Are you searching for fresh and effective ways how to find support and respite while caring for a loved one with dementia?

 In this episode, we unveil four innovative strategies to help caregivers navigate their journey with confidence and compassion. We dive into these approaches, offering a lifeline to those seeking relief and support.

4 Ways How to Find Support and Respite While Caring for a Loved One with Dementia

0:01:22 Finding Support and Respite on the Dementia Journey
0:07:15 Utilizing Your Natural Support System
0:12:05 Navigating Financial Support Systems
0:12:10 Embracing Professional Support Networks
0:13:23 Engaging with Community-Level Supports
0:19:24 Understanding Respite Care Options
0:21:02 Joining a Community of Extraordinary Caregivers

Embracing the Support System Around You

The journey of dementia caregiving often feels solitary, but it's surrounded by a community eager to lend a hand. Recognizing and utilizing natural supports within your environment can transform the caregiving experience. Family, friends, and even church members can offer practical help, from meal preparation to lawn care. The challenge lies in asking for assistance. By preparing a list of needs, caregivers can easily share how others can provide meaningful support.

Financial Supports: Navigating Resources

Understanding and accessing financial supports can alleviate many stresses associated with dementia care. From insurance coverage and disability policies to estate planning and Medicaid, exploring financial options early in the journey is crucial. These resources can provide the foundation for comprehensive care and ensure the caregiver and the loved one are protected and supported financially.

Professional and Community Supports: Building Your Team

Professional supports, including healthcare providers and therapists, play a pivotal role in dementia care. These experts offer invaluable guidance and assistance tailored to the unique challenges of dementia. Additionally, community support extend beyond geographical boundaries, offering connections through support groups, online communities, and local services. Engaging with these resources can bring new insights, encouragement, and practical help to the caregiving journey.

Crafting Your Respite Plan

Respite care is essential for caregiver well-being, yet it often goes underutilized. Informal respite, from arranging a friend to spend time with your loved one to utilizing volunteer services, offers opportunities for caregivers to recharge. Formal respite services also provide professional care, allowing caregivers to take breaks with peace of mind. Proactively integrating respite into the care plan can significantly impact the caregiver's quality of life and their ability to provide compassionate care.

Joining Forces with Fellow Caregivers

Finding a community of fellow caregivers can offer a sense of belonging, shared experiences, and mutual support. Whether through online forums, local support groups, or workshops, connecting with others who understand the dementia journey can offer comfort and practical advice. Remember, you're not navigating this path alone; a community of extraordinary caregivers is ready to walk with you.

Taking the Next Step

As we navigate the complexities of dementia care, remember that support, respite, and community are within reach. By exploring these four areas, caregivers can find new ways to manage their responsibilities while maintaining their well-being. Let's continue to support each other, sharing our experiences and resources to uplift the entire dementia caregiving community.

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One Mistake A Dementia Caregiver Makes By Not Traveling With Kathy Smith Shoaf

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Introduction to Dementia Caregiving

[0:01] In today's episode, we talk about caring for a loved one with dementia, how to find support and respite, and I'm going to give you four, four unusual ways to consider respite and support and what they look like, and I want you to go listen to today's episode so that you can find out what these four unique ideas are.

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 Lizette, 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 you will find value in today's program.

So buckle up while this flight takes off.

Finding Support and Respite on the Dementia Journey

[1:22] Today's episode is about how to find support and respite when you're caring for a loved one with dementia.

[1:33] Many of you might have heard me talk about the analogy of an airplane and an airplane flight in conjunction with a dementia and a dementia caregiving journey.

This is a a concept I've come up to explain to people the entire process of a dementia caregiving journey to make it simple for people to understand.

And the basic premise behind it is that anything related to dementia can actually be put into a different part of the airplane or the flight.

And as a family caregiver to somebody living with dementia, in essence, what has happened or what will happen over time is that you will become the co-pilot, will become the pilot of the person living with dementia's flight.

And part of what we're going to talk about today as the co-pilot, as the family caregiver who is currently the co-pilot helping somebody living living with dementia, navigate this process, how can we help them find support and respite?

Or how can we help find support and respite for ourselves?

Now, in the analogy of my airplane and my airplane flight, where this falls is in the cabin. So on an airplane.

[3:03] In an airplane, we have different parts of the flight, right? Most of us have flown.

Most of us know there's the cabin, and then there's the cockpit, and then you have the baggage compartment, which is where the cargo lives, which is where I put all of the baggage of the dementia journey, what it is, things like the challenging behaviors and things, the baggage, some of the stuff that comes along with dementia and dementia caregiving goes in in the cargo hold.

But what is in the cabin? The cabin is where the passengers sit.

The cabin is where everybody who is along your journey is along for the ride.

They are in the cabin.

[3:49] And there are really, in essence, only four different supports that a person has who is is living with dementia.

Do you guys want to hear what those four supports are?

Did you know that caring for a person with dementia doesn't have to be this hard?

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.

[4:44] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

Here are the four supports and then we're going to, no pun intended, unpack each of them.

The first one is natural supports.

The second one is financial supports. The third third one are professional supports, and the fourth one are community supports.

[5:17] What are natural supports? I want you to consider that we all have a natural support system around us.

Your natural support system are the resources that you have that are in your own space, that are are in your own world.

These can be your family members. These can be friends.

This can be church members. This can be almost anything in your natural environment.

The stuff that can help you put together a support system around you that is in your own environment.

A lot of these supports do have some overlap.

It's not like you couldn't say one is one thing, you couldn't say something isn't something else.

But for the most part, we have a natural support system around us.

The problem is oftentimes we don't want to use them.

We don't want to use our natural support system. We don't want to ask people for help.

People are willing to help you, they just don't know how to.

[6:26] And if you're not squeaky wheel and telling people how to help you and being specific, about how they can help you, when somebody asks you and says, well, let me know what I can do to help you, you don't have a ready answer because you haven't proactively thought about it and said, you know, I tell people generate a list.

Just take a piece of paper and a pen and say, I need three meals a week.

I need somebody to wash the dog.

I need somebody to mow the lawn or it's fall. I need somebody to blow the leaves.

Have a ready list generated and keep it with you.

And when people say to you, what can I do to, you know, let me know what I can do to help, immediately whip it out and say, this is my list of things that you can do to help me.

Utilizing Your Natural Support System

[7:16] Which one of these are you you going to do and then put it on your calendar and do it right now in front of me because that way I know it's going to get done. You have to be proactive.

You have to ask, but ask your natural support system. They are willing to help you.

Guys, church is willing to help you. They just don't know that you need help.

[7:35] People who are living with or helping somebody with dementia are not asking for help.

[7:41] That's one of the biggest things that I've noticed over the 30 years that I've been doing this.

People do not ask for help, whether it's because they don't recognize that they need help or whether it's because society has this huge big stigma against dementia and dementia caregiving and we're trying to protect the person we love because we don't want other people to know that they're having difficulty.

I still haven't figured that out yet. I still haven't come up with a happy be happy in my tummy related to that.

But all I know is that if you are struggling and somebody offers to help you, even if it's just a statement like, let me know if I can help, then you tell them what you need.

You tell them you have a list of what you need help with.

The challenge that we as family caregivers have is we want people to read our mind and we want people to know what it it is that we want or what we need, and we want them to anticipate and meet that need.

And quite frankly, I have realized over time that that is a super unrealistic expectation.

How many of you guys have had that in your own marriage, right?

You want your spouse to know exactly what it is that you need at that particular moment in time instead of saying, hey, honey, I just need you you to listen.

I don't need you to solve, or I really need you to step up and take out the trash because it's driving me nuts, whatever it is. People are not mind readers.

[9:07] People around you who are willing to help you are not a mind reader either.

So go ahead and ask for help. That's the first one, your natural support system.

The second one is a financial support system. Now, everybody's financial support system looks different, and we're not talking about, when I say financial financial support system, I'm not necessarily only talking about how much money you have in the bank, even though that is certainly part of it.

But your financial support system looks like, you know, your access to resources.

If you're in the United States, do you have Medicare? Do you only have Medicaid?

Or do you have commercial insurance?

Or do you have a long-term...

[9:49] Care policy, if you have early onset dementia, do you have a short-term and a long-term disability policy?

All of these financial resources that all are in a different bucket, that financial resources can include things like hospice. It can include things like palliative care.

It includes anything and everything that possibly can help you from a financial perspective.

And And that is, you know, definitely a conversation that you need to be having not only with a financial person, but you also need to have these conversations with somebody like a estate lawyer, an estate planning attorney.

For example, with my mom and dad, when they moved to the United States, they sold everything they had in South Africa.

They moved to the States and what they had is what they had and what they have is what they have forever and ever. Amen. then.

And my dad worked in the US for 10 years.

So he actually qualified for Medicare.

So they both are on Medicare. And I'm extremely grateful for that.

But they do not have, you know, the resources for all of the different types of things that I would have liked to be able to have for them.

But one of the things that we did three years ago, and I wish we had done it earlier, but there's also a component of giving people.

[11:14] Adults are entitled to make stupid decisions, and we needed to wait and see.

I needed to wait and see until my parents were at a point where I really was able to step in and help.

But we went ahead and did Medicaid planning, anticipating that they're protecting their assets, protecting their resources.

But the reality of the matter is there's a five-year look-back period.

So if you wait too late, you've lost your window of opportunity.

And it's definitely something to consider speaking to an attorney with.

And I will still have an attorney on the program talking about estate planning and things that you can do to protect your assets.

And even if you don't have a lot of assets, even if all we're talking about is a house, there is a way to protect your assets from Medicaid, but you've You've got to be proactive about it and actually do it earlier on.

Navigating Financial Support Systems

[12:06] So the second part of this is the financial resources.

Embracing Professional Support Networks

[12:10] The third part of it is the third group of people that are the passengers on your trip with you in the cabin of your lifelight with dementia are professional supports, doctors.

[12:24] Neurologists, dentists, a dentist that specializes in working with people who might have cognitive of loss.

These are your physical therapists and your speech therapists and your occupational therapists and your nurses and all of the professional supports.

That are going to be around you. But you can also include in those professional supports people that can mow your lawn, or people that can help you clean your house, or people that can, you know, get a meal planning service that you can have brought in.

Anybody and everybody that's professionally helping and undergirding you and supporting you, a chaplain, a pastor, all of those types of things, or your team that come around you, your professional people who may have a bigger background or a knowledge base related to dementia and dementia caregiving.

Engaging with Community-Level Supports

[13:23] And then the fourth one are your community-level supports.

What are your community-level supports? supports and by community level support I mean more than just local community even though that is a part of it right things like support groups in your local community it could be things like a dog walker or you know the anything a community a local community it could be as simple as an app app on your phone that gives you community.

It can be more than just your geographic community.

I do have a community. I have two types of communities.

I have a free Facebook community where you will find, where you join a group of extraordinary caregivers who are all navigating dementia in a different way.

Did you know that caring for a person with dementia doesn't have have to be this hard.

If you are struggling and you would like to join our next free workshop, the topic of the workshop.

[14:34] 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.

[14:58] If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

In a proactive active and active, not reactive way in a way that we are trying to maintain the quality of life of the person that we love, the relationships that we have, as well as our own health and well-being through the process as a family caregiver.

So I do have a free Facebook community that you are welcome to join.

The links are in the show notes below. Please join my Facebook community.

Be active in it. I love having people join.

Remember, I do tell people to be cautious about joining free Facebook communities because some Facebook communities are extremely toxic and can actually make your dementia caregiving journey worse.

There are good ones out there. I'm not saying don't join them. I'm just saying be wise.

[16:05] Be vigilant and be aware that if you do join one, that when you start to go through it, all you see is the doom and gloom and woe is me.

Maybe consider leaving that Facebook group or not going and engaging in it because it can make your entire journey be vastly different than it needs to be by just being in there.

But I do also have a paid community.

I do. I have a paid group community. I'm getting ready in the first quarter of this year.

[16:35] To actually start a lower-level membership group for people to actually find community, curated community, curated support.

And the reason it's a paid community is I have realized over time that the only people who truly are taking this information and really actively doing, not everybody, I'm not saying that if you're listening to this podcast that you cannot benefit and that because you haven't paid for this that you won't get benefit from it, But the reality of the matter is that I have noticed over time people have to have a little bit of skin in the game in order for them to actually show up and take part and participate and benefit from both the information that they're getting and the community that we are creating.

I have access to a wonderful app.

It's called Team CarePal, and I'm going to be using that to build my community on because it has some tools in it for caregiver wellness, which is the other part of my mission and my hope is to help caregivers, family caregivers, come through this process, come through navigating a dementia caregiving process with their own health and relationships intact.

So I do have, like I said, the free Facebook community, but I also have a paid community, a group program.

[17:59] That if you direct message me, apply, you are welcome to apply.

I curate this group extremely carefully because I'm protecting both myself and the members inside this group community.

I want you to join, but you have to be the right person to join.

And coming in March will be the membership program that I will be establishing for people who are family caregivers.

I will put all of the family caregivers in this group for one low membership price.

But I do believe that people need to actually have skin in the game in order to benefit from a community like that.

But other places you can receive support are things like local Alzheimer's Association support groups.

You have a little bit more effort. You do have skin in the game there because you got to get get in the car and go.

But those are some ways that you can build community around you.

We are not an island. No man is an island.

The Bible talks about a cord of three is not easily broken.

But when we're alone, it's much harder to stand by ourself.

So you do need to create a community of support around you.

And it is up to us to actually create that for ourselves.

[19:18] It's an unreasonable expectation, in my opinion, to expect people to know what it is that we need.

Understanding Respite Care Options

[19:24] But regarding respite, respite is something that is entirely different.

There are two ways I want you to consider respite. There's formal respite care, which is like a paid service, typically through insurance, and then there's informal respite care.

Informal respite care, you need to put in place immediately on finding out somebody has a diagnosis of dementia.

That might mean Initially, it's only once a month.

It might mean from the beginning you do once a week. I have people that I work with that they will have a paid caregiver for a half a day every week so that they can go and unwind.

And that's respite care. That's structured, informal respite care that they have built in. but it doesn't need to cost anything. It can be a family member.

It can be a friend. It can be a close friend of the person who you're helping with dementia, who is just willing to come sit, watch a movie with them so you can take a bath.

There are lots of ways that you can build in respite for yourself, but it's up to you to actually build it in.

It's up to you to take the active step to do it right from the beginning.

And if you need help with getting some of that that stuff put together, please reach out to me.

I'll be happy to brainstorm with you and to help you come up with, at least point you in the right direction, come up with the initial step of where I think you could get some respite services.

[20:45] Do not forget your church. Do not forget the deacons. Reach out to the deacons in the church.

Do not forget your friends on Facebook.

There are lots of ways you can unwind and create some time for yourself.

We just need to be proactive about it.

Joining a Community of Extraordinary Caregivers

[21:02] If you are ready to actually join a community of like-minded, extraordinary caregivers, I invite you to subscribe to this podcast today.

Day. I love having you here.

Share it with your friends and family and or wherever.

I want you to shoot me a review on Apple Podcasts. It really does make a big difference.

I do read them all. I have a little folder on my computer.

Number one, they make me happy, but number two, it is why I do what I do. I am here to serve you.

I want to serve you in a different way than I have have before.

If you want to join a free Facebook community, join Dementia Caregiving for Families. The link is in the show notes below.

I do have my free workshop coming up on January the 13th.

If you're ready to sign up for a two-hour free workshop where I give you the first three things that I typically teach people when working with them, you can join and listen to that free free workshop.

If you direct message me the word workshop, then we will send you immediately the link for you to sign up. Otherwise, it's in the show notes below.

[22:16] Join me for this journey, guys. We are on a life flight, like a flight, a dementia flight.

I can teach you the entire process using a flight and a airplane.

So stick along for the ride. We may have some turbulence along the way, but stick along buckle up enjoy the journey we have one life and one life only and yes we are navigating dementia but that doesn't mean that we cannot still create moments of joy and enjoy our relationships throughout this process thank you for listening today 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 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.

It. 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.

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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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