Caring Conversations

Melissa Therrien, RN (00:01)
Good morning and welcome to Caring Conversations. This is episode four. How exciting. I have my co-host here, Liz Lewington. And today we're talking about, your parent showing signs of dementia? What are the behaviors to watch for? Now, Liz, I don't know about you, but this is one of my favorite topics to talk about because everyone has a very unique journey along the.

Liz Lewington, LPN (00:07)
that happen.

Melissa Therrien, RN (00:28)
dementia trajectory and there's still lots that we are learning. So yeah, let's kick it off. I should introduce, sorry, before we get started, we have a guest speaker today. It's very exciting.

Liz Lewington, LPN (00:33)
Yeah!

Yeah, is an experienced caregiver. A lot of education for us all can come from this woman. So it's exciting to have her on. Should we dive into some statistics around dementia and what it looks like for the Canadian population? So every day more than 350 people in Canada receive a dementia diagnosis. Now,

Melissa Therrien, RN (00:53)
Yeah, let's do it.

Yeah.

Liz Lewington, LPN (01:05)
I know you know that the dementia diagnosis comes well into the journey. There can be signs of that for years and years. And even people that as a nurse, you know, when you walk in and you're talking with them, they present as somebody with dementia. And if you rule out everything else, you know that this person has dementia and they don't even have a diagnosis on their file, which is really tragic because there can be a lot that can improve that as well. in 2024, 8.7 % of

Canadians over 65 have some form of dementia. So 8.7 % over 65. And we know that it's trending younger and younger as well.

Melissa Therrien, RN (01:44)
Mm-hmm, yeah, scary.

Liz Lewington, LPN (01:47)
Yeah, it is really scary. Yeah, it used to be so uncommon, but now it's actually sort of part of the usual suspects for us that when there's a memory concern for younger folks. More than 25 different diseases can cause dementia. As we know, dementia is that umbrella term that has so many different causes that live underneath of it. And unfortunately, these are all degenerative diseases that cause that memory loss. Alzheimer's disease is the most common

cause of dementia and 40 % of dementia cases worldwide could be preventable. So that's through lifestyle changes, dietary changes, improvements in like exercise and hydration and, you know, reducing other causes like alcohol use. And then of course, like you can't reduce traumatic brain injuries, but we know that damage caused to the brain, even small damage through the years can cause a dementia as well.

So those are some really sad statistics that we are aware of here in Canada and we know that it is marching towards a bottleneck where our healthcare system is going to be or is going to continue to be really in a distress. So we need to understand how to prevent it but also to care for the people that we have right now that are experiencing dementia from various causes as well as supporting the family that's in their day.

after day caring for this person. yeah, did you want to jump in? What's your, like how does it differ from normal aging? Is dementia part of a normal aging process?

Melissa Therrien, RN (03:32)
Yeah, so dementia is definitely not part of the normal aging process. I think that's a misnomer. You know, I think a lot of people do think that it is part of the normal aging process, but not everyone is diagnosed with dementia and not everyone shows signs of dementia. You know, it starts, think, with that short-term memory loss, right? Where, you know, you're starting to see that mom or dad maybe can't remember something and it's...

maybe it's your name, maybe it's your grandkids name. And it usually starts really small. And like you said, really starts early in the process. And then maybe you notice that they're doing some odd behaviors, things that they wouldn't normally do, like getting to the grocery store and then, know, hi Jen.

Liz Lewington, LPN (04:20)
What?

Jen Cooper (04:21)
Bye.

Melissa Therrien, RN (04:22)
Yeah, I mean, getting to the grocery store and not knowing how to get home. And then, you know, maybe there's also some mood changes like being really frustrated, maybe with these short-term memory losses, with this disorientation. So, yeah, I mean, it definitely is not part of the normal aging trajectory. And I think that really needs to be clear. But I do think, as you mentioned earlier, Liz, is that it is becoming more and more.

Liz Lewington, LPN (04:53)
Absolutely, yeah. I mean, it's for so many reasons. We're living longer lives, exposure to all kinds of chemicals, that sort of thing can actually increase your chances of dementia.

Melissa Therrien, RN (05:05)
Technology, who knows what that is doing to our brains, right?

Liz Lewington, LPN (05:08)
I know, I know, I'm worried, yeah. Did we want to jump in with Jen and see where we can dig in? Jen, you have been a charade, was 20 years you were saying? 20 years? Okay, we'll lie. You started when you were seven, so that was difficult for you as a child.

Melissa Therrien, RN (05:15)
Yeah, let's talk to Jen.

Jen Cooper (05:22)
It's aging me. Close to that, yeah, 18.

Yeah.

Thank you.

Liz Lewington, LPN (05:34)
Yeah, so you worked with people that have dementia in facility settings, is that right? Yeah.

Jen Cooper (05:41)
Yes, facilities and I did a program in Ontario, it's called Behaviour Support. And so I was kind of one of the leading caregivers starting that program in the nursing home. So it was just kind of learning about behaviours surrounding like dementia surrounding behaviours and that kind of stuff and how to manage them and that kind of stuff. So,

Liz Lewington, LPN (05:59)
Yes.

Melissa Therrien, RN (06:03)
Do you have any input as to how dementia differs from the normal aging process or what sort of initial behaviors that people can start looking for in their loved one?

Jen Cooper (06:12)
Well, I think a lot of it is just the forgetfulness. mean, seeing them not being able to finish sentences or forgetting things, repeating themselves, repeating stories. There's a lot. You can see that kind of decline there and it's kind of covering themselves up, right? Like a lot of them try to cover up their own thoughts and cover how they're feeling. So it's like, you just kind of kind of...

keep an eye on them and make sure that they understand that this is happening, right? And get them tested. I think a lot of it in the nursing home, so you're like, they're already coming in with dementia, right? And so think the biggest thing to remember is that all behavior has meaning. So even though they may be acting out or having that, you know, those behaviors, you got to make sure that you understand that you can kind of help them through it and figure out what it is. Yeah.

Liz Lewington, LPN (06:59)
Mm-hmm.

Melissa Therrien, RN (07:02)
Yeah, I think, you know, what you said there, that every behavior has a meaning. It's jumping forward a little bit, and that's great. I want to talk to you about it because, you know, every behavior does have a meaning. And I think a lot of times we label it as aggression, you know, whether it be physical or verbal aggression. So share with us, like, what that looks like and why we're calling it a behavior and maybe a challenging behavior versus an aggression.

Jen Cooper (07:30)
Well, you have, I mean, residents with dementia, don't quite understand what they're doing. I mean, they're living in a world that they're not understanding. They're in, sometimes they're on their own little area and they're not quite sure what's, you and you gotta kind of live in their world and...

help them through it, right? They don't know why they're young, they don't know why they're being aggressive. They're scared. There's these people coming into their rooms that are trying to help them and change them and do things for them. And they're not quite getting why that is happening. And it's, it can be hard on them, right? And so that's how they react. That's how they act out. They don't understand that they're being aggressive. They don't feel that they're being aggressive. They just don't have a clue who you are. You're this random person coming in and trying to do these things for them. And it's like, no, don't get out of my house. I'm looking for my children. I'm, I don't know who

you are or where I am and so now you're making this more scary because you're trying to tell me to do something and I'm not wanting to listen to you. They don't get understand where they are in their life and that they are needing that help. So it can come across as a problem.

Liz Lewington, LPN (08:30)
Yeah, and it's that fight or flight, right? It's that fight or flight, you know, you're, and it's a natural part of being that disoriented. You don't know where you are. You don't, like you say, you don't know who that person is or why they're coming in, you know, and you're going in as someone who wants to help them. But if you can't,

approach them in a calm and comforting way. And that's really the part that needs to be at the forefront when you're doing any personal care is approaching them with a calm and comforting fashion, taking it easy on them. You don't have to go in and say, it's time for your bath and whether you like it or lump it, you're going to go have a bath. It has to be a slow conversation where you make them feel comfortable and getting to know who they actually

Jen Cooper (08:48)
Mm-hmm. Yeah.

No.

Liz Lewington, LPN (09:16)
are and being able to speak to them about their kids. So like you said, and I'm jumping in, sorry Melissa, but you know you're there and it's three o'clock and maybe they feel like they have to go pick their kids up.

You know, those white lies that we tell are always benevolent. It's always for the good cause. You're going in and you're saying, it's three o'clock, don't remember your sister's picking up the kids and they're going for ice cream. you can go, we can go and have a bath right now. And then you'll feel like a million bucks when they get home later. And that is unfortunately a conversation that I've had many times, but it doesn't make them feel.

Jen Cooper (09:32)
Thank you.

Yeah.

Liz Lewington, LPN (09:56)
Comforted you're speaking to them in their time frame where they feel like they are in their reality and living in their reality instead of always saying, no, that's not what's happening, mom, dad, or loved one, or person that I'm caregiving for. You don't want to always be correcting them. If it's not a safety concern, live in their reality.

Jen Cooper (10:16)
I was going to say that you can live in their reality, live in their moment, allow them to feel validated, right? If you validate their feelings and don't make them feel like they're not making sense, then they're going to be more receptive to taking care of you and getting that help.

Melissa Therrien, RN (10:20)
Yeah.

Liz Lewington, LPN (10:20)
Yeah.

Absolutely, absolutely. Yeah, yep.

Melissa Therrien, RN (10:33)
And I think we can't forget that dementia is disease, right? It's not a personality trait. It's a disease. This is not an intentional behavior. You know, we talk a lot about unmet needs, right? And I'm sure this resonates a lot with Jen and like trying to figure out what the background is behind this. Like I had a client many years ago that suffered a drowning.

and would not getting to the shower, absolutely would not getting to the shower. And it was a fight every day. And then, know, appreciating where that person is coming from and, you know, understanding like this is a legit fear of water. How can we change this crucial task to being something that's maybe a little bit more pleasant? Jen, do you have any examples with that?

Jen Cooper (11:21)
Yeah.

Yes, I had a resident who same idea right she was traumatized from water when she was a kid and every time you put her in the shower she would get very aggressive and strike out punch and so we finally made it more of like a spa we had a tub and we'd allowed her to walk into the tub and we had the TV going and allowed her to fill the water as high as she wanted to fill it and gave her the washcloth and allowed her to do the process right if you were kind of forcing her in there and making her do it it was not fun but if you made it her idea and allowed her to

control the control at all and she took control of everything then she was slowly would allow it didn't work every time and no nothing ever works every time and you can try to redirect multiple times but and in the end she just needed that control not feeling like you are forcing her into something that scared her right

A lot of that a lot of a lot of dementia residents are afraid of water. There's that fear of and it's also getting undressed in front of everybody, right? Give them towels, let them have that that privacy and that feeling like you're not just all standing around while she's in the tub with no clothes on. It's uncomfortable for them. know, males, you know, men don't want you to see them. It's their privacy. It's there, you know. So allowing them. We had a gentleman who used to only bathe in his bathing suit because he did not want to be naked in front of you. So we allowed him to do that.

And then you would give him that moment, you'd kind of step away and allow him that privacy, and then he felt much better. And you can leave them, you could just give him that little bit of privacy. So, jobs work better in the shower sometimes, that water on your head can be intimidating, right? Yeah.

Liz Lewington, LPN (12:57)
Mm-hmm. Yeah.

Melissa Therrien, RN (12:59)
Yeah, for sure. You mentioned a word that I think is really important for us to talk about is redirection. Yeah, so tell us to the non-health care providers what that looks like.

Jen Cooper (13:04)
Yes.

Redirection is not telling somebody they're doing something wrong. We have what you call the shoppers. And I know that we've talked about this before. They wander into rooms. They can go and do things that you're not quite.

you know that they're not appropriate. And instead of trying to tell them that they're wrong, don't do that. Redirect them, show them something that they're interested in, get to know them, you know, here's your album or photo album, or let's go this way and have a look over at your pictures on the wall over here and let me talk to me about them. And that helps to kind of bring them down to that calmer level so that you can then re approach whatever task you needed them to do. Because if you're just constantly pushing and harassing, once again, you're taking away their bit of independence that they might feel they have. And that can cause a lot

of aggression, anger, striking out, behaviors that they wouldn't normally come up with, right? So it's redirect them to a happier spot to kind of get their minds refocused.

Liz Lewington, LPN (14:03)
Mm-hmm. Yeah.

Melissa Therrien, RN (14:04)
Yeah, geez, sorry Liz. I just think just how you presented that, like it becomes harassment and you're forcing them. I do not have dementia, not diagnosed anyways. I'm very forgetful these days, but you know, even me hearing that like makes me think I would absolutely lash out. Like I don't think it requires a diagnosis. think it's so much the approach, whether it's dementia or just care for people. Yeah.

Liz Lewington, LPN (14:17)
I'm

Melissa Therrien, RN (14:34)
Anyways, Liz, sorry about that. jumped in.

Liz Lewington, LPN (14:36)
no, was just going to basically say what you said there. Yeah, it's the idea of, you know what, we can do this care, but we can take our time. And if you're not ready for it, leaving the area and then giving it time so that they can calm down and they may not remember what you're about to do, what's going on, but they remember the way you make them feel.

Melissa Therrien, RN (14:39)
you

Jen Cooper (14:59)
Yeah.

Liz Lewington, LPN (15:01)
Folks with dementia, still like their limbic system, that emotional core is still intact. So they may not remember your face, but they will connect the way that you make them feel when you come into the room. So if you approach them with respect.

Jen Cooper (15:11)
No.

Liz Lewington, LPN (15:15)
and kindness and get to know who they actually are so that you can change the conversation. So knowing who their loved ones are, the name of their loved ones, and then they can say, you can tell them, know, it's three o'clock. They're going to their auntie's place and you tell them the name, you know, it's Melissa and Jen. Don't worry, Melissa and Jen are going to their auntie's place after school so we can go and do these things. So getting to know that the core of the person and then giving them time and respect and letting them be like you

said involved as much as physically possible, as much as it's safe, giving them options like, did you want to wear this shirt or this shirt? Not saying, hey, go pick what you want to wear. That's overwhelming, but giving options that are safe options. You're not going to let them go in and put a bikini on in the winter. You're going to give them the option of two sweaters, right? So letting them have that decision making as much as possible so that they have that pride in the sense of who they are and have that

Jen Cooper (15:56)
Yeah.

Liz Lewington, LPN (16:15)
little bit of themselves back. Yeah and everyone's different, absolutely everyone's different and even their journey changes so you can know somebody one week and then you come in after your vacation and maybe their mobility has altered and maybe they can't do these things for themselves so you now have to approach it differently to support them to be able to help manage their care with their know with their abilities. Yeah.

Jen Cooper (16:41)
to say you can try a new person right I mean sometimes when you have somebody who is very aggressive or does not like you you may trigger something in their mind from the past that you look like somebody that they're not happy with right try somebody else try a different approach to it and so you're just kind of trying anything you can and keeping it there them calm to get that care that they need

Liz Lewington, LPN (16:53)
Yeah. Yeah.

Yeah. Yeah. And like you said, it's... go for it. No, go for it.

Melissa Therrien, RN (17:02)
What about the- sorry, go ahead Liz. Yeah.

Liz Lewington, LPN (17:05)
I was just going say, said the disease. This is not who they are. And I always like to say, you know, this isn't your loved one. This is a disease running the show now. So you can't treat them the way that you were historically. you can't. A lot of folks, before they get the dementia diagnosis, or just after, like in that sort of lull where no one really knows how to approach this, they have an innate requirement to tell their loved one, you're wrong. know, that's not what

Melissa Therrien, RN (17:34)
yeah.

Liz Lewington, LPN (17:35)
them and then all it does is trigger those behaviors, know, because you get defensive. You do when someone's telling you you're wrong all the time or you already said that or don't do that. That's not what you're supposed to do. Like cut that out. That's not the approach that's going to get you somebody that's happy with seeing your face again, you know. Yeah, sorry Melissa, I cut you off.

Melissa Therrien, RN (17:55)
Okay.

No, all good. I think just to your point Liz, how do you talk to families, Jen? Like how do you bring families up to speed with what they're seeing, what they're dealing with and what their loved one is dealing with?

Jen Cooper (18:09)
What I was going to say is a lot of families are almost embarrassed by way their loved one is acting and that's not who mom is, that's not who dad was. I don't know why they're doing that. You just remind them that it's not...

them doing that, it's the disease doing it. And we are okay with it, we understand it, and we can help them through it. Don't be upset by it. I mean, they're gonna change, they're not gonna be the same people. A lot of what I've heard is that people who are very calm and quiet during their lives are the most loud and aggressive and angry ones, right? There's that big change between them. And so you just kind of make sure that you're letting them understand that it's okay and that we've worked through it and that they need to accept mom or dad as this new individual

And don't try to make them feel like they should be as they were before, right? This is the new norm and we just kind of have to learn to deal with each behavior as it comes. We need to learn to deal with them and their repetitiveness. And if it becomes frustrating, walk away, right? Don't feel like you need to come and visit every day. Take that time for yourself to get away and allow us to kind of care for them because we don't really know them from before and now this is who we know. Allow us that time and just don't feel upset by it because I mean, they're still your mom, they're still your...

dad but they're going to be a little bit different so it's it's

Melissa Therrien, RN (19:25)
Yeah, yeah, I definitely think there's that grieving process again, right? And so, yeah, mean, Liz, do have any questions for Jen? I don't want to monopolize Jen and her expertise here.

Jen Cooper (19:27)
Yes.

Liz Lewington, LPN (19:39)
No, mean, Jen's expertise is definitely a different, you have, I mean, an immense skill set. So going in to see a client, if they do have these aggressive behaviors, what's sort of like your first thought on what's causing it? If you go in and they're agitated and the person is aggressive, you can't see any outside overt cause of it. What's your approach? How do you...

Jen Cooper (20:07)
there could be an internal pain. A lot of pain presents itself as aggression. They don't understand how to get those words out saying, you know, my, have a headache today, or I'm feeling tired, or they're just not able to kind of portray that anymore. So I think kind of making sure that there's no underlying pain issues of bowels is a huge one. If they need to use the bathroom, they don't know how to do it, or they don't know how to get there. It's that privacy thing again, right? Take them to the bathroom, allow them that time, and then just kind of redirect with those

Liz Lewington, LPN (20:08)
No, don't.

Jen Cooper (20:37)
things that kind of make them happy, right? As I said, photo albums are huge, very huge. Going through those past memories and looking through the things that they enjoy, read through a book that they used to enjoy, and kind of figure it out that way on how to kind of settle them. Chat with families, right? They will understand a bit more as well about the background. So I think just making sure pain is a huge trigger though, for sure.

Liz Lewington, LPN (20:59)
And then bathroom, know, going to the bathroom. Yeah. And it can be something little like their, you know, their clothing is not fitting right or their brief is on, you know, sideways or crooked. You know, it really is you do have to become a detective when you're a caregiver.

Jen Cooper (21:00)
That was fun.

or even their hair, they don't have their hair the way they want it and they don't feel comfortable, right? They're using their lipstick. Yeah, exactly, their lipstick for the day, right? Those kind of things. A gentleman who likes to be shaved and he's got a stubble that doesn't make him happy, but he's not able to say, can I have a shave, right? So, yeah.

Liz Lewington, LPN (21:17)
Exactly or their lipstick. Yeah. Yeah.

Yeah, yeah. That's why that care planning component, you know, when you're going in as a caregiver and you find something that really hits today, it's, okay, they were agitated. I was able to, I found the shaver and I said, hey, is this what's going on? And there was acknowledgement that they wanted to be shaved and you got him shaved and he was peaceful, you know, and he was calm and he was able to enjoy a meal with you and creating that care plan. So following through.

Jen Cooper (21:49)
Thank

Liz Lewington, LPN (21:59)
and communication. So talking to the family like this is what happened today and I found that if we if we offer to shave every day, you know before breakfast he'll eat and he'll eat well that time. So let's try that and creating that care plan so continuous communication and

As it evolves, we evolve too. So not just setting up one care plan and walking away, always, you know, re-investigating behaviors as they change and knowing that this is not, and everyone's trajectory is so different. You could have dementia. Like Alzheimer's disease is sort of, it's normally a slow progression with some sort of predictable trajectory. But if we're we're Nickies or Corsacoffs or,

Melissa Therrien, RN (22:29)
Uh-huh.

Liz Lewington, LPN (22:42)
like even a combination dementia where there's various causes like a

if there's a heart issue, that kind of thing. If things are exacerbating those issues, the dementia takes this massive dive. So knowing that you may have an infection and they take a massive dive, or if they've gone under anesthetic, you're going to have a massive change. And knowing that you need to continuously revisit what does that care plan look like? How are we caring for this person in the most appropriate way and honoring who they are?

It makes you such a good caregiver and it makes you such a good partner to the family to be able to say, this is the way that they're responding to this today. And I know that this was the way that they were, but now we have to move forward and this is the care that we're giving and it is beneficial to this person.

Melissa Therrien, RN (23:34)
Jen, can you give us some examples of activities that are good to enhance well-being and maintain that cognitive status?

Jen Cooper (23:41)
Yes, through the BSO, the Ontario project that I did, did a Montessori program. So Montessori is very important with dementia residents. We did a lot of towel folding, cleaning. I give them a broom. They like to do the things that they used to do, washing the dishes.

folding clothes and putting them away. There was also, we did a lot of lifestyle stations and so that kind of gave them that ability to kind of live as they used to. We had like a makeup table where you could sit and do makeup, a baby station. know, some really enjoyed taking care of those babies and being that mothering role. So because that's kind of what that mentality that they're in, right? And so I think meaningful activities is huge. Don't just give them like silly little tasks to do. Allow them to feel like they're accomplishing something and it makes them feel better that they've done something.

for that day because you imagine not knowing where you are just wandering all day long and not feeling like you have anything to do with society anymore so it kind of gives them those meaningful things that they're helping and assisting you know setting the tables like there's a lot of things that we used to do with our residents and homes that would make them feel it was kind of their jobs of the day and it and it became like a happy moment of their day.

Melissa Therrien, RN (24:49)
Yeah, yeah, those purposeful activities for sure, where there is some fulfillment. And I think we often will overestimate potentially or underestimate as well, right, of their capabilities. And that's frustrating. You know, where they go and there's wheelchair bowling and they're like, well, I walked in here and I'm totally fine. Like this is tedious and I don't want to do this.

Liz Lewington, LPN (24:49)
Yeah.

Jen Cooper (25:04)
Yeah.

Melissa Therrien, RN (25:17)
On the other hand, you know, it may be someone who is nonverbal and colouring is an activity that is something I enjoy doing. Yeah.

Jen Cooper (25:23)
They're a big one. Yeah. It doesn't make them feel childish, right? I mean, they need to still feel like, yeah, get a lot of residents that would say, I don't color, that's a child's job, you know? But then some that just absolutely loved it because it was that little getaway and it just kind of made them feel happy. yeah, each resident's gonna be different.

Melissa Therrien, RN (25:28)
Yeah.

Liz Lewington, LPN (25:38)
Yeah, music. What about music, Jen? Have you ever had experience with music?

Jen Cooper (25:41)
Music therapy is really good. Bringing up those songs that they can remember and they can sing to. And we've had residents who are completely nonverbal and you put on music and you can see them just bopping their head and they know that, right? And it's bringing back those happy memories.

Liz Lewington, LPN (25:58)
Yeah, I know don't you just love that that moment when you put the music on and you can see I mean as as a relatively cognitively intact human You you know that feeling of a song from when you were younger, know, it hits different I know I'm old so the grocery store is like where I get my jams nowadays apparently 7 p.m. Grocery store is just

Jen Cooper (26:10)
for years to come. Thank you.

It's the oldies nowadays, right?

Liz Lewington, LPN (26:24)
So knowing that you put that music on and it's connecting again to that part of that person that is still absolutely intact and seeing somebody tapping their hand on the table or tapping their foot, as a nurse or a caregiver, you look around the room and you can see the smile on everyone else's face just by seeing someone who's nonverbal or seen as someone who can't participate in life and they're there and they're experiencing that music. feels so good.

Jen Cooper (26:27)
Mm-hmm.

You'll see them enjoying it, yeah.

Liz Lewington, LPN (26:53)
Yeah, I just love it. Yeah.

Melissa Therrien, RN (26:56)
I think Jen, from my perspective, being under your care and that empathy that you show is very heartwarming, but we know that it's not that case everywhere, right? The dreaded parked in front of a TV and left to just sit there. So as a family member, how do you support your loved one, either in home or in a home, wherever that may be?

Jen Cooper (27:08)
Mm-hmm.

Yeah.

Melissa Therrien, RN (27:26)
Like, how would home care or companionship come into play? How do you introduce that, let's say?

Jen Cooper (27:32)
I think it's just giving that that resident or that that client the ability to even if you don't think that they're listening or they can't communicate and have a conversation with you still have those conversations and you know go for tea or coffee even if they're sitting there it's a it's a different atmosphere right if they're constantly parked in front of the television they're not really paying attention to it they're feeling lonely they're feeling abandoned there you know just sitting and having reading a book to them it can be anything it can be simple things it's that companionship that they require I mean

not all caregivers feel that way. They feel like they can't understand, but they're still in there and they're still hearing you and they're still understanding that there's somebody with them. think don't let them feel left alone, right? And families do have a hard time not understanding their mother is like that anymore. But I think it's just having those conversations and talking about the past or telling them that you love them. It's just, it goes a long way, right? Yeah.

Liz Lewington, LPN (28:25)
Yeah, yeah. Yeah, just talking to them. I had a client who, when she saw her daughter...

in the flesh, she had no idea who she was because in her mind, her daughter was still 12 years old or just a kid. And then being able to get her daughter on the phone, was actually the best visits were on the phone because she recognized that voice. She knew who she was. And so when her daughter would come to visit, we came up with this plan to have her talk to her mom from behind. So she would come in and we would say, there's someone here to visit you. And I would sit in

front of her and and then I would say who do think it is let's not I'm not just look at me I'm gonna it's a game so her daughter would start to tell stories about her growing up and in that time that her mom was experiencing with her

you know, when she was little. Do you remember when we went to the river and we used to swing off of that tree and then I swung out and I hit my head on a rock and you thought I was dead and her mom was like, I was so scared. And so they were telling these stories and it was a beautiful sort of remembrance of the childhood. And then the daughter put her hand on her shoulder and that was the moment that her mom reached up and there were tears and I was, mean, I'm totally professional and I wasn't crying either, but.

Melissa Therrien, RN (29:49)
You

Liz Lewington, LPN (29:50)
But you know that that connection that they had in that moment and that fleeting moment that they had was then changed and she turned around and saw this woman she didn't recognize and she walked away. So it went from and the daughter was just so heartbroken but it was

It's that moment that we all live for, moments, the little moments in between where dementia is washed away and we can, we can see who that person is. And those are those beautiful moments of being a caregiver and being a family member. And yes, it's, it's all grieving, you know, that's grieving the loss of this person day in and day out and being able to, to see who they are in those little moments of sunshine in between is, it's just immeasurable. But

It's not an easy road, you know, we can paint a picture of it being these beautiful moments connected, education is so important for the family members so that they know what to expect and how to approach their loved one that they've known their whole lives. Yeah, it's, yeah.

Melissa Therrien, RN (30:56)
And support, like seek support, right? Like find a group that you can chat with, find just someone else that you can just go through and share good and bad, right? It's so important that we reach out to, you know, other people to support us through this.

Liz Lewington, LPN (31:11)
Mm-hmm.

Yeah, the Alzheimer's, know, Alzheimer's groups are absolutely wonderful. They meet online. There's often in-person as well, but there are other caregiver groups out there depending on what type of dementia your loved one has or just an overarching caregiver support group. Like you said, you're not alone. It can very much feel like that. Jen, like you had said, when someone is having these behaviors, you know, their spouse, their kids, they're embarrassed, so they don't go out. And it's so

Jen Cooper (31:42)
They are, yeah.

Liz Lewington, LPN (31:47)
because you feel so alone. Yeah, being able to reach out, that education, get the support from other human beings that are going through it. And those, you know...

turning to your caregiver like Jen and saying, hey, this is what's going on. And I don't know how to get them to realize that the bathroom is here. You know, we used to have a dementia unit that had a tree painted on the door, you know, the doors. So they wanted to be a circle, but the doors that came and went, they had murals and every farmer we had come through the place or anyone who worked out in the woods would use that tree as a toilet. And so it was perpetually being cleaned.

Jen Cooper (32:24)
Sure, yes.

Liz Lewington, LPN (32:29)
underneath it. So how do we get them to recognize that the toilet is over here and your loved one is saying well they keep going in a wastebasket or they get angry until it's too late and then we have an issue with with toileting. But how do we do that? And having those conversations that can be very embarrassing to have with a non-professional so turning to Jen or somebody like Jen and saying hey what do do here? How do we troubleshoot these things? Because it isn't something you taught. It's not something that you go through.

education in high school to care for a loved one. You're always just dropped in it. reaching out like you said and connecting with groups and connecting with other people and getting that education is really important.

Jen Cooper (33:11)
We used to have a support group for the families where we would meet once a month and The families could connect so they were able to talk and have that connection as well. You don't always want to reach out. You feel like you don't have the time to reach out to a group, but this kind of gave the families a chance to connect and the families were friends with each other in the facility that I worked in and it allowed them to have that companionship as well.

Liz Lewington, LPN (33:16)
Yeah.

Melissa Therrien, RN (33:16)
Yeah.

Liz Lewington, LPN (33:34)
Yeah, community really is key. It doesn't take a village to raise each other up and creating that safety net, whether it's physical, having hands-on care in the home, like in-home supports, you need to create that safety net in order to keep yourself healthy. Some of the research that I was looking at was 40 % of folks that are the primary caregiver for a loved one with dementia pass away before the person that they're caring for.

Jen Cooper (33:48)
You

Liz Lewington, LPN (34:03)
just because they don't have support, they don't have time, they can't look after themselves. They're worried about keeping their loved one hydrated, but they don't care about keeping themselves hydrated. And then you're left with someone with advancing or advanced dementia living without a support person, and no one wants to see their loved one go into the hospital after they've passed away and have whatever care they can get their hands on.

Melissa Therrien, RN (34:08)
Yeah.

Liz Lewington, LPN (34:31)
It's a bleak situation to not have that advanced planning in place. So knowing knowing you need it too You're just as important, you know your nutrition hydration activity Socializing is just as important as your loved one with dementia and supporting yourself before it's too late That burnout is real and you can feel it. You can feel it in the room. Yeah

Melissa Therrien, RN (34:50)
Yep, for sure.

Jen, is there anything else that you'd like to share with us and share with our listeners regarding, you know, this really sensitive topic, but very pertinent right now in this day and age before we thank you and say goodbye?

Jen Cooper (35:08)
I was just going say based off what Liz was saying, ask for help. If you're caring for a loved one, don't feel like it's all on you. I know a lot of spouses feel like it's their responsibility to care for them because they've lived together. ask for help. As you said, burnout is real. Take that time for yourself. And when you start getting the care and the help, go off and do those things that you still enjoy. Your life is not over just because your spouse or your loved one has that disease, that horrible disease, that you can still enjoy your life and do the things for you because you need to do that.

Kind to yourself.

Liz Lewington, LPN (35:39)
Absolutely, yeah. Be kind to yourself. I like that. That's actually a beautiful way to end the conversation. Be kind to yourself. Yeah.

Jen Cooper (35:45)
Yeah.

Melissa Therrien, RN (35:51)
All right, Liz, I have a couple extra things I'd love to chat with you about, but let's thank Jen for coming by and joining us today. then hopefully we can have you back again very soon, Jen.

Jen Cooper (36:02)
Thanks so much for having me. Bye.

Liz Lewington, LPN (36:04)
Yeah. Thanks Jen.

Melissa Therrien, RN (36:06)
Take care.

So Liz, that was great. That was great conversation. Love hearing Jen, you know, her empathy, her compassion is so palpable. I think, you know, that's really great. So let's roll back and let's talk about dementia care in the home. You know, that's kind of our specialty. You know, I think everyone feels like it's a last minute or a last resort to put someone in a home. So what does...

dementia care look like in the home?

Liz Lewington, LPN (36:40)
in the home.

Well, dementia care, like we said, it's different for everybody depending on where they are on that trajectory, that journey. It's a matter of, again, just like Jen had said, actually, we're going to touch a lot on exactly what Jen had said because she's got a lot of amazing experience. So being able to support somebody in the home is about finding out what's causing behaviors to escalate, supporting the loved one, the caregiver, the primary caregiver, giving them

respite, even though they don't see the need for it. You'll often get a phone call from a child saying, Mom really needs help. She's looking after dad. She's burnt out. She's not sleeping at night. The second someone starts waking up through the night, that's when things turn. Or when...

like constipation, bowel issues, bladder issues. There's sort of two major ones. Are you sleeping at night and are you still able to use the toilet? Those are the ones that I get a lot of phone calls from families saying this is too much for me now. I can't.

or their loved one comes forward. So being able to be that support network for them and that care in the home with dementia is, it's all safety oriented. You know, we start with where can we keep this person safe? What are the holes in the safety plan? So when I go in, it's sort of like putting out a fire. You you start with the hottest places. are they safe? Is it an elopement risk? Are they going to wander?

Melissa Therrien, RN (37:57)
Grrr.

Liz Lewington, LPN (38:11)
Are they safe making food for themselves? Yeah, like, are they able to do their own personal care? Are we guiding them?

Melissa Therrien, RN (38:15)
you

Liz Lewington, LPN (38:23)
It looks so different that dementia care in the home looks so different because we're all different, but really at the end of the day, the under underwriting of everything is that empathy and, using, using your resources that you have available. So talking to the family, creating that care plan, looking after the person as the, as the person that they are. I love having those in-depth conversations with families about who are they? What did they love to do? So if they, I have a client that loves to

take dogs for walks. He can't walk anymore. So what we do, he had a dog his whole life, but he doesn't have one now. So what we do is we go and we get a burger and we go and we sit down at the ocean and we watch all the dogs parade past. So that's how he gets his dog fixed, which I totally understand. But it's different. It's different for everybody. And just knowing that we're there to support the family member in whatever it looks like for them. So didn't really

Melissa Therrien, RN (39:09)
Ha ha ha.

Liz Lewington, LPN (39:23)
answer your question, Melissa, but there it is.

Melissa Therrien, RN (39:27)
Yeah, think there's the, I think people think that with a diagnosis of dementia, it automatically means they can't stay home anymore or that support is needed. Though I don't disagree that support is needed in one way or another, I don't think a diagnosis of dementia is a reason to start or even.

Liz Lewington, LPN (39:39)
Hmm.

Melissa Therrien, RN (39:54)
put someone in a home. Start looking? Sure, absolutely, because we fully believe in being prepared for anything. But I don't think it means that they can't be home, even if that means they're home alone. You know, we've had clients that, you know, their spouse has passed away and they want to remain in their home. That's mom and dad's wish. How do we support them through that? You know, and it's

It's preparation, it's modifying the house. All these things that we talk about in any disease process really is not entirely unique to dementia. think it's, like you said, keeping it safe, keeping it comfortable, and getting support for the loved ones that are supporting them. And that's really important.

Liz Lewington, LPN (40:37)
Mm-hmm. Yeah.

Melissa Therrien, RN (40:42)
I did want to mention too, you know, what's something that I share with my caregivers and the team that supports me in the community is cue versus do, right? I think so often because, you know, there's that mentality of being rushed or that we need a task to be completed. You know, I share with them, let's cue versus actually do the task. Let's see what they're able to do.

I know we talked about socks and what an accomplishment it was to put socks on, but it's any number of things, right? It's, I would like you to help me with putting sugar into your coffee, something so simple, but allowing them the ability to do that themselves. In dementia care, I think we really take that same principle.

Liz Lewington, LPN (41:31)
Mm-hmm, mm-hmm. That cue not do and like you said, little tasks. creating a care plan often will look completely bizarre. So it will be go into the laundry cupboard.

pull out all of the face cloths and the pillowcases, you know, the smaller items, the fold, mess them all up and put them down in front of the client and say, you know what, we've got so much laundry today. And so while you're doing the actual, you know, putting away the laundry, stripping the beds, doing the heavier work as the caregiver.

Melissa Therrien, RN (41:49)
Yeah.

Liz Lewington, LPN (42:03)
your loved one is there doing the work that is also needed to be done now. Maybe you're undoing things, but you're actually giving that person a moment of joy and that sense of pride and that those feelings, feelings are still very, they live inside of us until the day we're gone. So feelings, feelings, not feeding memories, but feeding those feelings. They're going to remember how your face looks and the feeling that comes with it. And like Jen said, you may look like some

they hated and it's just not there for you. I apparently look like everyone's aunt so usually aunts are pretty chill people so I'm lucky there but I got aunt face so that's good. I've only had one person hated me on site so clearly terrible, terrible aunt.

Yeah, but knowing that you're not going to be that perfect person for everybody all the time and giving them giving it's all it's always about giving back a little bit of that person as much as you can that day. So it may just be putting music on and having them tap their foot. And that's what meaningful participation is for them that day. Different. You got to roll with it. You got to be able to roll. Yeah. Yeah.

Melissa Therrien, RN (43:16)
Yeah, I think that's a valid point rolling with it because I think any change in an environment for someone who's suffering from dementia can have an impact. I think not really an energy person, but I think there's an energy that can be felt by someone who is suffering from dementia. Their senses almost change to be more heightened in certain ways.

with the loss of the senses in other ways. We often talk about a full moon and check the moons, that might be what happened. But I think there's so much validity to that. Any change in their environment, maybe it's even a loved one moving into their house with full good intentions, but that energy shift in the house, it's not.

Liz Lewington, LPN (43:52)
yes.

Mm-hmm.

Melissa Therrien, RN (44:12)
not their house, it's not their routine, it's not the way that they would like it or have grown accustomed to and that shift changes. And so often too, I mean, we see people go into hospital and a diagnosis of dementia in hospital is like the worst case scenario, right? It's overstimulation, it's a schedule that's nowhere near what their schedule at home is like.

Liz Lewington, LPN (44:21)
Mm.

Melissa Therrien, RN (44:38)
It's strangers all over the place and it's a change in the people that care for them. Like, my goodness, that's just a recipe for disaster. And I think that's a great time to bring in a companion.

Liz Lewington, LPN (44:52)
that I was saying is having somebody on the bedside because they can keep that person calm and oriented to what's going on and then read to them, put the music on, make sure that a lot of folks, can even be on restraints, that sort of thing. So making sure that they're not, I know, either chemical or physical restraints definitely are part of that dementia in hospital, which is absolutely heartbreaking because it's really not necessity.

Melissa Therrien, RN (44:59)
Yeah.

Liz Lewington, LPN (45:22)
my gosh, mean could complain. That's my jam. But knowing that we have a caregiver at the bedside that is in tuned with dementia and what to look for and what it's, you know, right now they're feeling agitated. They haven't gone to the bathroom in X, Y, They're hungry. They haven't been able to eat well because the tray is in front of them, but they don't know how to take the lid off or they don't, you know, the cup is different from the cup that they've had before and it doesn't trigger their

Melissa Therrien, RN (45:26)
Ha ha.

Liz Lewington, LPN (45:52)
to realize that, well, if I take the lid off, there's a drink in there. And knowing that if there's a one-on-one caregiver, and I mean, you can request it from the hospital, but staffing, I know, is really difficult all the time. It doesn't matter the department or the area of Canada, unfortunately, but staffing is really difficult. So that one-on-one care is often really, really beneficial for people that are in the hospital with dementia. I definitely recommend seeking somebody from outside of the hospital to

to provide that one-on-one care, even for blocks of time. Shift changes, shift changes and up-floor, so new faces, people are checking on you all the time, waking you up during the night, so having someone one-to-one that can sort of be there specifically for that person's needs is a really important sort key role in dementia in hospital acute care.

Melissa Therrien, RN (46:27)
Yeah.

Yeah, for sure. And giving families a break. I mean, everyone wants to be there, but everyone has a life outside of caring for their loved one and giving those families that respite and that time away from what is very overstimulating to everybody and frustrating. And, you know, I think that's where a companion in hospital, in home, whatever that may be, I think is so beneficial. And many of our companions actually, you know, in conversations with families,

think we talk about, well, I know I talk about it, is how do I keep a companion that's a companion today, but tomorrow may take on some care pieces? You know, I think that also is a really important piece of the discussion so that maybe we don't have to change up the caregiver that's coming into the home. You know, maybe we start with a companion that has the healthcare capabilities and then knowing that personal care may become part of it.

we're able to anticipate that and make sure that we're staffing accordingly. You know, I think gaining those nuances and having the ability for us to be able to predict what that's going to look like and prepare for those transitions.

Liz Lewington, LPN (48:00)
Yeah, absolutely, absolutely. It's all about continuity, you know, knowing. Yeah. And that's why that care planning is so important. I know I bang on about it. And it's our nurse's bread and butter. But care planning is so important because picking up on the little nuances out there of what they need, when and where, and we can reduce what we call responsive behaviors, which is that aggression or agitation, wandering. You know, when someone's wandering, they're looking for something. They're feeling lost. So being able to talk to

them and even just give them a broom. I know it sounds ridiculous, but if they have a broom, they're doing a thing. Their brain is occupied with something that they feel is important. So yeah, care planning and just being a part of that client's journey and the family's journey and keeping communication and continuity and all of that in place is really important. That's the beauty of...

Melissa Therrien, RN (48:52)
Yeah, consistent staffing.

Liz Lewington, LPN (48:55)
Yeah, yeah, that's the beauty of having a private company. Unfortunately, the government sector cannot provide. It's just not something that's anywhere near a capability of such a large number of people. But hiring privately, you can have that increased continuity so that you know that your caregiver is there and you can leave and you can go for a swim or a coffee or you can just, you know what, you can go for a walk in the woods and you can cry. You can be with your friends.

whatever it is that your body needs that day and know that there's somebody there that is capable and kind and empathetic and they know how to navigate this. So I think that's the important part of having that in home care at E-Skip Chibs. Yeah.

Melissa Therrien, RN (49:40)
Mm-hmm. Yeah, I agree. Liz, anything else you'd like to share today on this really odd, I mean, I know we can talk for days about it. Yeah. Yeah.

Liz Lewington, LPN (49:50)
You can go on and on, no problem. I know the two of us, it could just be like a game of ping pong, back and forth. Like, I had a card and then had this happen. How did you handle it? we did this. Yeah, for sure we can go back and forth forever. And if people want to watch outtakes, I'm sure there's going to be several of them of us yakking. So if this made the cut, then that's great. But no, I mean.

Melissa Therrien, RN (50:03)
Yeah.

Hahaha!

Liz Lewington, LPN (50:14)
I can bang on and it is what I love to do. I love to help families navigate this dementia journey because it can have beautiful moments. yeah, but you know, if I can reiterate anything, it's reach out. You're not alone. You're never alone. And I know it can feel that way. know you're not able to go out and do what you used to do with your loved one. It's just not feasible, but.

you're not alone, you're not alone and education is key so reach out, create a new network and know that there's support there so don't let yourself drown.

Melissa Therrien, RN (50:55)
Yeah, I agree. You can't look after someone else unless you're looking after yourself. beautiful. Liz, it's been a pleasure chatting with you again. And my goodness, we are a week away from Christmas, which means we will not have a podcast next week. We're going to take a couple of weeks break before we start working on episode five. So

Liz Lewington, LPN (51:01)
Yeah.

Yeah, Merry Christmas to you.

Melissa Therrien, RN (51:25)
Looking forward to seeing you all then. Thank you for listening, Liz. Thank you for sharing. If you have any questions, please don't hesitate to reach out. We'd love to chat with you. Let us be part of that team supporting you. Yeah, and that's about it for today, Liz.

Liz Lewington, LPN (51:43)
Yeah, thank you so much, Melissa. It's been an absolute pleasure, as always. I love you to bits. Thanks for everything. And again, you need us. Goodbye, everybody.

Melissa Therrien, RN (51:48)
Oof.

All right, take care. Yes, take care.