Beyond Overwhelm: A New Path in Dementia Care

In this episode of Dementia Caregiving for Families, I open up about my unexpected journey into caregiving for my dad. As a therapist, I never anticipated being thrown into this role, and the news of my dad being hospitalized was devastating.

The thought of placing him in a nursing home was something I couldn't bear, knowing the emotional toll it takes on both the caregiver and the person being cared for.

Despite knowing it would only be temporary, I couldn't bring myself to do it. This sudden caregiving responsibility was thrust upon me due to my mom's health issues in the past. I found myself overwhelmed and exhausted as it disrupted my own life and responsibilities.

Unfortunately, my dad's health deteriorated rapidly, and I had to fight with healthcare professionals to ensure he received the necessary care. In the end, he ended up back in the hospital, even sicker than before.

In this episode:

0:01:02 Unexpected Phone Call Changes Everything

0:02:03 The Fear of Nursing Homes and Caregiving Responsibilities

0:05:12 Crisis Mode: Dad Readmitted to the Hospital

0:13:09 Choosing to be a caregiver and making a plan

0:14:03 Enforcing the plan and being in control

0:15:12 Overcoming overwhelm and becoming an empowered caregiver

0:16:21 Transitioning from reactive to proactive caregiving

0:19:17 Identifying whether you are an overwhelmed or empowered caregiver

0:20:55 A Heartfelt Invitation to Join Our Supportive Community

It became evident that a significant crisis was unfolding. My parents could no longer be left alone, so my husband and I made the decision to move them in with us temporarily.

However, this period was incredibly challenging and overwhelming for me. Juggling work, taking care of my parents, and facing numerous obstacles took its toll.

It was a devastating time, but it brought about a realization - I had a choice in how I approached caregiving. I made the decision to become a proactive caregiver, and it transformed my life overnight. I discovered that there are two types of caregivers: those who are drowning and overwhelmed, and those who are successful and manage to come out relatively unscathed.

The power to be a proactive caregiver lies within me, not my parents. The successful caregivers I've encountered intentionally took on the role and created a caregiving plan. They had a sense of control and were able to navigate the challenges.

Now, I want to know where our listeners are in their caregiving journey. Are they still overwhelmed and reacting to every situation, or have they become empowered and proactive?

If they're still struggling, I'm here to offer support and guidance to help them transition into becoming proactive caregivers.

We need to shift our mindset about dementia caregiving and put practical strategies in place to assist caregivers. It's important to remember that caregiving isn't a sprint, but a marathon, and preparation plays a crucial role.

In today's episode, we delve into the significance of planning ahead in the caregiving journey. Just like embarking on a vacation, one wouldn't set off on an epic trip without preparing.

The same applies to caregiving. Dementia caregiving is a long and challenging journey that requires proactive planning to prevent burnout. The first step towards becoming an empowered caregiver is actively deciding to assume the role.

We encourage our listeners to join our community, subscribe to the podcast, and share it with other family caregivers. Together, we can navigate the complexities of dementia caregiving and find peace of mind and ease.

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Transcript

Welcome to Dementia Caregiving for Families

[0:04] 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.

[0:55] Music.

Unexpected Phone Call Changes Everything

[1:02] Well welcome to today's program. This is Dementia Caregiving for Families.

[1:11] I will never forget the day I was sitting at my desk in Greenwood, South Carolina.

It was the tail end of COVID and I was still not feeling really well.

I had just recently had my first bout of COVID after working in healthcare for almost two years in the COVID pandemic, but I was sitting there at my desk getting ready to go to work.

The sun was streaming in through the windows, and my phone rang.

And I looked at the phone, and I saw the exchange on the phone, and my heart sank.

And the reason my heart sank was because, I don't know if you guys are in your part of the world, sometimes you have a phone exchange that you can tell it's coming from a specific place, right?

The Fear of Nursing Homes and Caregiving Responsibilities

[2:03] So this particular phone exchange, I recognized as being the hospital.

Now why was that important?

Because my dad was in the hospital.

My dad had been admitted to the hospital because of, COVID and then some other medical stuff going on And I wasn't ready But I'm sitting at my desk getting ready to go to work and I see this phone, The phone number and I realize my life is about to change you see I wasn't ready to be a caregiver and I knew I was not going to be getting news that I wanted to hear because I knew just from speaking to my dad that he was not doing well.

[2:48] So I pick up the phone and it's the social worker and the social worker says to me, the therapy, the therapy, which I'm a therapist, the therapy department says your dad needs to go to a nursing home he can't come home.

And I said to her, nope, not my dad.

I'm like, we will make another plane. We will figure it out.

Because I had been in boarding school.

[3:14] In South Africa in the early 80s.

And when moving to the United States in 1993, somewhere in my little head, boarding school and nursing home went like this.

You see, I had seen people in nursing homes who were experiencing a lot of the same emotions, a lot of the same feelings of being abandoned, of being left behind, of not understanding why they couldn't go home, all of this stuff that I carry as baggage.

And I'm like, I just cannot do that. I cannot put my dad in a nursing home, even though somewhere in my brain, because I've been doing this for 30 years, I realized it was only going to be a temporary thing.

But I just couldn't do it to him. Plus, we had been thrown into a caregiving role, which none of us were ready for.

I have a mom who had been in her early 40s when she had a massive, massive aneurysm.

And part of the reason my parents emigrated to the United States was because my dad recognized that my mom would need some help in the future, and he knew that both my sister and I had immigrated to the United States, and there was nobody to help mom in South Africa.

[4:38] So even though I knew, like knew, that my mom and dad probably would need help in the future, I wasn't ready for it.

I was very happy in my job, starting a business, doing my podcast, having all of the stuff.

In my own life, right? My kids are grown and flown, working full -time, exercising, trying to be a wife, going to church.

My life, right? My life. I wanted my life.

And all of a sudden, I got thrown into being a caregiver.

Crisis Mode: Dad Readmitted to the Hospital

[5:12] And it wasn't fun. It was overwhelming. It was extremely exhausting.

[5:20] So at first, he came home, and then 30 days later, boomeranged back into the hospital.

[5:29] And I remember thinking, this was a hard time because my husband was actually on his way to Sioux Falls to go preach for a month.

[5:43] When my dad was readmitted to the hospital.

And I had to fight. I had to fight not only the cardiologist, but his primary care physician to try to get my dad help in order for him to be readmitted to the hospital because I could see him tanking.

And I'm like, something is going on and you people being healthcare, you are not hearing me.

I'm like, I convinced, the day before he was readmitted to the hospital, I convinced the cardiologist to do some lab work, and the lab work came back, and he had a raging infection.

His white blood cell count was off the charts.

I could see it on my chart, right?

And thinking back on it, the cardiologist's office never called me back.

They never followed up on the fact that they had run these labs and that my dad had an obvious, obvious, massive infection to tell me to do something about it.

It was only because I knew and because I was following through that I called his primary care physician, who's like, well, we didn't run those labs.

Why do we need to do anything? We didn't order those labs. And I'm like, he, you need to tell me what to do.

[7:07] Because I can tell something's going on. Tell me what you want me to do.

Do you want me to bring him in to see you?

Do you want me to take him to the emergency room? You tell me, you're the doctor.

You tell me what to do. And they didn't. So finally I get them to call me back.

And they tell us, don't, You know let's play monopoly right don't pass go don't collect two hundred just go straight to the yard so my husband gets in the car my husband takes my my dad to the emergency room and then drives.

Leave the car takes an uber gets on an airplane on his way to sioux falls and i'm an hour away.

[7:49] So, I finish work because my dad's in the hospital, I can't do anything anyway, and then I get in the car and I hightail it up to go take care of mom.

Because now I have to go stay with my mom because my dad's in the hospital, I don't know what's going on. So, he ends up back in the hospital.

Well, the second go around, he was so much sicker than he'd been the first time.

[8:11] That I knew that we had a massive crisis on our hands.

And I realized that we had been taking care of them in their home, and now they weren't going to be able to be home alone.

So what ended up happening is my husband and I put our lives on hold, and we moved my parents in with us for two months, got them back on their feet, and then moved them back home.

But what happened in that period, and this is the challenge that I was facing, was I was resentful. I'm like, this is my life.

I'm 52 years old. I should not be a primary caregiver.

I was so stressed and overwhelmed. I was dealing with the day -to -day challenges of being a caregiver.

Trying to work, trying to juggle, going to work, trying to make sure we all got food on the table, taking care of my mom, taking care of my dad, helping my dad take a shower, or doing the laundry every single day because we were dealing with some issues that we hadn't had before, like changing the sheets every single day.

Dealing with the home health nursing and the home health physical therapy, which was the company I worked for, the hospital that I worked for, and I'm extremely grateful.

[9:31] They did a super, super job. But I didn't realize how hard it is when you're on the other side. and it was devastating.

But what was the biggest, most eye -opening experience for me was that it literally changed overnight, not only from going bad to feeling overwhelmed and being in that constant state of putting out fires and crisis to crisis to, I don't want to live like this.

I don't want to live like this anymore.

I have to figure this out. There has to be a better way.

And making a decision, just making a active decision to become a caregiver.

[10:26] Resulted in overnight my life not being overwhelming anymore and that was eye -opening to me because, too many of us believe and I used to be the same way too many of us believe that, we have no choice in being a caregiver and we do have a choice and caregiving is an active choice there are only two types of caregivers out there.

And when I mean there are two types of caregivers, I'm not talking about the different stages that a person goes through when they're a caregiver, and we will do a different episode on that on another day, but what I mean by there are only two types of caregivers, there are two types of caregivers, the successful caregiver and the person who is drowning, the person who is overwhelmed, the person who cannot cope any further, the person who is losing their own life and their health in the process.

And then the flip side of that is there are people who are successful caregivers, there are people who come through a caregiving journey mostly unscathed, mostly intact.

[11:45] Is it always going to have challenges, sure. But there are only two sides of this coin. There are only two ways you can be.

And what I realized was that the power lay with me. The power lay with me and not my parents.

The power to be a proactive caregiver was mine.

The decision to not be overwhelmed and freaked out and stressed and drowning lay with me and that made such a difference because.

[12:27] Almost immediately overnight i went from overwhelmed to i got this i went from overwhelmed and drowning to.

How do i fix this problem what are the active steps that i need to take and it was so empowering to put myself in that position and then i started to think about all of the people over the thirty years i've been doing this.

That I have worked with that were successful caregivers, and every single one of them had these two characteristics in common.

Choosing to be a caregiver and making a plan

[13:09] The first characteristic that they had in common was they actively chose to be a caregiver.

When they were faced with the situation, they made a conscious decision to assume the role of a caregiver, every single one of them.

And the second thing that every single one of the caregivers that were successful had in common was they stopped and they made a plan.

They knew where they were going. they knew what their best outcome was for their process.

They didn't just do the next thing or the next thing or the next thing at whatever was being thrown on them.

Enforcing the plan and being in control

[14:03] They stopped and said, okay I am the caregiver, these are all of the different, Components my preferences my parents preferences are financial constraints the location we live the steps the house everything they looked at and made made a decision in the made a plan and then they started to actually.

[14:29] Enforce the plane that the plan maybe change sometimes because of things that have occurred that they had no control over. probably.

[14:40] Did mine change 10 times before I got to where I am now? Absolutely, but I was in control.

I made the decision. My husband and I sat down and we had a discussion.

We talked about what we are and what we are not willing to do in this process.

[14:58] And then according to that, we made the decisions that were best for us, considering what was best for my parents.

And that put me in a position of power that put me in a position of control.

Overcoming overwhelm and becoming an empowered caregiver

[15:12] And that has taken all of the resentment away. That has taken all of the sense of overwhelm away.

That has taken all of the daily struggles that I was experiencing and the emotions that I had that were attached, all the negative emotions that I had that were attached to becoming a family caregiver.

So I have an ask for you today. I want to ask you, where are you in this journey?

Which one of these two caregivers are you? Are you still the reactive caregiver that I'm living in the land of overwhelm?

I don't know what to do next.

I feel like my whole life is falling apart.

I'm in the midst of the crisis.

I need help, but I don't know where to find help because healthcare is not helping.

Or am I the more empowered caregiver?

I have made an active choice to be a caregiver.

[16:10] I might not have...

[16:12] The entire plan figured out yet, but I feel like I'm in control.

Which one of these two caregivers are you?

Transitioning from reactive to proactive caregiving

[16:21] And if you are in the land of the overwhelmed, if you are in the I'm not sure what to do, I'm feeling like I cannot do this in the long run, what can we do to help you? What can I do to support you?

How can we get you to the next step of being the proactive caregiver and taking a step back away from the situation and putting the pieces in place to support you and undergird you in this journey that you're on because it is a marathon, guys. It's not a sprint, it's a marathon.

So we have to prepare. We have to be proactive. We have to make a decision.

We need to change how we are thinking about dementia and dementia caregiving.

And we need to put strategies in place to be able to help you.

You can never take a, I want you to think about this as an analogy, right?

[17:27] Any of you guys ever immigrate from one country to another or take a vacation, right? that's probably a more common illustration, right?

You would not take a vacation, or you wouldn't necessarily have a great vacation if you did this.

You wouldn't take a vacation to go overseas or to go to the Grand Canyon or to do something really epic, like an epic trip, without planning ahead.

You wouldn't just hop in the car and go, now sometimes we have, like my husband and I have, and they can be great trips too, but in the case of what we're discussing today, in the process of a caregiving journey, you would not take a long trip, an epic trip overseas, without having your passport, without having the airplane tickets bought, without knowing where you're going to be staying on the other side, right?

A hotel, without having your app on the phone to do your translation.

You would prepare for your epic trip, right? we don't take a vacation without preparing.

[18:42] Dementia is a epic trip.

It is a long journey that we're on with somebody that we love and want to help, and we want to do this without burning out ourselves.

How do we do that? We plan. We plan ahead. We make a decision just like you decide to go on vacation.

You make a decision that you're going to be a caregiver and then we plan it ahead. So the biggest takeaways for you guys today is which one of these two caregivers are you? Are you the overwhelmed caregiver?

Identifying whether you are an overwhelmed or empowered caregiver

[19:17] Are you the empowered caregiver? The caregiver that's proactive?

Or the caregiver that's reactive?

And how do we get you to be more proactive if you're still struggling with being in the reactive mode?

How do we do that? The very first step that you have to take in order to become.

[19:43] An empowered caregiver and not an overwhelmed caregiver is an active decision from you to assume the role of a caregiver.

So I ask you if you have enjoyed this program today, I want you to subscribe to this program, I want you to share it with your friends and families, specifically your family caregivers, because dementia caregiving is not just, you cannot be a successful dementia caregiver if you're only one or two people.

You need to have a lot of people helping you through this process.

And we'll talk about that in the journey as we come.

So I want you to subscribe to this podcast.

I invite you to join me on my free Facebook group called Dementia Caregiving for Families and share this podcast with other people that you enjoy.

The two takeaways are make an active decision to be a caregiver and to start to plan ahead.

And so thank you for joining me today.

A Heartfelt Invitation to Join Our Supportive Community

[20:55] 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 leaves.

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”