Melissa Kahn talks with us about trauma-informed care, giving caregivers (staff) space and grace, and her personal healthcare passport (get one!)

Valerie VanBooven RN BSN:

This is Valerie VanBooven with the Senior Care Industry Netcast, where leaders with three or more years of experience share their advice. So let’s get to it. In a few words, tell us who you are and what you do.

Melissa Kahn:

Valerie. First of all, good morning, and thank you for having me and thank you for letting me chat with your listeners. My name is Melissa Kahn, and I am the principal owner of Kahn HealthCare Consulting LLC here in Chicago.

I worked in the field of aging, Alzheimer’s, and healthcare workforce development for more than 25 years, developing preventive care plans for older adults and their caregivers and innovative programs and services for organizations such as CVS Pharmacy, the Department of Labor, the Metropolitan Chicago Healthcare Council, and the National Association of Social Workers. I’m also the author of the Personal Health Care Passport, a tool to better help older adults and caregivers manage care across the continuum.

Trauma-informed care means really understand what trauma happened early on and how does that impact care?

Valerie VanBooven RN BSN:

Very nice. That’s a lot of accomplishments. You have lots of wisdom to share with us today. I’m sure.

Melissa Kahn:

A little.

Valerie VanBooven RN BSN:

Great. Awesome. Well, tell us first, what is the very best thing about serving aging adults?

Melissa Kahn:

Well, let me start off by telling you a little story. So in 1997, my mother was dealing with cancer and I could see how she was challenged with managing her disease, orchestrating appointments, and just handling all that went along with that. And six months into her disease, my father was diagnosed with cancer. So I wanted to create something for them that could really empower them to manage their disease process, write down side effects, treatment modalities, questions for the doctors and a place to really chronicle how they were feeling when they sometimes couldn’t tell us. And my mother would take her booklet with her to every single doctor’s appointment. And the doctors would sit down and review it with her and found it to be really helpful.

            When she passed away, her doctors called me and said, “Melissa, where do we find something like this so we can give to our patients so they’re empowered at a time when they don’t feel very powerful?” So I said, “There really wasn’t anything. Hence the reason I created it.” So fast forward to 2006, I decided to publish and trademark the Personal Health Care Passport and creating a practical tool to help older adults manage important health information, facilitate conversations around care wishes, and empower people to be proactive has been really important for me.

            At a time and especially now at the start of the pandemic, I heard from a woman in Rhode Island who purchased the book years ago and said, “Melissa, I’d like to purchase it now for our family members because with the pandemic, we’re acutely aware that we’re not aware of each other’s illnesses. And if somebody goes in the hospital, we’re feeling really frightened and not being able to help the care providers.” So that motivated me to go back and update the book so that families during the pandemic had another tool to really empower them at a time when we were all feeling really powerless this year. The Personal Health Care Passport really has been a labor of love for me and the best way that I could honor my parents and help others navigate this journey. So for me, the best part is being able to take something years of knowledge and experience and put it into action for older adults.

Valerie VanBooven RN BSN:

Awesome. Well, I’ll tell you what, even having a parent who is on the whole, a very healthy person, my mother would be 71 right now, she also has other issues. She has arthritis. She has maybe some stomach issues or whatever. She has other things that are going on, and you’re right. Yeah. We can talk on the phone and all that’s fine, but I don’t see her day-to-day. She doesn’t live near me. She lives in North Carolina. I live in Missouri.

            If she has something like that, kind of to add to the financial package of things that she has in case something were to happen to her, her trust and everything is in a big binder, which is awesome. But to add to that, some of the maybe symptoms that she’s been feeling, anything that she’s been to the doctor for recently that I might not know about, or just in passing, she just didn’t happen to tell me about or whatever, even if she’s not chronically ill, to me, it’s nice for her to have a place to just jot down what’s going on. And in retrospect, if something did happen to her, that would be a very powerful tool for me to have for myself and to share with whatever health care providers are involved.

Melissa Kahn:

Well, I will be happy to send you a copy so that you can share it with your mother. And one of the things that I often tell my clients and older adults is that having information can be the difference between good care and bad outcomes. And most people really don’t know their loved one’s health history. When I ask people, can you tell me the blood type of a spouse, they kind of look at me and they look at each other and they say, “I don’t know.” So again, I’ve done the work for you. I’ve created a template that is really easy to use. And so many families, hundreds and hundreds of families over the years have called to tell me how this made a difference in an emergency. And especially for people living with cognitive diseases, it’s very difficult to remember everything.

            So again, the goal was to empower people and make it easy so they don’t feel helpless at a time when oftentimes they feel very helpless when they walk into a hospital. And now, especially during the pandemic, they’re separated from their loved ones, and long distance caregivers really need to have information at their fingertips.

Valerie VanBooven RN BSN:

Sure. And where can people find this? Is it on Amazon? Do you have it on your website? How do people buy your books?

Melissa Kahn:

They can contact me directly. I have a website which is www.kahnhealthcare.com. My contact information is there and they can contact me. I sell it at my cost because my goal is to get it into the hands of people that need it. And so I have literally cut out all the other people so that I can send it directly and empower families so they understand the difference between good care and bad outcomes.

Valerie VanBooven RN BSN:

Very nice. And we will make sure that your website and everything, your contact information is with this video so that if people are looking for something like that, they can reach out to you. Because I think any piece of information that you can set aside and make sure your family knows where it is, don’t hide it. Make sure they know where they can find the good stuff for… If you can’t talk, somebody can speak for you and they’re not frantically tearing the house apart, trying to find anything from bills to medications to lists or whatever it is that you might have. Put it all in one place and say, “It’s in the top drawer.”

Melissa Kahn:

And [inaudible 00:07:11] to care wishes. Oftentimes family members don’t talk to their siblings and their children about what their wishes are. So again, it’s to facilitate a conversation so no one says, “I should have and could have.”

Valerie VanBooven RN BSN:

Yes. Absolutely. And just to put your children, your adult children, or your spouse or your sisters and brothers or whoever may be that voice for you to not put them in a position of having to make decisions that they’re not sure about, and they don’t know your wishes, and they’re having to guess at it is really challenging. It’s a burden on their heart. They’re trying to make a loving and very appropriate decision for you, but it really is a heavyweight when you have to make a decision for someone, and you never had that discussion about what they would really want.

Melissa Kahn:

Absolutely. Absolutely.

Valerie VanBooven RN BSN:

Yeah. Yeah. Well, let me ask you this question. I would imagine in your lifetime, you’ve been in healthcare for a long time. There have been people, organizations in your life who have really made an impact on you or have given you inspiration or mentorship. Who are those people or organizations?

Melissa Kahn:

I have been so fortunate in my life to have many people who have mentally mentored me, but have really left an impact. Early on, I did my graduate work in New York and I was working at Bellevue Medical Center at the start of the AIDS crisis. So this is not my first pandemic. And the patients that I worked with really were my best teachers. It was there that I really learned about what it means to be there for people in their hour of need, truly in their hour of need, because back then people were dying. They were not living with AIDS. I learned about what it means to have tolerance, patience, the importance of really actively listening with intent, and giving and treating people with dignity. These life lessons from those patients have really guided me and had been the cornerstone of my work in the field of aging.

            I have also been involved… For many years I sat on the advisory board at Northwestern University’s Cognitive Neurology and Alzheimer’s Disease Center. And there Dr. Mesulam, Dr. Weintraub, and Dr. Morhardt really impressed upon me about the importance of scientific research and about the importance of life enrichment programs and caregivers support. And again, there’ve been so many people, Robyn Golden, who it at one time was the president of American Society on Aging and is the Vice President at Rush University Center for Aging has really also left an impression and has really been a mentor to me. We worked together when I headed up the Alzheimer’s Initiative for the Council for Jewish Elderly, but she really left an impact.

So I started this caregiver healing session called Space and Grace, making sure that we are providing caregivers and organizations a place to talk openly. And those of us who participate, the management and myself, listen with intent.

            And then lastly, I’d say most importantly are the paraprofessionals and all the caregivers that do the hardest job there is of enhancing the life of older adults, making sure that they have quality of life and really caring for them with dignity. I’m inspired by how hard they work and how dedicated they are. And I’ve really learned that even more so during the pandemic. Early on, I noticed that we were all talking about the frontline workers in hospitals and long-term care communities and lifting them. But I also noticed those who were working in the communities were silent and we weren’t hearing. They were invisible. We weren’t hearing about the challenges they were facing, having to take public transportation and go to care for family members while making sure to stay healthy themselves. And it was really during that time that I realized that we need to lift them. We need to acknowledge them and help them have a space and grace to talk about what they’ve been doing.

            So I started this caregiver healing session called Space and Grace, making sure that we are providing caregivers and organizations a place to talk openly. And those of us who participate, the management and myself, listen with intent. We really want to validate, lift and acknowledge the challenges they faced this last year and honor them for all the work they’re doing. So, again, I think it’s really about enriching the lives of all people. And I learned from all of the people I’ve learned I’ve worked with and worked for.

Valerie VanBooven RN BSN:

Yeah, absolutely. Boy, that is so much good information right there. And you’re right. Our caregivers should be honored. And we talk about that a lot on this show about how our caregivers have the most important role in all of this, because there would be no home health care agency, no private duty nursing care agency. Nursing homes wouldn’t do very well without all those caregivers assisted living in that. And they do need a place where they can talk openly and not be afraid of repercussions and just get their feelings, have their feelings be heard. And so, yes, I believe that they are our greatest heroes.

            But also you mentioned the AIDS pandemic. And I forget. I was an 18 year old, 19 year old working as a nurses aide. I was in nursing school, but I basically lived in the hospital at the time. That’s what we did. We had a dorm in the hospital and we lived there and worked. We had part-time jobs while we were in nursing school. And I worked on a neurology floor with AIDS patients, which sounds odd. But it was when AIDS affected them mentally that’s they were on the neurology floor.

Melissa Kahn:

Many of them probably had toxoplasmosis, which causes dementia.

Valerie VanBooven RN BSN:

Yeah. So I was actively working with and being involved with dying AIDS patients every single day that I worked, and being 19 years old, I wasn’t wise enough to understand the impact of that, of the AIDS pandemic and of what that meant and why people had AIDS. I mean, I knew the basics, right? But I was 19. You’re invincible when you’re 19. It’s just another patient. And then I remember, we were educated at that time, but not as well-educated as we are now. So yeah, we were supposed to be wearing gloves and supposed to be handling things with protection on at the time. But when you’re 19, you may not have your gown on. So I can just imagine the things I did when I was 19. And this is back in 1989, 1990.

            But I remember the day a doctor came out of one of the patient’s rooms, and this is when it finally, I understood the importance and the devastation of this pandemic. He came out of a room and he took a scalpel and cut his hand open. And I know it sounds dramatic and crazy, but he had stuck himself with a needle after sticking an HIV positive patient. And he figured that if he just cut his hand open and let it bleed, then he would have be less likely to get AIDS. And he was so scared. I mean, he was white as a ghost, very respected physician, white as a ghost. And that was the moment when I thought that this is serious. This is a big deal. And when you just said that, I thought, you know what? We have lived through another. I often think most of the folks our age haven’t lived through a pandemic, but we really have. We really have had that experience of life-threatening devastating disease that we finally got control of. But it took a long time.

            I mean, I would say people still die of it, but people live with it more than they die of it at this point. So it’s crazy. But yeah, so I would agree. We are pretty tough souls as we get older. And the folks that are even older than us have lived through World Wars. They have lived through other diseases and things that have affected them, their grandparents, their parents. So the older we get, the wiser we get, but I think our seniors have a lot to teach us about how to be tough in these days.

Melissa Kahn:

And you mentioned something that I wanted to share too, that you said about older adults who have lived through many things. We now know a lot more about trauma informed care. And for people that have lived through the World War, the Holocaust, and now we have new generations of immigrants who’ve lived through Bosnia, it’s really important that we’re all better informed about what that really means so that we’re taking a person-centered approach to care and really looking at the whole person and making sure that we’re not just treating the disease, but we’re treating the whole person because they come to us with all of that. And so for many people living through this pandemic, the long haulers will have those same issues, and physicians, nurses, social workers, care practitioners, they’re going to really have to take a trauma informed look at how do we treat people going forward as they age.

Valerie VanBooven RN BSN:

Yes, absolutely. The effects of COVID-19 will unfortunately impact some people, like you said, the long haulers for the rest of their natural lives. And it will not be something that they get over in a few weeks or a few months. It will be with them forever as long as they live. So you’re right. We have to keep that in mind. My hope, when the pandemic goes away or is under control, we will still have people that will need mental health care as well as physical health care just from this. Well, thank you. You’re very wise and you bring us lots of great thought processes to this. No matter how old we are, chances are, at least at my age of 50, we lived through a couple of things that we need to keep in mind there. Okay. Let’s talk a little bit about online marketing. We’re going to switch gears for a second here.

Melissa Kahn:

Sure.

Valerie VanBooven RN BSN:

All right. You’ve got a website. You mark it nationally. I’m sure. You reach out to people on a local level, but also on a national level. So what has online marketing meant to you, especially in the last year so when we really can’t get together as much as we’d like obviously?

Melissa Kahn:

I’ve been very fortunate because I have been able to work for a number of organizations nationally, locally, and internationally. And with families, not only here, I’ve been doing virtual work with families doing preventive care planning for years using Skype. So this is not new for me. And to be honest, they’re my best marketers. I do have a digital footprint, but honestly, word of mouth has been the best. The families and the organizations have been gracious to share my organization and the work we do with others. So for me, that’s really been the best form of marketing.

Valerie VanBooven RN BSN:

That’s awesome.

Melissa Kahn:

And word of mouth.

Valerie VanBooven RN BSN:

It really is. Word of mouth and personal referrals really is the best form of marketing. So kudos to you. That speaks volumes to the quality of your work and how much people respect the advice and all the things that you do for them. So, all right. What piece of advice, you’ve given us a lot already, but what piece of advice would you give to other senior care providers?

Melissa Kahn:

So one of the things that I think is really important as we are aging and living longer, I think it is essential that care organizations become really informed about all the cognitive diseases. Most know about Alzheimer’s, but there’s so many people that are providing care that really do not understand frontal temporal dementia, primary progressive aphasia, Lewy body disease, Parkinson’s, Jakob-Creutzfeldt. So I encourage caregivers and their organizations to be really better informed about that to understand what it means to really provide person-centered approach to care and what a best practices. And then also to understand, again, I can’t emphasize this enough, about trauma informed care. How does early trauma impact the care we provide people later in life.

            And an example would be those who survived the Holocaust, many of them had to go into the concentration camps. And some of them lost loved ones that were in gas chambers. Well, for somebody who’s dealing with a cognitive disease, specially Alzheimer’s, their long-term memory is going to come flooding back. So we’re very sensitive to know that you can’t tell people to take a shower. You have to be really creative and make sure they understand that it’s about spa time. Because again, people that have lived trauma, it comes back later in life. And so as caregivers and organizations, I think to be best informed and understand the complexities of the people you’re working with is really enhancing your services.

            The other thing I would encourage people to do align yourself with organizations that are research institutions so that you’re learning. In our field, it’s about lifelong learning. It’s not about going to one class and then you’re done. I have told people all my life, I continue to take classes, I continue to learn because there’s new things that happen every single day. And I want to be the best that I can be. And then find a professional that can act as a mentor or align yourself with the American Society on Aging. They have mentorship programs so that young professionals who are just starting out have somebody they can go to, to really help them and guide them during their career.

Valerie VanBooven RN BSN:

Those are excellent pieces of advice. What young person, I mean, my age or less, the 20-year-old CNA, the 25-year-old nurses aide, the 30-year-old nurse, if they heard what you just said about Holocaust survivors, they will never forget it. But most of them will not hear that. And unless they have leadership who understands that and is willing to share that kind of information, they may not even know that the person that you’re caring for is a Holocaust survivor, which also brings that importance of understanding and knowing the story, the life story of some of the residents, or if you’re providing home care, of the person in the home, asking questions and understanding their history, because that’s so important with regard to their care, especially when they start remembering being 18 years old or 19 or 12. They are in that time again.

            And you may not understand why they’re going crazy when you ask them to take a shower. You may think it’s just what all dementia patients do. And that’s not necessarily the case. It may be because it’s a horrific memory for them. So thank you for that because most people will never hear that.

Melissa Kahn:

And I do a lot of training for paraprofessionals and for caregiver agencies around the country, a number of topics. And we talk about not only trauma informed care, but how do we impact outcomes? We talk about the client and the families often in the difficulties they are providing us. But I oftentimes talk about how do we look at ourselves and do we take stock of what we don’t know or what we do know or what we’re projecting, because that will impact the outcomes. And I think if one spends time learning about separating and understanding the differences, you can only enhance care and make sure that you’re really meeting the needs of your clients. So I try to do a lot of training where I can and take lessons learned and share it with organizations so they’re better prepared to guide their caregivers.

Valerie VanBooven RN BSN:

Very nice. Thank you so much for that. What a huge lesson for the trauma… Say it again. Trauma?

Melissa Kahn:

Trauma-informed care.

Valerie VanBooven RN BSN:

Trauma-informed care.

Melissa Kahn:

Right. Trauma-informed care means really understand what trauma happened early on and how does that impact care? And can I give you another quick example?

Valerie VanBooven RN BSN:

Absolutely.

Melissa Kahn:

So there was a gentleman I know who works for a human rights organization in Chicago, and he’s a remarkable person. He lived through the trauma of being imprisoned in El Salvador as a political dissident. And actually he really wasn’t. He was a young student who was walking through campus when there was a protest going on and the police arrested him. And he was imprisoned in a vertical cell for years standing and several times a week was electrocuted as torture because they wanted him to disclose information that he knew nothing about since he was not really involved. Fast forward, he has lived through that trauma and now works for a human rights organization.

            But a number of years ago, he went to the hospital with chest pains. They thought he was having an MI. And in walks the technician with the EKG machine and he freaked out. And they didn’t understand why he freaked out. And he yelled. He said, “You cannot connect me to that! You can not connect me to that!” And the staff had to go back and really think about how do we provide care for somebody who’s been tortured? So trauma-informed care is very involved. And oftentimes as caregivers, as paraprofessionals, doctors, nurses, clinical, social workers, we just look at what’s in front of us. And I always try to teach people to peel the layers of the onion back so that you can understand the complexities of this person, because unless you understand that, you can’t fully meet their needs and provide the care that they need. So trauma-informed care means really looking with the third eye and listening with a third ear.

Valerie VanBooven RN BSN:

Absolutely. That’s amazing. You know what? As a young nurse, no one would have ever put that in front of me. It was make this happen, fix this problem, and move on to the next one. We didn’t think about where people came from, or we try to look at the person as a whole person. But to think about what their history was, bringing into this moment was never really a consideration. Especially when you’re dealing with trauma and you’re dealing with instant, immediate emergence, emergent type care, that wasn’t what we thought.

            I worked in the burn unit for many, many years. And so everything was trauma. Everything was trauma coming in, and the rationale for why someone got hurt, sometimes it was everything from accidents to intentional harm to themselves usually, or to another person or someone did it to them. And had a huge psychological impact on that person, of course, and on their ability to heal. So we did learn that, but their whole history was probably a very traumatic one. When they came to us with a self-inflicted injury or someone had done something so horrific to them, there’s probably a lot more to that story. So that’s an amazing amount of advice you’ve just given us and information. Thank you.

Melissa Kahn:

And encourage people to do that because I think what makes organizations stand out to really be leaders and to be exceptional, not just the mediocre is those that really take time to learn, to better understand and to become informed by aligning themselves with other organizations that can help them grow. We can’t do this alone. It really does take a village. And so surrounding yourself with experts, it really makes a difference. My mother used to say, “If you want to serve with the eagles, you cannot hang out with turkeys.” I encourage people all the time to surround yourself with the best eagles.

Valerie VanBooven RN BSN:

Yep. With people who are smarter than you and do things that you didn’t know were possible, that makes everybody a better person. Absolutely. All right. Now, a last question supposed to be a fun one. When you have a win in life or business, how do you like to celebrate?

Melissa Kahn:

Well under normal circumstances, pre-COVID I’m a big traveler. Hence the reason the Personal Health Care Passport got the name, because I know that I can’t get in and out of a country without a passport. So for me, travel is really the way I love to celebrate. But during the pandemic I too have been separated from all my loved ones and from dear friends and family. So I can’t wait to get my second vaccine so that I can go and be with friends and family and just enjoy the simple things. I am longing for some long hugs and big kisses.

Valerie VanBooven RN BSN:

Absolutely.

Melissa Kahn:

That’s it for me right now.

Valerie VanBooven RN BSN:

That would be a great way. I am on my way on to vaccine number two myself. So yeah, March 15th, vaccine number two. And we’re ready for a little… Maybe when the weather gets a little nicer, which it hasn’t been too bad, but we’re waiting for some more of that spring weather to come our way. I’m south of you in St. Louis. So we’re in our, what do we call this? This is our fake spring right now. It’s going to probably get cold again before it gets nicer, but we’re ready to travel and just go see family, nothing intense. Just get out of here and see the world a little bit. It’s been a year.

Melissa Kahn:

Well, I have a sister in St. Louis, and so I’m eager to travel down south to visit her and my family there. So I understand.

Valerie VanBooven RN BSN:

Yeah. All right. Well, thank you for doing the show. Thank you for being on. I love a great conversation like this, and I appreciate your time so much. So thank you.

Melissa Kahn:

Well, Valerie, thank you for providing this time. It’s been a pleasure for me. Thank you.