Music changes lives, literally. This episode’s guest, Hope Young, greatly believes in this, and she joins host, Carrie Miller, to talk about the power of music therapy to help support those patients coping with treatment. Hope is the founder and president of one of the most technologically advanced music therapy facilities in the world, the Center for Music Therapy, Inc. Here, she takes us into the amazing work they are doing as they celebrate their 30th year. She also helps us understand what music therapy does, especially for those suffering dementia, how the process goes, and how our brains and bodies react. Carrie then lays down the payment options available for this therapy, the ways she is advocating for assisted living and memory care homes, the importance of love and community.
Listen to the podcast here:
Healing Through Music Therapy And Advocating For Assisted Living With Hope Young
I have the distinct honor of introducing a very special guest. She’s the Founder and President of one of the most technologically advanced music therapy facilities in the world, the Center for Music Therapy in Austin, Texas. She’s also the Executive Producer of the Movement Tracks Project and Executive Director of Soundwell Austin (501c3). She’s been recognized nationally and internationally in such publications as the Journal of the American Medical Association, Shape Magazine, The Wall Street Report and New York Times Bestseller: The Mozart Effect. Her company is celebrating its 30th year, and her vision for the next 30 years boldly leads a new generation in music therapy to create healthier solutions through innovations in music technologies, which bring the power of music to help heal and treat all the isolated and underserved communities of the world. She’s a speaker, consultant and incredible intelligent woman, a full soul who I highly respect. Welcome, Hope Young.
Carrie, you are a delight. I am so thrilled that we have met and honored that you’ve had me on your show. Thank you. I’m delighted to get to speak to your audience.
Let’s start out by sharing with our readers the definition of music therapy.
Music therapy is the use of music for non-music outcomes and treatment like rehabilitation for walking or if you’ve had a stroke or a head injury, for speech recovery. If we talk about it in behavior health, everybody knows to use it to regulate mood, but we also process an awful lot of trauma in a safe way through music. We do so much more than that. In medical, many people have it. They’ve had a music therapist helping with cancer in chemotherapy, reducing pain, getting through surgeries with either no anesthesia or with half a dose of anesthesia compared to what you normally would without music.
There are many things with burn patients to deal with those acid wash fast. There are many uses that I could go on. One of the ones that we are talking about is cognition. People have seen the documentary, Alive Inside, how suddenly somebody who can’t remember who they are, who you are as a daughter, it’s like magic. This veil is pierced and through song, they remember not only who they are, they remember words of the song. They remember what they were doing when they were singing that song or dancing. It all comes back, all those relations and what we call autobiographical memory.
That’s the right side of the brain with all that language and music, correct?
It can be. When you’re talking about certain things like melody recognition, that’s the right side. When we’re talking about autobiographical memory and this cognitive attention, one of the things that music does is it focuses attention. Dopamine is gathered and stimulated to organize anytime when we do musical tasks. You’re getting an actual pharmaceutical health benefit when you’re doing musical things. That autobiographical memory and some of those complex attention, that’s both sides of the brain working together, which is part of that magic that we talked about.
How does that transform the life of a dementia patient?
It’s incredibly transformative. When I gave you that simple answer about music therapy, I’m going to talk about transforming when we’re talking about treatment. To call it music therapy, you have to have a board-certified music therapist doing it. We’re going to talk about an intensive treatment. We’re going to talk that healing that person who’s living and that family that’s living with dementia. We’re going to talk about helping them through music. When you go in and you help somebody by singing a hymn, somebody that you visit in church and you were in choir together, you visit and you will sing along. You see a smile come on their face. What did you do when you’re helping? You help breach the isolation, breach that loneliness, human-to-human, soul-to-soul and you can even say that’s very healing. What if we want to amp up that power of how you’re going to use music? Now you know that you’re there with the person. What if you need to do more?
We know that person has been grieving somebody that they’ve lost and you want to listen. That person has dementia. Sometimes they can’t speak, but what could you do? You could sing with them and help them by maybe holding their hand, tapping up the rhythm, doing little things, encouraging them to sing. What’s the song that you love to sing that you know their family, you know them? You know enough history to know that this is a safe song and they’ll start to sing with you. Oftentimes, if you’ll stop and let them finish, they’ll start talking about this like, “How is your mother?” If they bring up, “My husband.” If they’re talking and smiling and that’s all going well, you’re observing and you may sing more. You may be able to use your wonderful, “I can’t carry a tune in a bucket voice,” but your heart is there singing along with them, not worrying about the musicality, staying focused with that person.
It’s all about that connection. We are made to connect.
If you tap your toes, if you clap your hands, if you have an instrument, you’re getting them actively engaged and that’s healing. Do you remember how we were talking about music therapy, technology and research? Once you get them from that passive role where you sang to them and you were there, that’s helping them but you’re not getting them to engage. Even if you cannot carry a tune in the bucket, sing with them and get them to sing. Don’t let them apologize about their voice or say, “I’m not good enough.” Get them to sing because once they sing or if they can’t sing, they clap their hands, tap their toes, hold their hands, move with them, get them doing anything, you activate all the areas of their brain.Humanity is rhythmic. Click To Tweet
When you do that, that’s brain exercise. When you have dementia, we know all those areas, there are proteins that are killing the cells. If you activate the whole brain, it gets the blood flowing and it’s like your muscles getting oxygen and getting dopamine, these credibly important neurotransmitters. It’s like vitamins, you are a nutritionist. You need to feed your body while music feeds your brain. Are you getting a healthy dose? The more you can get that person to engage with you and stop worrying about, “I’m not good enough. I don’t have the voice,” and you do like we did in the old days, back where I grew up in Indiana, there was no organ or instrument store. It’s just people. We did that a lot back in the day. Now, music is done to us because it’s electric and everybody’s got it in their pocket. We do it together less. It’s very important with dementia that you do it more together.
When you get to treatment, you would see the need for treatment. When you have a music therapist who knows how to take dementia and an advanced person with dementia to get them moving safely, to stimulate gait, movement and thoughts. We know all the tricks, science and technology to get them doing those well. We know if that person was grieving and when you were healing, you are doing that work with your family member or engagement, if the grief was overwhelming them and they were having memories. In war veterans, we had to be careful about the music that we’re triggering an autobiographical memory that is from when they were in Vietnam, in Korea. We still have some more work to veterans. We have a lot from Iraq. You have to be careful of and that’s where you definitely need a music therapist. Somebody who have a degree, a Bachelor’s, Master’s or PhD and is licensed to handle when you get to treatment and guide you, but you don’t have to be a music therapist to engage and sing.
My mother has dementia and she’s in a home. Every time we were able to go see her, they had music playing all the time and she would hear him and she starts to sing. In fact, she still even dances a little bit. She’s got that rhythm.
If you can do that, remember what you’re doing to the brain and dementia is a brain disease. Music is known to be this neurologic phenomenon. There’s nothing else we humans do that activates all areas of the brain simultaneously. That’s why it’s so powerful and that’s why you have to be careful. That’s why we have music therapists that you can call on. The song can help you but don’t stop you from dancing with your mom. While you’re dancing, sing with her and open up the opportunity to say, “Mom and dad, we all danced with this when we were little.” Let her say whatever comes to her mind.
That’s some of my best memories over the last few years is dancing with my mom. I would hand my phone to someone and say, “Video us quick, a little snippet. I need this to hang on to.” She grew up with music, dancing and singing in church. We don’t have to be singers and dancers to participate or even have a musical background of any sort. People need to relax in that.
We are naturally musical beings.
There are some people out there that don’t believe that they are.
If your heart is beating in time and your doctor can listen to it and you can listen to your child or your mother and you hear her breathing, that’s rhythm. That’s melody. We take it for granted. You’re using a definition that a lot of us in modern history, because we’ve made it a recording industry. I’m a member of the Grammy’s, so I understand that. We removed the idea of what we’ve always known. Humanity is rhythmic and our voices even speak good morning. Just do that. It’s the rhythm. That’s what the brain is recognizing. We say the same thing, that little bit of words. This is important in dementia. Those words that we get hung up on, the speech pattern that the brain that I have some music therapists tap into to magically get them to speak or recover a gunshot wound to the head or all these things. It’s those things.
You are naturally musical, every single one of us. It’s the rhythmic brain pattern that the dopamine and those neurocircuits activate from. It’s those musical things that the brain is interpreting and tied to emotional content, which is you’ve been with your mom and all of these folks out there with your mom, what’s the emotional content value in your relationship with your mom and dad and your everyday activity, functioning and emotional content that the brain is recognizing or getting confused about. It makes the difference between medication to manage those emotions or being able to live and do music or other things that, “I feel calm. I know where I am. I have a sense of understanding in this time and place where I am and who I am, or a little bit of context in my life. Emotionally, I’m okay.”
I’ve seen that with my parents. They’ll be sitting on the couch and if I walked into the home, dad would be playing Gladys Knight & the Pips. That was some of their favorite music. They love that artist. Mom would sit there and sing, and dad would cuddle her. She was smiling and had that little beat going to her. It’s precious moments. You realize there’s that connection there between her and daddy.
I was lecturing to the UT Neurosciences with Judi Nudelman. Her husband, Harvey Nudelman, is a neuroscientist who got an advanced form of progressive supranuclear palsy with dementia. It’s a strong part of that. She was telling the students about Harvey, all the speech and all these wonderful things and she goes, “Harvey showed up with the music,” like your mom and dad. She said, “That was my resiliency.” Music with us and music therapy enabled that resiliency to make it through that journey with her children and husband, that resiliency that needs to be fed. Our souls, our brains, they’re all one. We forget how important to do things and do them often and give them as much priority to spend that time. We think that’s taken away with dementia and that’s not true. Those keys are there. We forget and we think they’re gone.
If you trigger, turn a little switch, you can have those moments. It happens over and over again with music. Once you get past that barrier of, “I don’t know how to sing. I don’t know how to do this.” I’ll tell you a few simple things that everybody can do. Let me tell you about things that are universal with music and that we know from best practice with music therapist, things that we’re doing not only here but in Australia, in Europe. Dr. Felicity Baker is a wonderful music therapist who was funded a $3 million grant to study music, supporting family and people living with dementia in their homes or in assisted living or care homes. What are those universal things that we have found as music therapists, a good practice and good research that you could do, and that you don’t have to be PhD or the expert?
Let’s talk through Yvonne. She is one of my company’s wonderful girls. She lives at home with her family and her husband. She has two diagnoses, which she every day has been living with for the past years. She has Parkinson’s disease, but the primary diagnosis is Alzheimer’s. We’re very familiar with Alzheimer’s. It has a very static progression of the disease and certain things that happen. In the earlier stages, one of the things is exactly what you are doing so naturally is dancing, singing, telling stories. We even would have her read the books to her grandchildren and let them play. She likely had books that were her grandmother’s, mother’s, hers and her son.
Anything in your house, some of your strongest memories when you’re wanting to read, sing, use music are from your early adulthood to your mid-30s. If you want to capitalize on memories, bring objects or things or a dress from a picture, and let her talk about that with that familiar song. Once they progressed more from the singing, which had popped up or doing music, as the disease progressed, we moved to, “We need a little bit more help with those triggers.” A picture, and we would talk about what she was wearing. We would talk about why her face is smiling, who’s in the picture, where are you and what phase of your life. Let her finish those thoughts, but we literally pull out some of the clothes and clothes that she dressed her little boy in, things that are around the house. Let her feel them, let her touch them with the music that is also from that period of life.
You can sing it, put it on the background, sing along. It does bring up, especially as you go into advanced stage where we are now. Let’s talk about what starts happening in advanced stages of the disease, where we want to have more tools in our toolkit to not to have medication restraints on our loved ones. That’s one thing we all want to do everything we can to avoid. One of the things that happens is sundowning. Sundowning oftentimes is the person is getting confused. “Who am I? Where am I?” doesn’t match up to what I’m experiencing. Your body wants to stay awake and it gets agitated. These are things that I had been working with Yvonne. At first, it was working well, but as the disease progressed and the sundowning got worse, I stepped in and had to train the people who were staying with her in her home and her husband too.
Things that we would do is, since it’s nighttime, have you guys seen those artificial candles that don’t have flame? Something that’s not a real candle. We would turn on the candle and I would put on music that had very little tempo changes, very low volume changes and something that was more for nighttime. I would simply describe and talk to her. I said, “It’s lovely to be sitting here next to your bed and looking at the candle together and the gentle glow against the dark sky as the moon’s rising outside.” You would hear her taking deep breath. I’m saying, “I’m listening to the music,” and I would breathe. “I feel so good, Yvonne. I feel my body relax and sit here next to you, listening to a beautiful song that is quiet and calm.”
I’d say sometimes, “Do you hear that? That’s a beautiful flute. That’s a beautiful piano.” Help her notice on what she can grab onto, she can hear, and breathe and say, “The moon is rising outside.” Describe what’s outside. “The green leaves are fading into shadow against the night sky.” Thinking about what’s around you and that’s describing and reinforcing it is nighttime, “You’re in your bed.” Help her brain focus, tune into the music. Here’s an easier thing. Let me put on some relaxing favorite music. I know that everybody loves classical, but it goes everywhere and it gets loud. It’s all these crazy wonderful instruments coming at you, not the best for you to help her calm down and go to sleep. A few instruments that tend to continue in and that it won’t start and stop suddenly. Especially when she calms down and going to sleep, you want to help her.
Here’s the simple thing. Put on that music, talk to her in a sweet calm voice like everybody knows how to do. It’s a loving moment. It’s a quiet moment. Imagine a child and a loved one in your arm. That’s who they are and read the Bible, passages that are reinforcing, books from your childhood, letters that you can find from the attic, the newspaper. I have one gentleman that his family and everybody sits and reads. He’s a successful businessman, always is reading the paper, but we do that in the morning. The reason we do that in the morning and not at night is because in the morning, the paper came first after he got ready or before he got ready. Once the shaving started, the tie was on, he will wander right outside of that facility. You want to make sure that the paper was something that he remembers doing in the morning.
Don’t do that at night. Otherwise, he’s going to start going into triggering. He doesn’t even think about it. It triggers those old patterns that we practice so much. If instead, do Sudoku, a crossword puzzle, read something. Think about your normal average day and reinforce that. Read to music. During the day time, if you had those afternoon times, which get difficult to keep them awake and that’s causing a lot of the sundowning or the staying up at night, do things very actively like drawing, painting. With people who are early to mid-stage, you can use finger paints and you can use any kind of thing to music, to create to it, to write to it, to do things.
In the advanced stages, we use Jell-o and pudding. It can make a mess, but you can do something that keeps them awake and engaged. That’s when you put on your classical or your country and ramp them up and then dance after all is cleaned up. Things like that in the middle of the day, where you have a hard time keeping them alert strategically with dance. You do the stimulating things. You strategically do those calm things with the sundowning at night and help them remember where they are, “It’s nighttime, you’re in your home, in your bed.” If you’re in a nursing home, say, “You’re in your bed.” If you can put your images, the pictures they’re used to, put those on a pillow so they can pull the pillow and go to sleep, love songs and they never going to forget to make out music.
If we could clone you to all the homes all over the world, you can make a huge difference in the world.
The good news is every human is musical on this planet. I’m hearing impaired and I have friends who are deaf. Don’t be scared to use it. We have this modern thing of music being done to you and own your heritage. We are musical beings.
I know how powerful it is. We grew up with music in our family. My mom danced all the time. My mom and my aunt would do the jitterbug together because daddy wouldn’t do it with her. Even though on the side, he would do it to make her happy. Let’s talk about the options available out there to help pay for this therapy. Can you talk a little bit about that because people are probably wondering?Every human is musical on this planet. Click To Tweet
If you think about what I laid out, helping people, healing people, treating people through music. In helping and healing, you need to pull your resources in that community and get volunteers and stimulate that, “Let’s get music.” Use that as much as you can in your budget to have people doing that. When it comes to a music therapist, when you’re in a skilled nursing facility, it would be built out and reimbursed the same way that they’re doing PT, speech. It would be billed and treated and it has to be in the treatment plan and physician orders. When you’re going to bill Medicare, understand what Medicare part A versus part B is.
Medicare part A is primarily when you’re an inpatient in the hospital. Part B is when you go out into the community. That can be an outpatient, at least for music therapy because that’s where my facility is. If you’re in A, that’s when you’re in a hospital, and I’d have to say how you’re doing your skilled nursing contract with your Medicare carrier, music therapy is going to be one of those bundled services that they’re going to get paid and it’s not a direct bill. The way you think of an outpatient part B, it’s part of the services that are covered under the Medicare services. You need to advocate for music therapy being a priority of those services to get better outcomes faster, and that are more appropriate and documented all over the world and medical and science journals to be one of the most effective for dementia and Alzheimer’s. That’s where you need advocacy.
They get paid for this to get speech outcomes, to get behavioral, to get therapeutic, to get movement. Music therapists are recognized in your state level. They’re recognized on the federal level as the practitioner to do that. Once you get an outpatient, part B, at the skilled nursing, if you’re OT or PT, these things are an outpatient after you left rehab or something. What I do is I train the PTs to use the music appropriately to get their balance and gait training. The PT is doing that intervention with them and we’re a consultant. If they have already used their $1,200 a year that Medicare will pay for PT, OT, speech, then you have an insurance plan which oftentimes a lot of folks have, not everybody. A lot of folks have Medicare or Medicaid, but if you have a Medicare Supplemental, that’s where you can direct bill music therapy. For speech, for those behavioral, it’s mainly cognitive, we would build a cognitive code where we support behavioral. The doctor must order it. The doctor literally has to write a script and say the diagnosis is Alzheimer’s. They have to write the appropriate diagnosis code and recommend music therapy to treat as recommended. Then you submit it to your supplemental insurance.
What about long-term care insurance policy?
You are paying $3,000 to $7,000 a month. Insurance is picking that up. That’s the job of advocacy. That’s the job of market to man. Those facilities know how to bill United Healthcare, Aetna, Blue Cross Blue Shield. That’s where it comes to advocacy. This is one of the most effective therapies known in current medical science and supported by Johns Hopkins University. There’s research in the International Journal of Neuroscience. It has been doing this and known its advocacy. It’s making sure you can find a music therapist.
One of the blessings and the silver lining of this pandemic is that most of us are virtual now. You can pick Felicity Baker from Australia, as long as the time works for you to work with as your music therapist. You can get all of my staff virtually. They can’t use the excuse that, “We can’t find a music therapist.” That’s why I’ve stepped into the whole technology game. We pivoted very quickly because we’ve been working with this technology a long time and how to get to those isolated, rural communities where I’m from. You can’t get to a hospital. We have maybe one place that maybe is a nursing home, but they don’t even have good dementia care at all. It’s getting harder.
When you’re asking it to be paid for, it’s going to be covered now. Medicare in those smaller rural communities are being defunded. A lot of us who are living in the urban centers, they have access to higher income jobs. When I was growing up in Indiana, our job was we got up every morning and we hoed, fed the hogs, fed the cattle, shove the manure, walk the fields pulling weeds from the soybeans, detasseling corn from morning to night. We only ate what we grew and raised. We went to the store to get salt, sugar, flour. We didn’t go shopping. That’s a Medicaid person. It’s the norm. I’m used to that. Therefore, we don’t have these Medicare supplementals. I never saw a doctor. I had an uncle who was a vet. I didn’t see an actual MD most of my childhood. Times have changed for us in the urban centers. They have not changed as much the further you go out rurally.
I don’t want people to forget that. Where you are and where you have access to makes you believe that those times have changed, but they had not for a large number of folks. They’re still living pretty much either off the land or hand to mouth. Medicaid and those facilities I’m talking about, there’s very little money and there’s $19 or $20 a day to take care of that person that’s left to do the things we’re talking about. I do want to be careful there and the expectations I’m saying because I think it’s important. Music crosses financial barriers. Everybody’s got a cell phone out there that have reception. That’s why I’m trying to get people to understand that there are things that we can do for your brain, that are powerful medicine. Eating, diet, health, it’s all essential. Don’t give up is all I’m trying to say when there are little resources. Make the most of the resources you have. Spiritually, mentally, emotionally do not abandon those folks and don’t believe that’s the best you can do.
We spoke briefly about the care in assisted living and memory care homes and long-term facilities. I recognize that you’ve always been an advocate for the elderly. In all your years, what have you fought for the hardest here in Texas?
Some political will to enforce basic rights and human dignity that we are probably one of the most unregulated states, which we take a lot of pride in, but there’s a good and bad side to everything that we can be proud of. It also has a dark side. We need the people who are caring for elderly, that we entrust to help us when we need help caring for them. There is not only oversight that our legislature puts in, but teeth to that regulation. If you’ve spent $3,000 to $7,000 or $10,000 a month, it’s still being a gilded cage because we still will not hold accountable that our parents are bruised, that our parents are laying in their own urine and feces, and they’re not being bathed. These things happen daily.
Ever since I stepped foot years ago in this state, it’s a state that we need to step up with love for our legislature, for everybody that’s involved, but to hold ourselves and each other accountable to what love is. The power of music has no harm and do no harm. That means when they’re interested in my care or somebody in a facility that there’s somebody who has our back to say, “No. The finances are flowing. You are making an awful lot of money here and yet, my mother is bleeding and hurt. Why? What happened? How do we improve this together?” Nobody improves without accountability. There is no right without responsibility. There is no ability to let love and this gift of life be ours to live in and enjoy. True love means we hold each other accountable. That’s my real fight and always my fight in this legislature, being truer to what we say is at the heart of this state.
Where do you think the breakdown in the homes is? There’s no accountability there from the state or there’s no strict guidelines, and then you’ve got caregivers in the homes that are making $10, $12 an hour.
They like to put it all on that. The administration leadership and regulatory of the state, we have known for the past years, Democratic or Republican are the same thing. We have a horrible track record of Regulatory T to these companies. Business is good and empowering. It’s good that there is a balance there. You cannot keep leaving that top layer of the power brokers that own and run these facilities unaccountable. They’re allowed to make all the money, but we’re not doing any kind of things because, “We don’t want to inhibit the money.” You are inhibiting the human lives and the trust in this industry. That’s why you see Aging in Place growing like crazy, not only here but around the world, like you, it’s the goal to live in the community at home.
Tell us a little bit about that, Aging in Place.
That’s one of the benefits. There’s an upside that those of us who have the means that we can be at home, those of us who cannot leave our parents at home and have to work, that’s a trick you’re going to have to pay somebody or have good community or family that can stay with them. Aging in Place means that we go out first from our home, that’s our goal. We do our financial planning around that. We make sure we have insurance or whatever we can to be able to stay at home. We redesign our homes like when you were preparing during pregnancy to get your home, those electrical outlets covered. We prepare our home for ourselves. We change it so we can age in place. We literally put reinforced beams above our bedrooms where we know we’ll want to put eventually a harness to help lift us out of bed because we know that you carry, or your father probably can lift your mom as much as she needs lifted.
We will put supports and handrails in our bathtubs instead of worrying about them looking like better homes and gardens. We make sure that we have those rails built in along our hallways. We take out carpeting and we put in wood floors or hard floors. We maybe sell the house that’s two-storey and we move into a one storey that doesn’t have steps to get in and out, or we do a little bit of concrete to even out those. We do this ahead of time because we are going to age in place. We talk to our children, we do our advanced directives, our financial planning, so that we have those insurance things that instead of it paying for the nursing home, we are changing our financial model to stop reinforcing the assisted living and the skilled nursing facilities as the only option that gets her money. The insurance companies are allowing us to use those politics policies to pay for care at home, people who can stay with us, cook with us, nursing care. That would be covered there instead of what Medicare pays for.
They can’t hire them privately though. Can they?
Unfortunately, I know every policy is like, “Do you have health insurance?” “Yeah, but my policy only covers major medical.” “Mine pays for speech and OT and PT.” “Mine, I get nursing.” Scrutinize your policies and look at what you’re buying. We have a lot of our customers that pay for private. It all depends on your policy. When you’re looking at it, the other thing that those policies that Aging in Place is doing is you work on your community. We literally have all kinds of private companies and software. Those of you who have kids who will set you up, where you can have your garage doors up and down. You can have a smart home about temperature. You’ll allow your kids to see you. Only your kids that check in on you and see if you’ve fallen or wear the Apple Watch that lets them know that you’ve fallen.
There are many tech things that Aging in Place is doing too. Also, literally there are neighborhoods that has an Aging in Place committee in our homeowner’s association, that we’re knowing who each other is, we know who’s going to age in this community. You may be carried as a podcast and it’s around home and that we could call and say, “Would you mind picking up the groceries of Mrs. Smith’s? She’s not feeling well. Mr. Smith needs to go to doctor’s appointment.” That’s also part of Aging in Place. Getting us out of the nursing home and assisted living model for the future generations that are saying, “I refuse to keep funding an industry that is not being held accountable for how they care for me and care for those who I love. I love those people in my community as much as I love my family at home.” That’s Aging in Place and that’s a wonderful thing and transforming.
Thank you for all that because you are detailing all that out. It boils down to having that safety at home. It feels good when you go and you visit a home, and you visit several homes to pick out the home. The word they use to draw you in is, “Your loved one is going to be safe here. That’s where you can trust us.” Mom has been in four homes already. I see the neglect and abuse, and things that she’s not being taken care of. It’s sad. Loved ones do go and complain and nothing is done.
Not administrating that home, but the companies that own them above them are not being held accountable. My mom was in a nursing home. I’ve had wonderful, skilled nursing experiences and bad, but with my mom, I know a lot more. She was in this tiny, poor skilled nursing facility, but it was only owned by one owner that owned two homes, and there was so much love. There’s not the freshest paint on the walls but she got great care. We were Medicaid. It was poor, but it was owned by somebody who lived there and the community was different. I’m not saying that all corporations are bad, but in this state, those same corporations are used to being regulated more than other states. In Texas, we keep our hands off, and I know that’s supposed to be the ideal, but not ideal is 100%. There’s always a risk and we’re risking those that are most vulnerable.Music crosses financial barriers. Click To Tweet
The growing population to date is elderly. That’s the highest growth rate we have in our population in Austin, especially Houston. Our parents are coming here because we have all this influx of people in their 20s, 30s and 40s. Their parents are moving here in droves and they’re not making a lot of money. There are a lot of resources. Google it and it’s well-known in the Texas Department of Aging. We have a lot of people, but we do not have the political will to change that. The Aging in Place for those folks who have resources, not just financially, but family or community resources are choosing to do what a lot of folks to do everything we can to be at home. There’s a little bit of risk there, but there’s an awful lot of love and a real person there.
I can see that would be scored out so much better. I loved it when my dad had my mom home. It came to a point where it’s overwhelming.
They need support. Like you, you need support. That resiliency that Judi talked about, why is she saying that? It’s hard on you. It’s hard on your dad. You cannot do it alone. Aging in Place is not individualism. It’s not, “I’m going to do this all by myself.” It is community and sharing each other, sharing resources, getting in support groups, getting involved in community. If you’re new in the transplant, you’ve got to do your research. We need to reach out and find those people who are alone and bring them in community. That’s what it does.
How can we correct these issues at the state level? I know you’ve been there to the Capitol.
The Area Agency on Aging is a good resource, your State Department of Aging getting involved, meeting those people, talking to them. They have lists, and they keep the good and bad list at scale in between a facility. You need to report to them. Here in Austin, there’s something called Age of Austin. That is aging resources, extraordinary people you can talk to. People will hold your hand and help you get advocacy and free legal advice. People who will plug you into the support groups who are actively working and going and not having these conversations with legislature. The more that we can do that work with our Area Agency on Aging, our other aging community networks like in Seminole, Austin we had The Age of Austin or the Greater Area of Austin. If you want to find in your area where that is, contact the State Department of Aging Texas.
Get those resources, get plugged into them because you cannot do it alone. If you’re trying to hold your skilled nursing or assisted living or wherever you are accountable on your own, it’s like a drop in the ocean. When you report to your Area Agency on Aging, you get plugged in and then you find out, “Who are my aging advocates?” If it’s the Alzheimer’s association, and there are many, and you find people, get involved in the support groups, team up, advocate, do not go into a meeting with your administrator in that facility alone. We have in the support groups what we call them advocates.
Remember that your aging is a disability. By the time you are talking about why your mom needs to be in there, that means that she’s part of the intellectually disabled with the dementia. She’s probably already got some motor and mobility challenge. I know all the ones in Austin on the state level, your state department of disabilities. They have advocates that will do this for free and you need them by your side when you’re going to get changed in that facility. Do not do it alone.
Is it true that there’s a HIPAA form out and we were to ask the home if there are any cases of the virus in the home, that they do not have to tell us? Basically, it protects their home.
Texas wrote a higher HIPAA standard than the rest of the United States. I can tell you because I have a facility and I run a company healthcare. There is the federal HIPAA Law and every state then writes, “Texas made a stronger, more rigorous HIPAA standard than the rest of the United States.” Some states like to go lower, Texas went up. When we talk about HIPAA complaints and some of the information that we’re allowed to give out. In most states, I don’t have to get a QuickBooks software to do the HIPAA training and make sure that they’re certified. Our state is that much higher, even the software I use and my consultants and everybody. There is a higher standard. You have to be very careful not to compare us to the rest of the United States. That was the choice our state legislature made.
When you’re talking about a COVID-19 positive or negative test, that is part of that person’s medical record and that medical record only belongs to that person. That’s the rights. That person has to agree and sign off to share that information. When you’re looking at your county or your city public health records, that data has been scrubbed with the individual data and it’s been reported. It used to go through the channels that would drive right up to CDC. We have a new system, the data’s feeding on the federal level that the White House has changed. It has disrupted things now, but traditionally we report non-identifying data, healthcare data. Your mom, let’s say we don’t have access to. She’s just pulled without anybody knowing her name or anybody that could track that back to her, that it would be used against her in any way. That’s what you’re talking about. Otherwise, if I’m positive and I’m in a nursing home, I own that and that’s only my rights to share.
Whereas in other states, there’s more transparency?
Not every state takes Medicaid money or certain funds differently. That changes what legal linking up those laws are working well together or not. In here, we have a higher HIPAA standard and it’s one of the highest in the country.
I personally would want to know if someone is in my mom’s home, I don’t need to know who it is, but if there are cases going on, I would be concerned with that.
Go to your Area Agency on Aging, go to your State Department of Aging, go to City of Austin Public Health or Houston or your County Public Health and say, because you can get access to that. They will tell you how many violations that your facility has had for abuse and neglect. Go to those, get plugged into your advocacy groups for disabilities, they will be tracking and they’re fighting the fight here in the state and county and city levels in the state, especially in COVID for people like you and your mom and your families. The hospitals, there are some fights we’re having to have to make sure that when your mom would have to leave that skilled nursing and she needed to be hospitalized for COVID, we’re fighting the fight that you and your dad could go with her because she has a speech impairment. She has a cognitive impairment. Because of that, your mom’s chances of dying are much higher unless she has somebody that knows her and can interpret for her. A hearing impaired like me, I can’t tell what my doctor is saying, so I bought a clear mask and made those because otherwise, if I’m not handing those out to the doctors, I’m not understanding them. If I was confused, like your mom would be confused, how are they going to have information and communicate like they do with you? We’re fighting that fight in COVID, here at home but also nationally. We’re fighting that fight for our folks with dementia.
Communication is a key.
That’s advocacy. We’re teaming up with all the disability services in the state and nationally. Consider that oftentimes, we get caught in the dementia diagnosis and you forget. That makes my mom part of the intellectually disabled, which are dying at much higher numbers than anybody else in the country with COVID. Because of what you said, family is like, “What do I do?” That data is out there. It’s in your county and public health access. It’s in the Area Agency on Aging and in the State Department of Aging. Find out the regulatory and those support groups. There’s a list and you can know where your facilities fall. If you do it individually, “I will do it on my own,” you will not succeed in the goals that love is driving you to do better.
A lot of times, we feel like that we are out there as a lone ranger. We need to reach out to others in this fight for advocacy for our loved ones. If we want to get anything done, we’re going to get any answers.
The key to you is how you take care of yourself. You feed your soul. You advocate feeding your body. You feed your brain, your family. You have to read, always keep that balance. As a caregiver, get the support you need. Have these conversations with me or with others is fine. You found me, I didn’t find you. You did that and you’re helping others find us. Be prayerful, be mindful. Ask for what you need, but you have to take some time to reflect and stop and slow down because nobody can care for each other without caring for themselves and letting others help and care. This idea of individualism at all costs is hurtful to families and to each other. We need community.
I’m curious how you feel about this lockdown of the elderly at the homes? It’s an essential. Do you see any end to this?
If we could all get on the same page. At the heart of every human soul is the experience of love. I always come back to that. It’s the only thing in the world that I’ve learned to trust. My mom was mentally ill. My mother-in-law is like, “Who raised you?” I’m like, “God, the world.” I was a ping pong ball because of mental illness. I’m in your role since very little. At fifteen, a judge tried to make me take care of my mom, and I was a little too young. That’s so difficult and fragile. Once I was eighteen, I was taking care of her and we did go through your journey. I spent a whole lifetime, “Why do I advocate this?” It’s because it’s love.
I understand love and I understand love requires of us something greater than what we alone can give and provide. Why I think that’s important with the nursing homes? They’re in a tough spot because it’s contagious. Those who are caring for them are touching. I wear hearing aids. Can you imagine trying to disinfect everybody’s hearing aids coming on and off them every day with COVID, much less all the other stuff? Community spread levels are keeping us on lockdown. If we got on the same page and we all understand that we love somebody and let everything else come second. I am a caregiver and I’m a therapist. I always default to safety. I will take risk and there’s love, but I still need best practice. I need to be held accountable to the standards of best care.
That’s why the lockdown is going on is because we had such high community spread. Everybody, get together and get that community spread down. Get our kids, our grandkids, everybody. I’m an Army wife, so we do the hard stuff. Even if it feels stupid, do it. If there’s risk there, do it for each other. Get the community spread down. Let us get back to where everybody can come in and out of that nursing home. We don’t have to be dictators for life saying, “Did you touch this?” We can’t do that when everybody is visiting the home because we have too few staff and we don’t have security. That’s my take on it. Get together. We need each other and we need to love and care, but lives first. That’s where I am.
Loving each other, it sounds so easy to us.
It’s the hardest ideal we’ve been given to truly live up to, but it’s one of the most compelling reasons to do better, to sacrifice more, to give and to listen. Be quiet and listen. Let that space be okay. At the heart of it, we’re saying to each other, “Do you love your mom? Do I love my mom?” “Yeah.” “How can we help? It’s not that hard. What do you need me to do? If you’re asking me to do something that I feel silly about, that’s fine, but I’m here with you.” We need to hear from each other, “I’m here with you.”
I have to give kudos to my mom’s home because they had formed a parade every couple of weeks that they bring the residents outside, they sit them down and my mom’s in a walker, so she’s walking. They have 2 or 3 girls that have to take her out of the home. We all line up and decorate the cars and we go through. I can remember the first time they had the parade and my mom looked at me and she’s like, “I want to come and see you.” I lost it. The whole family and my dad because they were attached at the hip and they were that The Notebook couple. It’s a sweet marriage.
It’s what makes life worth living. We’re going to get through the other side, Carrie. Every cell in your body had to be wanting to lean into her and hold her. That’s the body and the hands that held you. That’s your dad. They formed you together. I can feel it. I want to lean into. I want to hold it so badly, but we’re going to get to the other side. She’s going to be alive. She’s not going to be hurt, so we can hold each other again. Kent and I with Imogene, we love her so much and we want to hold her. Kent is Army, so he’s getting too exposed and I’m healthcare, so I’m getting too exposed. We want her to be alive on the other side. We’re not going to take this moment now to ruin that opportunity, but we’re finding all kinds of ways to connect. She has become so much more technology-savvy with things for us to talk and be together. That’s the challenge. Love has given us an opportunity here to figure out new ways to be connected spiritually, emotionally, find the way. She loves you and she sees you. We’re going to get to the other side together or fight for that chance.Nobody can care for each other without caring for themselves. Click To Tweet
When I say come together, we’re already together. I don’t know what’s keeping us from feeling like we can’t come together, outside stopping. If any of us are finding ourselves getting to let things divide us, or that means people are unreachable or, “I’m going to give up on them,” try to take a breath and realize all of us were crying, every single one of us. A lot of people are yelling because there’s pain. Instead of crying, it makes them want to yell, makes them scream. They’re in pain. They’re scared. All coming from the same exact feeling that we were feeling.
It’s a love, a need for each other that we have and a care for each other that is hard for us to say or see, because we let all this. If you would unplug for media sometime, just a little bit, plugged in, listen, stay tuned to the world, but then unplug and ask yourself that feeling you had, the one that is so important with your mom, your dad, your family, your community. Each of us know that, and we know what it’s like. We need more than our family. Our family was fed through community relationships, through strangers who were kind to us, good Samaritans who we didn’t even know have done kindness to us.
Any little bit of hurt in humanity that has caused us, there’s been a whole lot more of those touch of strangers and people that have fed that love that you and your parents share and how you’ve gotten through your life. On this journey, it’s important that need. Don’t give up on each other, take a breath, remember and feel. Cry because honestly, that’s what it’s worth. It’s effort. It’s worth being able to feel that moving, compelling, something that you love enough to feel that sadness. I’m glad that I have another advocate and any way we can empower each other. State politics and the regulatory, they forget this. I’m going to say that you have been dominating that state legislature for a long time. You’ve got to hold each other to better standard. That’s what’s more inspiring them up.
We do need a few women in there.
I do love to support. My husband serves, we serve. Anybody who will step up serves. I am grateful for even when I vehemently disagree with them. This one guy in the legislature, he’s retired now. Every time I had to talk about him and when I bring up this issue, he’s like, “If it isn’t broken, don’t fix it.” I’m like, “Thank you for everything you do. How much more data do you need to see that it’s broke?” His metric was always such the industry was making money. I’m like, “This is where we need girls.” We know how to take and make the hem go longer in our kid’s pants. We know how to make the money go longer, but you don’t have to give up on the love or the art of like, “You look great and you feel great.” Don’t just look great, but feel great when you live in these care homes.
We’re quite the creative thinkers.
I do appreciate all of them but it’s that they can’t do it without us. If none of us are raising our voices and saying, “I’m here not only to beat you up. I’m here to support and get involved.” That’s sometimes when we get lost. We get discouraged and we forget why we’re there. If you realize that you’re there out of love, you have a lot more tolerance and they will get moved and inspired and move mountains for you. That’s where I can say with the legislatures I worked with, they’re doing a great job. The agencies, that resiliency that you need, they need it too because it’s tough to move those mountains, but they can, they have and they do and we have. We don’t forget that.
If there was no pandemic of the virus and there’s a reader out there who’s frustrated with their loved one in a long-term care home, perhaps there are no programs in place for any activities, they’ve witnessed various forms of neglect and abuse, what steps would you suggest they take to ensure their loved one is cared for properly? You’ve gone over a lot of that.
The first thing is you must speak up. Whatever feeling that you have from that is important, but try to take a few deep breaths. As immediately as you can, you document it and you report it, not to the care staff. You’ve got to go to the nurse on duty and make sure it gets in the record. Even if you’ve brought it up and talked to everybody and you’ve sat in with the administrator, unless it’s documented, it never happened. How do I do that? You make sure that the care staff knows and try to do your best. “I’m going to own it. I’m angry. I’m disgusted.” That emotion compels people to action. That’s not enough because that’s going to happen again as soon as you’re gone. You must go to the charge nurse and they’re very hard to get, and you’ve got to get it in the record that this was what you saw. Describe what you saw. If it’s a bruise, what size? If it’s blood, where? You’ve got to describe what you saw.
One of the things you can do is you can take pictures on your smartphone which will document the date and time, as well as the wound. You send that in an email to the administrator and to the social worker and you make sure it is. When you check in again, “Is it in my mother’s record? Is it in my father’s record? Is it in my brother’s record?” If it’s not in the record, you have nothing to stand on. Email and cc it, hold and put your emails if you know how to make a file or star them so you can go back to your record, print them out in a fiscal record. Make sure that you take that record to your Area Agency on Aging. There’s going to be your county and other city oversight people that you’re going to learn names of. You’re going to send it to the State Department of Agency. If you’re not getting things remediated, if they’re not fixing this after you’ve documented it and got it in the chart, you’ve sat and you’ve had these conversations.
The other thing I would do before you even go to the State Agency is to get an advocate. Your senior centers or if you’re a vet, get your VA, get somebody to help you find an advocate so you’re not doing this alone and there’s a witness. These are not lawyers that you have to pay. These are volunteers. AGE in Austin and Greater Austin has that. Family Eldercare has that here in Austin. Fortunately, I don’t live in all the cities that people are reading this, but you can find those resources. Make sure you have a witness. Make sure that you’re strategically finding out from what point they’ve sent you to, that they’re not sending you back and forth between two points. If it’s not been fixed and you’re not getting the results you want, and you’re getting sent back and forth, they’ve got you in a loop and you want to get out of that.
With a witness, with your documentation, you needed to get to the next level. You need to get above whoever they sent you to that sends you back down to the nursing home or to the corporate people. That list that keeps them in a good standing versus lower standing, that listing is in your State Department of Agency’s control, your State Department of Aging and the State Department of Health. You need to make sure that listing is going down and that you’re causing trouble with the good standing that they have on that listing that they care about violations. That violation isn’t going to get documented unless you have the documentation. Take your cellphone, your camera, get the name of the staff that you recorded to, write it down. Write the name of the nurse that’s on shift, your head nurse. You’ve got to document it.
If writing is a problem, use your voice memo in your phone. You cannot submit recorded evidence unless the person gave you permission to record them. That will set you back. If you’re recording your own notes and that you want those to be documented, those of you know how to do it, to make that go into an email and go to the Word doc, that way you’re not having to sit there and try to type. A lot of people don’t type or they don’t have time. Can you tell we’ve done this a lot? I know a lot of folks through this journey. I know the way effective change has been made, and that is the keystone to affect a change. You must document. You must have conversations in a respectful and dignified way, even when you’re wanting to lose your cool.
There are times to have that edge, but you’ve got to be careful when you’re slamming caregivers. When you’re slamming the frontline workers only and use kid gloves on the administration, I don’t mean take down your administration. You stand on your documentation. You stand on the communication you had in respect. I’m not saying don’t be irritated or angry. I’m saying use ‘I statements,’ “This is what I saw. This is what’s happened.” Do not start saying, “You did this.” They shut you down as fast and they’ll use it against you. Use your documentation, get your advocates. They’ll help coach you and mentor you through this.
That’s a helpful advice because it’s important. We’ve got to document, go to the right person, the people and keep our cool. That’s hard to do.
Go scream, shout and let it all out, then go have that conversation. Get the documentation at the time that you discover it.
I’ve been through this with my mom before, so I understand. There are many things that you said that I needed to follow-up on. It’s a great advice for our readers though.
It’s hard. Everybody, take care of yourself.
Hope, thank you for being a guest on the show. You gave the readers so much valuable information. Please let us know where we can get in touch with you like your website and social media platforms.
It’s www.CenterForMusicTherapy.com is our website and you can email us at Admin@CenterForMusicTherapy.com or (512) 472-5016. We’re on Facebook and on Instagram. We’re happy if you guys reach out and we can provide music therapy anywhere in the world. We are thrilled, Carrie. You were a delight and I want to champion you and support you. It’s worth it. The love that you have shared all these years is so worth in this journey and what love is leading you to advocate for your mom.At the heart of every human soul is the experience of love. Click To Tweet
Thank you so much, Hope. We appreciate your time. Thank you for all your hard work and making music therapy more available and giving the power of music to individuals who want and need it. You’re an absolute light in this world. I’m not sure what to do without you. God bless you.
Thank you. It’s been a delight to be on your show. I’m glad we met.
- Center for Music Therapy
- Movement Tracks Project
- Soundwell Austin (501c3) – Twitter
- Family Eldercare
- Facebook – Center for Music Therapy
- Instagram – Center for Music Therapy
About Hope Young
Hope Young is the founder and President of one of the most technologically advanced music therapy facilities in the world, The Center for Music Therapy, Inc. in Austin, Texas. She is also the Executive Producer of the Movement Tracks Project and the Executive Director of a 501c3, Soundwell Austin. She’s a speaker and consultant who’s been recognized nationally and internationally in such publications as The Journal of the American Medical Association, Shape Magazine, The Wall Street Report, and New York Times Bestseller: The Mozart Effect. Her company is celebrating its 30th year, and her vision for the next 30 years boldly leads a new generation in music therapy to create healthcare solutions through innovations in music technologies which bring the power of music to help, heal, and treat all the isolated and underserved communities of the world.