TEEPA SNOW: EPISODE LINK

TRANSCRIPT:

COLLEEN;

Welcome to the show everybody today. We are having a really important conversation

with Teepa Snow and Teepa Snow is a dementia care specialist who talks about

positive approaches to care Welcome to the show Teepa.

Teepa:  Thanks. It’s great to be here

Colleen: Well, we appreciate your time and like Bridget and I there are so many women in

our demographic and men who are either caregivers or have a family member who’s

getting older and is starting to have cognitive issues. And I thought maybe we could

start with the fact that dementia is an umbrella term because I don’t think a lot

of people realize that. Could you kind of explain what that term dementia means?

Teepa:- Yeah, so it’s called a syndrome. It’s a collection of symptoms that fit under the

umbrella. In other words, your cognition is deteriorating. Something about how your

brain is working, and it has to be at least two different areas or chunks of brain

function that are starting to, not just like you’re having trouble with the words.

I mean, you literally are losing some brain you now. Now, historically, it started

off with some chemistry shifts and changes, but now it’s getting into the nitty

gritty of you’re actually losing synaptic connections. You’re losing brain cells.

They’re starting to fritz, and then they start shrinking, and then they start dying.

And so the umbrella term means that you’ve got something that right now is affecting

at least two parts of your brain and as it progresses it’ll affect more. It is

progressive. We don’t have a way to stop it or turn it around right now despite

what people might read on the front page or the headlines. We might be able to

slow in some cases for some dementias. We also know that it is going to get to

where the person is longer able to care for themselves, it will progress to a point

of dependence on all things. And then it will get to a point where the brain can’t

run the body anymore. And so it’s a terminal illness, which people don’t tend to

think about that much, but this starts off with just some thinking issues frequently

or language issues or orientation to where I am issues or ability to hold on to

new information issues, or maybe visual issues. So under the umbrella, one of the

big types of dementia is Alzheimer’s. And that’s too often what people think, well,

dementia Alzheimer’s is all the same. It’s like, no, there’s over now, as of this

year, recently over 130 variations of dementia. And Alzheimer’s has about six or

seven of them in its bucket, because not all Alzheimer’s is the same, but then we

have frontal temporal dementia, we have Lewy body dementia, we have vascular dementia,

we have posterior cortical atrophy, we have… So I can go on and on, I mean, we

have over 130 different variations. And so it’s not just about memory problems.

I mean, usually one area of dysfunction is your hippocampal area, which is for

learning and memory, wayfinding and keeping up with time. – Right, yes.

– So that becomes an issue, that’s one area for sure.

Bridgett – Right, I know I watched

your, I went on your website and I was watching some of your videos and I thought

it was so interesting. You did talk about the parts of your brain that what goes

first was the last one to develop. Can you share a little bit about that?

Teepa: – Yeah,

– Yeah, so you actually have, now, so this is the tricky part. I’m gonna see what

you all know about your brains. How many brains do you have up in your head? What

do you think? – How many brains? – Right?

Colleen: – I’m gonna go with one.

Bridgett:- One big brain?

Teepa:- That’s what you think, and we’d be wrong because there’s actually three distinct

brains up there.

Colleen:- Really?

Teepa:- One is one we think with, and that’s called the

cortical brain. And then underneath that is the primitive brain that keeps you going

whether you’re awake or asleep. I mean, you don’t have to think about swallowing.

You just do it because it’s part of the primitive brain function. You don’t have to

think about regulating your temperature, which when you, I notice, you know, like you

have hot flashes, that’s that time when I have a hormone shifting going on in my

body and my brain and my brain can’t do it like it used to. It’s like the

estrogen isn’t there. And so my brain can’t do its job like it used to. So we

often have brain fritzing at various points, adolescence, you know,

menopause when we’re really sick, things like that, we can have some fritzing. So

our primitive brain is sometimes gets impaired, but it recovers, it heals, but not

necessarily with dementia. And then The third brain is your cere which is the little

brain  underneath. If you started to cough,  without thinking, what do to cover your mouth?

Yeah. you did two did different things. One of you brought up because you were

trained

is the old, old, of covering your mouth when you cough, so you have an older

cerebellum than your partner. I mean, I don’t know how to break that to you. You

may not have, you may not be older, but your cerebellum is older.

Colleen: I am older, six months.

Teepa:  Well, see? Yeah. And so that old habit that was instilled as a child stayed

with you, and now you have it without thinking. And so what you’re going to do is

put your hand to your mouth, and that’s like with COVID, It was like, I’ll do

that, and it was a lot of tension, right? But what you have to do is you have to

use your thinking brain to cut the cerebellum off and say, wait, no, you’re not

supposed to cough in your hand because then you might touch somebody or touch

something. Okay. So what you want to do with the lobes of your brain called sensory

motor is I need you to use your elbow. I need you to use your elbow, but you

have to, you have to send that message from the prefrontal, the executive control

out here and what triggered all that was the primitive brain doing something. And

then you have vision where I saw what happened, but you can’t see yourself, so you

didn’t notice. And then I said something about it, which is my temporal lobes.

Colleen: Yeah, that’s so much information.

Bridgett: And to be fair, I cought in my elbow. I was ateacher. We taught it. No, – Really, honestly, it started with COVID. You’re right.

Bridgett- Yeah, and for me, it started back when I was teaching.

Colleen:  – Yeah, see, that, for me, it was COVID, but before that, yes, I would cough.

Teepa- You would have done, and so your brain, sort of without thinking, when I said, you know, what do you do when you cough? Your brain just went to the automatic, and then when we talk about it,

your brain goes, oh yeah, that’s right, I’m supposed to do this, but it’s still not

like automatic for you. So it’s just hesitation. Now, my behavior around you makes a

difference. So if I go, Colleen, we talked about this, I just told you,

how am I making you feel right then?

Colleen: Like I did something wrong.

Teepa: So your primitive brain doesn’t like that. So when it sees me, guess what it already thinks?

Colleen: You’re going to be mean to me. you’re going to be mean.

Teepa:  And so it’s called anticipatory distress. So where people think people living with dementia can’t learn new things, they do. What they learn frequently is you don’t like me, I don’t like you, what you’re going to do is going to hurt, I don’t like how you’re being. And so I try to either avoid you or I argue with you because those are skills I keep.

Colleen:  – Wow, yeah. – That’s so interesting. And it seems like with dementia, Bridgett and I either, you know, we have personal experiences, but also so many of our friends have family members with dementia, whatever category it would fall into. It seems like you kind

of in the beginning make excuses. So it’s not until they’re a little further along

that you actually say, okay, something here is wrong. And it’s actually past the

beginning stages. Can you talk a little bit about that?

Teepa: Yeah, our society has such misperceptions about normal aging, typical aging. We tend to think, well, all people get like that. It’s like, no, they don’t. Here’s the challenge.

By age 85, about half of us will have significant cognitive changes that are

associated with dementia. So we went from 10 % of us at age 55,

65, 10 % to 50%. So during this wave of transition,

there’s a lot of desire for this to be normal because if what you’re doing is not

typical, not normal, not only is your life changing, so is mine. Everything about

what I thought would happen when you got older and I got older and how we were

gonna spend our time, whether it’s a spouse or a parent or a sibling or even

heaven forbid, it’s a child with autism, with Down syndrome,

with mental health issues. The risk is higher for that population. So those of us,

I used to be in your group, those of us in the middle generation, I’m moving into

the upper group, those of us in that middle group feel the pressure often of this

noticing but not really thinking. I mean it’s just when she was

tired, she was you know, well that was just that one time, I mean it doesn’t happen

very often and that’s true. The tricky part with dementia it’s progressive and so at

first when we keep putting it off for aging, we miss lots of opportunities to choose

something better for both of us recognizing, wow, she didn’t forget,

she can’t actually get it to latch into her hippocampus. So when she says,

well, what time is my appointment? And you’re like, mom, I told you.

Now, and that, ooh, there went that voice. And you wanna go, ah, so you’re wanting

to know what time the appointment is. You know what, let’s look. I think it might

be on the calendar. Let’s double check, though. And I take her to the calendar and

we look together and then her brain sees it. And she goes, Oh, two o ‘clock.

Yeah. Okay. Okay. So it’s at two o ‘clock. Now is that tomorrow? I said, Well,

today’s Monday. And, and then I run my finger. We’re on the count.

She goes, Oh, yeah, no, it’s two days off Wednesday. It’s Wednesday. So it’s not

tomorrow. No, I thought it was tomorrow. And what I’m noticing as a skilled

practitioner, wow, not only did she not hang on to the data,

she’s a little getting lost in time. She’s having more trouble keeping up with

specific days, how far off. And she thinks she remembered. She actually didn’t.

Without the thing on the calendar,  guess how many more times she’s

going to ask you yeah, that’s what that was my question. Yeah, it’s like it and

they’re gonna ask you that again and again.

Bridgett:  Yeah, right

Teepa: So we have to get so much better at oh you’re wanting to know what time your appointment is tell you what let’s go look on the calendar I think I might have put it on there now my goal.

Ultimately, maybe is that she says, you know, if you and I can say you know what

it might be on the calendar and then she could go to the calendar on her own a

couple times after I’ve done it. But if she gets there and she goes, “Well, what’s

today?” If you might as well just make the trip. It’s good,

actually.

Choose now. What are you going to do with it? She actually needs me. It’s not just

the calendar. She actually needs me there to feel comfortable making sure she knows.

Bridgett- Right. And you know, , your positive approach to care, which is so

important. You know, I was reading this and Colleen, you know, we both have family

members, I was reading it with my husband and was like, oh, I’m sending you this,

I’m sending you this information. And it was so helpful because I know what he’s

going through with one of his parents is so concerned about his finances.

And my husband is really the most patient person, but he’ll make, oh,

a spreadsheet. Okay, I’ll send it to you. Okay, I’ll send it to you, ’cause we

don’t live near him, but we go and—

Teepa- All the distance caring. Oh my heavens, that

was super hard.

Bridgett- That is. And fortunately, the spouse of this person is there to

help. But what he’s like, I thought I was going to make it easier about changing

like to make it bigger than that really scared him.

He was like, he, you know, called, he still, he still calls and was just like,

I’ve made a terrible mistake and it is they start to get hyper focused on things

like their bank accounts, their finances.

Teepa: Why control? It’s about control because

that’s super important and I worked hard. And now, so there,

now did I do the bills? I think I did the bills. How many times do you do the

bills? Most of us, if we still do them by hand.

Bridgett: – Yeah, yeah, every month, right?

Teepa: – You get your bill once a month, yeah. – Yeah, so now it’s like, was it this time

or last time? I think, do it, I can’t remember if I did, oh my God. And then

they send you something that sort of looks like a bill, and that’s what puts this

current generation at high, high danger risk of people taking advantage of them with

fraud and financial abuse, because people know to send something that looks like a

bill overdue sending to a collection agency. And this group currently talking about,

man, they are like, “I paid that, I swear I did I pay that, I must,

oh my God, I owe him money. This is ridiculous. Oh, I better send it in.” Without

thinking, right? Or somebody calls and says, you know, somebody’s trying to get in

your account. Colleen, I hate to say this, but someone has been trying to get into

your account. Now, I had your password. I think it was either a birthday or a dog’s

name or something, but I’m not. It looks like they’re trying to use that. Tell me

what yours is so I can verify that what they’re putting in is inaccurate. Right.

Yeah. And in that moment, if we still think somebody is typical aging,

we’ve totally missed the boat and they’re past that and into high risk zone,

because they really, they’re wrong.

Bridgett:  Right. Right.

Teepa: You know, and they don’t catch it.

And so we find out after the fact, in about 80 % of cases, there’s already been a

significant chunk of resources lost.

 

Colleen: Oh, yeah. With, when you do start to notice

that someone you know or love is starting to show signs of dementia, what can a

person do? Because I know for me it was like inventing the wheel. I didn’t know

where to go or what to do.

Teepa: – Yeah, one of the first steps to figure out is who

should be the person to get curious. And it needs to be a curiosity, not an

accusation. So I’ve got to figure out who in the team, who in the group is the

best person to go, you know, hey, Bridget, I wanted to check in with you. How have

things been going for you? Super, okay, or not always so great anymore.

What would you say? – Yeah. – Oh, for me, for personally. – Yeah. – And so, I mean,

honestly. – For me, I’m great. – Yeah, yeah, yeah. – So if the person says it’s

great and it’s like, oh, no. – Yeah. – Because then what I know is they don’t have

awareness of the things that we’re talking about. Somebody goes, well, you know, I’m

getting older. It’s just hard to hold on to things. I mean, I think I’m slipping a

little slipping a little bit, but like nothing that people, so you notice something.

So what kind of things? So I mean, the first is to find out where are they? Are

they somebody who’s totally not aware? It’s called anosognosia. It’s a symptom of

their dementia. Are they somewhat aware, but they don’t think it’s that much of a

problem? Or are they totally aware and they’re super anxious and they’re nervous

because they’re afraid other people will notice. They’re starting to withdraw from

things. They’re really upset with themselves. I can’t figure out why I did that.

That’s ridiculous. I know better than that.

And so once we recognize where are they, we wanna look for resources for them and

for us. I mean, we’re gonna need support. There’s no doubt about it. This is not a

rodeo to go to on your own. You wanna go, okay, am I wearing a, am I doing the

buckin’ Bronco or am I riding the bull? Or is this a barrel race? Or what’s going

on here? Because we don’t want to mess around with this. This is like, yeah,

this is really hard having some changes and people saying, you know, you need to

not be driving. And I hate that for you, because it changes a lot, doesn’t it?

Bridgett: Oh, yeah, that was that was a tough one.

Teepa: For right now, I mean, for right now,

the doctor said caan you not to drive right now? So let’s talk about what we’re gonna

do for right now. Who would you be okay driving if not you? I mean, I know it’s

uncomfortable, I hear you. This is just not okay. And then somebody might say,

I wanna fire him, fire him. And it’s like, whoa, wow, GZP, where did that come

from? Well, that came from a place of real distress. And so when we hear words,

forbidden words that we didn’t use to hear out of somebody’s mouth in those

situations, rather than going, “Mom, what do you do? Don’t talk like that. You know

better than that.” What we want to do instead is go, “Wow, you’re really mad at

him.” And just acknowledge the emotion that led to that and be a little bit, “Yeah,

it’s really hard to hear that. I hate it. I hate it for you. This is going to

make it super hard for you because you’ve always been independent. And it feels like

somebody’s trying to take something away. Yeah. And I don’t, I can still drive.

You’ve always been a good driver. It’s called validation and reflection. You have

always been a good driver. So it’s hard when somebody says they don’t want you

driving right now. How many times have I said right now? Right now.

Bridgett: Yeah. That’s good. Yeah.

Colleen: So many people, I think, especially in our generation, want to diagnosis. They want to know what it is so that they can help. But with 120 or

130 different forms of dementia, how do you get evaluated and how do you even know

which one it is?

Teepa: Yeah. So, I mean, there are people besides physicians who are

pretty knowledgeable about dementia. And there are some physicians who are not at all

knowledgeable about dementia and one size fits all. And it’s, you know, what does it

matter? And in some cases it does. There are some types of dementia.

You really want to know that’s what I’m living with because then I can make some

best guesses as what I’m seeing is their dementia versus that’s not part of their

dementia. I think they have a UTI. You know what? I don’t know that this is part

of their dementia. I think they have an anxiety that’s getting worse. I want to

look at what’s going on with the anxiety She’s always been a little anxious, but

this is over the top. I mean, she’s actually thinking people are coming in at night

and taking things. It’s like, okay, is that bit of a pattern? No, first time it

happened. It’s like, we need to look and see what else is going on here because

something’s stirring the pot and I don’t know that it’s dementia. So I would say

some of it also depends on your partner, the person who’s living with dementia? Are

they agreeable or are they fighting you tooth and nail? And if they’re fighting

tooth and nail, then I go to good resources and say, okay, well, the symptoms are

consistent with this kind of dementia. I mean, you don’t have to have a diagnosis

to see symptoms and then go, okay, so we want to be super careful about this.

Let’s talk about what she does in the kitchen. Oh my God. You know, I found ice

cream in the closet. She keeps, she’s tried to use the microwave two times as,

as the refrigerator. I find stuff in there. It’s like, okay,

so she really doesn’t do a good job of knowing where things go anymore. I mean,

when we’re in that space, I would say, wow, how often do you notice that? I mean,

this would be my evaluation and you’d say, well, pretty often, I mean, I pretty,

pretty much every grocery trip. It’s like, okay, here’s the good news,

bad news. I don’t think you’re in the early state. I think this has been going on

quite some time, and it’s escalating, it’s getting more. So now you’re going to have

a lot to learn in a short window of time.

And 80 % of the time for family members, that’s what happens. You’re already in

middle state dementia when you realize it in 80 % of cases. And that’s even if you

brought it up to the doctor, they say, well, she’s 82. What do you expect? It’s

like, brain to work like it didn’t she was 81. And it’s like,

is it not doing that? So we should have a conversation a lot sooner than we

thought, you know, when you have two to five years, right, your loved one,

you know, they’ve had this.

Bridgett:  Physicians have set medications out and the loved one is

very resistant to the medications or anything to help. Is there, you know,

what is any advice there, you know, for that situation? – What language can you use

to make them more amenable?

Teepa: – Hey mom, I have a big favorite asking you and I know

you’re not gonna like it. I already know that your preference would be not. So this

is not about you. This is for me. I’m asking for a favor. I want us to try the

medicine. I really want you to try it for three weeks and if after three weeks you

absolutely hate what it does to you or it doesn’t feel like it’s doing anything for

you. Let’s talk again. But I’m going to ask you for a big favor. This is not

about you and I know that and that’s what makes it super hard. You’re doing to me

a huge favor But I just want to see if there’s anything we can do to make things

a little better, and I get it that you’d rather just leave it alone.

Yeah, can we try.

Bridgett:  I was just going to say that’s something you say throughout. I noticed throughout on your website is the type, the way you say things. You can, you So you talk about, you know, don’t be dishonest with them and the helping. Can you share a little bit of that advice?

Teepa: Yeah. Now, one of the tricky parts is we think we can sneak things by people. And

unfortunately, when you get dementia, you don’t get stupid, you get dementia. And the

dementia means there are pieces missing, but it also means there are pieces present.

And so you have to be further in a dementia to be able to slip medications in

things and have somebody not notice. And people generally don’t pick something good.

If you do need to use medications for someone, I recommend strawberry jam because it

has texture and is super sweet. And so it hides a lot of the bitter,

sour taste that might be in medicines. And if you have bits and pieces that didn’t

break apart, it still feels typical in their mouth. And so they swallow it without

thinking about it. But for early on, I’d rather have someone work with me because

if they find out, I’ve been dishonest. If they catch me and they might,

now they can’t trust me. And the tricky part for us is this is gonna get more and

more and more intimate. So if I don’t trust somebody, how many of you think you’d,

I mean, either one of you be interested in getting naked in front of me. – Yeah,

nope.

Colleen & Bridgett- No. – Thank you.

Teepa: – How about having you take a shower while I stand outside?

Colleen & Bridgett:

– Right, right.

Teepa:- How about letting me buy food and make food for you and then have

you eat it? – Yeah. – You know, and so we build relationships over time,

built on trust and faith, but at the same time, I have to be careful how much I

share. So I could say, ooh, would you come taste this for me? I’m really curious,

see whether or not it seems like it’s the recipe that you used to make ’cause I

tried to make it that way. Taste it and see what you think. Rather than mom, you

have not had anything to eat today. You’re telling me, yay, you didn’t eat. I mean,

your food is still here on the plate from lunch. You know, you’ve to have something

which sounds like a demand or mom you can’t have any more you already ate I didn’t

eat anything this is what are you talking about the first time I sat down it’s

like do you see that plate that empty plate that’s a plate you were eating on I

mean it’s so tempting to use our reality to try to guide behavior but if they’re

in a different space I mean it’s And she’s not saying, “I didn’t eat today because

she wants to be tricky.” She’s saying, “I didn’t eat today because there’s a missing

piece of her memory,” which allows her to know, “She just got up from the table.

She truly just got up from the table, went to the bathroom, brushed her hair, and

she’s back like she’s ready to eat lunch.” And it’s like, “Wow, really not paying

attention to the sensory cues in your body, are you? Whoa. Hmm. Oh,

Oh, hey mom, before you eat, I have a big favor to ask of you. Could you, could

you help me, come look at this for a second. This thing up here. Now, what do you

think about that? Should that, is that the kind of picture that you can, would you

want that hanging at your house or not? What do you think? Oh, you want a stool?

I mean, and so that’s all it needs. Okay, now what happened to I need to eat

right now, because you were full and you did have your satisfaction.

Bridgett: Yeah,distracted.

Teepa: What happened to it? Yeah, that went away. Distraction. Yeah, because I

used you, I actually attracted you to the picture. And so I try to get people to

quit saying the word distraction and move to attraction, because I actually need you

to be attracted to something else. So you’ll let go of the thing you were holding

on to. Okay, so It’s a very different way of thinking about it.

It’s like, ooh, I want to show you something. And as soon as I say that, notice

that your brain goes, yeah.

Colleen: Right. Bridgett and I both completely got attracted to

the picture.

Bridgett: It’s so, yeah. It’s very similar to what when I was in education,

when you worked with behavior of children, it’s so similar from what I’m here if

you work with

Teepa: — It’s because brains are brains, whether they’re dying or whether

they’re developing. And so when I do this and I’m really interested in, what happens

to you? We look at it. We’re attracted to it. Yeah. And then when I put it, if I

put it right here and I say, now I’m wondering,

I think we should try one of these or do you think we should just give it to

somebody else? What do you think? Yeah. – I try one, I think we could try one.

(laughs) – Now notice that I put it so that it’s more toward you than I am.

So what do you think somebody might do without thinking? – Just grab onto one of

them. – Yeah, and I say, yeah, let’s see what’s in there. And now all of a sudden

I’ve got their hands and their eyes working together. I say, ooh, tell you what,

put it out on the plate and I’m ready for the next step and I’m ready for the

and all of a sudden, you know, we’re done with the task a little different than

mom. You need to have something to eat. Come on, come on, come on.

Bridgett: – There’s so much valuable information on your website and we will have a link in the show notes

for it. One of the things you talk about is hand  underhand approach. – Underhand.

Teepa: – And I think that was really– (laughing) – Hand under hand. – Yeah, hand under

hand. – My hand is under yours, yeah. – Versus hand – Versus handover. – It’s super

hard. – Yeah. – Yeah, so hand over hand, I learned that when I was an OT. We wrap

our hand around the outside of the person’s hand and try to get them to do

something. And there’s clinical evidence when you do that, they actually try to push

back from you. So I thought, well, what if you use the palm of their hand? What

if you take their hand and you put your hand under and then you manipulate the

object, but they are holding onto your hand, they’re holding onto your palm and so

their hand gets to feel what your hand is doing. I had people, no joke, we were

doing the hand under hand so I’m here supporting them and they’re taking a drink

and taking a drink and then I say here you go and they take it and then they

start drinking without me because once I queue them up their brain goes oh I know

how to do this and then they just take over which is huge because it means they

are firing synapses in the sensory motor cortex that otherwise they’re not.

And so I can teach people to be more helpless or I can keep people activated and

being engaged and that means if they’re engaged in that then they’re less likely to

be engaged in things I don’t want to do it.

Bridgett: That’s yeah you know another one that you were talking about on one of the videos was at eye level or below eye level.

And kind of, can you talk about that?

Teepa:  – Yeah, so human beings take in a whole, a

huge amount of visual data in any moment in time. Typically, however, we take in

center field and then we take in peripheral, the edges. And we’re really focused on

the middle ’cause that’s where we have the best vision. But we notice things off to

the side, like movement or color flashes or something, something happening over there.

And when we notice it, we turn and we look and now that’s our center field. With

dementia, I can only handle so much data. And so what happens is my occipital lobe,

which is where vision is processed, I can only take it in. And so my visual field

of what I can pay attention to, this is early, this is middle,

this is late. I can only get one image to line up.

If I try to do both, I either get double vision or blur. And so when I get to

monocular, I have no depth perception. But it means if you are above me and I’m

watching where I’m going, I don’t even know you’re there. But it means if I’m

looking at So I’m missing whatever I’m tripping over, which could be a step, it

could be a dog, it could be the hassek. So really looking at the environment and

going, okay, what is below knee level between one chair and the chair across the

way in the living room, and what is above shoulder level that they might not notice

that I need them to see in which case I’m going to actually lower it down so it’s

where it should be. So I’ll move important things out onto the counter or a low

shelf on the refrigerator in the workspace, but I will move things I don’t want

people noticing as much up overhead and that might mean an added deadbolt on the

door with the key nearby, but up above head height, so that even if they undo the

lock and get ready to go out at 3am,

I have some extra time to go, “What is that noise? Who’s doing? What is she doing?

Oh my god, she’s going out.” And I might also add an alarm so that it wakes me

up, and then I know, “Oh boy, oh boy, she thinks it’s 7am.

It’s only two She got up to go to the bathroom. She thought it was time to wake

up, but she left her pajamas on and she’s going outside And it’s 32 degrees

Colleen: For people who have a loved one recently diagnosed or

Unable to now live alone and they’re coming to live with you. What are some of the

Best things that the caretaker can do to kind of set the space for the patient to

mention the loved one.

Teepa: Good idea. Good question. And the first answer I’d give you

is prepare whoever’s living with you. Okay. Because things are going to be very

different than when people are visiting before. The second is look at the house they

came from. Where’s the bathroom from their bedroom. What do the steps look like?

How’s the lighting in the house? Where are things stored in the room they’re going

to be in? Is it to the same side of their body? Is it to the same direction of

travel? Where are things that they typically look for?

And you’ve known that they’re starting to struggle. And for the first few weeks,

I need to plan to be more around and less unavailable. But I also want to really

be thoughtful about, “Oh, hey mom, come with me. I want to show you something.” So

I’m actually doing a tour guide thing multiple times without it feeling like that.

Now, oh, did you want coffee? Here you go. Look right here in this cabinet. And I

might actually, if it’s fairly early, put coffee cups at the bottom of the cabinet

marker to say, oh, this is where coffee cups are.

But later on, if somebody’s actually a little further along, I might actually set

her coffee cup out on the counter.

So there’s less hiding and seeking, which is what it might feel like. I may want

to empty out the closet and just have a few things in there so that I’m not

getting flustered and frustrated with packing the closet, and then I have to pack it

back up. And then unpacking the closet or changing clothes, changing clothes, changing

clothes, changing clothes, changing clothes to the point where you’re like, I’m losing

my mind. And it’s like, oh, so before you make the invite, just make it through,

what’s the most important system gonna look like for when mom moves in because her

dad or my in laws or whatever it might be. It’s a lot more to take on than you

think it is when somebody’s already shown some solid signs of change because we put

them in a new environment and anything that was a little bit of an issue in the

old environment can really become a major issue. So you wanna be ready for the,

hey, listen, I mean, it’s been lovely staying with you, but I gotta get home. I

can’t stay here anymore. And it’s like, mommy, remember,

remember, this is that moment, you got to go, oh, so you’re ready to go home. Oh,

shoot. Man, I had thought that you would stay for at least another day or so,

because I mean, to be honest, I’m counting on you.

So I better have some activities that I think would engage the person that I need

them for. Because it’s not at all uncommon. Right after I get there, I’m ready to

go back home. But I wasn’t doing well at home. That’s why you made the choice to

move me. But I think if I just get back to my place, I’ll be fine. I’m not

right. I’m wrong. But I think I’ll be fine. So I’m going to push to go home. And

so being prepared for that ahead of time, makes all the difference in the world

versus where you think mom remember we talked this without thinking you won’t be

thinking in that moment you just go mom no no remember you’re staying here remember

you moved up here I never moved up this is a vacation I’m not gonna stay why

would I stay here I’ve got the dog and you’re thinking oh no the dog’s been dead

for two years what are you talking about I mean because again in that but she’s

talking about having her life back, including where’s the animal that made part of

my life work, which I’m missing desperately, by the way, do you have a dog?

Colleen: Yes, we have a dog and my dog is crazy about my mom,

because now the dog has a job and mom has a friend. Yeah,

Bridgett: – Mm -hmm, yeah, it’s amazing. You know, there’s conversations with the loved one on my side of the family, where the person’s aware of what is happening and we’ll have

conversations and say, “I’m never going in a home, I’m never doing this.”

Teepa:  – You’re never wanting to go in a home. I hear you, that going to be one of the scariest things that ever happened. You know what? I think we should do though. I hear you

saying you never want to do it. I’m going to ask you for a big favor. I want us

to visit someplace because I want you to see what this place looks like because you

know the last time I went with you, you know where we went to the nursing home.

And I want you to take a look at what’s out there. I mean you may say the same

thing. I’m not saying you won’t, But I’d like us to check it out. Could we, can I

have a handshake on that? That we can try, I’m not saying anything about going. I

just want you to go take a look at it. Cause Mary lives there. And I want you to

say, hey to Mary. I just, you know, we can go visit her.

Bridgett:- Yeah. That’s been our tough thing is the one in our family is very stubborn. And even to get outside help,

any kind of change, even when my husband and his siblings tried to take turns to

help just so the spouse can see her own children. It’s very difficult.

That will throw him off. It’ll throw him off.

We’re really wanting to help her out. We’re really wanting her to get some relief.

I know that bringing an outside person is going to really put him in a spin.

Teepa: Yeah, there is. So like, okay, so I would say like say,

you are the spouse. Let’s say Colleen is your spouse. Colleen, you’re you’re a

spouse at the moment. Okay. And I put a safe and you’re the one with dementia and

I say, hey Colleen, I have a huge favorite asking you. I have this young guy and

he’s really interested in broadcast kind of stuff. And I know you used to do like

a podcast. I mean, didn’t you do a podcast with with?

Yes, I did. I thought I remembered that he would really like to learn about doing

a podcast. If I brought him over, could you show him some of the ropes? Sure,

no problem. That would be super. Now, I’m going to bring him over. I’ll tell you

something else. He really could use some fattening up, he’s super skinny. So what if

I brought him over at lunchtime, you guys could eat and then he could show you

about the, now I’m gonna leave the sandwiches in the fridge. So maybe the two of

you could get out the sandwiches and have lunch and then you can do it, show him

the studio thing. – Okay. – Now, what did I take out of the arrangement?

– That you need help. – That he’s at aid. at eight. Yeah, that he’s yeah. There’s

no he’s helping her that person it’s simply he could use some help he’s looking to

learn how to do something and I pick an old old skill that somebody has that

they’re still probably pretty good at whatever it is if it’s science history whatever

it might be about and I say I have a young guy or I have somebody that really is

curious and and I knew you’d be the person. And so we bring them in not as

someone for helping, but for someone whose relationship building. And we involve some

food if at all possible, so that we sit at a table and we chit chat a little bit

and we get a chance to have stuff. Because men are more challenging often than

women because guys have to have something to talk about because they’re not big

talkers. And so given them something to focus on, maybe bring props, bring something,

go somewhere. Oh, you know what? He really wants to see the barn. Oh,

yeah. Well, the barn. Yeah, I could show him the barn.

Colleen: Bridget, you could show him

the barn.

Bridgett: Yeah, what’s to see your golf clubs?

Colleen: For the, for the, You know, we are adults,

but we are children when it comes to parents doesn’t matter their age. Yep. How do

you deal? What suggestions do you have? Or much better.

Teepa: That was so much better than how do you deal?

That was that brain thing going Like

the way that came out Smart how your brain picked up on that.

Colleen: I was like, that doesn’t sound good. My mom wouldn’t like that You know, I shouldn’t say it like that.

Teepa: That was good. And it was good you were with me because I don’t hold it

against you. She might.

Colleen:  – Exactly, she probably would. But what are some of the

suggestions you would offer? Because I know for myself, it’s like losing a piece of

that person a little bit at a time. And I know for Bridget’s husband, it’s the

same way. How do you, there’s so many things happening at once. How do you kind of

deal with that as well? What suggestions What suggestions you have for people that

you will need a support person to grieve the loss and I what we make the mistake

of doing is thinking.

Teepa: Well, I mean, they’re still there. I mean, it’s not like I

actually lost them. And it’s like, no, you need, you need somebody either support

group that has part education, part support, or an individual who does both education

support. So you can learn, but you can so grieve and let go of the loss, because

you are gonna lose. I mean, sometimes there’s momentary loss for a bit, and then it

becomes a more transitional loss, and then it’s gone. And so what we help people do

is they tell me what you still like about them. Tell me what they’re still able to

1. Let’s look at what they can do, and then let’s grieve what’s missing, because

we do wanna grieve that. That’s really different. And that was a key part of who

your dad was to you. So it’s really hard. So, you know, one of my suggestions is

maybe you aren’t the one to talk about mom around dad if you’ve lost her,

because that’s too hard. He keeps thinking that she’s lost, you know,

she’s gone, and he keeps talking about her like she’s out having an affair or

something. I mean, and those are real situations people have. It’s like, why would

mom ever have an affair? Well, she’s not here, is she? And in that moment, you

cannot, I don’t care what kind of kid you are. You’re like, it’s gonna be super

hard not to say, dad, the reason she isn’t here is she died. Come on, because in

that moment, it hurts so bad. It’s not a safe space for you and him. And so

someone else needs to pick up that brick and bring it forward. You’re wondering

where she is and it is, you’re right. You know, not having her here is really

hard. Did you need her for something or you’re just missing her?

Now, I can do that because it’s not my desk. Exactly, yeah. Why is he bringing up

mom? Well, what is it about mom and missing mom that all of a sudden came to the

surface? He’s like, “What in the heck? Where did this come from?” And I can be

curious because I’m not hurting so much. And I think it’s really important to

realize you are gonna be losing things that you care a lot about. And it’s like,

“Ow.” But I don’t wanna do that in front of the person. I wanna go grieve my loss

to the side and be present for them. And it’s like, “Yeah, this is really hard.”

So the first time if it happens where I look at you and I go, “No, you don’t.

Now, are you from church or are you the grocery lady?” That’s happened in that

moment. Yeah.

That’s the moment where you have to go, “So, you’re wanting to know if I’m from

church or the grocery.” You know what? I love church and I do go there,

but I’m not knowing if I’m Teepa and I’ll just go, “Hey.” And in that moment,

they go, weird, you know, my, my daughter’s name is Teepa. And it’s like, no joke.

Really? Is she a good daughter? She challenges. Oh, so now you’re trying to get

inside the information. Get inside the scoop. Cause my mother -in -law complained about

me to me. Oh, how funny. It’s, it’s yeah.

Bridgett: My mother, she passed away 11 years ago and just the very last year dementia and I’m one of 12 kids and I would stay with her I’m number 11 and one of my sisters was her

main caretaker but I would give my sister a break and come over and she took

a nap and she woke up and looked at me and said do you have any brothers or

sisters and I was just like yeah I do and then my sister came home and said

something to her about she looked at me and said, did you know she is an only

child? And then my sister was like, she’s your daughter. And then she said, well, I

wanted to know if you knew that.

Yeah, it was, it was, you know, it was fine. It was just fine.

Teepa: But there are issues that moment of like, your sister embarrassed her a little bit. It was like, well, I just wanted to know if you know.

 And my mother was not the type to be like

that. She would never be like, oh, I know. So it is, it is very interesting. And

you just have some really just such valuable information on your website.

And you do online as well. I know you’re in North Carolina, but you do online.

Teepa: We have all kinds of stuff because, you know, the pandemic got it to where you better be able to find it when you need it, because you can’t go anywhere. So we had, We

had stuff before, but after the pandemic, it’s like, okay, we better figure out how

to give people what they need when they need it because we’re talking 24 /7 all

around the world. I mean, in the reason I know what I know is I’ve made a lot of

mistakes along the journey of 45 years of clinical practice and family members and

friends and more family members. So important.

Colleen:  Yeah, really, we can’t stress enough to our listeners who are going through this journey, go on the website. Again, the links will be in the show notes because you have

even in just the gems of the brain.

Bridgett: We didn’t even get to the gems. That was, I was going through the gems and I was like, are you an Amber? Are you this? Yeah,

yeah, I tried it.

Teepa: It opens up conversations. It does. And every night you guys are

beautiful pearls. And I am so glad you are because without sleep, you will not

survive. And that pearl state is when you’re inside yourself recovery. And it’s one

of the things carers forget is take care of yourself. We need you there. And you’re

not second fiddle. You literally are essential. Literally. Yes.

– Thank you for the opportunity.

– Absolutely, and we can’t wait to share this with our listeners, ’cause we know

there’s so many in our demographic that are starting to experience this with their

parents, or like you said, a sibling, or a spouse, or God forbid. –

but it happens ourselves.

Teepa:  And recognizing, you know, I could use some help because

peer support is essential. and reaching out when you think something’s happening could

be just age related, but it might not. And rather than let it go, get it checked

out with somebody you trust, someone you trust. One last question.

Do you find that, you know, when people are questioning whether it’s just some

memory loss because they’re getting all the personality changes seem to be that kind

of what personality changes, yeah, or language shift like I can’t it’s not people’s

names I mean yeah people we have trouble with names it’s you know where we go to

eat shoot it’s right down there they have the

the it’s like a shoot let me think it’s a hamburger they have hamburgers there but

you don’t get a hamburger you get the other thing with the shoot.

I mean, that kind of impairment in finding words, and I’m trying to work around

them, that’s pretty significant. That’s not at all typical aging.

Now, it could be anxiety and stress or sleeplessness or issues with having

circulation problems in the brain, maybe diabetes or, but it definitely should get

sort of looked at a little bit more because that level of not being able to find

the word restaurant,

hamburger, chicken burger, I mean, whatever it was, I was not able to locate nouns.

My nouns were missing. And I knew what I wanted to say. I knew exactly what I was

talking about, but I couldn’t find those words. That’s one of those atypical dementia

kind of first symptoms. And it can get misunderstood as, well, maybe she had a

stroke and there’s no evidence I had a stroke. And so it’s like, well, what’s going

on with her? Oh, you know, she’s just really anxious. It’s like, maybe, or maybe

it’s the start of a primary progressive aphasia. Thank you so much, Teepa Snow,