A Tapestry of Hope: Living Well with MCI

Guest Lynn Ross shares her personal journey with mild cognitive impairment, her professional insights as a social worker, and practical tools for supporting individuals with dementia and their caregivers. Her conversation with Hope Floats host Shoshawna Rainwater offers hope, strategies for adaptation, and ways to foster meaningful connections despite cognitive changes.

Links

Dementia Spotlight Foundation - https://dementiaspotlight.org

Dementia Together - https://dementiatogether.org

Contented Dementia by Oliver James  

SPECAL Method- https://contenteddementiatrust.org/what-is-the-specal-method/ 

In this episode, Shoshawna mentions the Physiological Sigh—a fast, free, and scientifically proven breathing tool you can use to lower anxiety and calm your nervous system in real time.

To do it, take two deep inhales through your nose (one deep breath, followed by a quick "top-off" inhale), and then let out one long, slow exhale through your mouth. Repeating this just a few times immediately slows your heart rate and releases stress.

Want to dive deeper into the research? Check out these credible resources:

• Read the Stanford Article: Learn how this breathwork triggers immediate relaxation in this listener-friendly breakdown from Stanford Medicine News.
• See the Data: Check out the official 2023 Stanford University study published in Cell Reports Medicine via PubMed. It proves that 5 minutes of daily "cyclic sighing" improves mood and reduces anxiety better than standard mindfulness meditation!
• The Brain Biology: Curious about how our brains naturally use this tool? Read how UCLA neuroscientists discovered the exact brain cells responsible for this reflex in the UCLA Newsroom.

Transcript

A Tapestry of Hope: Living Well with MCI 

Summary

Guest Lynn Ross shares her personal journey with mild cognitive impairment, her professional insights as a social worker, and practical tools for supporting individuals with dementia and their caregivers. Her conversation with Hope Floats host Shoshawna Rainwater offers hope, strategies for adaptation, and ways to foster meaningful connections despite cognitive changes.

Links

Dementia Spotlight Foundation - https://dementiaspotlight.org

Dementia Together - https://dementiatogether.org

Contented Dementia by Oliver James  

SPECAL Method- https://contenteddementiatrust.org/what-is-the-specal-method/ 

In this episode, Shoshawna mentions the Physiological Sigh—a fast, free, and scientifically proven breathing tool you can use to lower anxiety and calm your nervous system in real time.

To do it, take two deep inhales through your nose (one deep breath, followed by a quick "top-off" inhale), and then let out one long, slow exhale through your mouth. Repeating this just a few times immediately slows your heart rate and releases stress.

Want to dive deeper into the research? Check out these credible resources:

●      Read the Stanford Article: Learn how this breathwork triggers immediate relaxation in this listener-friendly breakdown fromStanford Medicine News.

●      See the Data: Check out the official 2023 Stanford University study published in Cell Reports Medicine viaPubMed. It proves that 5 minutes of daily "cyclic sighing" improves mood and reduces anxiety better than standard mindfulness meditation!

●      The Brain Biology: Curious about how our brains naturally use this tool? Read how UCLA neuroscientists discovered the exact brain cells responsible for this reflex in the UCLA Newsroom.

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Interview

DISCLAIMER  (00:00)

Hello, Hope Floats listeners. The content of today's podcast is provided for general information and educational purposes only, and does not constitute legal, financial, medical, or other professional advice. Always consult a qualified professional about your specific situation. Now, on with the show. 

Shoshawna Rainwater (01:18)

You're listening to Hope Floats, the essential companion for the dementia caregiving journey. Whether you're navigating a new diagnosis or managing the complexities of late stage care, Hope Floats is here to provide the tools and perspective you need to stay centered and even hopeful. I'm your host Shoshawna Rainwater. 

As a licensed clinical social worker with over 20 years of experience, I've guided hundreds of families through this transition, but I've also walked this path, personally,   as a caregiver for my own parent with dementia. I understand the clinical landscape of dementia, the emotional weight of caregiving, and everything in between. I'm so glad you're here. Let's jump in.

Today we have a real treat. I'm interviewing a social worker, Lynn Ross. She  does part-time work with a couple of nonprofit organizations in the Atlanta, Georgia area. Lynn worked for the Department of Neurology's Movement Disorder Program at Emory University for many years, and in that role, she provided information, education, and support to individuals living with primarily Parkinson's disease and other movement disorders. 

She retired in 2017 but got into the retirement experience and realized she really missed the work and missed contributing. This was partnered with some challenges, in that, several years before retirement, Lynn noticed some memory changes that were occurring in her. And as many of us do, attributed those to things other than the possibility of dementia–thought perhaps it could be related to aging or to the stressful work environment that many of us find ourselves in.  But when symptoms continued and then increased after retirement, Lynn saw a cognitive neurologist and was diagnosed with mild cognitive impairment. 

So Lynn is joining us today to talk about her experiences as an individual living with mild cognitive impairment and also to talk about the really valuable work that she continues to do to support people who are experiencing dementia and also build understanding with the individuals who are helping care for them. So, Lynn, welcome. We are so happy to have you today.

Lynn Ross (02:57)

Well thank you. It's a pleasure to be here. to have the opportunity to share my experience and my work life, which is very, very important to me. And I'm so blessed that I can continue to work in this space.

Shoshawna Rainwater (03:12)

Yeah, and I realize Lynn, you represent a really unique double perspective of having the clinical expertise of a career social worker and also the lived experience of someone navigating mild cognitive impairment. You spent decades as the social work expert in the room, helping families navigate neurological diagnoses. What was the moment like when you realized your own memory issues weren't related to stress or aging, but something more than that? Tell us about that experience if you're willing.

Lynn Ross (03:51)

Sure. Well when I started out in 2017 at Emory, there were nine movement disorder specialists in the program; when I left there were nineteen and I was the only social worker. So I just really felt like it was the work. I really thought, when I get out of this situation, all of these memory problems.  One of the things that really bothered me really more than memory was losing things and not being able to find them. And I know we all say, you know, you can't find your keys or whatever; but this was spending an inordinate amount of time looking for something that was right in front of me, such as paperwork or a phone number or whatever. I knew I'd seen it. But I just couldn't find it.  Going through my files, I would have to go through every file trying to find something because I had misfiled it, but didn't notice when I filed it that I was, you know, placing it in the wrong folder. 

I just spent so much time that last year, and I thought “this is different. This is not like the usual forgetfulness or misplacing something and not remembering where you had it. This was a little bit more serious.” My mother had been diagnosed with vascular dementia and  a grandmother with Alzheimer's and so you know I knew the different symptoms and that type of thing. But this was just a little bit different. So that was one thing that really made me realize after about three months I guess after I retired that it wasn't getting any better. And I needed to see the neurologist and find out what was happening.

Shoshawna Rainwater (05:43)

Yeah, you know, Lynn, many people avoid seeking a diagnosis out of fear. And I'm curious how your background in neurology may have influenced your decision to seek diagnosis.

Lynn Ross (05:58)

Well, I was very lucky that my office was on the side of the hallway with cognitive neurology and I  shared an office with the cognitive social worker. So I had a lot of interaction with that department as well as the movement disorders department where I was. 

I also–from my beginning in the nursing home–had really found out that dementia was a fascinating thing. I was not afraid of it. I think that's the problem with so many people. They hear the word and they just shut down. “That's it, that's the end.” And I knew from my experience that there were things that could be done, there were programs. And working at a university like Emory, where so much research was being done, that was another plus to me that I knew that people were working on it and you know, there was hope. 

Shoshawna Rainwater (06:59)

Yeah. What an interesting vantage point you had that many people don't have. And and when you say nursing home, this was early in the career you were working, that's right, hands-on in a nursing….

Lynn Ross (07:12)

In 1994 I started in a 99-bed nursing home and I had never been around anyone with dementia. That this was totally new. And it was just fascinating to me how sometimes the situations were so totally different from where we were and what we were actually doing. And these people were very convinced that that's what was happening, and I learned early on not to argue.

I went along with some really peculiar situations sometimes; but I found out that was the best way. Just agree and redirect and it'll turn out all right.  

Shoshawna Rainwater (07:57)

Really interesting to me because I would say you were pretty immersed at one point in your career in working with individuals with dementia and you really saw the potential and the possibility of connection with people, if you could meet them where they were. 

Lynn Ross (08:17)

Right, definitely. But of course at that point in time I had no frame of reference that that's what I was doing. 

Shoshawna Rainwater (08:25)

Right.

Lynn Ross (08:26)

I was just jumping into a situation and trying to keep them from being so stressed and so agitated and so it just seemed like going with the flows seemed to be the best way. And sure enough it turns out that's what works the best.

Shoshawna Rainwater (08:44)

Yeah, and I I know I want to talk with you today about the work that you do current day, but before we go there, maybe we could talk a little bit more about your experience with adjusting to the mild cognitive impairment diagnosis. You have shared   with me that you proactively made a couple of really significant moves; I don't mean moves like relocation–although one of these significant moves was a relocation; but you proactively decided to stop driving.  

Lynn Ross (09:16)

Right.

Shoshawna Rainwater (09:17)

And you also made a proactive move to independent living. How did you come to make those decisions? And how did your professional knowledge of things like isolation and poor nutrition and those pieces that we know can contribute to poor outcomes and worsening brain health. How did those make you make those those calls and decisions earlier on,  before you were in crisis?

Lynn Ross (09:43)

Well, I think my situation is a little bit unusual. I've been a widow for twenty-five years and I don't have any children. I have one sibling that lives in California, but she's not here in town for me to really depend on. So, I had to make the decisions. I had to be the one to make sure all my legal affairs were in order.  And I had worked for an elder law attorney. I mean, my background has really, really pointed me in the direction of getting the help that I've needed. And I think that's one reason I can be as calm as I am about the situation, because I have got the knowledge, I've got the information. I knew I needed to get the legal things in order. Did that years and years and years ago.

So t he background that I've had has really led me to be comfortable making these decisions, understanding the system that we live in, understanding that, and in fact, the attorney that threw up all my paperwork, he's a lot younger than I am, so I asked him if he would not necessarily be my guardian. I mean one day he might be, but he's on all my paperwork.  

Shoshawna Rainwater (11:02)

Mm-hmm.

Lynn Ross (11:03)

He is my power of attorney. All those things. Of course my sister will have input and of course she knows what I want and that type of thing but if the decisions will be up to him; he'll be the one to call. So that helped me decide that this is up to me. The doctors and nurses, we talk and they agree this is the thing you need to do. And that's what I've done. 

Now as far as the driving was concerned, I had been going down one way streets and I had run some red lights and done some things that I knew were dangerous, but I really didn't see it as part of the dementia.  

Shoshawna Rainwater (11:42)

Hmm.

Lynn Ross (11:44)

Maybe I was distracted or whatever. But then the police stopped me twice. They were all very nice, but I thought after the second time, I said, “now this is ridiculous. You know, I can't work with people and tell them that they need to take the car keys away when I'm out there being stopped by the police for doing the same things.” So I went to an occupational therapist and had a driving evaluation just to make sure. And she agreed. She said, “I think this is a wise move.” You know, she said “you don't have to do it tomorrow, but I think this is what you need to do.” So that was it. I went home and parked the car. 

And I'm like people  who have been diagnosed with dementia, I could still drive but I'm not gonna take that chance. I just couldn't live with myself if I hurt anybody else or myself.

Shoshawna Rainwater (12:40)

Boy, that, what I hear in that, Lynn, is such a willingness to kind of look this squarely in the eye and acknowledge and accept a significant– in many people's minds this is a significant hit to autonomy. 

Lynn Ross (12:59)

Definitely.

Shoshawna Rainwater (13:00)

And it I I don't know you really well, but I know I think I know you well enough to know that you do care about your autonomy, but you also have a realistic outlook on the fact that as our brains change because of neurological conditions, we do need to find ways to be safer and keep the people around us safer. And that really strong drive that a lot of us have to just be solely autonomous and never give up the things that we've done was not realistic to you.  

Lynn Ross (13:33)

Oh, not at all.

Shoshawna Rainwater (13:34)

And you said something at the beginning of this question, which was that your situation felt a little bit unusual in that you are widowed. You were widowed some time ago, and that you don't have children. But I also think, at least in the work I do, I'm realizing that's not that unusual for us to not have really big teams or benches full of potential kin that can just step in and fill in on these roles. So you're not alone in that and you found ways to go ahead and complete the things that were needed to be like these powers of attorney, I'm imagining, and a healthcare advanced directive, and find other people who can step into those roles who are not kin. I would say it's not an unusual situation for many of us that we don't have these really large kin, K-I-N, networks to sort of have like this default team come.

Lynn Ross (14:39)

Right. The family dynamic has changed so much in the last twenty-five, thirty years that a lot of people live a long way from their family and just can't depend on … 

Shoshawna Rainwater (14:52)

Yeah.

Lynn Ross (14:52)

…having somebody be able to take you places. You know, I have to use Uber and Lyft or the kindness of friends to take me anywhere. 

Shoshawna Rainwater (15:02)

Mm-hmm.

Lynn Ross (15:03)

And so yeah, it makes a big difference. But I, like you say, I'm definitely not alone. Definitely not.

Shoshawna Rainwater (15:11)

I think maybe this is a good segue to talk about your evolving identity as a person living with mild cognitive impairment. And I know you've said to me that you are this the same person that you have been, right? That you have a health condition…

Lynn Ross (15:30)

Mm-hmm.

Shoshawna Rainwater (15:30)

… that changes some of the aspects of how you need to live your life. But I'm curious about how you view what I experience in our communities as stigma…

Lynn Ross (15:44)

Right.

Shoshawna Rainwater (15:45)

About having a cognitive diagnosis and that   having dementia just means the end of so many things. Autonomy, contribution, those pieces. Say a little bit more about how your identity has changed, but also how it remains the same.

Lynn Ross (16:01)

Definitely. Well I have tried to see this as I'm having to adapt. I haven't had to change. I just have had to adapt. And I don't like the word “cope.” To me cope means you're just getting by. You're able to do things but it's not as well as you would have done it before; it's not as fulfilling as it would have been. And in some situations that's true. But to me adaptation is just changing the way you do things.  

Shoshawna Rainwater (16:39)

Mm.

Lynn Ross (16:40)

The example I use is when my husband was sick and I had to sit in the hospital and that type of thing, I had always loved to sew. Well, couldn't do that but I could do hand work. So I started quilting, making quilts by hand. And it was something small I could take with me. It still fulfilled my need to be a seamstress or work with my hands, be artistic, creative, whatever. But yet I was still where I needed to be in case there was a situation that I needed to take care of. So it's that type of thing that I think about now. 

I joke I still quilt but now I do it with the sewing machine. But I have a seam ripper like everybody else does. And if I make a boo-boo, all right, it comes out, you know. Nothing is final. And that's kind of the way I try my best to see every situation as still capable of doing an awful lot. I just have to change the way I approach things sometimes.

Shoshawna Rainwater (17:44)

Yeah.

Lynn Ross (17:45)

I can still do an awful lot.

Shoshawna Rainwater (17:49)

Yes, right. You have so many more retained abilities than losses. And I love that reframe. That's really helpful to understand the difference between coping, which does have sort of this grasping quality,  in my brain, of “I'm just like slogging through and getting by,” versus adapting, changing…

Lynn Ross (18:05)

Right.

Shoshawna Rainwater (18:05)

…and morphing into something new, no less valuable but new. 

Lynn Ross (18:16)

Yeah, definitely, definitely. Still getting the job done, but just a little bit different angle, we'll say.

Shoshawna Rainwater (18:28)

And you adapted-  it sounds like there was something about the sewing experience. By the way, my worst grade in high school was simply sewing. I mean it was a really hard class for me. so I think about sewing as having a lot of complexity. but it sounds like sewing became more difficult with the brain changes you were experiencing. And so you adapted into a quilting hobby. Am I understanding that right? 

Lynn Ross (18:51)

Right. Because you know, following a pattern and that type thing, there were a lot more possibility for errors. But with quilting, it's really kind of hard. And I basically make up my patterns as I go along.

Shoshawna Rainwater (19:04)

Oh. okay. So there's more of yeah, like you can riff on what you're doing much more so than trying to follow a pattern. Got it.

Lynn Ross (19:11)

Right. I can be really a free spirit with my quilting. Nobody knows if that's what it was supposed to look like or not.  

Shoshawna Rainwater (19:19)

Yeah. I love that. 

Lynn Ross (19:20)

And I use my quilting as a contribution because I donate all my quilts to Project Linus, which is an international agency that we give blankets to children in crisis. So here again I'm using something that I can do and I’m able to still contribute. And I've made over 90 quilts in about three years. So it's not like it's not like I'm sitting around doing nothing. I'm quilting.

Shoshawna Rainwater (19:55)

Yeah, and you've connected with an organization that needs and utilizes this product that you're putting forth into the world that brings you joy. Like creating the product, the quilt, brings you joy and satisfaction. And then it's being gifted to people in need–other human beings who need comfort. I love that. What a great example of adaptation. 

Lynn Ross (20:18)

Right. Yeah, I think so. It is really the past few years is I mean I just love people when they find out that that's what I do, I rarely buy any material. People are so generous and donate fabric and so it's really been a win-win in a lot of ways; but I enjoy just thinking about the little children that are as I'm making it, you know, they're gonna enjoy the quilt and hopefully it'll be a keepsake. You never know.

Shoshawna Rainwater (20:48)

Before I ask you to share your wisdom about the work you do currently in supporting caregivers and other individuals living with cognitive changes, is there anything else, Lynn, that you think is important for people to understand about your experience and living well with MCI?

Lynn Ross (21:11)

Well, I think the big takeaway I would like people to have is I'm still the same person. T  hat hasn't changed. I still value the same things. I still enjoy doing the same things. I think when people hear the word “dementia,” they just think I mean, just like it's been the long goodbye. Well, I don't feel like this is goodbye. I mean every day is important to me and every day I'm doing something that I enjoy. Sure, I have to change the way I do some things. And just like moving into this independent living community, giving up a home was difficult. ICongregate living is what it sounds like, congregate living. 

But, I still do all the things that I used to do. And as I said, I still have the same values. It hasn't changed the basic person that I've always been.

Shoshawna Rainwater (22:14)

Yeah.

Lynn Ross (22:15)

And I think that's what people think; that diagnosis, you're just no longer a person. And that's why there's so much stigma. People don't wanna tell people that they've been diagnosed because of people's reaction and the way they start treating you so differently. Families start taking things away. And of course there are situations where they need to. But there are other situations where, definitely we should still have the right to express what we want, what we need, and that part about us hasn’t changed.

Shoshawna Rainwater (22:50)

So you and I are part of a clinical consultation group of social workers through the International Neuropalliative Care Society that meets monthly. And you were the first person to really represent and make me pause. And it was an “aha” moment for me when we were talking about this piece around stigma and not sharing. And you said, “you know, people who have been given this diagnosis, all they hear is negativity. “ 

Lynn Ross (23:20)

Mm-hmm.

Shoshawna Rainwater (23:21)

There is never an underscoring around what remains, what continues to be true, how to best support these folks. And that contributes to an experience of feeling downtrodden.

Lynn Ross (23:34)

Oh, definitely. Definitely. 

Shoshawna Rainwater (23:36)

I think that's a really important thing for us to understand about individuals who have received this diagnosis.

Lynn Ross (23:42)

And it's just I think people's reaction to you. I mean I've had people say “you don't look like you have dementia. Well, you know, “what does that look like?” That people have this misconception that your behavior is gonna really change, you're gonna, you know, start doing things that the family's gonna be embarrassed about, you're gonna say things or whatever, rather than thinking  that this person really hasn't changed that much; they just, as I like to say, “see the world differently.” It's not that big a difference. 

Shoshawna Rainwater (24:17)

Yeah, you are a living example of that.

Music transition

Shoshawna Rainwater (24:29)

So I would love to hear your perspective on the caregiver experience. And I would love to hear about the work that you do, particularly through–  so you're a member of the advisory council for the state dementia plan in Georgia.

Lynn Ross (24:47)

Right.

Shoshawna Rainwater (24:48)

And you also are very familiar with an interesting perspective and method in dementia called the SPECAL Method. And I'm wondering if we could hear about your experience with the SPECAL Method and help us understand more about what that is.

Lynn Ross (25:06)

Okay. One of the part-time jobs that I have is with an organization called Dementia Spotlight Foundation. It's a non-profit. and what we do, we have different educational forums; but right now we've started several connection cafes and most people know those as “memory cafes.” But we decided we preferred to call it a “connection cafe.” So that's what we try to do. For two hours on a Friday afternoon, our care partners and our clients come and we just have a social time. The word “dementia”'s not mentioned. Everybody just comes to laugh and have a good time. 

But while I was doing that, and of course had noticed it before, but the communication between the care partner and the person living with dementia that to me just seemed to be such a problem. Like I said, with my experience at the nursing home, I learned to just go with the flow; whatever you know, they were saying it was fine. But families just have such a problem doing this. And I understand that. As I said, I've had the experience with my mother. but I have found that that is just not the best way to do it. 

So what we do once a month is I have a group, I pull the care partners out of the group and we have what I call “strengthening connections.” And it's not a support group; it's just where I bring something that they might not have heard or seen and that's where the SPECAL Method came from. I was researching how I could help the care partners understand how important communication is and that that's what they really needed to concentrate on.  If they could get the communication right, then things would be a lot easier. The frustration on the part of both would be so much easier.  

So the SPECAL Method came from the United Kingdom and it's been around a while; but there's a group in northern Colorado called Dementia Together, and they have used this method. They're trained, and they have workshops for professionals, for care partners, they have groups for people living with dementia. And it makes so much sense to help people understand how someone living with dementia, how they experience the world and how you communicate. 

You have to remember so many things when you communicate, but once you get the method down, it's really easy. It's really an easy way to learn to not ask direct questions, how to reword things, how important your body language is. And I really think in my groups they say “I remember Lynn said, think about the photo album” because that's the analogy that they use. And so that I felt real good that they were paying attention and really trying and they always come back and say “it works. It really works.”

That's what I want you to know. It really does work. So it's the best system I've seen that really explains to you in a way that you can relate and if you keep that in mind then it just makes it a lot easier to communicate.

Shoshawna Rainwater (28:41)

The first time I heard about the SPECAL method–and that's actually spelled S-P-E-C-A-L, but pronounced SPECAL–was when I read Contented Dementia ….

Lynn Ross (28:54)

Mm-hmm.

Shoshawna Rainwater (28:55)

…and thought, “there’s some really interesting insights and ways of looking at this disease experience.” And it sounds like part of the work that you're doing, Lynn, these two organizations, Dementia Spotlight Foundation and the Dementia Together, are drawing on the learnings from the book Contented Dementia. And so if listeners wanted to learn more about that, I think they could go to either one of those websites, correct? But also get the book Contented Dementia.

Lynn Ross (29:35)

Right, definitely. Dementia Together  that website is really based on the SPECAL Method and they're trained. I've just found it and thought it was such a good idea and have taken their training for professionals that they offer.

Shoshawna Rainwater (29:43)

You've noted that families often struggle because they so very much want the former, older version of their person back in their lives. 

Lynn Ross (29:53)

Right.

Shoshawna Rainwater (29:53)

And how do you help support people around that really understandable longing, but also helping them embrace the person who is in front of them today?

Lynn Ross (30:08)

Well I think that that is the biggest hurdle that any family member has to get over. And it's super,     super difficult for sure. The relationship is gonna change. There's no two ways about it. But if they understand a little bit about where the person is coming from and as we've been talking about that the person is the same, then I think it's a little bit easier to understand that the love is still there, it's just in a different form. I'll say that. 

And when people have such a hard time,  when they say “my mother doesn't know me or he doesn't recognize me” and try to help them see that they might not be able to call your name, but they know you love them. They know you're a person that cares about them and they feel safe. And that's big. If people can just kind of change their mindset and see “I'm still needed, I'm still wanted, it’s just in a different form. But it is very difficult.

Shoshawna Rainwater (31:23)

It's such a hard place in the disease landscape to feel a connection with someone who we feel has lost the ability to even recognize…  

Lynn Ross (31:34)

Mm-hmm.

Shoshawna Rainwater (31:34)

…how we are connected. And this is true now for my mom and her stage of the disease experience. She does not know me as her daughter. In fact, if you ask her if she ever had children, she says “Nope. Always wanted them, never had ‘em.”  And 100% she knows that she is in the presence of a safe and loving person when we are in her presence and we are connecting with her in ways that help her feel valued and loved, regardless of the fact that she has no idea how we are connected.  

Lynn Ross (32:10)

Right.

Shoshawna Rainwater (32:11)

It is both heartbreaking but also lovely that we can still have that connection with one another. 

Lynn Ross (32:19)

Because it's based on love either way. She senses how much you love her and care about her and she's secure.  

Shoshawna Rainwater (32:29)

Yes, she feels secure.

Lynn Ross (32:38)

And security is big. Security is very big, because when you're not sure of who that person is, I mean, it's just natural to be reserved.  But yeah, she gets that sense from you and always will.

Shoshawna Rainwater (32:49)

So I love, also, that caregivers have their own space to grieve some of these losses. So that's an important piece I think of the caregiver experience. And then these special spaces like the one-on-one with you, where they are being given tools and information about ways to have an enduring connection.  

Lynn Ross (33:11)

Right.

Shoshawna Rainwater (33:12)

And the communication piece, which is the strongest tool in a caregiver's toolbox, hands down. Anybody who works in this landscape of dementia knows, like communication is our primary tool. 

And then also these spaces, these I don't think “safe space” is exactly the term I want to use, but just a space where everybody's nervous system can kind of go “ah” and relax in these connection cafes, right? Where   learning about dementia and processing the experience of dementia doesn't have to be the primary focus. It's just fun and joy and frivolity, which every human needs, those spaces. 

Lynn Ross (34:02)

Well, just this past Friday we had a cafe and we had a music therapist come and she's really good about trying to give us a variety of music; but they really love the Motown and the 70s and we get up and we dance and we do “YMCA” and all those other songs and of course they know the words; and we had tambourines, we did a conga line. We have a good time. We have a really good time. 

Shoshawna Rainwater (34:35)

Ah, I love it. What a nice break, too, from the seriousness that people carry around this diagnosis. And I'm imagining “YMCA” is a bit of a workout, too. So I'm thinking about like, oh  my gosh, I'd be exhausted at the end of that if I was to do it. I haven't done the YMCA in a very long time.

Lynn Ross (34:45)

Well, I never do. The “M” is the one I can’t… (laughs).

Shoshawna Rainwater (34:52)

That's a tough one.

Lynn Ross (34:50)

I'm still working on trying to get the “Y” (laughs).

Shoshawna Rainwater (34:54)

You know what we oughta do is just actually we need a new version that's the YWCA, right? The “W” is so much easier. Where's that song then?

Lynn Ross (35:03)

Yeah. I hadn't thought about that.

Shoshawna Rainwater (35:05)

You know, before we leave this part about the communication tools that you're helping teach families, I know that you teach care partners that simply pausing before answering can change the energy of the exchange, can change the energy in the room. Why do you think silence is such a vital tool? Why is that pause so important in dementia care?

Lynn Ross (35:26)

So many times care partners, they have so many things to do and their minds are going at 90 miles an hour in 50 different directions.  And you tend to just blurt out the first thing that comes to mind…  

Shoshawna Rainwater (35:48)

Mmm.

Lynn Ross (35:49)

… rather than stopping and trying to take a deep breath and gather your thoughts and really think about what you are saying and how it's going to sound to this person before you say it. But it's hard. Nothing about this situation is easy for the care partners. It's a new way of thinking and reacting. And it takes a while to get and you make mistakes, that's just part of being human. Every situation is not gonna turn out perfect, but, I think once you get comfortable with how you react, it just makes it a little bit easier.

Shoshawna Rainwater (36:34)

Yes, this reminds me of some of the mindfulness work that I've looked into for my own personal well being and that between the stimulus and the response can be a graceful pause that just changes the trajectory of how you respond.

Lynn Ross (36:54)

Right, definitely.  It's hard enough when you're just in a regular situation, but when you're under the stress of being a care partner and being responsible for so many things, you just don't think to stop. Stopping is very, very hard to do.

Shoshawna Rainwater (37:14)

Yeah. I've started to love this tool called “the physiological sigh.” Do you know about this?

Lynn Ross (37:23)

I don't. What's that?

Shoshawna Rainwater (37:24)

Well, the physiological sigh, as I understand it, is a breath technique that takes mere moments. And it's kind of a two-part breath where you take an inhale through the nose, and then just short of being full, you kind of pause and then you do one more sniff up to full capacity. And then sigh through the mouth. And it's a physiological response that we do, actually, very well as children when we're having a very, very difficult time and we may be crying. Our bodies organically know how to do this. 

If you think about watching a kiddo cry really hard, they kind of do a big inhale and then they'll do another like quick inhale, as well, and then letting out this big sigh. So our bodies know how to do this, and it is a very helpful reset. You can do it once, you can do it more than once, you can pepper it through your day, and there's a lot of bang for your buck… 

Lynn Ross (38:28)

Ha ha.

Shoshawna Rainwater (38:28)

… in that kind of breath that doesn't take six or seven minutes out of one's day or more. And I've started trying to pepper my days with a mindful pause and a physiological sigh…  

Lynn Ross (38:40)

Okay.

Shoshawna Rainwater (38:40)

…and my body really likes it. So it would be a fun thing for us to play with. And it also feels really good. Our bodies love a good sigh. A sigh is a reset. So I'm imagining though you'd want to be really mindful about an audible sigh in the presence of your person with dementia because you don't want them to think that you're exasperated with them. We'd want to use it mindfully. 

Lynn Ross (39:12)

It could come across in the wrong way for sure, so we'd have to be careful.

Shoshawna Rainwater (39:17)

We do. We have to be really careful about how we would use it. But it's a yeah, it's worth trying, listener. the physiological sigh.

Lynn Ross (39:24)

And that's where body language is so important, as well; the look on your face, the crossed arms, I mean, just so many things that we do that we're not conscious of doing that can really affect how you're coming across with somebody.

Shoshawna Rainwater (39:43)

I say that people with dementia have such a keen radar for exasperation. They know when we are exasperated with them and it makes their communication and behavior look different. They get upset, which then of course makes the care partner's experience more difficult because then they're trying to work through that piece.

Lynn Ross (40:09)

You just start the vicious cycle of problems; and it's something as simple as stopping before you answer, trying to get the tone of voice on an even keel. Probably aren't feeling that way, but you have to slow down and think about “okay, how is this gonna come across?”

Shoshawna Rainwater (40:30)

I think sometimes about the care partner's responsibility in that dynamic to be the one that sets the tone, to be the one that takes that mindful pause. And I appreciate that for some people it feels like “God, you're asking me to do so much here.” And without those tools, without assimilating those new ways of being with the person, it's a significantly harder experience. So it's a gift to the caregiver, care partner, when they can adapt.

And it's not that you don't get to have a setting where you can talk about those pieces and how hard it is and how unfair it feels. That's what good friends, good family members, and support groups are for.  

Lynn Ross (41:24)

Right.

Shoshawna Rainwater (41:25)

But the more we can show up with calm and positivity when we are in exchange with our person experiencing brain changes, it goes better.  

Lynn Ross (41:36)

And that's what I enjoy so much is when somebody comes back to the group and says, “you're right, I did it. I thought about what I was gonna say and things went so much better.” I tried role play. And you know, that's one thing that some of the groups down here, improvisation…  

Shoshawna Rainwater (41:54)

Yeah.

Lynn Ross (41:54)

… is becoming really big to help care partners understand that going with the flow is so much better for everybody involved. 

Shoshawna Rainwater (42:05)

That's using the “yes and” response, right? 

Lynn Ross (42:08)

Right.

Shoshawna Rainwater (42:08)

I think about, oh boy, you know, those episodes of “The Office” when Michael Scott was in improv and how painful those scenes were. But it's saying “yes and” and rolling with whatever it is the person has said. And your response to that is just, “all right, here we go. Let's continue that interesting narrative.” Which reminds me of the work you were doing early on before you had any of these formal tools or methods being presented to you, you got this on a level that many of us just don't organically have. You knew this was the right way to respond way back in the 90s when you were doing this work. There's something about you that it is naturally attuned to doing this good work. Lynn, I'm so grateful.

Lynn Ross (42:54)

I just really feel like I'm doing what I'm supposed to do. I'm still capable of doing this for a reason, because I really enjoy what I do and I've tried my best to help families see that this is not the end, it's just a different chapter in the story.

Music transition

Shoshawna Rainwater (43:26)

As we wrap our conversation here today, this podcast has the word “hope” in the title. We like to talk about the hopeful parts as well as the realistic parts of the dementia experience. And if you could sit down with a spouse or an adult child who is currently really terrified or upset about their loved one’s diagnosis, what is one thing you would tell them they could do today to help improve their experience?

Lynn Ross (44:09)

Well I think, as we talked about earlier, I think just the acceptance of the situation and the acceptance that yes, it is different, but that doesn't make it bad or wrong. It's just different. And I just need to learn how to react differently. And that it's up to me to do that. The person living with dementia, they can't really make those changes. But you can and have to for your sanity. 

Shoshawna Rainwater (44:39)

I think both you and I have been doing this work long enough to know we've seen example after example of people resisting the acceptance.  

Lynn Ross (44:52)

Right.

Shoshawna Rainwater (44:52)

And the anger and frustration and upset that causes both parties–both the care partner and the individual living with brain changes. And we've seen those families who sort of metaphorically learn to drop the rope… 

Lynn Ross (45:09)

Right.

Shoshawna Rainwater (45:09)

…get out of the tug of war, that is one-sided anyway. Your person with dementia is doing the best that they can, as hard as that can feel to believe some days. They are doing the best that they can. And those people who can accept and begin to adapt to a new way of doing things fare better.

Lynn Ross (45:27)

Mm, much better.

Shoshawna Rainwater (45:28)

And that's a good reason to do it. It's because you, as a care partner, deserve to do better in this really challenging landscape. 

Lynn Ross (45:26)

Right. Why would you continue to do something that is just not working? And it's very obvious that it's not working. But change is hard. 

Shoshawna Rainwater (45:46)

Change is hard. And on the other side, I love the idea of just inviting people to try some of these changes and say, “report back to us, like “how” did it go? Because I've had that experience too in support groups that I've led where folks I just make a suggestion, like, “here's something you could try.”  

Lynn Ross (46:06)

Right.

Shoshawna Rainwater (46:05)

What if we just tried that? And then come back and tell me how wrong we were, or if it resonated at all, or if it worked at all. And it's fun and really satisfying…  

Lynn Ross (46:14)

I love it.

Shoshawna Rainwater (46:14)

…when people come back and say “guess what? I can't believe it but it worked to perspective-take; it worked to stop arguing. The day went better.”  

Lynn Ross (46:26)

Yeah.

Shoshawna Rainwater (46:27)

So yeah trial and error.

Lynn Ross (46:29)

It really does work.

Shoshawna Rainwater (46:31)

Well Lynn, anything else that you would like listeners to know or anything you would like to share before we move to concluding here

Lynn Ross (46:42)

Well I guess I'll go back to the word “adaptation.” That's very important that you just find new ways of doing things. It really can help the person living with dementia to feel better about themselves and that's huge.  

Shoshawna Rainwater (46:59)

Yeah.

Lynn Ross (46:59)

That is really, really huge because the negativity, that's basically all we get. And this is definitely not there's some positive things about it. And I've heard some families say they were closer…

Shoshawna Rainwater (47:15)

Mm-hmm.

Lynn Ross (47:17)

…once they got kind of got past the initial shock that they really had a meaningful relationship with the person. And sometimes even when they hadn't had it before–that it's changed. So you just have to do the best you can and as you said realize they're doing the best they can.

Shoshawna Rainwater (47:37)

Yeah. But isn't that true? I mean I've said this before on some of these episodes of Hope Floats,  It's like, isn't it true that we're all doing–we are trying hard, collectively. Everybody is really doing the best that they can in that moment and we can all adapt. I mean we as people who are in these roles can adapt…  

Lynn Ross (47:56)

Yes.

Shoshawna Rainwater (47:56)

… and change up the way that we're doing things.

Lynn Ross (48:00)

It's not impossible. 

Shoshawna Rainwater (48:01)

It’s not.  Yeah, I love that. That feels hopeful to me. 

Lynn Ross (48:06)

Definitely.

Shoshawna Rainwater (48:08)

Well, Lynn, I am so grateful for your time today and the wisdom that you shared and the new resources that you mentioned today for our listeners. We will put in the shownotes Dementia Spotlight Foundation and Dementia Together and the book Contented Dementia by Oliver James. 

Lynn, if listeners wanted to learn more about the work that you do or to be in touch with you, how would they go about that?

Lynn Ross (48:35)

Well, we have a website, dementiaspotlightfoundation.org. All the contact information is there as well as a lot of resources and articles that we put together to help our families and information about the cafes and what we do and pictures so you can see us having a good time.

Shoshawna Rainwater (48:57)

Love that. Okay, wonderful. We'll put those in the show notes, as well.  

Lynn Ross (49:02)

Thank you.

Shoshawna Rainwater (49:03)

Yeah. So listeners, today we met with Lynn Ross, a social worker, and a wonderful human being, and a person experiencing mild cognitive impairment. Lynn, thank you so much for being here today. It was a joy to be with you.

Lynn Ross (49:08)

Thank you. I appreciate the opportunity.

Shoshawna Rainwater (49:16)

Thank you for spending this time with me today. I know how much you're caring, and I'm honored to be part of your journey. If you found today's episode helpful, please subscribe or share it with another caregiver who might need to hear this information. You can find more resources and past episodes of Hope Floats at www.rainwaterconsultingpdx.com 

I'm Shoshawna Rainwater. Take what you can use from our conversation today, and leave the rest for whenever you might be ready. Please remember to honor the work that you're doing, and more importantly, honor yourself. I'll be here with you next time. 

The information shared on Hope Floats is for educational and supportive purposes, and is not a substitute for professional clinical advice or a therapeutic relationship.