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5 Tips How To Decrease Your Overwhelm In Dementia Caregiving

If you're caring for a loved one with dementia, have you found yourself wondering how to handle the overwhelming responsibilities and maintain your own well-being?

In this episode dedicated to caregivers like you, valuable insights were shared to not only manage caregiving tasks but also preserve your own health.

Understand Your Role

Many don’t realize they've stepped into the role of a caregiver. Assisting with daily tasks like medications or household chores categorizes you as a caregiver.

Acknowledging this can empower you to seek the necessary support and resources.

Establishing Routines

A consistent routine is not just beneficial for your loved one; it's crucial for you as well. Routines foster predictability and can significantly reduce stress for both you and your loved one.

Whether it’s meal times, medication schedules, or bedtime routines, maintaining regularity can ease the caregiving process.

Prioritize Self-Care

One of the standout tips from the podcast is prioritizing your own health. Self-care is vital, not selfish. Caregivers often face increased stress which can impact their health severely.

Implementing self-care practices into your daily routine can make a significant difference in your life and the quality of care you provide.

Seek and Accept Support

You don’t have to go through this alone. There are numerous support groups, both online and local, tailored specifically for dementia caregivers. These groups provide a community of understanding and resources that can offer comfort and practical advice during challenging times.

Utilize Available Resources

Navigating the plethora of information available can be daunting. It’s recommended to focus on reliable sources that consolidate caregiving information, like Dementia Map or Alzheimer's Association websites.

These resources provide valuable, manageable information tailored to caregivers’ needs.

Focus on What You Can Control

Finally, understanding that you can’t control everything is fundamental. Focusing on what you can control, like your reactions and your health, helps manage the unpredictable nature of dementia caregiving.

Embrace a spirit of gratitude and seek moments of joy amidst the challenges.

This episode offers a beacon of hope and practical advice for anyone feeling overwhelmed by the responsibilities of dementia caregiving. By integrating these strategies into your daily life, you can find a balance that benefits both you and your loved one.

For more detailed discussions and personal stories, tuning into the full episode can provide additional support and inspiration for your caregiving journey.

Listen to the Podcast

Listen to the episode on the player above, click here to download the episode and take it with you or listen anywhere you normally listen to podcasts.

a person holding a book | 5 Tips How To Decrease Your Overwhelm In Dementia Caregiving

Introduction to Dementia Caregiving Stress

[0:00] One of the biggest things that most people, when they start working with me related to being a dementia caregiver, is that they tell me is that they are stressed and overwhelmed. And I 100% understand exactly what that feels like. When I tumbled from being a professional dementia caregiver to a family dementia caregiver, I felt the exact same way. And so today's episode 136, we are talking about five tips, how to decrease your overwhelm in dementia caregiving. And so I invite you to listen to today's episode on our newly rebranded program, Christian Dementia Caregiving.

Rebranding and Purpose of Christian Dementia Caregiving Podcast

[1:00] Welcome to the newly rebranded Christian Dementia Caregiving Podcast.

[1:09] It's a podcast for Bible-believing Christians who are wanting to make their dementia caregiving journey easier, and we look at using your God-given strengths to make it easy. And we will give you hope and help for this journey so that you can continue to create memories and moments of joy. Thank you for being here. I am excited with this rebrand. It is extremely scary for me because it's a little aside, but I originally wanted to do this, but I felt like I would be a target in the world. And so I was afraid. And so I went with dementia caregiving for families. And then the Lord convicted me that I really do need to be serving a Christian-based audience as most of, not most of, All of my answers are framed through a biblical worldview.

[2:18] And there is no one else out in this dementia caregiving economy who is talking specifically to Christians who are going through a caregiving journey. And so if you know friends or family that have caregiving questions, I know I specifically speak about dementia.

[2:43] The reality is, it is actually applicable to any and all conditions. Get them to listen to this podcast, share the podcast with them, ask them to listen to a few episodes and reach out and let me know how I can help and serve and help them. Today's episode, we are going to talk about five tips, how to decrease your overwhelm in dementia caregiving. And one of the biggest things that I have learned in this process is how many people who are in a dementia caregiving experience or journey come to me because they are stressed and overwhelmed and they don't know where to turn. And it is extremely, extremely common for people to feel that way. Why do people feel that way?

[3:41] Well, there's just so many additional added responsibilities, and we are created in the image of God, and we are very adaptable because of that. And what that means is that slowly things start to change. Slowly things are creeping up on us, But because we are able to adapt, because we are able to accommodate and change.

[4:07] We do not notice that we are getting to a burnout or an overwhelmed point because of all the additional responsibilities. Disabilities, another reason why people end up in this feeling of overwhelm and stress is because they do not even recognize that they are a caregiver. And I cannot tell you how many times I've had this particular conversation with people. They're helping mom with their medications, or they're setting up their medications, or they're putting shoes and socks on, or they're going and fetching and carrying things, or maybe you're fixing the remote control for your parents because they've unprogrammed it for the thousandth time. Anytime we are doing those kinds of activities and helping another person, we are a caregiver, but we don't call ourselves a caregiver. I'll use one of our group members as an example. He's a 32-year-old young man who is helping his grandmother.

[5:17] And several years ago, he started mowing her lawn. Well, that is a caregiving task. Yes, he's doing it to honor his grandmother and he has the ability to do it. But, you know, unless you start to recognize these activities that we routinely do to help someone as caregiving, we're not actually talking to one another about the added responsibilities, the added stress that we are taking on by being a caregiver. And so a lot of people do not even recognize that they are a caregiver. Another way that people start to really notice or become stressed and overwhelmed is just what I call decision fatigue. People who start to get totally overwhelmed because they're constantly not only making decisions for themselves, right? What's good for us? What am I going to have for dinner?

[6:18] Are we going to go to this movie or that movie? Or I still have children in the house. Can their friends come over? all the daily decisions that we all make we make hundreds and hundreds of decisions every single day and now we are starting to make decisions that impact not only us but impact someone else and those decisions need to be made from a biblical perspective related to your station and your other relationships that you have in your life for example if you are the daughter of somebody taking care of another person, your parent, then all your decisions and you're married, all your decisions have to come through the lens of a married woman. If you were a single woman who is helping a parent, then your decisions look different. I'll use my client who is the grandson. His decisions look different right now because he is an unmarried man. But if he were to become a married man, the decisions that he makes as a caregiver.

[7:22] Have to come from that relationship of first being a husband, a father, and a spouse. So we need to always be firming all of the decisions that we make and take through our biblical worldview, our biblical lens. So that was just a quick introduction as to why we become stressed as family caregivers so now five tips how you can decrease your overwhelm and stress in dementia caregiving now the first one is something we talk about a lot and I know how hard it is to do because it is something that I struggle to do too that is prioritize your own self-care so this This is something that a lot of people say, but it's extremely challenging sometimes to do, but self-care is not selfish, right?

[8:22] Did you know, and the numbers are really hard to come by, but between 18 to 41%, I've seen studies that say about 18%, I've seen studies that say 41%, I've even seen a statistic that it says 63%, but then I started thinking about it and I'm like, yeah, that one was probably not true. But even if we were to take an average between 18 and 41, if we say about 30% of family caregivers actually die before the person that they're taking care of, that is because of increased, stress, increased overwhelm, and decreased lack of ability to take care of yourself. So it is not selfish to take care of yourself as a family caregiver, especially if you are a spouse. And I know that when spouses are helping another spouse, it becomes extremely hard for them to put aside the time to actually take care of themselves. All of us have heard this analogy before.

[9:28] It is out in the common caregiving economy a lot about being on an airplane, and most of us have flown, being on an airplane and a flight where the flight hostess or the air stewardesses, whatever they're called, flight attendants, they've got. I was born in the 70s. We used to call them air hostesses, right? So what is an air? Now a flight attendant, okay? Okay. A flight attendant will do the safety check. And when they do the safety check, they tell you that if the oxygen were to come out of the dispenser, right, that you, if you were flying with someone who needs your help, you do not put it on them first. You put the mask on yourself first, and then you help the person who needs help.

[10:25] Why do they say that? Because dead is dead. If you die because you've put the mask on the person who you are helping first, they are not able to help you put the mask on you should there not be enough oxygen, and you will not survive. It's the same. It's the exact same thing. When you are a family caregiver of somebody living with dementia, you have to take care of yourself. And it is not selfish to take care of yourself. The research shows that according to the Alzheimer's Association's facts and figures report of last year, that 74% of caregivers are actually worried about their own health. That's about three quarters of all family caregivers are worried about their own health.

[11:24] And about 30% of them are actually delaying their own health. That means they're not going to their own doctor's appointments. That means they're not going to the gym and exercising, or they're not taking care of eating well, or they're not doing all of these kinds of activities that they always did to take care of themselves. Another thing that I had recently read in a study is that one of the biggest things that family caregivers say is the lack of ability.

[12:01] To go do some things that they want to do for themselves. And so you have to cultivate a spirit and a structure in your life that creates that opportunity for you to prioritize your own self care. So how can you do it? You can create some new habits. You need to build in some respite for yourself and actually go to the gym or go for a walk or whatever you need to do, you have to build it into the daily fabric. It cannot be when I have time. It cannot be when I feel like it. It needs to be something that is not thought about, that is just automatically done.

[12:49] And that's how you create a new habit. Try to attach it to something else that you do every single day. Now, I know when you're caregiving, that may mean you have to structure it a little bit differently if you have to get somebody else to come stay with the person that you're helping. But there are ways that we can figure it out. I had a client many years ago, her husband would sleep until 10 o'clock in the morning or 11 o'clock and she would get him up then. And she took the mornings to do yoga in her house. That was her way of creating some space for herself. She still was there. She was able to hear him. And if she needed to go out, she had a way of keeping track of on him so that he remained safe. So there are ways that we can do that. So the tip number, the second tip for today is establishing a routine.

Importance of Establishing a Routine in Caregiving

[13:47] Have you just recently found out somebody you love has dementia and you are feeling so overwhelmed and don't know where to start? Or have you been on this journey like my friend Pam for 20 years and are overwhelmed from the sheer time that you've spent caregiving or the magnitude of everything that you are juggling and coping with? If you feel like one of these types of people, then I invite you to email me at [email protected] and sign up for a dementia flight audit. It's a new offering that I have where once a month I will work with one person in our community and audit your personal dementia flight.

[14:46] And what I mean by that is look at where you are particularly right now and what we can do to make it easier for you as you're going through this process. Because dementia caregiving can be easier. You can navigate this journey with hope and with help. You do not need to struggle alone. There is no need to suffer in silence. We can make it easier. So sign up for a free dementia flight audit. It's once a month and go to Lizette at thinkdifferentdementia.com.

[15:30] So, 1 Corinthians 14, verse 40, in essence, says, do all things in an orderly manner, right? We absolutely are creatures of habit. Now, everybody has, even in an unstructured routine, we have a routine. And what on earth do you mean, Lizette? Well, for example, most of us wake up at the same time every single day. Most of us do the same exact morning routine every single day. We don't waver off of our routines. Routine is our friend.

[16:10] And each person's routine is important to them. For example, I'll use my husband and myself as an example. My husband has never slept well. He has had insomnia ever since I've known him. And so we have a very strict nighttime evening routine every single day. We do not waver. It's interesting when he's out of town, I'll stay up an hour later and I'll get up at the same time and it doesn't impact me at all. But if we don't go to bed at the same time every single night and get up at the same time in the morning, he doesn't sleep. And so if something were to happen to my husband and he would develop dementia, then I would have to know that of him because that's part of his life story and is a part of his routine.

[17:05] So, for example, if you were a person married to somebody who worked night shift, that can be a very big challenge because their body clock accommodated to being a night shift worker.

[17:18] Which means that they may not want to get up early in the morning. They may want to be sleeping during the day, which means they're up at night, but that is very hard when you're a caregiver to be able to accommodate the normal fabric of other people's lives, doctor's appointments and other things like home health people coming in or all these other parts of a care economy makes it extremely difficult to do, which means we have to make some adaptations. Expectations our life story makes a tremendous difference in how we do things every single day i want you to picture in your mind uh getting dressed in the morning i want you to do an exercise for me i want you to think about how do you put on a pullover shirt right there are so many different ways of doing it and one of them is putting your right arm in first and then your left arm and then your head and then pulling it down some people put their left arm in then their head and then their right arm in and pull it down some people put their head in and then both arms and pull it down how do you do that.

[18:37] Putting on a shirt right how do you brush your teeth um what sequence do you do it in, think about when you're taking a shower what do you wash first and what do you wash next and then do you always follow the same exact routine because to a very large extent we do every person has their own established routine. The more you know about the person you are helping, the way they would normally do things, the better you can help them remain in a routine. One of the biggest differences, and I'm not a strong proponent of skilled nursing care or memory care, or assisted living care, if that is not the desire of the people. I don't want it to be the excuse that, well, the doctor says they need to go to the assisted living. I want it to be the last resort if there are no more options, or if it's the best option for you as a caregiver. So there's nothing wrong with facility-based care if that is your desire. But if it's your desire to keep somebody at home, we can do it. There are ways to do it. But one of the biggest differences between a facility-based care and a home is a routine.

[20:07] And sometimes people in a facility will function better than they do at home because a facility keeps a very strict structured routine. People get up at the same time every day. People get their meals at the same time. They get their medications at the same time. They go to activities at the same time. They go to bed at the same time. It is very, very structured and very routinized, which means when we are helping somebody with dementia, keeping them in a routine is extremely, extremely valuable to both sides and will help actually decrease your overwhelm. So that's the second tip today. The third tip is something we talk about every single time, and that is finding support.

[21:02] Now, support can come in a variety of different ways, right? There are free Facebook support groups. I have a free Facebook support group. It's called Christian Dementia Caregiving. If you are not a part of my Facebook group, I invite you to come join my Facebook group. I have a very strict policy that I will acknowledge people are having a hard time, but then we will move towards finding a solution to the problem and not wallow in the oh, woe is me and doom and gloom tragedy narrative that is out in the world of caregiving. So if you're looking for a supportive community, I have my free Facebook community called Christian Dementia Caregiving. That is certainly an option. There are other Facebook groups available that are on Facebook.

[22:03] Obviously, but my request to you would be to be very selective about the groups that you are in. Not all groups are created equal. A lot of groups are self-sustaining with the members answering one another's questions, which is well and good, but you've got to consider it's one person's opinion, maybe related to one or two people that they've helped, as opposed to Facebook groups that are curated by someone like myself.

[22:36] And there are other people out there that have thousands and thousands of patients that they've worked with over years and years and years that can really give you more specialized and more selective curated information. So a free Facebook group is an option.

[22:57] Local support groups are also an option. They involve a little bit more effort. You've got to get in a car, go to drive somewhere, and go to the support group. One of the benefits of the local support group is that you are around other local people, but also like a free Facebook group, local support groups are not all created equal. It all depends on the facilitator. One of my group members, is an Alzheimer's Association support group facilitator, and does a phenomenal job. But she joined my group, my group coaching, because she recognized that she could not provide herself the level of support that her community members were getting. So who was supporting her? And she is still a family caregiver. So support groups are good. Just like a Facebook group, you do have to be selective of which support groups you join, because not all are created equal. And you will find different support groups have different cultures and subcultures. And so you just have to know that and keep that in mind. Another way to seek support is to be willing to invest a little into either a lower cost paid membership or even a higher cost group coaching program where you can truly get one-on-one support. So those are options for you related to finding support.

[24:24] Women's groups at church, if you can find support there, but you've got to decide what type of support are you needing. Are you needing spiritual support, which would then be like a Bible study or a woman's prayer meeting or a woman's fellowship meeting or something like that, as opposed to do you need support around you related to the dementia caregiving component. So those are two different types of support that you can also include for yourself.

Lizette as a family caregiver

Utilizing Available Resources for Dementia Care

[24:56] The fourth tip today is to actually find and use available resources, and Proverbs talks about wisdom, right? Finding resources and using the resources around you is wisdom. So there are Or really, you know, information is freely available on the World Wide Web. But the problem with the fact that you can hop onto Google and say, my mother has dementia, what do I do next? Is you get inundated with 100,000 different websites that now you have to go through and decide, is this one valid? Is this one, you know, not valid? it. I love the Alzheimer's Association. It is a wonderful, absolutely wonderful organization.

[25:52] But even their website can be very overwhelming with information. And so you have to find one or two maybe curated sites that you can go and freely find some information, but without the overwhelm. If you just hop online and you start Googling Alzheimer's or Lewy body dementia or dementia, it can be overwhelming because it's so broad and so vast. And now it's up to me to pull out the information.

[26:26] But there are a few websites that are really good. And one that I love to recommend is called Dementia Map. So just DementiaMap.com. They've done a great job of consolidating the information in one place. It's not as overwhelming as the Alzheimer's Association. You can search things by search terms. You can look up different types of things. It has a functionality that you can find some geographic things. So I really want you to not get bogged down in endlessly searching online for available resources. We do try to curate some additional resources for you on my website. And here is another one that you can look at. There's another website called safeandsound.com that is putting together lists and groups of products that are appropriate in the caregiving economy. It is developed by a friend of mine called Tracy Lane. So shout out to Tracy if she's listening to today's episode. So DementiaMap.com. And then the second one is SafeAndSound.com. Tracy runs a business called Caregiving Worldwide Network. So those are resources that I know and trust and send people to.

[27:54] The fifth tip for today is you need to, as a, when you are feeling overwhelmed and when you are feeling stressed, how you can help to decrease that overwhelm and stress is focus on what you can control, right? We cannot control everything.

[28:15] Number one, you cannot control other people. as lovely as it would be to be able to control the person that I am helping who is living with dementia that is not ever going to happen. It didn't happen before they had dementia and it's certainly not going to happen after they have dementia. You cannot control other people. You cannot control your spouse. You cannot control your wingnut sibling who is not on the same page You cannot control your children who do not agree with you. You cannot control the person who you are helping who has dementia, who is argumentative all the time and doesn't want to see that they need help. You cannot control any of those things. You can only change how you respond. And I know how hard this is. This is something I struggle with on an every single time basis when I have to interact with my dad. So a little backstory related to my parents. My dad is not a believer, and that is one of the biggest challenges I have as a dementia caregiver is that I am a Christian and my and my dad and I because of the fact that he is a self proclaimed atheist.

[29:37] We have nothing in common related to how to communicate other than communicating through a worldly worldview. And it is extremely difficult for me because all he ever does is argue with me. And I know I cannot control that and I work very hard on only changing myself. But in essence, it doesn't matter what I say, I'm always wrong. Even when I do all of the strategies all of the techniques all of the try to not step into it, the fact that my dad is not a believer is one of the biggest reasons why he and I constantly have conflict specifically in his dementia caregiving journey but at the same time the only thing I can do is change me so every time I go I work on changing me some days I do it better than others. Some days I don't do it well at all, but that's okay. And then I have to ask for forgiveness because, you know, I say something that's not super nice, right? But I'm human and I know that this dementia caregiving journey is for my sanctification too. So I just, I acknowledge the fact that I'm a sinner and then I move on and I try to do better the next time. I don't always do better the next time, but I do try.

[31:01] Another part of focusing on what you can control is coming to this caregiving journey in a spirit of gratitude. Now, I know that sounds ridiculous sometimes when you think about being grateful for a caregiving journey, but what a wonderful gift it can be. But you have to work on recognizing that it is a gift. And so I'd love to invite you, if you haven't listened to episode 59, it was around Thanksgiving last year, where we talked about three ways to be thankful in dementia caregiving. I'd love you to go and listen to episode 59, where we talk about gratitude.

[31:45] And you can control your gratitude, being grateful for the little things in life. In my Facebook group, once a week, I post a question that says, tell me something that you are grateful for despite the dementia caregiving journey. And sometimes it's a small thing. It's a very small thing. I was at my mom and dad's earlier today and my dad got super upset with me again and I'm recovering from a terrible sinus infection and my mom was sitting there and she looked at me and she's like, well.

[32:24] She put out her hands and she came and she said come give me a hug and my mom never does that and so my mom recognized that my dad was stressing me out and she she wanted to connect with me and so for that i'm extremely grateful i have tremendous gratitude for the things that are still good um what else can you focus on you can focus on your prayer life when things are getting hard pray. There is, the Lord already knows what you need. And if you remember, and if you frame this caregiving journey through the lens of God is sovereign, he is good. This is for my good and in his glory. It is his providence and that he is in control of this for you and for the sanctification. If the person you're helping is a believer, it's for their sanctification too.

[33:30] When you frame it through that, it makes it manageable and it makes it easy and it will will decrease your overwhelm and your stress. Does it take it all the way away? Absolutely not. But can we go from a 10 out of a 10 like Angela did down to a 3 out of a 10? Absolutely. We just have to take the first steps. So I'm super excited for you guys being here with today's episode where we had five tips how to decrease your overwhelm and dementia caregiving. The first one was prioritizing your self-care. The second one is establishing a routine.

[34:11] The third one was seeking and finding support. The fourth one is using available resources.

Focusing on What You Can Control in Caregiving

[34:20] And then the fifth one is focusing on what you can control. You cannot control the fact that somebody has dementia, but you can control how you respond to the person who has dementia. If you haven't been on one of, I've started a new segment once a month. I'm inviting people into an opportunity that if you are open to or looking for a free one-on-one coaching experience where you sign up and you come on and we coach through one specific problem that you have, I'd love to invite you to reach out to me. I'm calling them a flight audit, a dementia flight audit. And next month is the first month I actually want to invite somebody from the community to sign up and be willing to be coached through a particular problem.

[35:25] We'll come up with a goal for our time together, and we will come up with a solution for your specific problem. So if you are open to being on the podcast, if you want some free coaching so that you can see so that we can get you your own audit of your own situation, then please reach out to me via email at Lizette at ThinkDifferentDementia.com. And I will schedule you for a one-on-one, and we can audit your particular situation, and you can get real-time help. So that's an open invitation for you to sign up. Email me at lizette at thinkdifferentdementia.com. And thank you for being here today. Like I always try to remember to end my episodes, may the Lord bless you and keep you. and I will see you in the next episode.

lizette cloete on laptop

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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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