FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

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Have You Felt Overwhelmed by the Responsibilities of Dementia Caregiving?
Dementia caregiving can indeed be daunting. The journey is often filled with fear, frustration, and fatigue.

Yet, understanding how to manage these feelings effectively is crucial. It’s comforting to know that faith can be a powerful tool in this journey. Remembering that you're not alone, and that strength and courage can be found through spiritual support helps immensely.

2:07 Recurring Nightmares and Coping Strategies
6:45 Practical Steps to Overcome Fear in Caregiving
12:26 Ask the Dementia Coach Segment Announcement
13:04 Importance of Seeking Support and Caregiver Well-being
13:24 Understanding the Analogy of the Frog
22:52 Workshop Invitation for Managing Challenging Behaviors
31:37 Recap on Overcoming Fear, Frustration, and Fatigue

Conquering Fear with Knowledge

Fear stems from the unknown. Educating yourself about dementia is the first step to overcoming this fear. Reliable podcasts, books, and videos are great resources. They offer knowledge that empowers caregivers. Remember, the more you know, the less you fear.

Planning Ahead to Avoid Overwhelm

Feeling overwhelmed is common among caregivers. Planning ahead can significantly ease this burden. Understanding the stages of dementia helps in preparing for what’s to come. It’s less about facing a mountain and more about climbing it one step at a time. There are resources available to help with planning, ensuring you’re not doing this alone.

Building a Supportive Community

Joining a community of fellow caregivers can be incredibly beneficial. Whether it’s a free online group or a more structured coaching program, these communities provide essential support and guidance. They offer a space to share experiences and solutions, reducing the feeling of isolation.

Importance of Rest and Resilience

One cannot underestimate the power of rest. Caregivers often neglect their own needs, leading to burnout. Scheduling regular breaks and asking for help with specific tasks can provide the necessary rest. Engaging your church or local community for support ensures you have the backing needed to continue caregiving without sacrificing your well-being.

Conclusion

While dementia caregiving is challenging, it doesn't have to be a journey made in isolation. Equip yourself with knowledge, plan for the future, and engage with a community. Allow faith to guide and strengthen you, and remember to take care of your own needs as well. Through these steps, caregivers can find a sense of control and peace amidst the challenges.

Read More:

Walking By Faith: One Christian Caregivers Dementia Care Journey

Listen to the Podcast

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Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

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Transcript

Introduction to Overcoming Fear, Frustration, and Fatigue

[0:01] Many, many, many, many times people tell the analogy of the frog related to caregiving.
And in today's episode 106, where we talk about overcoming fear, frustration, and fatigue, a Christian perspective on dementia caregiving, I talk to you about the analogy of the frog.
So listen to today's episode if you have never heard me talk about the frog analogy.

[0:40] Have you recently found out someone you love has dementia, struggling to wrap your head around How to be a Christian caregiver?
Searching for answers by joining countless Facebook groups, but find them toxic?
Learning how to cope with dementia feels difficult, but learning a Christian caregiving worldview can be easy.
Hey, brother and sister in Christ, I'm Lizette, occupational therapist, pastor's wife, turned dementia coach, and a daughter of dementia.
In this podcast, you will learn the truth that the way to make dementia care easy is your faith.
Knowing that a loving God has decreed this hard providence in your life makes all the difference.
Here you will gain skills. You will be challenged by what God says in his word about caregiving, and you will learn exactly what dementia is and is not.
Find clarity and certainty from God's word so you have perseverance for this journey.
Use science fact, solutions, and biblical principles to redeem your time.
Praying this blesses you as we dive into dementia from a Christian perspective.
Let's glorify God despite dementia.

Recurring Nightmares and Coping Strategies

[2:07] Have you ever had a recurring nightmare?

[2:13] One that happens over and over and over again.
Lots of people struggle with recurring nightmares, and mine always happens when I have a fever, ever since I was a little girl.
It frightens me. I experience fear.
It makes me frustrated because I cannot control necessarily my nightmare because it's a fever nightmare.
And when it happens, I wake up fatigued.
And these three things, fear, frustration, and fatigue, is something that every single one of us has to overcome as a family caregiver of a person living with dementia.
These three factors are a part of life when you are a family caregiver.
And so what we're going to look at today is how, when we are not prepared for caregiving, when we are not prepared for dementia care in specific, how they flow one from the other logically because we're not prepared.
The first one we're going to look at today is fear.

[3:37] So when we are diagnosed or when we find out that somebody we love has cognitive loss or dementia, immediately most people experience fear.
And that is a normal, reasonable response to the unknown.
And we fear things like the future because we don't know what to expect.
We fear the unknown because things are changing sometimes on a day-to-day basis.
We may fear the disease process itself because we don't understand it.
We may fear making mistakes in this journey because we don't have enough information.
It makes you maybe sometimes face your own mortality, that we all of a sudden are facing the mortality of the person that we love and take care of.
But God does not leave us alone in fear, does he?
He talks to us in Deuteronomy 31 verse 6, where he speaks to us about being strong and courageous.

[4:59] Do not be afraid or be in dread of them.
Now, this was when they were conquering the land, right?
But the rest of the verse talks about, for the Lord your God is the one who is going with you, and he will not desert or abandon you.
So, even though this be strong and courageous was was for Joshua to conquer the chosen land, it is still relevant to us as family caregivers of a person living with dementia to be strong and courageous, to not be afraid, to not be afraid of the future, to not be afraid of the unknown.
And why? Why should we not be afraid? Because the the Lord your God is with you.

[5:50] He is going with you, and he will not abandon us, and he will not abandon you, even though you may be facing a dementia caregiving journey.
So even though fear is a reasonable response, it is not a place for us to stay.
It is a place for us to acknowledge acknowledge your feelings are valid.
They are valid to feel what you feel, but it doesn't mean that we stay there.
So today I'm going to give you three practical action steps to take related to fear.
First one is educate, educate, educate.

[6:36] People living who are family caregivers of a.

spouse a family caregiver

Practical Steps to Overcome Fear in Caregiving

[6:45] Or the effort to actually educate themselves about what it means, what the process entails.
And because of that, it continues to cultivate this fear that we have of the unknown.
So how can you educate yourself?
Firstly, you can continue to listen to this podcast, listen to other reliable podcasts, watch some YouTube videos, get some books.
All of those are valid ways and good ways to educate yourself.
However, they are the longer journey because you don't have somebody who can help you curate that information into a more specific, personalized way for you, but education is absolutely vitally important.

[7:41] The second practical way that you can take a practical step for you to take related to conquering your fear, becoming strong and courageous is by planning ahead.
Many of us do not like to plan ahead for a dementia caregiving journey.
People feel overwhelmed and confused about what is coming.
It feels to people like it's this insurmountable mountain that they don't know what to expect, that everything is so unpredictable and difficult to navigate.
The reality of the matter is there are really only four different plans that you can follow when you are a family caregiver of a person living with dementia.
One of my previous episodes, we talk about how to plan for dementia and dementia caregiving.

[8:39] I will see if I can find it real quick. It is episode 95.
If you want to go listen to that, do you need to plan ahead head when dementia caregiving?
And the absolute short answer is yes. But planning ahead should not be scary.
There are ways that we can work together. I can help you plan ahead.
Like I said, there are only four plans that you truly can do.
And then the third practical step is joining a a community of people who are journeying through this process with you.
I have three levels of places that you can join for community.
The first one is a free Facebook group, which the link is in the show notes below.
So if you want a free way and a reliable way to get some education and some support, join my Facebook group. It is absolutely free.
You can talk to me in there, but the reality is it is a free Facebook group.
There's a lot of community in there, but the level of commitment and the level of support is limited because it is a free Facebook community.
The second community that I offer, and this is brand spanking new, is my low-cost membership.

[10:08] So I have two programs. I have a low-cost membership.
You can join for one month. You can join for the life of the person you are supporting.
It is $10 a month. I cannot make it any less expensive than $10 a month.
But that is a membership.
People can come and go as they they want. It has a Facebook feel, but it isn't on Facebook.
We have education in there. I do monthly coaching calls in there.
I bring guest speakers in there. It is a way for you to get a little bit more support, a little bit more individualized support.

[10:45] But it is not at the same level as the next level, which is my low-cost group coaching program, where I build out more education, where we have live workshops together, where we have multiple different opportunities and times of week where you can hop on a coaching call, get your questions answered individually.

[11:10] It is a great community. We are just growing it now.
Now, the people in there are awesome, and everybody who has been in the community tells me how much they get from the coaching, the ability to have more specific coaching in this community.
So that's the second way, but this is a commitment. It is a year-long commitment.
It is not a monthly commitment, and the reason I do it that way is because the research actually these shows, for family caregivers of somebody living with dementia, you need the support over an extended period of time, kind of like a marathon, not a sprint.
So the membership is more like a sprint. You can come and go as you want to.
The low-cost group coaching is a marathon because this is where the real hard work in learning the skills for dementia caregiving occur.
So those are three ways, a free Facebook group, a low-cost membership, and then a low-cost group coaching program.
So the first one was fear. Now we're going to look at the second one, fatigue.

Ask the Dementia Coach Segment Announcement

[12:27] I am very excited to announce this next part of our journey together.
Once a month, On a Thursday evening, I'm going to do a segment called Ask the Dementia Coach, where you can actually come into a coaching session with me and.

Importance of Seeking Support and Caregiver Well-being

[12:51] Music.

[13:04] Know so many of you guys are struggling on your own and may feel like you're at the end of your book.
And in order to help serve you better, I wanted to open up this opportunity once a month for you to register for a free Ask the Dementia Coach segment.

Understanding the Analogy of the Frog

[13:25] Like I said, it will be Thursday evenings, once a month, six o'clock Eastern time in the evening.
And the segment is called Ask the Dementia Coach.
So if you're interested in signing up for that, the link will be in the show notes below.
And I look forward to seeing you on one of these special sessions.
Most of us have have heard the analogy of the frog. So what is the analogy of the frog?

[14:01] Well, if you put a frog into boiling water, what does the frog do?
The frog will jump out. It can feel the heat, it can feel it's hot, and it won't stay in the water. It'll jump out.
The other analogy is if you put a frog into cold water and you start to turn up the heat, slowly, little bit, little bit, little bit more over time until the water boils, the frog will not jump out of the water.

[14:38] It is a terrible analogy, but it is absolutely a practical analogy related to dementia and dementia caregiving.
Because when somebody is first diagnosed with dementia, the changes are slow, unless you find out in the middle of a crisis, which sometimes happens.

[15:07] I like you are the frog being put into cold water.
We are adaptable. God has created us to be adaptable, which means that we continue to adapt to changes.
We adapt to changes. We adapt to changes.
And as things occur through a dementia caregiving journey, we don't notice that we are adapting and adapting and adapting and adapting until we burn out.
And what happens, because this is a marathon, it creates over an extended period of time a lot of fatigue to most family caregivers because, unfortunately, if the person that you are helping and you are supporting lives long enough, they will, if they have a dementia diagnosis, they will need 24-hour care.
They will need 24-hour supervision.
That is unfortunately the nature of this process.
But then we don't think about that and we don't talk about that. And a family caregiver.

[16:17] Will continue to adapt and adapt and adapt until they know more can, until they then turn into the boiled frog, for lack of a better analogy.
Because what happens over time, practically, people don't sleep.
People lose the ability to be able to commit to themselves for their spiritual well-being or to exercise.

[16:48] They either just stop doing it because they feel like they don't have time.
They don't commit to keeping their own health and well-being in the forefront of their mind as they are going through this journey.
They don't take the time to continue to reflect and to pray and to recharge.
They don't build in respite times.
They don't ask for help. But God commands us every single week to rest.
That is what our Sabbath day rest is, right?
We have a holy Father. We have a holy triune God that knows that we need rest.
The Sabbath day rest is not for God. God doesn't need any rest.
He created that day in creation.
On the seventh day, he rested. And the Sabbath day is our day of rest because God knows that we, dear brother and sister, need rest.
And so we have this built-in rhythm into our life of a day of rest.

[18:00] But what happens to caregivers? Caregivers don't build in rest.
They do not build in respite for themselves.
And we don't take the time to put these structures and these things in place to allow us to actually have rest.
So what do we need to do? What are three action items that you can do today to help you with this?
Because fatigue is a real thing when you are a caregiver.
I am not, you know, sweeping this under the carpet.
It is for sure a real thing that we have to contend with.
But what do we need to do? If you are a family caregiver of somebody living with dementia, you need to build in rest early and often.

[18:55] We only tend to start to build in rest and respite when a person gets to burnout phase.
That's too late. It needs to be built in way earlier on, way sooner, way more structured into the fabric of your caregiving journey.
So immediately, when you start to help somebody living with dementia, it is imperative that you start to build in these periods of rest.
The second action item for today is ask for help.
Dementia caregivers do not ask for help.

[19:41] Most people who are family caregivers of a person living with dementia suffer in silence.
It's not that the person living with dementia is suffering, but the person who is the family caregiver is not asking for help.
But you cannot just say, I need help. You need to be specific.
The young man from church who helps me mow my lawn, his name is Peter.
You would have to say, hey, Peter, I need you to come mow my lawn every other week for the rest of the spring.
Or Susie from church, I need you to help get me on the meals train for three months, twice a week so I can catch my breath.
Whatever it is that you need help with, I need a person to be able to come sit with my mom or my husband every Sunday for the month so that I can go to church or on the Lord's Supper, whatever it is.
Ask for help, but be specific. Don't, it is an unreasonable expectation of families or people who are caregivers to expect people to recognize what it is that you need.
You need to be specific and say, I need help doing my laundry.

[21:08] I need help with sitting with him so I can go to the gym every single day.
Whatever it is, you need to ask for help and you need to be specific.
Now, I recognize that that is very difficult for us.
I know that. I know I hate asking for help, but it is imperative that we do this because we need to create create time and space for us to be able to recuperate and regenerate and take care of ourselves.
The third action item for today is talk to your church leadership immediately, immediately.
When you have somebody that you love who is diagnosed with dementia, tell the church, tell the leadership immediately.

[21:58] There is such a stigma in cognitive loss that people do not ask for help.
I plead with you, if you are helping somebody living with dementia, tell your elders, tell your deacon, tell people in church, do not keep it a secret.
Even though the person you help may not want other people to know, you are going to need help.
So telling people earlier on means people can be prepared and start to help you earlier on so that you can build in the systems and the structure and assistance that you need.

[22:42] So that's the second one. The first one was fear.
The second one is fatigue. And the last one we're going to talk about is frustration.

Workshop Invitation for Managing Challenging Behaviors

[22:52] Did you know that caring for a person with dementia doesn't have to be this hard?

[23:00] If you are struggling and you would like to join our next free workshop, the topic of the workshop is three tips how to avoid challenging dementia behaviors, without stress, anxiety, or burnout.
I invite you to walk away with science-backed dementia caregiving skills that many professionals don't even know after attending this free workshop.
If you'd like to register, message me the word, workshop on Instagram, or check out the link in the show notes below.
So frustration is a real thing. Dementia caregiving can be frustrating.
Caregiving can be frustrating. But I hate to point it to you guys.
Life can be frustrating.
It is definitely a frustrating thing sometimes sometimes to be alive.
You know, and why is it frustrating?
Well, because I don't know about you, but for me, I'm the most important thing in my life.
And when things don't go my way, the way I want it, Lisette's way, it gets frustrating, right?

[24:22] Most of us are in it for ourselves, right? This is the reality.
Even though we are redeemed of God, we still have a remnant of in us.
And for me, it's all about me. For you, it's all about you, right?
So frustration, though, as a family caregiver of a person living with dementia, it's a real thing.
We do experience frustration because there are changes in our relationships, whether it's the relationship with the person who has dementia, whether it impacts your relationship if you are the daughter of somebody living with dementia.
It impacts your relationship with your spouse. It impacts your relationship with your children.
It changes people's relationships.
It is frustrating because it changes people's ability to communicate.
So the way you've always communicated with this person living with dementia has changed.
You cannot communicate with them the way you always used to communicate with them.
So that can be extremely frustrating because I now have to change the way I communicate with the person.

[25:35] Because they cannot change anymore. It is frustrating because it changes our expectations.

[25:43] Frustration often, in my experience, occurs when there is a gap, when there is a gap between the reality and the expectation.

[25:53] So what does that look like? Well, the reality is the person living with dementia functions at a certain ability level that is going to be changing ongoing.
And so I want you to see that kind of like the baseline, like the middle line on a piece of paper.
So imagine a piece of paper where there are three lines.
So the middle line is the reality of where the person living with dementia, what their abilities are, what they are able to do.
Now, where frustration comes in is in two gaps.
The gap between the middle line and the top line is when the top line is the caregiver is expecting the person living with dementia to still be able to do things the way they always have.
So it kind of looks like, but mom always did this, or she used to be able to do that.
And I don't understand why she's not doing that anymore, where the reality is the person is functioning on the middle nine, and the family is expecting them to be functioning on a higher ability level than what they're able to.

[27:14] And so there's frustration in that gap.
Well, the other direction is now the line on the bottom. So the three lines, right?
The middle line is where the person living with dementia is actually functioning.
And the bottom line is where the family now feel this person, what their abilities are, but they have ascribed less ability to the person living with dementia than what they're actually able to do.
And the person living with dementia becomes frustrated.
And so because they're frustrated, your communication is impacted, your relationship is impacted, and then there's frustration in that gap.
So the two gaps are where frustration lives, gaps in expectation.
But Galatians 6 verse 9 speaks about, let us not become discouraged in doing good, for in due time we will reap if we do not become weary.

[28:18] So let's do good to all people, but especially those who are in the the household of faith.
So as believers, we want to continue to not become weary and to do good to and with and for the person that we are caring with.
So I want to encourage you today not to get I know it can be wearisome, and that is why I'm doing this episode today on frustration, fear, and fatigue. And.

[28:58] Like I said, frustration happens when expectations are not being met.
A second way frustration happens is when we struggle with the practical skills of caregiving.
Things like struggling to give somebody a shower or struggling to get them to eat or struggling to get them to change their clothes or struggling to get them to not walk out of the house the whole entire time.
And then then frustration also comes in when we struggle with the day-to-day responsibilities that still are ours as family caregivers.
Food, shelter, clothing, paying the bills, going grocery shopping, getting food on the table, meal preparation.
I have chickens, taking care of the chickens, taking people to the doctor, taking care of your own doctor's appointments.
All these things can can cause frustration.
So frustration can happen when expectations are not being met, when we're struggling with the practical skills of caregiving, and if we struggle with day-to-day responsibilities.

[30:08] So what are some action items that you can do for frustration?
Well, the first one is manage your expectations.
Because if you have unrealistic expectations related to where the person is functioning, or if you have unrealistic expectations as to people should just spontaneously volunteer to help you, or whatever those expectations are, we have to manage our expectations in order for us to not be frustrated.
The second thing is we have to start to accept the inevitable changes that are going to come with the dementia caregiving journey.
And the way we do that is through education, education, education, education, understanding what is coming next, anticipating these changes are going to come.

[31:06] If the person living with dementia lives long enough.
The third thing that you can do is prepare ahead. I talk about preparing ahead a lot.

[31:16] It's because most people do what I call the ostrich maneuver.
They stick their head in the sand and hope it goes away. Well, the reality is it's not going to go away.
And so we need to plan ahead.
And we talk about that a lot. And the fourth one, we've talked about that in

Recap on Overcoming Fear, Frustration, and Fatigue

[31:32] a couple of these other points today, is actually asking for help.
So to recap today's episode of Overcoming Fear, Frustration, and Fatigue, A Christian's Perspective on Dementia Caregiving, we talked about fear.
I gave you three practical steps of education, planning ahead and joining a community.
We talked about fatigue, where I use the terrible analogy of a frog in hot water.
But we talked about the action items for fatigue being building in rest early and often, asking for help and being specific and talking to your church leadership leadership immediately when you get a diagnosis.

[32:23] And then the third one we talked about was frustration, and frustration is a real thing.
And we talked about three action, actually four action items here.
The first one is managing our expectations.
The second one is accepting and anticipating inevitable changes.
And the third one is planning ahead or preparing. And the fourth one is asking for help. So some of these kind of overlap.

[32:54] So today, dear brother and sister in Christ, if you are struggling, please join my next free workshop. I do a monthly workshop.
So that's one way you can connect with me. A second way you can connect with me is I have a new segment.
The first one will be April the 25th at 6 p.m. Eastern Time, and it is Ask the Dementia Coach.
The link is in the show notes. I'm opening up an hour a month to hop into a Zoom room to talk to people who are struggling with something in this particular journey to help you through.

[33:38] Then into the next step and to help you so that we can decrease your fear, your frustration, and your fatigue.
So the next session of that or the first session of that is going to be next Thursday, April the 25th.
The link is in the show notes. You do need to register.
The reason for that is so that you can actually get the Zoom link.
So please join me on that. It's a brand brand spanking new segment that I'm doing once a month.
It'll be the last Thursday, I think, of the month.
I'll still kind of see related to that, but I'll let you guys know when it is.
So there are two free ways for you to connect with me immediately.
You can come to one of my free workshops. Every month I do a free workshop.
The next one, I believe, is also going to be the 22nd of April, and that will be at a 6 p.m. time. It's about two hours.
And then the second opportunity next week is the first Ask the Dementia Coach segment.
So I hope you guys join me. I love to serve.
Please come talk to me. I don't know what you need if you don't let me know what you need.
But yet again, thank you for listening to today's episode of Dementia Caregiving for families.
And may the Lord bless you and keep you and understand he has not abandoned us in this process.

[35:05] He is God. He is sovereign. And this is his good pleasure and will for our lives.
So let him bless us and keep us.
And I will see you in the next episode.
Thanks for joining me today, Success Seeker. I pour my heart and soul into this program to serve you.
You can serve me by leaving a review on Apple Podcasts and join our free Facebook group, Dementia Caregiving for Families.
It's a positive and proactive space to navigate dementia caregiving together.
Get practical tools and find support, but without the verbal vomit.
Be a part of our community where we seek to find peace of mind and ease despite the dementia diagnosis.
So join today and see you next time as our flight takes off.

Subscribe To Dementia Caregiving For Families Podcast

If you feel like dementia caregiving is hard and unpredictable and you are struggling to help a spouse or a parent living with dementia, join our next free workshop.
 https://www.dementiacaregivingmadeeasy.com/wsl

Join our Facebook Group at: https://www.facebook.com/groups/1301886810018410 

Become a  Member of Our Exclusive Program!  https://www.dementiacaregivingmadeeasy.com/start

Subscribe To Our Newsletter

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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