in the country, is every apartment has a Dutch door. Do you know what a Dutch door is?

Yes, my grandmother had one. Always wanted one in my future home.

Okay good, so, the residents have the option to close their door completely. The majority of them do not. The majority of them actually leave that top door open all the time. When somebody's walking the halls to do a quick bed check or anything else they can peak in without having to open the doors.

I like that!

I like that too and like I said, and it's an option. Nobody's ever required to leave their door open. They had a sensory room in the facility also, so if somebody is melting down or overstimulated, you could take them in there. You could play soft music and there were strings of lights they could touch that looked like twinkling stars. There were some sensory things on the walls. I asked them if I could have the room to take it home because this hyperactive woman [in her son’s facility] could really use that.

We do something similar in my facility in terms of the sensory room. We have an indoor garden area. With a big wall filled with brightly colored potted plants, but these are not real plants in case the residents ever ate them by accident. There is a watering table that way they could pretend like they're watering the plants. We always have soft music, and we always have birds on the TV. It is meant to de-stress our residents and it’s a success so far.

Right, so this room [the sensory room during the greenhouse tour] is used for sensory issues and they have beauty salons in each unit. They look like beauty salons; it’s not just used for hair and nails, and they're done. One of the sitting areas we looked in, you would not know you were in a long-term care facility! It had a fireplace. It had bookshelves. Obviously, they're not using real fire.

Good! I would certainly hope not. It seems like this greenhouse gave you an excellent experience of what it is like to live in one of them!

The other thing we got to do while we were out there was receive a brief Dementia training. We had to put the glasses on and do all of that. Oh, we had glasses on that gave you visual field cuts, I also had headphones on that each ear played something different. I had two pairs of gloves on, and I think there was something else, but I can’t remember what. Anyway, then I was supposed to go in and add something on a calculator. I was supposed to find a certain shirt and try to button it. That sure as hell didn't happen! It was about five things you were supposed to do, and I haven't done it yet for my son's facility, but I am going to.

I think every facility needs to do this. I mean, I had no idea how to work with those who have Alzheimer's Disease and Related Dementia when I started working with my residents. That is a crucial step in this culture shift, training staff! Okay, so I have a few last

questions before we wrap up our interview. First, how did you feel after leaving the conference?

Thoroughly exhausted, but at the same time I was majorly energized over the fact that I know we can make more change. First of all, I live in a different world than most people and my thing is if you don't ask, they cannot tell you, “yes, that's true”. They can't tell you yes if you don't ask. Everyone else runs on the opposite. I felt like this [conference] gave me the opportunity to meet more people, to make change, and gave me more insight into who to go to for whatever bright idea I come up with next.

So much came out of it for not only just my personal growth, but the things that I can help Gray Panthers with. Because my advantage with the Gray Panthers is that we are doing this at a national level and internationally, if I'm going to make change, I'm all in. I would much rather do it here than start in Illinois and have to keep going through.

Smart idea! What would you say the biggest takeaway you took with you from the conference would be then?

The takeaway I took is that we need to bring more family members into this part of long-term care because everybody kept saying, ‘oh my God, this is great, you bring such a different perspective”. I'm one person. If there had been 10 of me there then we could have hit everything and met more people, I couldn't meet 500 people.

Of course not! There’s that family-centered aspect of change that we spoke about earlier though. I agree with you for sure. Now, what was the best part of being at the conference?

The best thing about this whole conference would be that as you were talking to somebody about anything that was related to long-term care, whatever the subject was, they're like, ‘oh, you have to meet this person because together you guys could do this’. Or ‘oh, you have to meet this person because they can save you a lot of work since they've already done it’. That is exactly what it was like.

I have spoken with Penny Cook, who just stepped down but was the Director of the Pioneer Network, and Susan Ryan, the Director of the Greenhouse Project, many times but never met them in person. The CEO of National Consumer Voice, which we all do a lot with, and I were sitting in one of the sessions and she came up and tapped me on the shoulder. She said, “Carrie, I'm Lori.” As soon as I heard her voice, I knew who it was. She continued, “oh, I've been so excited to meet you.”

Meeting these people, especially for me, was the best part too. I went into this as the line that Michelle uses and that is that I'm just one mad mom. I always tell people this – to go from that to this conference and being considered the same kind of advocate they are was incredible. You know what I mean? Because in my mind, going to Pittsburgh, I was still just the mom. To realize that I really am not just the mom really put into perspective the things that I have personally been able to accomplish over three years. Even in terms of what I'm doing with Gray Panthers and the recognition that all of a sudden is showing up.

A perfect display of what our Unity Series is all about. Would you say you felt united?

I did, so the conference gave me the feeling of, you know, who to ask, who to go to. You can see by meeting all these people that there are others who are going to work as hard as you are to make this a better system.


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