FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

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The episode opens with eye-opening statistics about the challenges faced by unpaid caregivers, including the extensive hours of assistance they provide and the emotional toll it takes, often leading to depression and anxiety.

We underscore the tendency of caregivers to overlook their own health needs due to the overwhelming demands of caregiving.

In this episode:
0:00:00 Introduction
0:02:21 The Story Behind Episode 63
0:07:59 The Importance of Caregiver Readiness and Support
0:12:14 Frustration with Lack of Support from Healthcare System
0:14:06 Healthcare System: A Cause of Stress in Dementia Caregiving
0:16:49 Lack of Education about Dementia Implications
0:21:16 Strategies for Managing and Reducing Caregiver Stress
0:22:19 Journaling and Gratitude in the Face of Negativity
0:25:01 Deep Breathing and Building a Support System
0:30:41 A Supportive Community for Dementia Caregivers

Our discussion is driven by a deep commitment to supporting dementia caregivers, highlighting the essential need for self-care. We explore effective strategies for stress management and the importance of building a robust support system.

Listeners are encouraged to connect with us for more collaborative solutions.
Throughout the episode, we shed light on the significant impact of caregiver support in reducing the subjective burden.

We stress the importance of the caregiver’s perception of their role and how even minimal support can be transformative.

Our personal frustration with the healthcare system's inadequate resources and education for primary caregivers is candidly shared, emphasizing how this contributes to increased caregiver stress. 

The complexities of navigating the healthcare system and understanding dementia add further strain.

As we confront the reality of dementia caregiving, we emphasize the importance of having early and ongoing conversations about end-of-life preferences and quality of life.

We also highlight the inevitability of needing round-the-clock care in dementia's later stages, urging caregivers to plan for this.

To combat stress, we recommend therapeutic practices such as journaling, focusing on daily gratitude, prayer or meditation for spiritual strength, and deep breathing exercises for immediate stress relief.

This episode is a heartfelt call to acknowledge the vital role of caregivers and to provide them with the necessary support and tools to navigate their challenging journey.

Email me: [email protected] 

Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/

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Transcript

Introduction to caregiver stress and statistics

[0:01] We just got done recording episode number 63, Beyond Burnout, How to Stress Less in Dementia Caregiving, where we reviewed three things and I got super passionate again.

But we talked about some statistics in the introduction to caregiver stress.

We talked about understanding general sources of stress in dementia caregiving.

I had a little bit of a tangent on the healthcare system and how the health care system is actually contributing to dementia caregiver stress, so pay attention and listen to that because that was quite a rant.

But anyway, I am definitely passionate about helping people with dementia, family caregivers, because I'm one.

We talked about some strategies, we talked about four strategies for managing and decreasing your stress levels, And then the fourth thing we looked at today was how to build a support system for you and what the four, there are only four different ways that you can truly get dementia education, what those four ways are, and then invited you to look at how we can work together a little bit closer.

So without any further ado, here is today's episode.

Welcome to Dementia Caregiving for Families

[1:27] Hey there, success seeker. Welcome to Dementia Caregiving for Families.

Do you feel overwhelmed with the daily struggle of dementia caregiving, looking for an easier path?

You're in the right place.

On this podcast, we teach you the skills to simplify caregiving.

We unravel the mystery of dementia and guide you through the often difficult behaviors. I'm Lisette, your host and fellow family caregiver.

As an occupational therapist, I bring my professional and personal experience to this community.

Here we speak the truth, but without the verbal vomit.

I know you will find value in today's program, so buckle up while this flight takes off.

Introduction and the story behind the episode number

[2:22] Well, welcome to episode number 63. And you'll have to go listen to the previous episodes that explain why it is episode 63, even though you can look in Podbean and see that there are not 63 episodes.

There's a story behind that.

And the story is that I had a different program that we are in the process of putting back up again, but we took them down when we launched this podcast.

So the older episodes will be up as we work through that.

But anyway, welcome to this episode, episode number 63, which is Beyond Burnout, How to Stress Less in Dementia Care Giving, or dementia care.

So I have to cheat today because we're gonna do a little bit of statistics.

So to introduce, as the introduction to this program, I'm going to give you some statistics regarding dementia caregiving stress.

Did you know that there are over 11 million caregivers that provide unpaid care for people living with dementia and Alzheimer's?

And it is estimated, so it is estimated to be about 18 billion hours of assistance.

18 billion! My mind cannot wrap around those billions, right?

[3:51] And then as people are experiencing dementia and as their symptoms get worse, caregivers often start to experience more emotional stress, like 59%.

So more than half of the caregivers of somebody living with dementia experience emotional stress.

Emotional stress and health problems faced by caregivers

[4:16] You've ever had emotional stress? I know for a fact that I have, and I am a family caregiver of people living with dementia, and I have experienced emotional stress.

What does that look like? Things like depression, anxiety, chronic stress, health problems, your own health problems.

Did you know that about 74% of the family caregivers and the primary caregivers of a person living with dementia will actually delay their own health concerns?

Which is just making this whole problem and this whole process so much worse.

But they're doing that because they, the primary caregiver, doesn't have the support that they need in order for them to actually take care of their own health.

And that is something that we really need to start to talk about a little bit more.

[5:12] Most of the time, here's some more statistics, the informal care partners or caregivers of people with dementia are the most at risk for having significant problems with their own mental health, right?

With, like I said, depression and anxiety and all of these other stressful occurrences.

And I don't know about you, but I don't want that to be me.

I'm a family caregiver, just like you.

And I have realized that I need to take care of me before I even worry about taking care of them.

Because when When they pass away at some point or another, everybody's going to pass away, right?

We don't talk about that much, but people, you know, we die.

We have a beginning, we have a journey, and we have an end. Unless the Lord comes again, we're all not going to make it out of here alive, guys.

So we may as well talk about the fact that when the people that we are helping, when the people that we love that are going through this process, when they're no longer there, I am still going to be here and I'm 53 and I want to still have my own health.

[6:27] I want to still have my own relationships with my children.

I want to be able to, Lord willing, in the future be a grandmother and have the wherewithal to actually be able to be a grandmother and enjoy being a grandmother.

So I love my mom and dad, and I'm here to support them, but I am not going to do it at the expense of me and my own health.

But there are so many family caregivers out there that are putting their own health and wellness and future at risk because they are not either willing or they don't have the support or they haven't found the support or so many other reasons for not having, or not even just, you know, one of the biggest things I'm starting to realize is people just don't recognize that.

Caregivers not recognizing themselves as caregivers

[7:21] They are a caregiver they don't even realize that they are a caregiver they don't identify as a caregiver and that's a big problem because if you don't even identify with the fact that you are a caregiver to somebody living with dementia you're not looking for help you're not looking for resources and then eventually all of a sudden you just wake up and boom.

It's there and it's too late for you to actually have done anything to help yourself in the process.

But anyway, I got onto a little tangent, which by now you probably are getting used to if you're listening to this program.

But then some more statistics and then we'll move on to the rest of this.

Research also indicates that 53% of interventions.

[8:11] That are aimed at supporting dementia caregivers showed positive effects on at least one outcome most commonly, and please hear this clearly, most commonly on reducing subjective caregiver burden 40 by 46.2 percent.

So the research shows 53% of interventions that make an, impact on one outcome and most commonly by reducing the subjective caregiver burden. What does that mean?

[8:49] It is the primary caregiver's own experience, their subjective experience of their burden.

Importance of caregiver readiness and preparation

[9:00] Research indicates that if we support caregivers by making one thing easier, just one thing easier for them, they perceive their burden to be lightened.

It's not to be as hard.

[9:20] And then we were very much, needing to explore that because there is a thing about, there's a significant part of being ready for caregiving.

The research also shows that there's a scale, it's called the Preparedness for Caregiving Scale, and it has a whole bunch of questions and I didn't pull them up, but the bottom line is that if you can even increase, Let's say the points are out of 20 and the person is experiencing a 14.

If you can improve it by one point, by even one point, it significantly decreases the burden on the person who is the primary caregiver.

So why are we not working on being more prepared as family caregivers?

That's my question. Why is the healthcare system not focusing on trying to improve the caregiver readiness to be able to be a caregiver?

Lack of support and resources from the healthcare system

[10:29] How do we decrease the primary dementia caregiver's stress levels if we're not talking about it?

I don't know about you guys, but when my dad was diagnosed with mild cognitive impairment, which isn't even dementia.

[10:44] And I'm praying that it was because I was very open and honest with the doctor about the fact that I am a dementia specialist, I'm an occupational therapist of over 30 years, and I do bring to the table a significant knowledge base and understanding of what it is that I'm facing.

But I don't think it's necessarily because of that. They didn't even, like legitimately the day my dad was diagnosed with mild cognitive impairment, they didn't hook me up with any resources.

We didn't get any information, nothing, not a brochure, not a piece of paper that says this is what mild cognitive impairment is.

We just got, I kid you not, a year follow-up appointment.

[11:38] What kind of support is that? If I were not an occupational therapist with 30 years of background in dementia care, in dementia caregiving, I would be floundering.

And I contend that that is what is happening.

If that happened, and this was the specialty center, this wasn't the primary care physician, this was the specialty care center.

No, this is the local support group. No, here's information on mild cognitive impairment.

No, are you okay? Do you need support? Do you need help?

Nothing, nothing, not a single thing.

In case you don't pick up on that, I'm a little hot under the collar about that because I'm praying, like I said, that it's because they knew that I knew, but my guess is that it isn't because I have heard of so many other primary caregivers, there's family members going with somebody who find out that their loved one is now being diagnosed with dementia and they get nothing, nothing from the primary caregivers.

The healthcare system is totally broken.

[12:50] But you know, when I was an OT working in the hospitals, I would have someone with dementia come in and somebody's mama comes in and mama has a UTI, mama's been struggling with dementia for a while.

And then I start to talk to the family caregivers, and I ask very good questions.

And because of my background, I figure out exactly where that person was before they even got sick.

And then I start to educate the family related to what is going on, why it's happening, what they can do, how they can change, information that they need, resources that they need.

And I spend 45 minutes, which is the only time I have available to educate that family and at the end of the conversation, they're like.

[13:37] Why didn't anybody teach us this before? This makes so much sense.

Where were you five years ago, two years ago, last year when we needed you?

Why are we not as a healthcare system doing a better job of helping the primary caregivers of people living with dementia?

Healthcare system contributing to caregiver stress

[13:54] Because we, the healthcare system, are creating a lot of the caregiver stress.

We are contributing to that. But like I said, I kind of digressed a little bit, but let's talk about point number two.

How do we understand what causes some of the stress in dementia caregiving?

Well, I contend with you, like I said, number one, one of the causes of primary caregiver stress in the dementia caregiving process is the health care system.

The health care system is It is burdensome to navigate when you are a family caregiver.

We have made it so hard for the person who needs help to access the help that they need.

[14:44] The primary caregivers are not hooking people up with information.

I had a phone call with a gentleman who lives locally here this morning, and he told me the exact same thing.

He's like, they didn't hook me up, and the person he loves has towards the end stage of dementia now, but they didn't hook him up with any resources, neither online resources, nor primary, you know, location-specific resources, support groups, or whatever.

He was, he was left to flounder. He was left to figure it out by himself, and he was, you know, and so we, we, the health care system, is actually creating some of this burden that the caregivers have.

Barriers in Medication Management and Doctor's Appointments

[15:28] I'll use myself as an example.

The primary care doctor, I love him dearly, but he drives me nuts.

My mom and dad's primary caregiver is actually putting roadblocks up for me that make it harder for me to be a primary caregiver to my parents.

And that has to do with medication management. And that I have to remember every two months, to get a renewal prescription on a medication that my mom is on, and has been on for 20 years that I cannot access any earlier than the 30-day prescription.

[16:09] But I have to call the office or get on Epic every single two months.

I've convinced him now to go to three months.

Every three months, I have to ask them to send in this prescription.

That is an additional task, an additional burden that I now have to carry to remember, between all their doctor's appointments, and they have seven or eight doctors each that I have to take them to because my dad doesn't drive anymore, right?

So we, the healthcare system, is putting up barriers for people to make it harder for them to just do the day-to-day caregiving.

Why do we make it so hard? What other sources of stress are there for people living, the caregivers of people who have dementia?

I contend another reason for stress is because we are not doing a good job of educating people about what the implications of dementia are.

What do you mean by that, Lisette? Well, let me tell you what I mean by that, Lizette.

[17:21] Dementia caregiving is the reality of the matter, and you'll hear me say this a lot on the program.

The reality of the matter is two things. We're all going to die.

I hate to break it to you unless, if you haven't thought about it this way, but we are all going to die at some point or another.

[17:43] The moment we find out that somebody we love has dementia, we know we are in the final approach. Think about an airplane on a flight, right?

Our life is like a flight.

When you find out somebody you love has dementia, you are on your final descent into the end of life, right? That's the reality.

The same thing if you get a cancer diagnosis, if you get a brain cancer diagnosis or a terminal cancer diagnosis.

It is no different than one of those.

We know that when somebody is diagnosed with dementia that they ultimately at some point or another, because we're all going to die, they're going to pass away.

What we don't talk about is now we actually have an opportunity.

And nobody talks about this as the opportunity that we now have of having hard conversations earlier on, more frequently, about what we want that to look like.

So that's the first point, right?

We don't talk about what do we want the remainder of our life to look like, because I want to have quality of life.

I do not want to have quantity of life. Everybody is different.

But for me, I want quality of life.

[19:04] And the second thing that we don't say early enough or often enough is if you live long enough with dementia, If any person lives long enough with dementia, you will need 24-hour care.

[19:18] End of discussion, no if, and, or, buts. That is the reality.

There are multiple places along the journey that you can pass away from another cause like a heart attack or a stroke or whatever, that means that you don't actually get to needing 24-hour supervision.

However, if you live long enough with dementia, if the person you love lives long enough with dementia, you will need 24-hour supervision.

So why don't we start to talk about that from the beginning?

Why do we not start to plan ahead for what that's going to look like?

And in another episode, we will talk about the four plans, and I actually think it was a previous episode that we talked about there are only four plans for people living with dementia.

There are only four plans for anybody who is living with the terminal process.

[20:17] Those are the facts, guys. I hate to be the bearer of bad news.

But understanding what's causing caregiver stress, the healthcare system is causing caregiver stress.

The fact that we do not talk about the fact that people will need 24-hour, supervision so we don't give them the opportunity to actually prepare for it, and then we don't come and undergird the people who are the primary caregivers of somebody living with dementia earlier on, because there's this assumption, oh, they're fine. They're okay.

They're coping. Well, guess what? They're not. They are overwhelmed.

They are not coping well. They are all by themselves, and they are just trying to keep their head above water.

And we, the family caregivers around a person who is living with dementia, need to do a better job of actually helping them.

And so we contribute to this. Society is contributing to the stress of family caregivers.

And so let's talk about point number three, which is what are some strategies for managing and reducing stress, right?

Caregiver stress. And the reality is we don't actually put these systems in place earlier on, which means by the time we get to this point, they're burnt out, and then this isn't going to help.

[21:44] But I want to encourage you, if you were earlier on in this journey, I want to encourage you, please, I know this is going to sound really foolish and stupid, especially if you've not been somebody who does this before, but start to journal.

Journal your thoughts. Because, and here's the reason why, I'm a why girl, because the way we think is where we go.

So, if you are constantly thinking, oh, woe is me, I can't do this, this is overwhelming.

The Power of Positive Journaling

[22:23] All of these negative thoughts, guess what? That is what you are going to experience.

I guarantee you, that is what you're going to experience.

But if you start to journal and you catch yourself in that negative spiral, in that negative loop about, oh, woe is me, and doom and gloom, and life sucks, as opposed to journaling from a perspective of gratitude.

What do you still have?

Finding the good in the hard providential journey that you are on.

Journaling has been something I just took on in this last year, And I significantly regret that I haven't been journaling more in my life.

And kudos to my sister, who has been a journaler forever and ever. Amen.

She is one of the people who encouraged me to journal during this process that we are experiencing, her and I, as family caregivers to my parents.

[23:30] What I want you to do is I want you to journal. Yes, you can write down what you are experiencing, but don't wallow in it.

I want you to find every single day something to be grateful for.

Every morning when I start my morning, I write down five things I'm grateful for. Only five. If you cannot find five, find two.

Write down, journal, something that you are grateful for.

That's the first thing. The second thing is really pray.

Because I know this is not a Christian broadcast.

[24:05] This is not a Christian podcast per se, but I am a Christian, and I believe and I serve a good and loving God and Father who has put this difficult providence in my life for me, for my good, and for His glory.

That is what I believe. I'm not telling you what to believe, but that is what I believe.

And so when I frame it from that perspective, even though I am not grateful for dementia per se, I am grateful for the lessons that I am learning through this dementia caregiving process, the lessons that I am learning about myself, my resilience, my strength, my ability to be flexible, my deep and abiding faith.

And I find that by praying, it really helps me.

[25:11] Remember that this too is for me and for my good.

And although it doesn't always feel good, I know that it is for my good.

And it is also for the good of the person who is experiencing it.

So pray, if you are not a praying person, then meditate, whatever your faith background is.

We are spiritual beings, body and soul. so you have some form of a process that you go through, use that process, lean into it, don't shy away from it.

And then the third thing and this is really, this is really one of the most practical things that you can do is just deep breathing.

[26:00] In through your nose for four counts and then out through your mouth, for four counts and do that frequently in through your nose for four counts and out through your mouth for four counts.

Deep breathing shows so there's so much research related to deep breathing and meditation and those kinds of things and then exercise.

I didn't even write that one down but exercise.

And then the fourth one, and you'll hear me repeating this over and over and over in this podcast, is building a support system, building a support system.

So we only find, I have found out that dementia education, you can only find really in four places, right? They're free.

There's free or very low cost, right? Books, TikTok.

I ran into a woman at church one day who told me that her dad has dementia, and I asked her where she gets her information from, and she told me TikTok.

And my jaw about dropped onto the bottom of the floor, because I'm like, why would you get your dementia education from TikTok?

I'm not saying that those videos aren't valuable, but they are certainly not sufficient.

What can you learn in the 30-second clip?

[27:24] Of something that took me 30 years to learn. I'm just putting it in perspective.

Podcasts, nothing wrong with a podcast. I sincerely hope you subscribe to this podcast.

I want you to come back because I want you to get reliable information regarding dementia and dementia caregiving.

That's a free way of getting dementia education.

Like I said, books, podcasts, TikTok, things like that, YouTube videos, not saying those are inherently wrong, but that's one place that we get education.

The second place that we get dementia caregiving education is for example like local support groups but there's a cost involved in that you have to drive there, you have to leave the house, you've got to find somebody to stay with the person or they have to come with and it is more specific information but it is not necessarily specific to you and your particular challenges.

[28:20] Support groups are not bad, I don't want you to hear that, I want you to go to a support group, but a support group is is not the same as a coaching program, an educational program that truly teaches you the skills and the strategies that you need in order for you to be a successful dementia caregiver.

The third place that we can start to build a support system, or some free online or lower-cost online membership programs, right?

There are some of those out there, but it is very general information and it is very non-specific to you.

[28:57] You've got to weed through a lot of the information.

[29:01] A lot of these groups, and I hate to, you know, the reason in my introduction I talk about verbal vomit is because I've been in those groups.

I've seen what everybody is writing. Thank you.

And we come back to frame of mind, right? So if all you are putting out in the world regarding dementia and your process is a woe is me and doom and gloom and life is terrible and the blah of dementia, you're not looking for the good, which ties back into the journaling and the praying and the looking for the good in this hard providence, in this hard situation.

And then the fourth way that you can build a support system is joining a group like mine or other groups.

You don't have to join mine, but they are out there.

There are actually online groups out there where you can get more individualized support.

Like if you want individualized support, go find a dementia coach, like a one-on-one dementia coach.

[30:01] They're out there. I do that too. But the group coaching program, the reason I particularly like the group coaching component of it is because it's a community.

It's a community of other people who are dementia caregiving families just like you, where they all come together and they're learning from one another.

And when we do the group coaching calls, everybody's at a different point in their journey.

So if Susie is earlier on in the journey, she's learning from Johnny's situation.

And what happens is it's infused throughout.

So the people in the group coaching programs are learning all throughout, and not just in a clinical.

Building a Supportive Community for Dementia Caregivers

[30:49] You know, this is the stage, et cetera, but a practical, infused community.

And they are making friends with one another. and they are supporting each other.

And it has turned out to be such a wonderful opportunity.

I never realized how big an impact it has on these people until I got them in this group.

If you are ready for something like that, I invite you to come into our group.

There's education. There are resources.

There's, you know, a community component. There's coaching.

It is a very highly curated group of people who are walking through this marathon together over an extended period of time.

So I leave you with that invitation.

If you're ready for that, go to DementiaCaregivingMadeEasy.com.

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About the author

“Think Different” Dementia’s owner, Lizette Cloete, OTR/L graduated as an Occupational Therapist from the University of Pretoria in South Africa in 1992. Lizette has almost 30 years of experience as an Occupational Therapist in a variety of settings, the latest being in the home health environment. She enjoys teaching on the topic of dementia, most recently presenting at a national conference on the topic “Dementia Made Simple”.

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.

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