Navigating Dementia Care with Compassion and Understanding

Have you ever wondered how to navigate the complexities of caring for a loved one with dementia?

This episode offers invaluable insights into this challenging journey, blending professional expertise with personal experiences.

0:01:37 Making Decisions and Supporting Aging Parents

0:05:07 Transition to Weekly Question and Answer Format

0:13:45 Underestimating abilities and fear/anxiety in dementia care

0:16:04 Dementia behavior diary and structured routine for a loved one

0:22:19 Training for toilet recognition and awareness

0:27:07 Strategies for nighttime bladder control

0:29:32 Strategies for Assisting with Toileting for Individuals with Dementia

0:32:31 Importance of Incontinence Management and Toileting

0:37:21 Planning a Trip to Hawaii with Husband's Dementia

0:40:09 Considerations for Traveling with Dementia: Routine, Environment, and Falls

0:44:19 The challenges of traveling with a loved one with dementia

0:48:37 Simplifying the holiday season for individuals with dementia

Supporting Aging Parents: Decisions and Love

Caring for aging parents is a journey filled with decisions that affect both caregivers and their loved ones. Lizette, an occupational therapist, shares her personal story of supporting her parents, emphasizing the importance of making decisions that align with one’s beliefs and family dynamics. It’s about finding the right balance between providing support and respecting the autonomy and preferences of our aging parents.

Tackling Dementia's Challenges: Fear and Anxiety

One of the most pressing issues in dementia care is managing fear and anxiety. Lizette discusses strategies to help loved ones navigate these emotions, focusing on empathy and understanding their perspective. By putting ourselves in their shoes, we can better address their needs and alleviate their anxieties.

The Power of Routine in Dementia Care

Routine plays a crucial role in the lives of those with dementia. Lizette emphasizes the significance of a structured environment in providing comfort and reducing anxiety. Simple strategies, like maintaining a consistent schedule, can significantly impact the well-being of both the person with dementia and their caregiver.

Navigating Incontinence with Dignity

Incontinence is a sensitive topic in dementia care, and the Lizette advises to handle it with grace and practicality. The discussion covers the importance of understanding the physical and emotional aspects of incontinence, offering compassionate strategies to manage this challenge while maintaining dignity.

Journeying Together: Traveling with Dementia

Considering a trip with a loved one who has dementia? Lizette provides thoughtful advice on how to plan and execute travel, focusing on the unique needs of someone with dementia. It’s about ensuring safety, comfort, and enjoyment for all involved.

Holiday Celebrations and Dementia

The festive season can be overwhelming for individuals with dementia. The podcast offers tips on simplifying celebrations to make them enjoyable for everyone, particularly those with dementia. It’s about creating an environment that is familiar, comfortable, and stress-free.

Final Thoughts: Embracing Each Moment

Lizette closes with a reminder of the importance of embracing each moment with our loved ones with dementia. It’s a journey that requires patience, understanding, and a lot of love. The host’s insights offer a beacon of hope and guidance for those navigating this path.

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Transcript

Introduction: Demystifying Dementia

[0:02] Welcome to the Baffled Brain, Demystifying Dementia, your daily podcast that will teach you everything you need to know about dementia.

At Think Different Dementia, we know that dementia seems complex and challenging to manage, but we also know with the right tools at the right time, dementia is made simple.

I am your host, Lisette Kruter from Think Different Dementia, where we believe you're only one technique, the right technique away from thriving and not just surviving your dementia journey.

So please like this video, please subscribe to the podcast, and please share these videos with your friends and families so that we together can thrive and not just survive your dementia journey.

So welcome to today's program.

[0:54] Well, welcome, welcome, welcome. I hope you guys can hear me.

It has been a hot minute since I've done this. I feel a little bit discombobulated.

It's at a different time of the day, a different, well, not different time of the day, but different day of the week. week and I just wanted to come back and tell everybody what was going on in my life.

Welcome to the Baffled Brain, Demystifying Dementia.

Today is November the 10th, the day before Veterans Day and it is 2021 and this is episode 55 and I am super excited to be back.

Making Decisions and Supporting Aging Parents

[1:37] We have have lots of decisions that my husband and I are needing to make pertaining to our own lives and what's going on in our lives.

I am an occupational therapist and I also have parents who we are helping to support and don't kick your support there, Lisette, because it makes the camera move around.

But anyway, so we are in the process of actually renovating our house and trying to make make decisions about what we're planning on doing, whether we're going to be staying here, moving to Greenville, how to help my mom and dad.

And that has been very tumultuous.

It is a hard decision to make. Nobody can make the decision for you.

You have to be able to make the decision regarding what you believe is right for your own life.

And that's all each one of us can do, right? That's all my husband and I can do.

I have a wonderful supportive sister. She lives up in New Hampshire.

And so we dialogue all the time back and forth about how to support our aging parents.

And my sister has been tremendous in encouraging me to do what's right for me.

And so part of how we came to this decision about what we're going to do.

[2:57] Boils down to what's going to work for my husband and I, because we are Christians, we are believers, and we believe that the primary responsibility we have is for one another.

When we married, when we got married, when my husband and I got married in 1993, we got married for life.

And the Bible tells us we're supposed to leave and cleave.

And so we are negotiating, navigating this journey and how to support my aging parents and how to still maintain our husband and wife relationship without taking away from that primary relationship. relationship.

And the reason I bring that up is because we are on a lot of large dementia websites, Facebook groups, all these different things where people tell us what to do all the time, right?

When you post questions in these forums, when you're asking people's opinions, everybody has an opinion about what to do. And that is certainly right.

But you have to come from your own worldview.

You have to come from your own perspective. And so, my perspective always has been from a Christian worldview perspective, and that the primary relationship I'm here to protect first is my husband and mine, and thereafter.

[4:21] Our parents and our children.

And so, we made a decision this past week, which has been one of the reasons I've been absent, isn't is because I have been trying to figure out what it is that we are going to do.

We have decided that we are going to support my mom and dad, but we're going to support them where we live.

And so we are in the process of renovating our house.

I love renovation, but it sucks to live in it. It's really hard when you're living in renovation.

If you've watched any of my other videos, you can tell I'm not in my normal space.

My background's different. It's because my house looks like an atomic bomb has gone off.

Welcome to today's program. This is The Baffled Brain, Demystifying Dementia.

Transition to Weekly Question and Answer Format

[5:07] Today is November the 10th, and this is episode 55.

I'm going to go back to a weekly format. The daily format just does not work for my life. We're going to go back to a weekly format.

It's going to be a question and answer format, the way I have always kind of done it.

I'm going to solicit questions from the group and I'm going to be trying to be there for you guys and answer your questions as you have them.

And so we have several new people in the group.

[5:39] In the group Think Different Dementia Education Group. If you're not in that group, please, I invite you to join the group.

It's called Think Different Dementia Education Group because it is a supportive group, but it is mostly for education.

That is where I ask people questions to give me questions that I answer on this program.

[5:57] So today's first question comes from that group, and it is Christina's question.

So, Christina said, how to handle fears and anxieties?

And so, I asked her for some follow-up information, which I'll do when I dialogue with people in the group.

I really get to know you guys. I know people by their names.

And that's the purpose behind this is for me to get to know you and for you guys to get to know me.

So what Christina asked is how to handle fears and anxieties.

And what I asked her was, give me more information.

Tell me what you're talking about. And she said, why my mom doesn't understand or why she cannot remember and she's afraid of being alone.

She needs to have somebody with her all the time and is afraid when you leave the room.

She lives with her brother. And when her brother is at work, Christina's sister, who isn't working, stays with their mom.

And she frequently displays a behavior where she says her mom will shake and just say, oh, help me, Jesus, help.

And obviously fear and anxiety is playing a big role with Christina's mom.

And so how to handle fears and anxieties?

So, Christina, that is truly a difficult situation, and I...

[7:27] I understand that. I can only answer these questions in generality.

I cannot answer them in very specific detail, but I can tell you generally what are behaviors, right?

So your mom's what we call behaviors are fear and anxiety, right?

So your mom is anxious and afraid.

And I put myself in your mom's position. I would be anxious and afraid too if I did not understand what was going on around me.

And when you cannot remember, like truly remember something.

Now, when I talk about not remembering something, I really mean that it's gone.

It's like it never even existed, right? What's the difference between not remembering something and being forgetful, like short-term memory deficits and forgetfulness.

Well, forgetfulness is when, and we're all forgetful at different periods of times in our lives.

Everybody is. I've been forgetful before. I use this analogy all the time.

I left my car keys in a stupid place one day and spent half hour plus looking for my car keys, and somebody at work found them for me because I'd put them in a dumb place, and I had forgotten where I put them.

But the moment he said, hey, did you put your car keys in the fridge?

[8:53] Duh. Yeah, I remembered. I put my car keys in the fridge.

So I didn't lose my memory of the activity.

I forgot, but I was able to retrieve it later on.

And that is is totally different than truly forgetting, truly not remembering.

So, when somebody is fearful and anxious because they cannot remember.

[9:20] Whatever it is that just happened, they are living minute by minute, second by second.

So whatever they can see, whatever they can touch, feel, taste, talk to, be aware of right then and there is their entire reality.

So it must be extremely anxiety-provoking and fearful when you truly cannot remember, you forgot, the moment somebody walks out the door that they were even there with you.

How lonely and afraid must you feel when that is the reality that you're living in?

Which means it doesn't help, Christina, that people come in and tell you things like, do you remember?

Do you remember I just told you to do?

I just told you, you know, brother's coming home at 6 p.m.

If she doesn't remember that you just told her, telling her again that, you know, but I just told you is not helpful because she doesn't, it didn't exist.

It's not there. So.

[10:40] Always, when we, as I'm an occupational therapist, that's my background in training, when I'm working with patients in their homes with dementia, when I'm working with what we call a dyad, right, a husband-wife caregiving dyad, or a father-mom dyad, or a daughter-parent dyad, two people, a care provider, and somebody with dementia, dementia, I'm mostly focusing, yes, I'm taking care of the person who has dementia, but I'm mostly focusing on the person who is taking care of that person.

Because I cannot truly, at a certain point, a person with dementia, they cannot change anymore.

So we have to change everything around them.

So when I'm working with a husband and a wife, or in your case, you and your brother and your sister working with your mom, my job, Christina, is to teach you strategies, to teach you what to look for, to teach you how to problem solve it on your own, because every moment with dementia is another moment with dementia.

Every person with dementia is different. Every situation is different.

[12:00] So how do you break it down? Well, they're always going to be, what is, what is fear and anxiety?

What is shadowing? What are all these different things?

Well, they're, they're your mom's attempt to communicate something to you that she cannot communicate anymore.

So what I mean by that is your mom cannot necessarily tell you.

[12:27] But you're my security blanket.

Your brother is my security blanket. The moment you guys are out of my field of vision, I feel lost and alone, and who's going to help me, and who's going to take care of me?

I can't communicate that to you, so I have what we call behaviors, challenging behaviors.

Now, fear and anxiety oftentimes stem from insecurity because she cannot remember. And so, A lot of the time, what I would guess, and this is just a guess, it's an educated guess, your brother is possibly her security blanket.

So if she is less anxious when your brother is with her, if your mom is less fearful, less anxious when your brother is there, it is because he is her primary care provider and he makes her feel safe.

Okay, he makes her feel safe. What are other reasons that people are fearful or anxious?

So a lot of times people with dementia will have.

Underestimating abilities and fear/anxiety in dementia care

[13:46] Will either, we as people who are helping them will either way overestimate their abilities or way, underestimate their abilities.

And lots of times in my experience, this is just my experience, when people are fearful and anxious, it's because the people around them are still thinking that they're able to do more for themselves independently than what they truly are.

They the person with dementia may not truly know what to do next so let me give you a concrete example of that right so for example.

[14:27] And you tell the person that you want them to help you with something and you've instructed them and you walk away.

But the moment you've walked away, that information that you just gave them went away and they don't know what to do.

It's not that they're not capable of still doing it.

It's just that they're not capable of still doing it without somebody standing there and step by step, minute by minute, reminding them what they're doing and helping setting them up for success.

So, a couple of ways that you can problem solve this is we're always, I'm always looking at three things. I'm looking at the person with dementia.

[15:07] You know, is it medication related? Is it fatigue? Is she not sleeping?

Is it her diet? it. I'm looking at the person providing the care, which in your case, there are three of you guys, a brother, your sister, and you who are all helping your mom try to handle, take care of her at home, and then the environment.

What does the environment look like? How is the environment contributing to her behaviors?

If she truly is struggling to understand what's going on around her, if she is truly struggling to process information, living in the chaos that I'm living in right now would make me fearful and anxious if I was having trouble with my memory, because we take our cues from our environment a lot of times.

So to start off, Christina.

Dementia behavior diary and structured routine for a loved one

[16:04] I want you to do me a favor if you watch this video later on.

I want you to write down a dementia behavior diary is truly a significantly helpful tool for you when you are trying to figure out what's going on, because there's usually only three things that play together.

And when they're all working together, things are happy. when one's pulling away from the other, everything starts to fall apart.

But if you start to write down, and you've got to be specific, and the more you keep your loved one who has dementia in a very structured routine, the easier it is for them to not feel as fearful and anxious.

So Christina, welcome to the group. I believe you're a new member in our group.

I hope this was helpful to to you. I hope you watch it on the replay.

I will tag you in the replay on this video.

Welcome to The Baffled Brain, Demystifying Dementia.

If you're watching this in one of the larger dementia groups, please join my group.

It's called Think Different Dementia Education Group, where I truly strive to do education with people regarding dementia.

So that was the first question of the evening.

And next is this one. This one is a longtime member. Her name is Jennifer.

[17:26] Jennifer, great to hear from you again. I've been missing in action.

I know it's been a hot minute since I've been on these, but I'm super excited to be back.

[17:36] I am going to answer Jennifer's question.

Jennifer was asking about incontinence. And incontinence is a truly difficult subject, right? It's a touchy subject.

She says, my dad is somewhere in the stage six, but he can right now still toilet himself and she specified he's not wearing diapers yet and she asked when will this change and will it happen soon?

Jennifer, when I hear toilet, what I understand from toileting is three things.

A person can pull their pants up and down and wipe themselves and they know how to do those things adequately, in the right sequence, with the right amount of hygiene purposes, with the correct cleansing, you know, good quality, right?

So when we're talking about toileting, toileting and incontinence are two separate little buckets of the, well, that's possibly not the best way to describe it, but two buckets of, one One is managing your bladder and bowel, and the other is the mechanics of going to the bathroom, pants up, pants down, and wiping.

So toileting is a very complicated...

[19:00] Self-care task. A lot goes into toileting.

If you've ever potty trained a child, you know how much goes into toileting, how much goes into potty training a child.

You have to recognize that you need to go to the bathroom.

And when the bladder or the bowel sends the message to the brain, you got to recognize, oops, I got to go. I got to go now.

And then you've got to find, locate the place where you are going.

Then you have to be able to manage physically the The mechanics of taking your pants down, sitting down, doing your business.

[19:35] Pulling, wiping yourself, making sure that it is adequate, pulling your pants back up again, flushing the toilet, going to the sink and washing your hands. So that's toileting.

Incontinence has to do with managing your bowel and bladder, being able to physically know that you need to go.

As a person with dementia starts to progress through their different stages of dementia, we have two things starting to play together.

We have the physical changes that come with the loss of abilities over time, which includes things like coordination, balance, those kinds of things, right?

So you've got to have a lot of really good balance when you are standing to pull your pants down, walk to the bathroom, all of those things.

So there's a physical component to it. Can the person still physically manage it?

And then there is the, are they even recognizing that they still need to go?

[20:39] When does incontinence start and how to manage incontinence when it starts?

Typically typically and people are different but mostly if you've watched me for a while you know i talk about the functional assessment staging tool which is what stage six talks about which is a model of retrogenesis so as the person is decreasing through regressing back through their different stages they fairly sequentially fairly sequentially follow some developmental mental milestones going backwards.

So if you think about how a child learns to manage their bowel and bladder, right, they at first wear diapers and have no awareness that they have to have a bowel movement or tinkle, right, and we just change their diapers.

The first thing after that is that we start to try to make them continent of.

[21:49] Bladder, right? And then bowel. So sometimes people become content of bowel first because they may recognize that earlier.

But most of the time, if I remember correctly, we start with bladder training.

How do we bladder train somebody?

We don't wait for them to tell us they need to go potty, right?

We take them to the bathroom.

Every two hours, we take them potty. You wake up in the.

Training for toilet recognition and awareness

[22:19] And whether the person is actually voiding or not is irrelevant.

We're just trying to train them to go.

Then we're trying to make them recognize.

And I don't know about you guys, but when I was toilet training my kids and my daughter's 25 and my younger daughter's 23, we actually let them run with panties on, no pants, just panties outside, that they could feel the sensation of getting wet.

Wet because you cannot, if you, briefs are super absorbent and diapers are super absorbent for children.

So it takes the moisture away so they have no awareness that they got wet.

So that's the first way that you kind of start to train them. Oops, I wet.

Something happened. Oops, something happened. Cause and effect, cause and effect.

Well, when we're going backwards through through this process, we cannot have an expectation that the person ultimately over time, is necessarily going to recognize the signal that goes from the bladder to the brain, that tells them, oops, I got to go to the restroom. I've got to go pee.

And so how we, if your dad right now is still able to toilet himself, the first thing that I would expect, Jennifer, is that your dad is going to start either wetting at night, not being able to maintain his bladder overnight.

[23:46] I just recently had a couple that I was working with, a husband wife diet, and she was struggling to manage his incontinence.

And so we kind of talked about a lot of different things.

And what came out as I was working with her was she would get up at seven o'clock in the morning, and then she would leave him in bed until about 10, and then she would get him up.

So she would have a couple of hours to get ready for the day, go for a walk, you know, have some self-care time.

And at 10 o'clock when she would come in and actually wake him up to take him, he wasn't making it to the bathroom in time, and the bathroom was not far.

And so I made her some suggestions. I gave her some strategies to try, which was, you know, make sure that you're starting to switch off drinking.

[24:37] Please, please, please, I don't want you to hear me say, I don't want your loved one to drink. I want them to drink. I just want them to drink a lot early on.

First thing in the morning, water, all the way through early afternoon, lots and lots and lots of liquid, water, water, water, water, not just tea, coffee, things like that, but water.

But around supper time, around five or six o'clock in the afternoon, you want to start tapering off what they're drinking so that when When you go to bed at night, you toilet them right before they go to bed.

And then sometimes, just like with a child, when they're first learning to manage their bladder overnight, you sometimes have to wake them up in the middle of the night, take them potty, and then let them go to bed.

So what we did with her husband is she took him to the bathroom at about 10 o'clock at night.

And then she was expecting that he would be able to hold his bladder until about 10 o'clock in the morning. I'm like, baby, that's too long. He can't do that anymore.

[25:35] So she took him to the bathroom at 10 o'clock at night, but she woke up early, early, early in the morning.

And I said to her, I said, first thing in the morning, because her husband, when he woke up, she could get him up fairly easily and then he would go back to sleep again. He didn't have trouble sleeping.

So I'm like, okay, first thing in the morning, do not try to take him to the bathroom, sit him up on the edge of the bed, get him to stand up and use a urinal right next to the the bed at six o'clock in the morning when you wake up, use the urinal, have him use the urinal, get him back in bed.

He goes back to sleep. You still get him up at 10 o'clock.

And then we started a timed voiding program, which was every couple of hours, she would take him to the bathroom and she would notice when he was, whether or not he was wet. So then she could kind of back it off.

So she knew by the time we were done with this therapy sessions, educational sessions that we were doing, she knew that he could hold his bladder about three to four hours.

So she just made it a part of the routine every three to four hours.

She didn't ask him anymore because I told her, if you ask him, do you need to go to the restroom? He's going to say no.

[26:51] She'd just say, honey, come with me. And she would take him to the bathroom.

She would sit him down. He would void and so she was able to keep him continent throughout the day by doing timed voiding. So.

Strategies for nighttime bladder control

[27:07] Right now, your dad can still toilet himself, which to me says that he is still recognizing, Jennifer, that he can when he needs to go to the bathroom.

But the first thing that I would expect to start to change is that he's not going to be able to maintain it overnight.

So some strategies for nighttime. Make sure that you take him to the bathroom before night.

You can buy some on Amazon. on, you can buy, like there's a alarm system that you can buy to potty train children for bedwetting that can sense when somebody is either starting to move more.

I haven't actually used one of these before, but I've seen them that can send an alarm to the person who's helping them that you can then go in and take them to the bathroom.

Or you can just put, you know, if you're an easy go-back-to-sleep type of person.

If somebody starts wetting in the middle of the night, you can set an alarm, get up at two o'clock, not take them to the bathroom so that we're walking down the hallway and everybody's woke up, right?

But put a bedside commode next to the bed and put them on the toilet, toilet them, put them back in bed, and then have them go back to sleep. sleep.

Other strategies that I've used effectively is that sometimes it is just easier to change the briefs first thing in the morning than it is to try to wake everybody up in the middle of the night because, yes, we need sleep. I want people to sleep.

[28:35] But what you can do is by the, I always recommend okay I'll I see that right there that got me sidetracked haha I have a comment a wonderful comment Jennifer is out there is is to use the reusable pads on the bed you can buy them for about 25 30 bucks on Amazon I think they're great that's what they use in hospitals and nursing homes and so So Jennifer, I think, is who commented here, our first issues were not knowing what to do when he went into the loo, also changing his mind. He just doesn't know what to do.

I totally understand that. What that tells me is that you have to then sequence it for your loved one.

You have to step by step just...

Strategies for Assisting with Toileting for Individuals with Dementia

[29:32] A book I just recently read called Dementia with Dignity has been mind-altering for me.

Hey, I figured that out based on your comment. Hi, sorry, not Jennifer.

Put your name in there and I'll tell you, I'll say hi to you.

Your issues regarding toileting is that whoever you're helping doesn't recognize necessarily that they need to go and then doesn't know what to do next.

So strategies to help with that is to just go ahead and turn into verbal diarrhea, no pun intended, but just to verbally dialogue the whole entire time. Welcome, Ms. Pauline.

Verbally just sequence the entire thing that you're doing with the person that you're taking care of. Here we're walking into the bathroom.

Look, I'm switching on the light. Now we're going to turn. You're going to turn.

Face me. Walk with me. Look at me. Okay, now next thing we're going to do is how about we try to get your britches down?

How about you try to pull your pants down for me? See if you can do that.

Oh, you're stuck. Well, let me help you a little bit.

Okay, now let's sit down. Here. Here are the toilets right behind you.

Do you feel it by your legs? Go ahead and sit down.

[30:46] Okay, and then just kind of verbally talk your way through the sequencing of toileting with your person that you're helping.

Oftentimes, toileting is a very complicated task, very complicated.

People will still maintain it for a very long time, but oftentimes, they start to lose the quality, right?

And so, what we want to then be able to be aware of is if people are losing quality in toileting, in other words, when they're wiping, They're not wiping...

[31:27] Either adequately or properly in the right way.

Women are more prone because of our anatomy to be able to get urinary tract infections because we wipe front to back. I'm sorry, back to front.

And when we are not thinking properly anymore and we wipe back to front, we take fecal material or potential fecal material and it can get up into our urethra.

And we can get a urinary tract infection from just wiping improperly.

So toileting hygiene, making sure a person is clean, is very important because it can turn into a urinary tract infection.

Also, people sitting in wet garments or undergarments, briefs, whatever it is, sitting in wet pull-ups, Depends, diapers, whatever word we choose to use, clothing protectors.

Importance of Incontinence Management and Toileting

[32:31] Pull-ups seem to be the best description. If people are sitting in urine-saturated, incontinence management products for an extended period of time, they are more likely to get a urinary tract infection.

So incontinence and toileting and those kinds of things are very, very important things for us to keep a handle on.

And what we want to, if our loved one is getting to the point where they cannot figure it out on their own, then we have to tell them.

[33:06] Sequentially, step by step, just like we would have when we were helping toilet our young ones, what to do next, how to do it, and what to expect next.

So I hope that was helpful. Ms. Pauline, thank you for being here. I am glad you're here.

I'm sorry that I'm flubbed, not the first time in my life, not going to be the last time in my life.

This is The Baffled Brain, Demystifying Dementia. And if you're watching it on one of the other places that this is broadcast on, please join my Facebook group.

It's called Think Different Dementia Education Group, because I want people to think different about dementia.

I don't want people to just see the doom and gloom. I want to see that there are ways that we can manage things, that we can help people still thrive and not just survive their dementia journey.

The next person's question was Ms. Nancy.

Ms. Nancy is a new viewer here in my group, and I got an itch. And so, Ms.

Nancy, I am super excited that you're here. This is a great question.

It's a hard question, though, to answer because, honestly, there really isn't a right or a wrong.

There may be a better or a worse.

[34:26] And perhaps, you know, I always preface my conversations with, we still have to live.

Your loved one with dementia and you still have to live.

You have to make decisions about what that life looks like.

And we can can control a lot of things.

But taking a trip with dementia brings some unique decision-making, challenges for you because you are the only one, Nancy, who can make this decision.

Nobody else can make it for you. I can tell you stories.

Let me tell you a story of somebody who who asked me this question in another group, Nancy, and I'll get to your question in a second here.

But I had another viewer in another group earlier on this year, And she posted it in one of the large dementia groups where there are 225,000, 30,000 people.

She said, we want to take a trip.

I believe it was to Ghana. I forgot where she went.

[35:41] With my husband, everybody said, don't go, don't go, don't go, don't take the trip.

And I actually reached out to her and we messaged and I asked a lot of questions a lot of information was taken back and forth and I gave her recommendations and I gave her suggestions and she ultimately made the decision to still take the trip and they had a wonderful time time, but her husband, but she had to be very well prepared.

And by what I mean by well prepared is you really literally have to go above and beyond, above and beyond.

You cannot just, you cannot just take a trip with somebody with dementia and believe or trust that it is going to work well.

[36:44] This other viewer, and Wendy's on here, she said she took her dad on a riverboat cruise, and it was very well suited.

I think cruises can work very well. I think it depends on the person with dementia, and I honestly think it depends on your own temperament if you're the person traveling with them with dementia.

So what Nancy said was the following was, my husband's short-term memory is gone.

He's starting to get clumsy and he's starting to have a hard time getting dressed.

He is starting to have some trouble with his bladder.

Planning a Trip to Hawaii with Husband's Dementia

[37:21] We have gone to the doctor and he's on one medication, but nothing seems to help.

She says, I use briefs with him, depends with him, but I want to go on a trip.

We want to go to Hawaii and we have friends that will be with us.

This will be our last trip.

Any suggestions on flying?

It'll be a long flight. Yes, it's a long flight. And I asked her some follow-up questions.

She said that they have rented a condo and they're planning on going for about 10 days.

So miss nancy how i would break down and make this decision is the following you you have to decide.

[38:07] Independently so there there's so many different pieces to this right so you're taking your husband from a very well familiar, surrounding, where he's using his environment to keep him on track.

And he's starting to have a hard time managing his bladder in his own environment.

And now we're going, and there are lots of steps to a flight.

You know, you've got an airport, you've got a long flight.

What if he can't get to the bathroom in time on the airplane?

How are you going to manage an incontinence episode on a flight.

What kind of strategies can we come up with? I can come up with lots of ideas.

You could talk to your doctor about a condom catheter, which goes over your husband's.

[39:04] Private parts, his penis, and that has a leg bag so that if he has, if he pees, if he has to go to to the bathroom, it's contained in the catheter.

So sometimes a doctor for a trip might be willing to let you use a condom catheter for an airplane trip.

Or you can use pull-ups and briefs and double and triple layer it so that you have more absorbency.

But you have to have strategies in place. What are you going to do if he's on the airplane and he has a bowel incontinence accident?

Does your husband get wild and woolly? Does he get agitated?

Is he prone to becoming anxious?

Does he have sundowning? All of these kinds of things need to be known before you make a decision because not only are you looking at a long flight, but people with dementia really rely on a very structured routine to keep them in place.

Considerations for Traveling with Dementia: Routine, Environment, and Falls

[40:09] So, you take him out of his routine and now you throw a time change, massive time change.

[40:17] To this scenario, right?

So, you put a time change in, and now he's confused even more than he is normally.

The fact that you have a condo and that you want to do this for 10 days is helpful.

But every person with dementia, when they go from one environment to the other, it can take their brain up to three weeks, three weeks to get caught back up and establish a new routine.

[40:47] So you're going to have a change, and then you're going to have another change in the condo.

And then when you get back home again, after your flight back home, you're going to have another change.

So you're going to have multiple changes all at the same time, all within the period of a two-week span.

And it's going to likely set your husband back, that his thinking processes that are here may be here at the end of the trip.

And then the only thing that'll tell us whether he regains it is if he come is time and it can take three to four weeks for us to see whether or not he recoups okay so now a big risk that that your husband will have and that you will have is that because of the change of environment because your husband is using the environment to cue himself so a lot in how to keep on track and you take him out of this familiar environment into an unfamiliar environment, and all of a sudden he is going to be more at risk for falling.

And so now you're in Hawaii, and your husband falls and breaks his hip.

[41:58] And then you have to have a plan to get him back home again.

I don't make this stuff up, people. I do not make this stuff up.

Every single thing that I have ever spoken I have had personal, professional experience with myself.

I used to work in Branson, Missouri, which is a hot spot for people to go traveling to.

I worked at the hospital there. And we frequently, frequently had people from out of town, all over the states, international visitors come and fall, whether or not they had dementia or not right now is irrelevant.

I'm just talking about a fall, break something, be in the hospital in Branson, Missouri, and have to get back to Canada.

And so you have to factor in if you are going to make this decision to go on this trip, you have to protect yourself and this trip with travel insurance, medical travel insurance, that if something happens medically to you or your husband on the other end, that there is a medical transportation to get him back from Hawaii, back to wherever you live.

[43:13] So these are lots of things that you have to think through before you make the decision whether or not it is even a wise decision to go or not.

When you are traveling with friends, are your friends 100% aware of what's going on with your husband?

Or will this be like a light bulb moment, Houston, we have us a problem, and that they They have no awareness of how impacted your husband is in his dementia journey because he's able to hide it a little bit better in a familiar surrounding.

And now all of a sudden, he's not going to be able to hide it from anybody that he is truly struggling.

So I cannot tell you whether or not to take this trip.

That is not up to me to make that decision for you. But I will tell you that you need to have contingencies upon contingencies if you decide to take him on this trip.

The challenges of traveling with a loved one with dementia

[44:19] Somebody made a comment here in the comments that we said, we made a trip to the Alps. It needed two people to take her husband.

He did get very disoriented. Yes, that is extremely common.

On the way back home, he struggled on the plane and someone needed to get past him on the seat.

Fortunately, the person let me move into their seat, but it could have been gone either way.

Yes, he did enjoy parts of the trip. But when I look back, I realize it was only when I took him away that I realized how bad he was.

And yes, Ms. Nancy, that is something that I think whoever made that comment is 100% correct.

[45:00] We do not realize necessarily always how much routine and familiar keeps our people that we love with dementia on track.

And when routine and familiar is out of whack, everything goes to heck in a handbasket, which is why, you know, holidays are such, Miss Pauline, you're such a wonderful person.

Thank you so much for dialoguing with me. I really do like, I do this for you guys.

I want to dialogue with you. I really do. I love the interaction. action.

And yes, I don't think we realize sometimes until the person is not in their own surrounding how much they're impacted and how much they're still able to hide, but they're hiding it in their own environment.

[45:53] So, you know, this comment, this conversation about taking a trip, how to decide whether it's wise or not, I want you to ask yourself some, Nancy, I want you to ask yourself a few questions.

I want you to ask yourself, who is this trip for?

Is this trip for you to make.

[46:16] One last trip with your husband and for you to make memories with your husband and that you're hoping for good memories of this one last trip.

Who is this trip for?

Is this trip for your husband because you think that he will still enjoy it?

It may be that you are putting your own emotions or thoughts or desires because you're losing certain things in your relationship that this is the one last trip I wanted to take with my spouse, not realizing that that spouse that you want to take the trip with is not at the point where he necessarily can benefit or enjoy that trip.

And if that is the case, if the trip is for you to make memories, then perhaps it would be wiser, for you to take the trip and go to Hawaii and enjoy the trip with your friends and so on and maybe not take your husband.

[47:29] There are a lot of, nobody can tell you what to do.

And it can go either way. It can be a wonderful experience, like the person who took her loved one to, I believe it was her husband, I don't remember, it's been a few months, to Ghana, I believe it it was gone, where it was a wonderful trip. But they went for a while.

They didn't just go for 10 days. 10 days is a very short period of time in a person with dementia's brain.

Their brain needs time to get back into a routine.

So you've got incontinence, you've got an airplane, you have if he gets anxious or wild and woolly on the flight, what are you going to do?

What if you You can't get him back on the airplane on the other end.

They're just all these things.

And so I'm not going to tell you, Miss Nancy, what to do.

I would be willing to talk you through it and problem solve and just give you some ideas and strategies because each one is a different, I mean, this is a one-hour lecture just on how to take a trip.

Simplifying the holiday season for individuals with dementia

[48:37] So at the end of this program today, I'm just going to briefly talk about, because it kind kind of segues into taking a trip.

[48:45] The holidays, we are coming up on the holiday season.

And the holiday season is a wonderful time of the year, but it is an extremely stressful time of the year.

It is an extremely stressful time for us when we are dealing with people that we love who have dementia.

And it's just a stressful time of year period. I have two daughters, I have a 25 year almost 25-year-old and an almost 23-year-old.

They are December babies.

My first of December baby was a Thanksgiving weekend baby.

Thanksgiving was Thursday. She was born Sunday of Thanksgiving weekend.

My 23-year-old.

[49:25] Was born the Sunday before Christmas. Christmas was the Friday.

She was born the Sunday before.

And I can tell you when they were little, I hated this time of the year.

I hated it because between Christmas, Thanksgiving and New Year and their birthdays, I felt like I had no life.

And I felt like all I was doing was being on a merry-go-round and I hated it.

I hated it. I literally, I'm like, you could stick me in the ground and dig me up at the beginning of January, and I would have been perfectly happy to have skipped November and December every year when they were little.

And then one year, I just said, Lisette, you're doing this to yourself.

You are choosing to do this.

Birthday parties, Christmas parties, all this stuff, you are choosing to do it.

And so I got off. I got off of the merry-go-round, and I sat with my kids, and we dialogued because Christmas and celebrating Christmas and everything, all it stands for, what it means, Thanksgiving is my favorite holiday of the entire year because I'm so grateful to the Lord for everything that He has done for me, but I hated this time of year because of the craziness, so I just got off.

I got off of the bandwagon, and I simplified. And so, holidays?

[50:47] The holidays and dementia, we have to simplify.

We have to keep it simple stupid. We have to realize who are we doing this?

Are we doing it for us? Because I was doing it for everybody else.

I had the birthday parties, the Christmas parties, the Thanksgiving stuff.

I was doing it for everybody else. And I hated it. I hated it.

I hated that time of year.

And so I just decided I'm, I'm going to, we're going to do big Thanksgiving.

[51:19] And every year now, since we're supporting my parents who both have trouble with different things, ability related issues, thinking issues, etc.

We're simplifying, we're bringing it down. We've gone from having, you know, huge big church functions where I would invite everybody who didn't have a place to be, hang out for Thanksgiving, have a huge big fellowship meal at my house, 20, 30 people with my parents, all the way down to it is literally just my nuclear family.

And as we're thinking through the holidays i want i want you guys to think through how you're going to negotiate this holiday season with the people that you're supporting with dementia and who are you doing it for and how do we make it so that it is enjoyable still for everybody and there are lots of different ways that you can do it you can um you can for example just you know not have say, for example, Thanksgiving at the house.

[52:20] Where the person with dementia is living, somebody else has to host it, we just bring the person to the meal.

And maybe that means, you know.

[52:31] We sit at a table with just two or three people and everybody else.

We have to be strategic about it. We have to think it through because we don't want to put that, we want to set them up for success. We want to set our loved ones up for success.

That's what we, that's what we're here for, right?

And so the holiday season can be very stressful for us.

And people with dementia are an an emotional sponge.

They go, so whatever energy I have, if I show up at my mom and dad's house, and I'm like wired for sound, and I am stressed, guess what?

[53:06] Everything is bad, right? If I go to work, and I work with people with dementia, and I'm wired for sound, and Lizette's having a bad day, guess what? So is the session.

So I ask you guys, as we're working through this end of the the year stuff, Christmas, New Year, Thanksgiving, be strategic, think it through, talk to your families, who's it for, is it for the people who are there to all have one last memory with this person with, that may be well and good, but we want to put the person with dementia in the center and we want to make it what's good for them and everybody else has to accommodate.

That means CIS doesn't necessarily get to make all the rules and maybe we have to pick the tradition that we want to keep and we let other things go.

Keep it simple, stupid guys.

The holiday season can still be fantastic and phenomenal with your people with dementia.

Make memories. Take videos. Take photos.

[54:06] Bring out photo books. Sit and reminisce with them.

Ask them their stories. Get their stories because their stories are what we're all about, right?

So thank you for joining me again as I end all of my broadcasts every time I have one.

May the Lord bless you and keep you. Thank you so much for being here.

I'm going back to my weekly format. It suits my life better.

I'm so grateful. Thank you guys for watching.

Whoever watched tonight, I'm always thankful when somebody is here. It makes me super happy.

I hope you guys benefit from this. I am happy to have been here.

I have a little sponsor by the name of Jerry Rehab.

So Jerry Rehab, this is Mike Chua.

I'm going to play his little video real quick if I can find my brain.

And I will be back next week.

I'm going to try to get back on a Thursday schedule. We'll see.

I will post these in the group again later on. So yet again, the Lord bless you and keep you.

I'm back to my weekly program. If you're not part of this Facebook group, please join Think Different Dementia education group, because my goal is to help you thrive and not just survive your dementia journey. Bye, guys.

Disclaimer: These blogs, videos and any work done by Lizette Cloete OT, as a Member of Think Different Dementia, LLC, is given only as educational content and consulting work. This does not create an Occupational Therapist-Patient Relationship. The educational content and consulting work performed should not be considered medical treatment as an Occupational Therapist. The consulting work does not take the place of medical work normally performed by a licensed Occupational Therapist. Please consult a licensed Occupational Therapist for medical advice.

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. She and her husband emigrated to the USA in 1993, and currently reside in South Carolina. They have 2 daughters and one son-in-love, 4 cats, one dog and 16 chickens.

Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. Among her many accomplishments, she served on the South Carolina Occupational Therapy Association’s Board of Directors from 2008-2014. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”