SoulStirred: Stories of Growth And The Human Experience

Episode 5 - Caring for Caregivers Impacted by Dementia

Welcome lovely listeners to SoulStirred, stories of growth and the human experience. I'm Emily Garcia and I'm Casey Clark. We will be your guides on this journey.

We are so glad you are here. Each week we'll come together, sometimes with other incredible thinkers, creators, and adventurers to generously share stories of self-discovery, recovery, triumph, and what it means to live a life on purpose. No matter where you are in your own journey, connection is here for you at SoulStirred.

Settle in, take a deep breath in, and let's inspire each other. Welcome to SoulStirred. Hi, welcome to Soulstirred podcast, stories of growth and the human experience.

I'm Emily. And I'm Casey. Hello.

We are happy you are here today. Today we have a guest, a wonderful person named Kay Adams. Kay is a licensed clinical social worker, educator, author, and speaker.

In addition, she is a certified dementia consultant and trainer. Kay is the founder of Compassion Works LLC, which provides individualized dementia coaching, workshops, and educational offerings to families, professional care partners, and organizations on a variety of topics related to dementia. Kay is passionate about supporting people living with dementia as well as their families, care partners, and communities entrusted with their care.

Kay has extensive background as a medical social worker in geriatrics, hospice, palliative care, and mental health, which all of these things allow her to address the diverse and complex experience of her clients in a really relatable way. The majority of Kay's dementia coaching work with individuals and families is done on zoom. So she's able to help people from anywhere in the world.

Kay is an award-winning author of Bedside Witness, Stories of Hope, Healing, and Humanity, which was released in July of 2022. This is her first book, and it is a really, really incredible and valuable one. Welcome Kay.

Thank you. We're so glad to have you here. So you, Kay, you have had a really interesting road that has gotten you to where you are as a consultant and coach and working with caregivers of people who have dementia.

Tell us a little bit about your background and what got you here. Okay. Well, it's not been a straight route.

It's been, it's been a lot of curves in the road. It's who, kind of the short version is I worked a lot of years in youth corrections. And I worked in day treatment programs with kids at risk youth in Minneapolis.

I worked in residential treatment with them for a long time, both in Minnesota and Colorado. And sometimes we get pigeonholed in a career. Like we do something so long and we get really good at it.

And then when you want to switch gears, no one wants to switch gears with you. They want you to go right back into the groove you've been in. But I got really, really burned out.

I got really cynical. I was just running on fumes and I just had kind of lost hope in people, in parents, in the culture, in the judicial system and all kinds of things. And I quit my job without another after a really graphic threat I received from one of the youth I worked with in Golden at a felony level institution, which everything short of murder, kids get sent to in Golden.

And I was like the mental health therapist, one of them in the building for like 40 kids. And so I decided I just quit without another job. And I tried to think of what I would do next and I didn't know.

And it took about six months and somehow, it was kind of divine intervention, but I didn't know it I ended up in hospice in the fall of 2001. And there could not be a more diverse job transition process than going from youth corrections and court ordered clients to people that are in their last six months or less of life, 75 to 103 year olds and dying. It was quite the curve, but it was really a life changer for me because I needed a place that where people welcomed me and didn't throw things and slam doors in my face and threaten my life and where I could just sort of be my natural self because in corrections, you put on your armor, you put on a suit of emotional armor every day to go through those doors with those kids.

And that is not my natural way in the world. And so putting that armor on was heavy to carry and it depleted my energy psychically and everything else. And hospice, even though I found that was difficult, it was like, wow, this is really life-giving this industry.

So I spent eight and a half years there thinking I would retire in that business because I loved it so much. And all the folks mostly that I took care of with my team lived in nursing homes, assisted livings and memory care. So a whole lot of those folks were living with some form of dementia.

It may have been their primary diagnosis of why they were on hospice, or it could have been a secondary diagnosis, in addition to cancer and lung disease and heart disease, they had dementia. So I sort of got immersed in the land of dementia then. And then I spent eight and a half years in Kaiser, four and a half of those years were in a diagnostic memory clinic.

So I was on a specialty team diagnosing dementias of Kaiser patients. And then I spent my last year and a half there as the home-based dementia specialist in Denver. So I was driving all over town in Denver traffic, visiting folks living with dementia in their homes, with their caregivers, providing support, education, resources.

But the one thing I discovered is that one home visit, two phone calls, two clinic visits was not nearly enough for these families. And that's all I could give because of the staffing issues. I was the only person doing specific dementia work in all of Kaiser.

So, I mean, the numbers didn't add up, right? And so I just decided to jump ship in the fall of 2018 and try to start figuring out how to start my own business so that I could better serve those people. And so I started my business Compassion Works kind of really officially in the spring of 2019 by the time I got a website up and those kinds of things. I may have waited a little longer had I known there was a pandemic around the corner, but I didn't know that.

So I hung my shingle and tried to weather the storm when the pandemic hit. What an incredible story. And you ended up exactly where you needed to be at the right time.

I love this part in Bedside Witness when Kay says, even with all of the unexpected twists and turns that took place over the six months leading up to my career change, I never imagined in my wildest dreams that my emancipation from that important but incredibly taxing work would lead me to a place where I would companion people who were dying or that I would discover so much about myself in that process by bearing witness to the miracles that can happen when you finally get the chance to combine your natural gifts and abilities with a warm and receptive audience that graciously welcomes all of the love, trust, and kindness that you have to give. So your words just touch me, I can feel your heart. And I too know the distance between wanting to provide care and empathy and love to people we're being, you know, we're forcing it upon.

Yes, court-ordered. Exactly. Versus the receptive audience that wants and needs those sorts of things from people like us to be given for free.

So I just thought that that was beautiful. And you know, Emily and I started this podcast in response to the loneliness epidemic, the disconnection that's in the world and how alone people feel. And so I have all these curiosities for you, Kay, about how connection, how you are cultivating connection with folks in the dying process, and in the dementia process.

I mean, I'm seeing the connective tissue between that particular audience and what it really means to be lonely, and then what it's like for a person like you to show up. Well, particularly in the pandemic. Yeah.

I was meeting with people only in person and only from Denver that first year of my business. But as you know, everything went on its head and changed after the pandemic. So I had to learn to pivot.

I had to learn how to use Zoom and all of these things. And now I work with people all over the country. So that's the upside of all of that.

But I remember distinctly working with three different women that were my coaching clients. One was down in Colorado Springs. One was in Southern Colorado.

One was in Denver, I think. And I met with them every week or every other week on Zoom. So they were all caregivers for their husbands.

One, I think, well, one definitely had frontotemporal dementia. One had Alzheimer's. And one, I think, was from a stroke.

I can't quite remember. So they all had dementia, but they were different kinds and they were different ages and stuff. But the common denominator was no one was seeing them during the pandemic.

They had nowhere to take their loved one. They had no one available to come in. There was no respite.

There was no calvary coming. They were all alone in it. And this one particular woman, her husband had frontotemporal dementia and he had spent 24 consecutive hours in their master bathroom, putting the toilet seat up and down.

That's all he did for 24 hours and said, this is my job. He wouldn't eat. He wouldn't drink.

He wouldn't leave the bathroom. And he got psychotic and had to be hospitalized and called the police and all kinds of stuff. And I am the only one who was seeing them over the Zoom screen.

And I try to keep my clinical hat, my licensed clinical social worker therapist hat off when my coaching sessions, however, it's in me, so I can't help it. And in all three of those cases over time, I said to all three of them in different ways, you know, are you concerned about depression? Because I am concerned about depression. And is this something you would be willing to talk to your doctor about or consider maybe some medications and here's why I'm concerned, et cetera.

And eventually in all three cases, they did seek out treatment and they did seek out medications. Not that I'm trying to promote that, but I mean, they were saying things like, I hope I don't wake up tomorrow. You know, it was pretty severe.

And, and all of them at a later date said to me, oh my God, who knew I had no idea, but they had no reflection. They were completely isolated, completely alone. And their loved one with dementia could not mirror back to them, you know, with their dying brain, what, what their concern.

Right. And so I was the only one who had like a little window into their world. And in all my years of working with caregivers, I have never seen the likes of the isolation and depression and anxiety as I did during those years of COVID that are still now in the aftermath of that, that it isn't over.

Right. But it was, I was glad I was able to be there. I was glad that I was able to pivot and, and hang out with people in their living rooms or, you know, kitchens or wherever, because I feel like I was a lifeline to some of those folks.

Yeah. The caregivers even more so than the patients. Oh, absolutely.

The caregivers. Yeah. That's primarily who I support in my business.

That's exactly why in 2019, you started this business because you had a purpose to be there in 2020 with these people. It is really a, a unique experience that caregivers and care partners have because it's so lonely to begin with, but in 2020, when you literally couldn't go anywhere or invite anyone into your home, it had to have been a whole other level of loneliness. I'm grateful you were there for them.

Me too. Me too. It was heavy for sure.

Yeah. Tell us about how you support people, you know, just kind of the logistical piece about how you support people who are care partners as a So I do mostly two things in my business. I do education, which is like, one-time Zoom classes or a five-week group coaching thing or keynote, you know, educational offerings or a variety of speaking things that are all educational and geared for either family care partners or professional care partners.

My audiences are typically a mix of both in any given time. In terms of the individual coaching, which is where I spend most of my time, there are certain things that come up. So I don't have a prescribed way of doing it.

What I do with folks is I, I, I have my own questionnaire that I send out when they sign up with me or when they're thinking of signing up with me. So I get a lot of background information or my kind of like my psych social assessment. And I, and I try to prioritize what is important to them based on that information.

And so, so for some folks it's education. I have no idea what Alzheimer's means. I have no idea what this disease is going to do.

You know, I thought it was just a memory thing, but my mom is screaming at me all the time now. And sometimes she doesn't recognize me and, you know, she's wandering off and getting lost and, you know, all these things, what is going on, that kind of deal. So a lot of it is education around the disease.

A lot of it is trying to figure out some strategies perhaps to better deal with their loved one. In some ways, there might be some behavioral stuff going on. It just might be, it's, it's really a key thing I deal with a lot is about relationships.

This disease is horrendous on relationships. There is so much anticipatory grief, ambiguous loss, tension, lopsidedness that the person with dementia loses all kinds of skills and capacities. So the caregiver has to just pick up the slack.

And so it really, really impacts relationships a whole lot. So I try to help normalize that. How can we increase the support to the care partner? How can we, my philosophy is if I can buoy them up through education, support resources, that kind of stuff, then they're going to be able to be a better caregiver.

Therefore, the person living with dementia is going to have a better quality of life. There was a statistic out a few years ago. I don't know what the current stat is, but at one point there was a statistic a few years back that said 63% of dementia care partners die before the person with dementia does.

Wow. Because of the extensive nature, how long this illness goes on, how absolutely isolating all-consuming it becomes. And so I'm trying to avoid that, that cliff that they fall off on as long as possible by providing these kinds of services.

So we're trying to develop solutions. We're trying to deal with the grief. A lot of times I spend a lot of time about, do I place my loved one or don't I? Oh, and COVID, that was a big one.

Okay. If I place them in a care facility, I can't see them. I can't see them except through a window visit with a mask or over a screen like an iPad.

And they will have no idea what I'm doing on this thing. And so I do a lot of weighing the pros and cons. If I move them in some place, what might happen? How do I handle that? How do I orchestrate that? What questions do I ask? Because I hung out in those facilities for 40 hours a week for eight years, I know a lot about those kinds of communities.

So it's just kind of coaching them. But I always start out all of my sessions with what are your top three things that you want to work on today? I used to say that people had to email me two days in advance of our appointment to give me their top three, so I could kind of mentally prepare. And then I realized that's a total joke in the world of dementia caregiving, because anything can happen in those 48 hours.

And so it was a waste of their time to actually put the list together in advance. So I don't even ask for that anymore. So it's all organic in the moment.

What's hot today? What do you need support around today? And it might just be, I am heartbroken. I don't know how I'm supposed to keep living for seven more years dealing with this, because I already feel like I'm depressed. I'm anxious.

I'm drinking too much. I'm taking too many Ambien at night, you know, whatever it is that their mental health and physical health and spiritual health is impacted. And so what can I do to help with that? It's really a sect of society that I haven't thought of before.

And now I'm wondering about our whole listening audience, like what you're describing about grief before the person has died. Yes. Difficult and complex.

There's a term called ambiguous loss that we're you know, and that is that the person's still with us, but they're not the same. Pauline Boss coined that term. They're not there.

And I use a expression a lot with people, like if you have a street and there's 10 houses on it and there's 10 people in each house, it's caregiving for someone could be because they have cancer. It could be a disability, you know, but only one person on that block of 10 is caring for someone with a cognitive impairment or dementia. They are not having the same experience.

There might be overlap. There might be similarities, but if the rest of them can communicate with their loved one and can make sense of that and and the relationship isn't severely impacted or those things and they and then they give well-meaning advice to the house with their caregiving for someone with dementia, it falls on a kind of resentful ears because they're like, you have no idea what it's like in this house. And so I know that I know that, but they don't know that.

So I'm like, hey, I get it. I totally get it because I use that example with new clients and they're like, like, have you been spying in my window? Yeah, I doesn't like I don't have to. I spy in windows over zoom all over the country all the time, but it's it's so isolating and then they feel misunderstood and they feel judged and then they feel even worse.

Right. Right. Yeah.

And women tend to really beat themselves up for losing their temper, being, you know, have a short fuse, being frustrated when an illness could last up to 20 years. Now, are we supposed to just be endlessly patient? I'm not. I don't know about anybody else, but that's a standard that we should not set for ourselves.

Yeah. Even the conversation you were alluding to with the one client you were saying you were coaching during covid, who is in this, it sounds to me like a trap, like care for other versus care for self. Absolutely.

And how do I ever make that choice and feel good about myself, not carry shame and guilt around that? I chose my own life, maybe over my partners or my child or my sibling. You know how difficult I always say, you know, it's it's self-care is self-preservation. It's not a selfish act.

But women, I think we're just trained in our culture, our society in the States to look at Mother's Day cards. They're always like, oh, you are so selfless. You put everybody before yourself.

I mean, that's what's exalted. And so the male care partners that I work with, by and large, not always, but by and large, do not self-flagellate in the same way that every female, every single one does. Yeah.

Because I should never do this. Should, should, should, should. And they have unrealistic expectations.

And then we create our own suffering. Yeah. Well, we've been so conditioned, especially in generation and culture as women, right, to care for others, almost to the neglect of self.

I shouldn't even say almost. It's celebrated if we neglect ourselves. It's celebrated.

Yeah. Yeah. Yeah.

Well, I'm thinking about the, the women I know who are care partners, who have all the shoulds. I should do this. I should be able to do this and that I should do it by myself.

I shouldn't need help. No, I can't ask for help. No one can help me.

And how that lonely that is. And you were talking about the relationship piece with the person who has dementia, the relationships kind of like go out, it spreads in branches. All of the different relationships in your life are impacted because people either don't know clearly what is happening or they're not allowed to come in and help.

And that's lonely. Absolutely lonely. And when you don't feel understood on top of it, and you feel judgment, like it usually ends up on the shoulders of one person, a spouse or an adult daughter, most of the time.

And you might have four siblings that live out of state or across town and they have lots of advice for you, but they don't show up. And so it creates all kinds of dynamics and families. And I have years and years and years and years of family therapy experience in my career which is good because there's so much conflict when it comes to this stuff.

And I understand how that plays out because I learned in hospice for those eight and a half years that there's nothing like a life-threatening or terminal illness to bring the best and worst out in families. No matter how close or not or disengaged you might've been, it's brutal. And so I expect all of that in advance.

I anticipate all of that in advance and families are surprised when I say that. They're like, oh, I just thought it was, my sister was being a pain in the butt. I'm like, oh no, no, this happens all the time.

And then they go, really? And somehow, I mean, it doesn't make it better, but it makes it like normalizes like this is what your family's doing is really normal under these circumstances. But when you throw in the dementia element, cause somebody might sound fine on the phone for a five minute phone call to the out-of-state family member. And then the brother, sister, whoever gets back on the phone and says, I don't know what you're talking about.

Dad sounded fine. I just think you're too stressed out. You should get to the gym more.

And you're like, oh my God. And they're like, come stay for a week. Come stay for a week and step in my shoes and see what it's like.

And then say that to me. And so I get, I try, what I try to do with care partners is create this safe container, just like therapy does. But like, if you need to say the four letter, whatever four letter word, every other sentence, that's fine.

Whatever you need to do, but you need a place to be real. You need a place to be unedited. You need a safe, nonjudgmental zone to say, sometimes I just wish they were dead.

Sometimes I wish it was over. This is so brutal. I do not know how I'm going to go on without thinking they're going to be struck by lightning.

Yeah. Right. And I'm like, absolutely.

That is the most normal thought in the world. And they're like, what? I think this K woman is off a rocker. Right.

So I mean, cause I know it it's, it's a normal thought to have. Can we talk about that? I think releasing those things out into the world helps, but women tend to stuff it right. Internalize and then get depressed instead of anger.

Like what men might do more often. Self-admonishing like what's wrong with me. I'm a bad wife, bad mom, bad, whatever that I'm thinking.

Yes. And I'm always like, you're not perfect. Yay.

Let's celebrate that because no, it is. Yeah. You're human.

Absolutely. Absolutely. But a set of needs of your own.

And it's a really, really hard thing to lose your partner right before your eyes. And I picked this illness. I think I've for anybody who's read my book or will read my book, bedside witness.

I am for whatever reason, magnetically drawn to really hard jobs. The hardest population is let me show up domestic violence, delinquent youth or people with intellectual developmental disabilities or mental health or whatever it is. And even in hospice, the facilities end of things for a lot of people seemed like a harder job than in-home care because you had to navigate directors of nursing and administrators and staff clickiness and all those things.

But of course, that's where I ended up. Right. I always like, oh, what's the hardest? Let me go there.

But I think you learn a lot through those, you know, through those avenues. And I and I picked this illness because of all the different illnesses. And I worked with a wide variety over eight and a half years.

I feel like. It's it's disproportionately awful in lots of ways, and it's unrecognized and there's not a lot of support for this swatch of people. There's all kinds of cancer support things out there of Parkinson's disease or other things.

But dementia, you're kind of on your own. It's like, good luck. See ya.

You know, here's the Alzheimer's Association number. You know, what do you attribute that to? Why? Why is this population overlooked or undervalued? What's what's going on there, in your opinion? Well, I think for a lot of things is that there's not because we haven't found a cure. And because there's no viable, robust treatments, you know, if you have cancer, you could, depending on the cancer, depending on the person, of course.

But it's oftentimes you have a menu of choices. Is it surgery? Is it amputation? Is it chemo? Is it radiation? Is it, you know, whatever. There's like, OK, what's the treatment plan? Right.

I'm a medical social worker. What's the treatment plan? Well, and to mention the treatment plan, even for us and like in the memory clinic was here's the number for the Alzheimer's Association. That was it.

There wasn't because even any memory meds that are out there don't do much. There's nothing that stops it. There's nothing that reverses it.

And there's very little that even sort of stabilizes it for maybe a few months. And so so they're on their own all the time. Go, what the hell? What am I supposed to do now? You know, I mean, that's constantly what I get.

And and so they don't have any direction. They have no they're just, you know, blindfolded, stabbing around in the dark and stuff like that. So even though there's like Alzheimer's Association and different things like that, it's still it's just not a lot of concrete things to go through.

There's support groups. There's that kind of stuff. But it's like, what's the treatment? Well, they're, you know, social engagement, exercise, diet, you know, these things.

But we like a pill. Let's just give us a pill and fix it all. No such thing.

And then the comorbidities, the risk factors for the caregiver in terms of mental health are huge. And those go unrecognized because they are the unsung heroes. They are the quiet ones, you know, in the millions out there doing unpaid care and and off the radar.

So people don't know what's going on with them. Until they crash and burn mentally, physically or both. Yeah, like another tragic, unfortunate artifact of our culture.

If we can't fix it, we'll just forget about it. Right. And we were already a fear based culture in terms of illness before COVID.

But oh, my gosh, that didn't help.

You host a monthly workshop that is for caregivers. Tell us about that, because I think that is a really great way for people to get in and find some understanding. Yeah.

So I do, except in December, because no one comes to anything in December, but I do a monthly group or class called More Than Memory, Understanding Brain Change and Dementia from the Inside Out. When you go to my website, you can find out all about it there, but it's 90 minutes. And it used to be three hours, so I tried to dilute it down to 90 minutes.

But I go through what is normal aging, what isn't normal aging. I go through what are the prime. There's over 120 different kinds of dementia, but there's a handful that are the most common.

And of that handful, Alzheimer's is the very most common. But I go through the main players, the main kinds of dementias that are most common. I focus a lot of time on Alzheimer's, specifically because it's the fifth leading cause of death for anybody who's 65 or older in our country.

Two thirds of those women are women that get impacted by Alzheimer's. And then I go through all these slides with the brain about what's happening. So do you see, like, I have slides, obviously, that were taken up after someone has died, but I have a normal brain and then a brain with Alzheimer's, right? And you can see the holes.

You can literally see the holes in part of it. So when people living with dementia say to me, my brain feels like a sieve, or when care partners say, my mom's brain is like Swiss cheese. Well, exactly, because there's holes that the disease has done.

And so when they see it on slides, they go, oh my God. And I say, so when you see that hole there, this is why they can't retain new information. This is the visual changes.

This is why they keep tripping. This is why, you know, and it turns on a lot of light bulbs. So I have folks that come to that, that have somebody in their life that was newly diagnosed, but mostly it's people in mid stages or plus.

And they're like, I learned more in an hour and a half than at the neurologist or in an Alzheimer's support group. And it's not meant to be a be all end all. It's just really meant to say, here's what's going on.

And here's some things you can do and to think about. And so I feel like for the purpose it serves, I always get extremely good feedback. And I offer a special, so it's $97, but I have a bring a friend for free.

So if you wanna bring your sister or your cousin or whoever, you know, you can just split the cost. And so what's been cool about that is I've had a lot of people that were Denver based in it, but I had people join from, let's see, Belize, Germany, British Columbia, some other places too, because they had a loved one, a family member or something that was living abroad. So it's been fun for me to have people like, oh, it's an international class today.

Yeah, but it's a great way to find out about, you know, who I am, what I do and learn about the, some really important aspects about the brain. Brilliant, I love that. It's like what you said, understanding can lead to acceptance, right? Like if I understand- Or at least coping better.

Right, if I have a little bit of, there's a hole in your brain and that's what has you behaving in the way that you're behaving, maybe I can tolerate it more or- Well, I always say people that know me who are any class or coaching, I am a straight shooter. I do not sugarcoat stuff. I don't beat around the bush.

And the reason I don't do that is because I feel like this is a very misunderstood disease. If you were stood on a street corner and you did an informal survey of everybody who walked by for an hour and you asked them, what is Alzheimer's or what is dementia? They would say it's a memory problem. That's what most people would say.

That's what most people believe. But in fact, it's a terminal illness and it affects every part of the brain and affects everything for their life and everybody around them, eventually if they live to the end of the disease. Now, other things could happen, that might come into play.

But if you're only prepared for memory problems and it could last up to 20 years, oh my God, how is that helpful? That's not helpful. So I'm always saying, it's not if, it's when. Let's focus on what's happening now with a nod to the future, what's shining that flashlight a little bit down that path.

So I'm always kind of weighing where they are, kind of that palliative care approach. And then nudging them forward a little bit to think about some other things that are happening or could happen so that they aren't just sideswiped mentally or caught off guard or put into a crisis mode when I'm like, that's a symptom. These are some symptoms.

You're kidding. I had no idea auditory hallucination was a symptom of dementia. I thought it was a memory problem.

I know. I did not know that aggression could be a symptom. I did not know that paranoia was part of this.

So if at least you know that that could be a possibility, you're not as shocked and more able to respond. But if it puts you in fight or flight as the caregiver and then you're in a crisis mode, well, how is that helpful to anybody? I don't think it is. So that's why I try to just, let's talk about what's real and what can happen with this.

Not to take away hope, because there's always hope. It's just like, if you have more of an, it's like a GPS. If you don't put in a destination and you're trying to find your way somewhere, where are you gonna end up? But at least if you know, hey, this is what happens.

And I have somebody that can kind of help me through these various stages. I think it's a lot more comforting than trying to go it alone. Absolutely.

Well, and hope is such a more beautiful gift when it's rooted in reality. I have so much respect for what you're saying right now. I often say to people, there have been only a few people in my life who have loved me enough to speak the truth to me.

And you sound like one of those people. Like let's begin at the point of the truth and then we can work on building hope from what's real. I know, I want a quick example.

I do work with some people that are in early stages of dementia, also doing coaching. Primarily my work is with care partners, but I do work with some people. And as a gentleman I work with right now who has early Alzheimer's, that is progressing quite a bit over the past six months, particularly his short-term memory is really going quickly.

And we meet weekly for Zoom coaching calls. And last Tuesday, he sent me an email asking seven questions for the next day. For our coaching call.

He has never once in a year and a half ever sent me questions in advance. So I was very surprised just to see the email with that. And then I read the questions and I was like, oh my God.

And so they were like, the first question was, will this disease ever get better? What can I do about my moods? Will this affect me physically? Will I die a slow and painful death? Will I be on hospice? What's gonna happen with my marriage as this gets worse? You know, questions like that. And so when we got on the call that day, he didn't remember sending me the email the day before. And I said, hey, he sent me this email.

And he goes, oh, really? Yeah. Listen, I'm gonna go over those questions and I'm gonna see if those are things you still wanna talk about or not. I'm gonna read them all first.

I don't expect you to remember them, but then let's go through it because they're pretty deep questions. They're pretty hard questions. And we went through and I read them and he said, yeah, I wanna talk about it.

And so we got to that first one, is this disease ever gonna get better? And I said, okay, would you like a short answer? Would you like a long answer? And he said, well, given my memory, I think a short answer is better. So I said, no, it's not getting better. You know, you have an illness that's progressive in nature.

You are doing all the right things by exercising, and eating right, and staying socially engaged, and mentally engaged, and physically active, and all of these things. You have a rockstar wife, caregiver, you have all kinds of support, but it's doing its work in your brain. You're just staving it off for longer, but we don't have a cure.

So it is going to get worse over time. And he said, okay, that's what I thought. But then when we got down to some of his other questions about how is this gonna affect me physically, his mom died of Alzheimer's.

I started out, I always got my pallet of care hat back on and then saying, you know, if someone lives to the end of this disease, they are full care. They are completely dependent on people for everything, right, for everything. How much specifics would you like to know about how that works? And he said, I think that's enough for today.

Inside I was like, oh, I think that's enough for today too. But I mean, I am a hospice and palliative trained social worker, you know, so I can talk about those things all day. If people want to know that information.

But he still has enough self-awareness to know that it's sliding, he is sliding and it's scary. And he's really, really scared that he's gonna lose his grip, you know, and that it's really gonna, you know, burden his wife. He's always worried about that kind of stuff.

And so to me, it's an honor always to support care partners and also to support people like him because I feel guilty even charging them because I learned so much from him about a walk in his shoes, about what it's really like. He can't control his emotions when he can't remember things. You know, when he, you know, calls me four times in 15 minutes and leaves the exact same message because he can't remember what he said.

And then I inform him of that. And he's just like, what, you know, someone's hijacked my brain, you know? And so it gives me this really, I'm already very empathic, but it gives me a whole nother way to understand. And if I can better understand his standpoint and others like him, I'm way better at coaching the care partner.

So I really value offering that service as well because I think it just makes me more in tuned to both sides of the fence of this. Thank you for sharing that story with us. I see you and what a deeply compassionate and incredibly thoughtful way that you approach this work and who you are as a person.

Thank you. I'm just bursting with gratefulness that this community has you to serve. Thank you.

The weight of the questions that that man was asking, they're painful even to hear you read the questions, let alone to live with them. And who are they gonna ask those questions to? It's not gonna be their PCP. It's not gonna be their wife.

It's not gonna be their kids. So aren't I lucky that I've had this wild and crazy path as a counselor, as a therapist, and hospice palliative care, and all these geriatrics and mental health that I know how to deal with that. And I think I'm uniquely prepared for a lot of that stuff than a lot of other people.

And so that's why I decided just to specialize in that because you could go see a therapist and they may know a lot about that. And I was a therapist for my first three years in Kaiser. And some of my favorite clients were caregivers who had depression and anxiety and stuff because they were caring for someone who was dying or someone with dementia.

And I was like, oh good, I know what to do with them. But much better than a seven-year-old with bipolar or something. But I think being able to show up for those folks and kind of finding your lane is very meaningful work.

It fills my bucket. My family complains that I work too much, but it doesn't really feel like work. So that's the problem.

Because I always wanna do more and touch more lives if I can. That is so evident in your book, Bedside Witness, the way that you just told the story about that man and the way that you're discussing this and how you love working with caregivers. The book is all of these stories about individual people and their families and their experience and how you came into the picture.

And it is so beautifully written. You're a fantastic storyteller. I learned so much about dementia and dementia care from you.

I had no, I didn't know prior how many different types of dementia there were. So it is the kind of book that whether you have someone who has a family member with, or you have a family member with dementia or you don't know anyone, it's worth reading. It's really amazing.

Thank you for that. Oh, thank you. And not all the stories about dementia, but probably two thirds of them have that because that's the patients and families that I worked with for so long.

But my whole goal of the book was that you leave with a visceral understanding. You feel it in your soul from these books and that you, I always say, I wanna shine a light into the lives and living rooms of people living with life-threatening illnesses and their loved ones. So that if you haven't been where I've been in my career, that you can have some empathy and show up, knock at the door, bring a casserole, invite them out for coffee, offer to give them some respite, like do something.

There's this African proverb that I once came upon that said, pray and move your feet, right? So I think people, we need to show up for each other. We need to be there for each other because there's a quote by Mark Nepo that ends my book that says, walk long enough and we all trade places. Yeah.

Right? With the stats on this disease and with our aging culture, it's just, if you don't know somebody now, you will know them tomorrow or next week or next month. And if everybody had to wear a purple wristband for a day, right? To say, hey, I'm connected to somebody living with dementia, it would be the person bagging your groceries. It would be the teller at the bank.

It would be the Amazon driver. It would be everywhere. It is everywhere, but we don't recognize it.

And so I'm like, let's just create our good karma now guys, because we're all, I'm going through it with my own family. I mean, it's just there, but for the grace, it's gonna be us. And if we can start building that community now and reaching out and being there for each other in a way we used to innately know how to do and we'd forgotten, I think short of that, I don't know what else is gonna save us from illnesses like this.

Yeah. That's so true for so many reasons and so many people is don't wait for the reach out. I know for me, when I was in grief, I didn't know what I needed.

I didn't even know that I was grieving. I knew that I had lost a loved one and that grief is the thing that happens, but I didn't understand or wasn't able to connect all the dots that the pain I was feeling and causing in my life was relative to my grief. So there was no way I could discern like who to pick up the phone and call or what to ask for.

And the friends of mine who reached in to say, I'm here, I don't know what you need and I love you, it meant everything. It means everything. Yeah.

So reach in is what I hear your message being like, we're shining a light on this group of people, this community of people who are terrified, grieving and alone. And in truth, the care partners don't always know they're grieving, right? Right. Because our culture trains us to say, hey, we only grieve after the divorce and after the death and after our kid is, we're empty nesters, but we're not wired like that.

And we start grieving sometimes before the diagnosis even hits. Yeah. And we're grieving all the way along, only they don't realize it.

And grief just sucks you mentally and physically. And so people I'm educating, they're like, oh, that's what's going on with me, I had no idea I was grieving. Like you are.

And so, but it's not recognized because you can't go to the store and buy a card that says, I'm so sorry, the grief you're going through is your loved one with dementia. Yeah. Right? If I was a graphic artist or something, I think I'd create a line of cards.

Yeah. Because I could sell a lot of them. What would the card say? Your first card that you would create that we wanna send to one of these folks, what do the kind words sound like? I don't know what it's like to be in your shoes, but I want you to know I'm here.

Yeah. To listen. Yeah.

I wanna understand. Yeah. That's beautiful.

So beautiful, so loving. And who doesn't need to hear those words? Well, all of us. Create the card line, okay? Yeah.

I'll be in line to buy your first card. Okay, okay, thank you. Me too.

And while you're at it, do that, take care of some of those Mother's Day cards. We don't all need to be selfless. I know.

I'm really gonna think, I think I might do a, some little bit of a interactive campaign with my MailChimp list around Mother's Day and say, take pictures or email me. Like, you know, if you can find a card that doesn't just celebrate selflessness and things, I wanna know about it. Selflessness and- Just the funny ones.

Yeah, the funny ones don't do that same thing, but most of them, you know, because yeah, I keep saying, oh, every year it's great to get one of those cards, but I'm like, no, I am not. You know, my son says, you're supposed to always be patient. No.

You know, that's a myth. I don't care what it says on the card. It's a myth.

I practice imperfection as a parent all the time. And I use that as an example from my own life with my clients about, you know, I might know better, but I don't always do better. And, you know, we have to shine that self-compassion back on ourselves.

Totally. Which is not easy, especially for women, but it's vitally important. Yeah, for sure.

Well, how can our listeners find out more about the important work you are doing and about your company, Compassion Works? Well, the best way to find out about me is just to go to my website, and that's my name, kaymadams.com, K-A-Y-M-A-D-A-M-S.com. You can also find me on Facebook at Compassion Works by Kay Adams or on LinkedIn. But if you just go to my website, there's all kinds of information there. You can email me off my website.

If you have an interest in learning more about coaching, you can just send me an email off the website. I'll send you a link to my calendar for a free 30-minute session via Zoom or phone. And just to kind of talk about what are your caregiving issues that you would need some support on to see if I'm the right kind of person to help you, and if so, how we could work together to help you.

So it doesn't say that in the website, but that's the secret insiders thing. And so if you outreach me, I'm happy to talk with you and just see if I can be of assistance. Great, and we will add all of Kay's contact information into the show notes.

Kay, thank you for being with us today. Thank you for having me, it was really fun. My privilege to know you and be in your presence.

I am so grateful that you are in the world serving in the way that you are. What a gift. Thank you.

Thank you. Thanks so much for joining us on this episode of SoulStirred, Stories of Growth and the Human Experience. We hope our stories have touched your heart and sparked reflections in your own journey.

Remember, while we are therapists, we are not your therapist, and this podcast is not a substitute for therapy. If you find yourself in need of professional support, please don't hesitate to seek it. Your wellbeing is important and there are professionals out there who are ready to help.

We encourage you to carry the spirit of growth and connection with you. Life is a continuous journey and we're honored to be part of yours. Stay tuned for more captivating stories in the episodes to come.

Until then, take care of yourselves and each other.