Everyday Care for Dementia

Every day can't work the next time.

Yeah.

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Hello and welcome to the Vlogging pod.

We're very glad to have dementia educator and advocate Kathy Miracle back with us.

We continue our series on conversations focused on helping families better understand and navigate the dementia journey.

Kathy for listeners who may be joining for the very first time.

What would you or would you mind I should say take a moment to introduce yourself and tell us a little bit about your work and your passion for educating families about dementia care.

Well, thank you for having me.

I always love being on this show.

I am passionate about the dementia journey.

I spent the better part of my career 30 plus years working in senior living and specializing working with people with cognitive decline in their families and helping professionals better understand this journey along with families so that people with dementia just get more quality care.

And so I'm excited.

I founded so versinami a couple of years ago so that people had solid resources and it's not that they there's not great resources out there.

There are the Alzheimer's Association, the Alzheimer's Foundation.

The challenge becomes is the information so general people don't know how to take it and then apply it to their own personal situation.

So that's why we exist is to be able to just help families navigate the dementia journey just a lot easier with great information that they can take and apply to their own situation.

Wonderful.

Now, throughout our series, we've talked about planning ahead improving communication supporting caregivers, creating a safe home, understanding behaviors.

So today, I wouldn't mind taking a moment and focus on the every day side of dementia care, you know, the daily routines, personal care that can sometimes become that challenging for both the individual living with dementia and those caring for them.

Yes, I cannot emphasize strong enough about having a consistent daily routine.

A lot of times when I'm helping families and they're frustrated over something that's going on, it comes down to maybe that a routine got out of whack, you know, or just got leaked.

And when I train professionals, I will train and I always ask people, I go, okay, well, let me ask you this, do the socks go on before the pants or do the pants go on before the socks and people will answer, you know, do you put the toilet paper that it goes over or does it go under because we get very used to our routines and when our routines are interrupted or changed, we get very frustrated.

Even people without dementia get very frustrated because they're routine and I've had people debate this with me all the time.

I had a staff person who was going to prove me wrong. She was absolutely going to prove me wrong on this.

I said, okay, we'll prove me wrong. That's fine. I don't have an ego.

And so we went through and talked about her routine, her morning routine and she wrote it out for me.

And so I went through and changed three things like she had to brush her teeth before she got in the shower or she had to put on her pants before her socks or she had to take, you know, the trash out before she ate a bread.

It was just really simple stuff. And it was an employee who was never late, ever late for work. She was, if her chef started at 6 a.m., she was at work and on the floor at 558, 559.

6 a.m. She was just, she was a great employee. And one day, you know, it was like 630 before she walked in the door and she was livid and frustrated.

It happened to be that morning and she goes, this is your fault. I go, oh, it's my fault. Okay, why is it so bad?

And she said she, that was the morning she changed staff and she got halfway to work and felt so discombobulated that she went home and just did everything all over again and did her routine so that she didn't feel so out of sorts.

And I just, it truly, if people think, oh, routine's not important and people can swing, you know, by the seat of their pants, I'm like, let's look at your routine and let's just change a couple of things and see how you feel.

And I'm like, seriously, if you brush your teeth before you get in the shower, do it the opposite. If you put your makeup on before your clothes, put your clothes on before you make up.

And all I do is start changing one little thing and somebody's routine and their day fills off or this is the right. And I'm like, okay, so if you are cognitively capable of understanding what changed and you feel off, what do you think this does for the person with dementia, who needs that routine, who relies on that routine.

And they don't know what's off. And so they get, they get angry, they get agitated, they start throwing things, they start yelling things, I mean, just about anything can happen and does when we start changing routines.

And so the more that someone can have a consistent daily routine, there's a lot of benefits that come with that, you know, we can help somebody maintain independence and their abilities of taking care of themselves.

A predictability actually reduces anxiety. And if somebody is able to still do things on their own, like they, you lay out their clothes and they can still get dressed on their own, then it reduces caregiver stress or the caregiver needing to step in and help them.

And so a consistent daily routine is important. I tell people, get out of, get out of pen and paper, that there are a lot of things you can get, like saying, okay, here's the morning routine, here's the mid day routine, here's the evening routine.

And that person can go and even check it off, because what a person reads and the brain understands is completely different than what they hear and understand. It's two different parts of the brain.

And so if they are looking at something and can read it and check it off and know, yes, I did this and they can go back and refer to it, it helps keep that person actually more independent than if a caregiver is trying to do everything for that person.

So when we look at the routines and what like we said, being out of whack for things happening, what would you say would be the biggest day to day challenges that that would affect.

It can affect just about anything because routines actually are associated with procedural and long term memory. And so we'll rely on that as an anchor.

I mean, even somebody waking up the wrong way, like they can even get startled. So what I used to tell people is, I mean, I had a staff person who wanted me to help her because she was tired of getting things thrown at her and hit.

And I was like, why is that happening? Like what in the head? And the very first time I was following her, she would walk is about springtime is April. So the sun was coming up early.

She'd walk in and open cartons or throwback hovers and I'm like, oh my goodness, if you woke me up that way, I'd hit you.

So please don't do that. And so one of the best ways you can wake somebody, you know, have a set wake up time, have a set, go to bed time.

It's if you let them sleep in and if you in there one morning, they're up at six in the next morning, they're up at nine and the next morning, they're up at 10 and the next morning, they're up at five.

I mean, their whole circadian inner system is all out of whack. And so having a strong wake up time and a strong go to bed time helps keep them in a pattern.

If you are waking somebody up with dementia, if you don't wake them up, you know, in a gentle way, you're going to startle them.

And the best example I give to people is if you're driving down the highway and let's say you have an important person in the car, a child, let's say it's a two year old child, and somebody cuts you off.

You may be angry about it hours later or two days later, you may be angry, but from being startled, you know, like, oh my gosh, I just almost got an accident.

Most of us can go back down to baseline in about 15 to 30 minutes, you know, we're down to baseline. We're not startled, but we're breathing our blood pressures down.

But for somebody with dementia, if they're startled and that usually happens when they're waking up in the morning, being startled, they won't go back down to baseline for anywhere to eight to 16 hours.

So now they're going to be agitated all day long. And so the consistent routine that I have people in the morning, the morning time is really one of the most important times for a consistent routine is that if you take a warm to hot washcloth and give it to the person while they're still in bed and have them wash their face,

as you're kind of rubbing their legs or their arms to get the blood flow moving, when they take it away from their face, they'll get hit with cool air.

And that cool air will softly wake them up. I've had people we play their favorite music, you know, it starts off really soft and we'll get gently get louder, you know, it's like almost like a snooze button, but we put on their favorite playlist, whether that was Frank Sinatra, Elvis Presley, you know, whatever it was, you know, we sort of kind of have this playlist and they're waking up to something that they enjoyed.

And that was important to them. And that's always a softer wake up than walking in the room and making noise or you're, hey, it's time to get up or you shake him a little bit or pull back the covers.

That's a very startling way to wake up and it will actually cause problems for the rest of it.

No, when you're talking about the bed, bedtime and you're waking up. So that's an easier move in from my next question.

So let's rephrase it a little bit where we're talking about the bed, where we're considering mobility and transferring from a bed to chair.

Can that become safety concerns for most caregivers?

It can, depending on, you know, when people start losing the strength to transfer, then it actually can be a safety concern for the person who's dementia and for the caregiver.

I mean, you can get back injuries. The person, you know, in the middle of a transfer may become dead weight and you're not prepared for that and both of you fall.

And so we always want, you know, the more we can keep people strong to transfer themselves, the better that's keeping the core strong, that's keeping the legs strong.

There's a lot of assistive devices out there that can be very helpful.

There are bedcans that can help somebody, you know, study themselves before getting up out of the bed.

You got to make sure that they're put in correctly because they can become very loose very quickly and then it becomes another safety concern.

There's a lot of different medical equipment out there to help people in transferring.

But, you know, when you're waking somebody up first thing in the morning, I don't have somebody wake up, get out of the bed and start walking.

I mean, you know, people's blood pressure, you know, that's out there are higher fall risk. You're first waking them up.

So I always want people to let's wake up gently, let's sit on the side of the bed.

I'll sit there and say the alphabet slowly or in my head sing twinkle twinkle little star.

And it gives them just a couple of minutes before like, okay, are we ready to get up? Let's get up.

And then we want to stop for, you know, about a few seconds, 30 seconds maybe.

Okay, now are we ready to start walking, you know.

So, feels as a caregiver like, gosh, I'm just wasting all of this time.

Well, what's going to happen if you get up and they fall? And now how much time now you've got an injury, now you've got possibly an, you know, broken bone.

I mean, how much more time are you going to spend by doing it the wrong way versus just stopping and taking those extra few seconds to do the right way?

I, I over and over and over. I can tell staff like, I know it feels like it's taking more time, but I'm going to tell you it will take you less time doing it this way.

Then doing it the other way, because if you rush somebody and now you're dealing with somebody being agitated or you're somebody who's now getting defensive or there's

Mackie not you or spinning at you. Now how are you going to handle this? Now how much time is going to take you to get them to do what you need them to do versus just

stopping and giving those few minutes up front, giving them time to wake up, giving them time to sit up and bad, giving them time before they start walking.

Now you're usually on the first try getting what you want to do versus your fighting, fighting, fighting, fighting, fighting.

Right. So when we're talking about caregivers, many caregivers worry whether they're actually helping or helping too much or not enough.

How can families encourage independence while still providing the support the loved one needs?

Well, I when I the families that I work with and that I coach, I actually encourage them to have a care plan at home, much like you would see when someone goes into

assisted living or memory care, you know, most states require those communities to have a care plan that goes through the activities of daily living, like bathing and dressing and eating and transferring and all

of those things that are important in a daily routine. And I always tell people right out first, like George can still, you know, dress himself.

However, he may need assistance with fine motor skills like buttoning buttons or snapping steps.

You're bathing somebody. Betty can still, you know, follow directions and wash her upper legs, arms and torso, but we'll need help with harder to reach places like lower legs, feet and back.

So we always want to focus on what the person can still do and let them do it. And then you look at, okay, what do they really do need assistance with?

You know, Ben can still feed himself, but we'll need help with cutting up food. You know, so we always want to focus. And when you have a care plan and you kind of have that in writing and you're looking at it, especially when someone from the outside is going to come in and help you care for that person, they have a very good

good road map directions on how to care for this person so that we maintain independence as long as possible. And we can maintain independence longer, then they don't become as high of a fall risk or safety risk.

You know, if George can still get up and take his dish to the sink, let him don't remove it because physically he's just becoming sedentary.

And I, in orientation, I used to tell my staff like, okay, first day on the job, how many of you take this job to help somebody do the cemetery faster?

And every sort of looks down and glass a little bit and I go, oh, good, nobody. Okay, well, if you're doing something for somebody that they can still do for themselves, what you're really doing is helping them decline faster. And if they're declining faster, you're helping them to the cemetery faster.

So we want to focus on how do we keep this person as independent as possible and only truly assist them with what they really need to be as well.

Well, independence, it makes them happier. I think people if they become more dependent, get more agitated, I would think.

Yeah, well, I think when when you're doing something for somebody and they can do it for themselves, they may perceive it as my independence is being taken away from.

Yeah, I see that. Yeah. Right. And it's actually one way I used to get my daughter out of bed at five years old, so I'd say, 30 seconds or I cheat will close for the day. Oh, no, she wasn't.

Yeah.

So this kind of thing that we want to be careful that we're not overwhelming a person, like if I'm helping George get ready for the day, I can say, do you want to wear the blue shirt or the green shirt?

You know, I can give two choices. They're still making a choice, but I'm simplifying their world. Now if I know it's cold outside and George wants to always wear his favorite shirt, I can always say, well, do you want to wear the blue shirt or do you want to wear the green sweater?

And it's the last thing I say and it's the one I hold closest to him, which makes it sometimes an easier choice for I can influence the decision, but I'm still, you know, giving him a choice. And he still feel like making a choice.

So it's a delicate little balance, but it doesn't always work again. Nothing's 100% when you're caring for somebody with dementia.

So, but you can still give them simple choices that they feel like, okay, I'm still independent. I'm still having control over my world, but you narrow those choices. You don't open a closet or you don't open a menu.

You know, you're narrowing those choices and making sure that you can influence it if you need to.

Well, I think what you're saying to you correct me if I'm wrong, it's given it's preserving their dignity.

Yes. Being able to have those small choices, you don't think about it.

Why you're trying to get things motivated because especially as a caregiver, you've got your caregiver and you're not just for the person you have at home that you love one.

You probably have to, you probably have a job or house chores or whatever our kids.

So those small choices might be overlooked.

So to provide dignity still there, are there other small techniques that will help people, the caregiver still give dignity for those that are caring for in other ways?

Well, I think so because every person's a little different and this is why having a care planet home is helpful.

It's very, it's very helpful because like if I know that George can still dress himself, maybe I'm like, okay, let's, let's make the choices here.

I'm going to put it on the bed. I'm going to let you get yourself dressed.

You want to make sure George is not going to get dressed back in dirty clothes, right? So we want to remove.

So we have to sort of protect our environment, but still give them the dignity like, okay, I don't need to be here while you get dressed or in dress because I know you can still do it yourself safely.

Everything's laid out on the bed and you know, maybe you lay it out in the order they need to put it on.

Like, you know, you lay out the undergarment, you know, the undergarment first and then the socks and then the pants and then the shirt and then the belt.

You know, if it's all scattered on the bed, George can get kind of confused and not really sure what he's putting on wear and then maybe he's putting on his pants before he's putting on his undergarments and he walks out and you're like, oh, no.

And you got, you're supposed to go to a doctor's appointment. Well, good luck getting him out of that or getting him changed and getting off the door now.

So you still want to set the person up for success at the same time, you're preserving dignity. And so when I help families write these care plans, all of a sudden it's like step one step two step three.

And they're like, oh, my gosh, this makes so much sense. And especially if I have to, you know, I'm taking a day and someone else is coming in, the person's like, oh, I'm not going to disturb their routine because I know the routine they do and I'm going to honor that and follow that.

And I'm not going to agitate this person because I messed up the routine because I'm I'm dressing this person. Most people, they don't realize this, but they dress other people the way they dress themselves.

And this was my realization was when my daughter was a baby. Her dad worked from home. So he would wait till she woke up and then he'd get her dressed and take her to daycare. I'd pick her up on one weekend. I was getting her dress.

And it just so happened I put my socks on and then my pants he puts his pants on the last. And that's the way he dressed her. And that's what she got used to. And so she at two years old was like, you're doing this wrong. I'm like, I'm going to do it.

But I realized that, you know, he dressed her the way he dressed himself because that's what was normal. So as a caregiver, we need to really look at how what was this person's routine is if I started doing it for them like I did it for me.

In chances are that's not the right way. All you're doing is increasing agitation very quickly and you don't even know that you've done it. Right.

So now, Kathy, before we say goodbye for tonight and I sadly hate to. I love our conversations. I'd like. I really do it. I'd like to ask one more fine question before I trail off in my thoughts again.

Oh, looking back over everything we've discussed throughout this series. And I know it's been a lot. What message would you most like families to carry with them as they continue caring for loved ones with dementia.

Well, the message I send to caregivers for some foremost is take care of yourself. If you're not taking care of yourself, you can't you're not going to be able to have the energy or the physical endurance to take care of somebody else.

Give yourself some grace, you know, you're human. You you're taking care of another human. And so give yourself some grades. It's okay to say no. It's okay to take a break. And the third thing is, is that please understand that the person you're not taking care of has brain damage.

Their brain does not work the way it used to. So to try to, you know, compare this person to who they were five 10 or 15 years ago is really kind of wasted energy because they're never going to be that person again.

To be able to love on our respect who they are today, even during those really frustrating moments will help you stay grounded to continue to take care of that person and enter into their world, see things from their perspective and walk away when you need to because this is not an easy journey. It's not an easy journey in any way, shape or form.

Yeah, I want to thank you so much, Kathy for being with us again tonight and sharing your knowledge and experience with us as you have throughout the series.

I'm I enjoy being on the show.

Oh, I loved it. We can have you back again and again. I'm sure there will be something I've not asked or you can remind me.

I know. Come back.

Well, thank you so much or to thank our listeners. Until next time. Bye bye for now.