Have you ever wondered how to bridge the communication gap with a loved one with dementia? Understanding their world is not just about words; it's about connecting on a deeper level.

How to Communicate Well in Dementia Caregiving

0:02:33 Learning to Speak Dementia
0:07:47 Interpreting the Language of Dementia
0:11:38 Starting to Speak Dementia
0:17:27 Reframing Challenging Behaviors
0:20:53 Understanding the Why Behind the What
0:22:07 Behaviors as Communication

A Fresh Look at Dementia Care

In our latest episode, we uncover the essence of communicating effectively with individuals with dementia. It's a journey that requires patience, empathy, and a shift in perspective. By viewing dementia through a compassionate lens, caregivers can find joy and fulfillment in their role.

Speaking Dementia: More Than Words

The concept of "speaking dementia" is introduced, likening it to learning a new language. This approach shifts the focus from frustration to understanding, emphasizing that with the right tools and mindset, anyone can learn to communicate effectively with their loved ones.

Life Stories as Keys to Communication

The episode further explores the idea that every individual's life story holds the key to their current behavior and needs. Through engaging anecdotes, the importance of personal history in dementia care is highlighted. Understanding a person's background can unlock the reasons behind their actions, leading to more effective and compassionate care strategies.

Practical Strategies for Everyday Challenges

The episode also offers practical advice on how to apply these insights in daily caregiving. From reinterpreting behaviors as attempts at communication to adjusting routines that resonate with the person's past experiences, caregivers are encouraged to employ empathy and creativity in their approach.

Building a Supportive Community

Lastly, the importance of a supportive community is underscored. Whether through group coaching programs or online forums, finding a network of like-minded individuals can provide invaluable support, resources, and encouragement on the caregiving journey.

Conclusion: A Journey of Growth and Connection

Embracing the challenges of dementia caregiving with a positive outlook can transform the experience for both caregivers and their loved ones. By learning to "speak dementia," caregivers can unlock a new level of connection and understanding, making every day a little brighter.
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Transcript

Introduction

[0:01] Today's episode is episode 89 on how to communicate well in dementia caregiving.

And it is part two of a three-part series that I am doing related to dementia caregiving.

Part one was episode 87 on how to understand the changes of Alzheimer's and dementia.

And the next episode, today we're going to talk about communicating well, and I'm going to teach you that it is possible to learn how to speak dementia.

And then the next episode, after this episode, we're going to look at a repeatable process, an evidence-based repeatable process for you to follow in order to actually figure out how to help a person living with dementia and manage and cope well with challenging behaviors. behaviors.

This episode should be coming out at the beginning of March, and I'm super excited for you to be here.

Spring is definitely in the air in South Carolina, so let's go ahead and listen to today's episode.

Welcome to Dementia Caregiving for Families

[1:08] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path?

You're in the right place. On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors.

I'm Lizette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community. Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

Exploring Dementia Caregiving Series

[2:03] Today is episode 89 of Dementia Caregiving for Families. This is a second part of a three-part series that I started earlier in February.

The last episode would have aired on February 1st.

29th, which was Leap Your Day. So I'm super excited to have you joining me here again today because this is the second part in the three-part series.

Learning to Speak Dementia

[2:34] And today we're going to talk about how to communicate well in dementia caregiving.

And I'm just going to do a quick little recap as to why I started this little series because I did a presentation at a skilled nursing facility at the end of February, where I was speaking with the executive leadership about three mistakes that I commonly see people making related to dementia caregiving.

And the first one was not grasping that dementia actually follows a fairly predictable path and has shared root causes for behaviors.

And that we, the second mistake we make is we're not empowering people to quote unquote speak dementia.

And the third point I made in this presentation is that we are overlooking, a mistake that we're making is we are overlooking evidence-based practices and problem-solving solutions to actually decrease a person living with dementia's challenging behaviors, in quotes.

So, if you didn't listen to episode 87.

[3:46] I invite you to go back and listen to episode 87 because it's truly very valuable information to you if you are helping somebody living with dementia as a family caregiver because if you understand retrogenesis, it makes dementia and dementia caregiving so, so much easier.

But on to episode number 89, which is the second mistake that we are going to explore, which is not actually empowering people to quote unquote speak dementia.

Now, what on earth, Lisette, do you mean by that?

[4:26] How many of you guys have ever watched anything related to the UN?

You know, the UN Security Council, any of those types of things.

Now, a little known fact about me is my dad was a diplomat for the South African government growing up.

And his first post, his first international Post was actually in New York. He worked at the UN.

And so I actually have a photo of myself standing behind the podium in the Security Council, which we had access to through a friend later on.

I was an adult when I had that photo taken, which was kind of a unique and very special special occurrence, because not very many people can actually say they have been inside the Security Council at the UN.

So that was kind of a fun little side note, just so that you guys can get to know me a little bit better.

[5:26] This is one of the reasons when people tell me you have an accent, I always tell them, no, I don't have an accent, because I have my own accent.

I don't have an American accent and I do not truly have a South African accent, even though if you know South Africans well, you can pick up if you listen carefully that I'm originally from South Africa.

The reason I tell people I don't have an accent is because my accent is very a conglomeration of living all over the world in the last 53 years.

So back to today's episode where I'm talking about the UN.

Now, why did I want to bring up the UN?

Because if you've ever watched the UN's.

[6:13] Most of the people who are coming from a lot of these different countries, they only speak one language.

So how do they communicate? How do they communicate with one another at the UN when the language of choice is going to be English?

Or if a person is not able to speak English, in order for the rest of the community to understand what's being said is they have an interpreter.

So if you look carefully at the UN, when somebody is speaking, people who do not understand that language have headphones on, and there is a separate person sitting in a different room that is actually interpreting the two languages.

So they'll go from English to Afrikaans, which is a bad example because most South Africans speak English, but from English to a different language, they will have an interpreter if the person does not actually speak English.

Now, why is that important?

[7:11] Because the person who is the interpreter learned that second language, right?

Which means anybody can learn another language.

So anybody who understands that a person can learn to communicate with somebody else will understand that you can learn to communicate well by learning to speak the other language, right? right?

Right now for you, for purposes of an analogy, I serve in the role of your interpreter related to dementia and dementia caregiving.

Interpreting the Language of Dementia

[7:47] I'm the interpreter you have between what you see with the person that you're helping and being able to understand how they are trying to communicate well with you.

But what I want you to understand is that you can learn to speak dementia because all adults have the capacity to learn a second language, which is why the apps Duolingo and Babbel are doing so well right now is because people are learning to speak a second language.

It's possible to learn how to speak a second language. You just have to have a process.

So what we do when I am working with people is my role, my purpose is to be that interpreter, to teach you how to actually speak dementia. Because...

[8:37] Many, many years ago, I've had people actually say to me, but, you know, you make it look so easy.

You make it look so effortless.

You are a dementia whisperer, kind of like a dog whisperer, right?

Because I've learned to observe the person living with dementia, and I understand retrogenesis, and I understand what the repeatable process is and what I need to be looking for.

And so it makes it look effortless, right?

But what I'm trying to encourage you is that you can learn how to do this yourself.

You just need to have a guide. You just need to have a process.

Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop.

The topic of the workshop is three tips how to avoid challenging dementia behaviors, without stress, anxiety, or burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[9:59] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[10:13] I remember very distinctly one day in a hospital where I had 45 minutes with a patient and a family who were truly, truly struggling with some behaviors.

And I sat and I I explained retrogenesis and some of the skills that I'm going to teach in the third part of this series related to the repeatable framework.

And I taught this family this information. And at the end of 45 minutes after answering all of the questions that they had, one of the family caregivers looked at me and said, I wish we had met you years ago because all of a sudden this makes sense.

And it would have made it so, so much easier.

So if what I just said resonates with you and if you know other families that are struggling with somebody living with dementia that are overwhelmed and stressed, please invite them to this podcast.

Please invite them, share the podcast with them, subscribe to the podcast, listen to the podcast and implement something that you learn in each of these episodes because I'm truly working on giving you tangible ways that you can make your life easier as a family caregiver living with somebody with dementia.

But today's episode, we're going to look at how you actually can speak dementia. So.

Starting to Speak Dementia

[11:38] The three episodes are going to build on top of one another, and like I said last week, we looked at retrogenesis, and it's the predictable path that dementia follows.

And now we're going to learn how to start to speak dementia.

So where do you start? Where do you start to actually learn to speak dementia?

Well, you start with the person living with dementia.

[12:01] Why? Because it's their life story that's going to make all of the difference in how you communicate with them.

Now, what do you mean by that, Lisette? That sounds kind of cryptic.

Well, let me give you an example.

I will give you an example of the real actual person that I worked with many, many years ago in the middle of nowhere, South Carolina.

[12:23] Where I was working with him and his wife on trying to figure out some of the challenges that she was experiencing.

And one of the biggest struggles that she had at that time was that he would not take a shower.

And I promise I'm going to close the loop, but he would not take a shower excepting every seven to 10 days.

And it was pretty consistent. And how we figured that out was I had her do a dementia diary or a dementia log where I had her write down and track the behavior because by observing and watching the person, we can figure it out.

You just have to have a structure, a framework in order to do that.

So I had her write down when he would take a shower.

He would not take a shower if she asked him to take a shower.

He would not take a shower if she was badgering him and trying to get him to go.

He would get very frustrated and angry and and belligerent with her, which was his way of communicating, I didn't want to take a shower.

But I had her write down because she told me.

[13:32] He would spontaneously go take a shower, and she couldn't figure out why he was only taking a shower every seven to ten days.

So I started with his life story, and I asked a lot of questions specific to him and how he had grown up.

Because if you take retrogenesis, and now we're going to put retrogenesis and a person's life story together.

If you take retrogenesis and you understand this person is slowly moving backwards through their life history, then all of a sudden you just have to try to figure out where in their life they are.

And I asked her, so tell me about how he grew up.

Well, come to find out he had grown up in the middle of West Virginia, in a very rural part of West Virginia.

He was in his 80s. He'd been born in the 1930s. He was one of seven, eight, or nine children, I don't remember, and they never took a shower.

They took a bath, and they only took a bath once a week on a Saturday night right before church on Sunday.

That was how he grew up. He never took a shower.

He only took a bath, and he was the last child in the line of seven or eight or nine children, and they all used the same bath water.

[14:53] Because they couldn't afford to replace the water for every single kid.

So the ninth child had the dirty, cold water.

No wonder he didn't want to take a bath. But if we didn't understand that that was his life history, that was how he grew up, it made his behavior seem very irrational, rational, very not practical, you know, because he'd taken a shower his whole entire life thereafter as an adult, he would take a shower.

But then we started to do a little bit further digging. One of the things we noticed over time.

[15:32] That if she told him every single time I was coming as his therapist, because I was working in home health, that he would take a shower.

So we were able to connect together the fact that he still had a social constraint.

He understood the social norms and values of being clean for a visitor.

[15:50] Or she noticed that if a friend was coming over to take him out for lunch, that he would spontaneously take a shower.

Wouldn't take a shower for her asking him, but if he knew that there was a person coming so we were able to learn how to start to speak with him related to showers now there's another part of this in that part of my job as the person working with her as the at that time occupational therapist is managing her expectations because she had an unrealistic expectation that he was going to spontaneously take a shower every single day because he had, for the last 75 years, 80 years, taken a shower every single day, but he didn't when he was a child.

And so my job and my role was to help her understand retrogenesis, was to help her understand how to look at the situation and really dug into his life story to figure out what possibly could be contributing to his reluctance to take a shower but once we figured it out and we managed her expectation all of a sudden her frustration all of a sudden her aggravation with him and and not understanding why he wasn't able to still take a shower the way he always had significantly helped decrease her her own stress levels because.

[17:18] A person who's quote unquote demonstrating behaviors, that is their way of trying to communicate something to you.

Reframing Challenging Behaviors

[17:28] Every single living behavior a person has is an opportunity for us to figure out how to communicate with them.

So let's reframe it from being a challenging behavior to being an opportunity, an opportunity to communicate.

So we start communicating. This This is the second point, right?

[17:51] The why behind the what, right? The why behind the what?

Because we start communicating with a person when we are actually still in our mom's belly, when we are in utero, we are starting to communicate with people.

So the why behind the what is, we have to figure out why a person is doing what they're doing.

And the only way we can figure out why they're doing what they are doing is if you understand their life history.

Once you always understand that a person is trying to communicate something, the why behind the what becomes significantly easier.

And so, for example, I'll use my own story with my dad.

Earlier this last year, we had to take away my dad's car because he wasn't safe to drive a vehicle anymore.

And that was a very stressful and tumultuous experience for me.

But what ended up happening is that every single time I would go into my mom and dad's house, if I wasn't.

[19:01] You know, cognitively keeping it in the front of my mind that my dad had, through this process of retrogenesis, that he was losing his ability to control his own emotional experiences, that I would go back into our life history and step into it.

Because we had a very, we had a very, what's the word, what's the best description I want to use?

We had a very tumultuous teenage years. My dad had been a diplomat in the South African government.

And then when they moved, we were in boarding school, my sister and I, which opens up a whole can of worms of a whole lot of other conversations we can have related to that.

But within the constraints of living in boarding school, I pretty much had turned into an adult at the age of 12.

As long as I followed the rules, I was given a lot of leeway and latitude to choose what I wanted to do.

[19:57] And so when my parents moved back from Sweden, my sister and I moved back into the house and I was about 17 years old.

And all of a sudden my dad kept telling me I couldn't do things and I was chomping at the bit.

And we, every single evening, I remember bawling my eyes out, getting up from the table and running out into, you know, going to my room.

Now, why is this story important because my dad's life story and my life story overlap, right? It's not in isolation.

[20:32] And so when I would go to my mom and dad's house, if I wasn't cognitively keeping it in front of my mind's eye, that my dad is not able to control his emotions anymore, and I just went back into our normal way of communicating, then inadvertently I would step into it and I would get him angry.

Understanding the Why Behind the What

[20:53] But once I started to recognize that his anger was his way of trying to communicate his frustration with the situations that he was in related to losing his independence and at the point in time that he is in his journey, it made it easier for me to put into place some of the structures and things that I will teach you in the next episode, which is the repeatable framework.

Because I, as the care companion, I, as the person walking into his house, was actually contributing to a lot of the frustration and anger he was experiencing.

And it is a reasonable expectation for somebody to be angry as they're losing some abilities that they've always had, or that they've had for the last 70 years.

Well, not quite 70 years, 60 years in driving a car, right?

So the second point I wanted to make today is that the why behind the what.

If you understand the why behind the what, a person is.

[22:01] Doing or saying or what you're seeing, then it'll make it easier for you to figure out how to speak dementia.

Behaviors as Communication

[22:08] And then the third point, which I kind of interwove throughout this episode today, is that most behaviors, most challenging behaviors that we see are a person's attempt to communicate something.

[22:23] It makes sense to them. It doesn't necessarily make sense to us, but it does make make sense to them.

All humans are created to be social creatures.

Did you know that caring for a person with dementia doesn't have to be this hard?

If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors without stress, anxiety, or burnout.

I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.

[23:16] If you'd like to register, sister message me the word workshop on instagram or check out the link in the show notes below right from the time we are in our mom's belly if you if you guys have had kids or if you've ever been pregnant you know babies inside the womb will respond to music to somebody touching touching from the outside to talking.

Like if the dad is talking to mom's belly, the baby may kick or move.

It's right from inside our parents, inside our mom's belly, we are created to be social creatures.

And we start learning communication right from in utero. When we're a a baby, we learn to communicate.

[24:08] Babies will coo and goo-goo-ga-ga, and then they'll stop, and you'll say something to them, you'll smile at them, and this dialogical interaction goes back and forth for our entire lives, all the way through even a dementia caregiving process.

And I will use an example.

[24:29] I was recently very blessed to be on a dementia-supported cruise as a staff member helping support nine people living with dementia.

And there was a gentleman on this cruise who is fairly moderately impaired already, and a lot of what he is saying doesn't make any sense at all.

He's still using words, but the words put together don't really always make sense.

Sometimes they do, Sometimes they don't. And part of my job on this cruise was to do the respite, to be the person with the people living with dementia so that the family caregivers could take a break and go to either a support group or just go have fun.

And one of the best experiences of my life was actually playing cards with three of the people on this cruise that all had had moderately severe dementia.

[25:28] And as a clinician, as an OT, my job was always to correct, to always improve, to always try to change and make it better so that the person is improving.

But because I'm not functioning in that role anymore, I had a blast.

We played a game of cards that had no rules. It was lovely.

All four of us had our hands and the people who I was playing cards with had no concept of the rules of the game anymore.

So in order to make it a wonderful experience for them, I was communicating with them at the ability that they were able to communicate, which was.

[26:10] Rules didn't make sense anymore. So let's just play a game of cards.

And the one gentleman would say, now, which card's the best?

And I would say, well, what do you think?

And he'd say, well, this one. I'm like, well, that sounds like a really good option. And he would put it down, and the next person would.

And everybody had a blast, and we were communicating on their level.

Now, I want you to consider, had I been constantly correcting him, right?

[26:39] Constantly correcting them all the time about the fact that they weren't playing the game of cards correctly.

What do you think likely could have happened? The person probably would have started to get agitated with me or angry or try to get up and walk away, which is their way of communicating with me that I am frustrating them, that I am not communicating on their level.

So I want you to to think about every single behavior that you see a loved one with dementia is having is some way of them trying to communicate with you something.

And the way that you figure out what it is that they are communicating something to you is through figuring it out using their life story, their their history, where they grew up, what's going on, your history with the person, all behavior.

All behavior is trying to communicate something.

[27:39] I'll use this as a last example before I move on.

Most, if you take retrogenesis in, if you keep retrogenesis in mind, all of us have seen that kid in a grocery store that is throwing a temper tantrum, right?

Every single one of us have seen that. We've seen kids get angry and throw things and be frustrated, right?

Why are they doing that? That is their way of trying to communicate to you, and they don't have the words yet, that something is frustrating them, that they're angry about something, that they don't have the emotional capacity to manage it at this time.

And whether it's right or wrong or otherwise, why is they are trying to communicate with the parent that something is bugging them. They're not doing it in the right way.

[28:33] Don't get me wrong. A kid throwing a temper tantrum in the grocery store is never a good thing.

Ask my daughter what happened when she stamped her foot at her mom.

It was not pretty, but we will leave it at that.

So the third point is most behaviors, and I say most behaviors because some of them are due to actual physical changes in a person's brain.

But most behaviors are a person living with dementia's attempt to communicate something with you.

Invitation to Group Coaching Program

[29:02] So my invitation to you today, if you were listening to this episode, and it's still before March 31st, we are doing the founding 54 members of my low-cost group coaching program, where if you join for one investment at the beginning, for the lifetime of the person that you joined for, for their entire lifetime, you will have access to the coaching.

Now, Now, why is the coaching important?

Because you don't know what you don't know, right?

It is ongoing support related to the constant changes that you're going to be seeing.

And it is somebody who can help you from the outside looking in, figure out what you need to do to change it.

It is actually where I teach you to speak dementia.

I'll use one of my current clients as an example.

[29:55] She had an episode over the past week or so, past two weeks or so, her mom demonstrated some very radical quick changes.

[30:04] And she was working with her mom. And one of the best things that she ever said to me, what my client said to me is, as this was happening, Lizette, I heard you in my head.

And I didn't get angry. And I didn't get upset.

And I knew what to do. And I knew what to say to my mom to make my mom feel better.

And it was wonderful having learned these skills, and I'm paraphrasing now, but she's learned these skills to be able to recognize what is going on.

And I've taught her a framework, a very simple, repeatable framework that she can run through her head to try to figure out how to speak dementia to her mom.

So I invite you, if I resonate with you, if you feel like this is a good opportunity for you, don't delay anymore.

This process is going to be starting. this actual group is starting at the beginning of March, but the special is open for a one-time lifetime investment until the end of March.

At that time, I'm going to close it down. The program will still be open.

Then it won't be lifetime access. Then it'll be a year-long access.

So I invite you, if you're even sitting on the fence with this, hop on a phone call with me, email me at lizette at thinkdifferentdementia.com.

[31:29] The link will be in the show notes, but just email me and we can set up a time to actually have a conversation.

I can guarantee you one thing, I am not interested in having the wrong people in the group.

I'm interested in having the right people in the group. What are the right people?

The right people are people who are proactive, who want to be able to do this in an easier way because the evidence-based.

[31:56] Practices show that you can have a dementia caregiving process without burning out, without losing your own life and health in the process, with being able to manage challenging behaviors.

[32:10] And within the first 90 days of being in this group, we will have gone through where you are, and then we will have gone through the capacity to care, which is the module in my my program, where we teach you, where I teach you to speak dementia, where I teach you the repeatable framework in a very practical, tangible way for you to be able to actually manage any challenging behaviors that come your way.

And then the rest of the program is working out after that, but we do it in a community and we do it with coaching.

And the coaching component proponent is the one that will go away after the founding 54 members at the end of March.

So if you're ready to work on this, make your life process a little bit easier, I invite you to hop on a call with me. There's no pressure.

I do this to serve, and I am excited to be here because there is so much we can do to make this journey easier for you. We're just not doing the the right things.

So hop on a call with me and thank you for listening to today's episode.

The next episode that we are going to have is where we're going to look at the mistake that people commonly make in overlooking the benefits of the evidence-based and problem-solving solutions to actually decrease a person's challenging behaviors.

[33:35] So I invite you to listen to part three at the next episode, which will be coming out after this one.

If you haven't listened to episode number one. It's episode 87.

I invite you to go listen to it. It'll make the whole dementia caregiving process so much easier for you if you just understand metrogenesis.

So thank you for being here today. I look forward to serving you in the next episode.

And if you like this, subscribe to the podcast and share it with other people.

Give me a review. you. A written review means a lot to me, and I will see you in the next episode.

May the Lord bless you and keep you.

Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you.

You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.

It's a positive and proactive space to navigate dementia caregiving together.

Get practical tools and find support, but without the verbal vomit.

Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis.

So join today and see you next time as our flight takes off.

Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

Join our Facebook Group at: https://www.facebook.com/groups/1301886810018410 

Become a  Member of Our Exclusive Program!  https://www.dementiacaregivingmadeeasy.com/start

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

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