FIND OUT EXACTLY HOW YOU ARE DOING AS A DEMENTIA CAREGIVER

TAKE ASSESSMENT

Click to play

How to Easily Recover from Dementia Caregivers Grief

Have you ever wondered how understanding and managing emotions can transform your journey as a caregiver for a loved one with dementia?

In this episode, grief recovery specialist Heather Leigh discusses the intricate topic of processing grief in a healthy manner, particularly within the realm of dementia caregiving.

Heather sheds light on the learned responses to grief and how generational behaviors influence our coping mechanisms with loss.

2:59 Introduction to Grief in Dementia Caregiving

3:43 Exploring the Reality of Death and Dying

7:14 Addressing the Complexity of Grief in Caregiving

8:46 Our Response to Grief as a Learned Behavior

11:40 Childhood Grief and the Impact of Loss

14:03 The Challenge of Understanding Our Own Feelings

16:45 Comparing Grief to a Nasty Hairball

18:24 Unpacking Past Events in Grief Recovery

21:04 The Losses in Dementia Caregiving

27:09 Barriers in the Healthcare System for Caregivers

30:16 The Importance of Ongoing Conversations

38:34 Escaping the Trap of Negative Thoughts

49:55 Finding the Right Counselor

54:18 Redefining Care for Loved Ones

57:24 Engage and Empower in Dementia Care

The Emotional Landscape of Dementia Caregiving

Caring for a loved one with dementia is undeniably challenging, often involving a complex blend of emotions ranging from love and devotion to fear and grief.

Yet, many discussions about caregiving focus mainly on practical aspects, leaving the emotional terrain relatively unexplored.

Acknowledging Grief and Loss

Grief isn't just about dealing with death; it's also about handling the incremental losses experienced as dementia progresses. This can include the gradual loss of your loved one's cognitive abilities and the essence of your relationship with them.

Understanding that grief can manifest in various ways is crucial. It's not just about the tears; it's also about the emotional exhaustion that comes from the day-to-day changes in your loved one.

Managing Emotional Overload

As a caregiver, you're likely to experience a rollercoaster of emotions. Recognizing these feelings as normal responses to your situation is essential. It's okay to feel overwhelmed, frustrated, or even angry.

These are natural reactions to the demands placed upon you. By accepting your feelings, you can begin to manage them more effectively, preventing them from overpowering you.

Practical Strategies for Emotional Resilience

Building emotional resilience is key. This involves developing strategies to cope with stress and emotional strain.

Techniques such as mindfulness, regular physical activity, and maintaining social contacts can be incredibly beneficial. Additionally, setting boundaries and asking for help when needed can prevent burnout.

The Role of Emotional Support

Seeking support from grief counselors or support groups can provide relief and understanding. Sharing your experiences with others who are in similar situations can validate your feelings and offer new coping mechanisms.

Remember, you're not alone on this journey, and seeking help is a sign of strength, not weakness.

Conclusion

Embracing the full spectrum of emotions that come with dementia caregiving can lead to a more fulfilling experience.

By acknowledging and managing these feelings, caregivers can find a deeper sense of purpose and connection in their role.

Remember, it's not just about providing care but also about navigating the emotional complexities that accompany this critical role.

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 close-up of a person holding a hand | How to Easily Recover from Dementia Caregivers Grief

Introduction to Dementia Caregiving for Families

[0:00] Well, this was a fascinating episode of Dementia Caregiving for Families. We talked with Heather Leigh, who is a grief recovery specialist. And one of the biggest takeaways I had from our conversation today really had to do with how do we process grief in a healthy and better way without just going down the negative rabbit trail that is often a part of a death and dying process. So, listen to this episode with Heather Leigh, and I would love for you to give me feedback related to the episodes that you are really enjoying so we can bring you more of those types of episodes.

[0:59] On the website, thinkdifferentdementia.com, there is a little microphone that you can send me a voice clip with questions. You can ask me anything. You can give me feedback related to what you're liking, what you're not liking. And let me know so that we can tailor these episodes of Dementia Caregiving for Families specifically to what it is that you need in your dementia caregiving journey.

[1:33] 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 of perseverance for this journey. Use science-backed solutions and biblical principles to redeem your time.

The Intersection of Dementia and Christian Faith

[2:47] Praying this blesses you as we dive into dementia from a Christian perspective. Let's glorify God despite dementia.

Introduction to Grief in Dementia Caregiving

[3:00] Well, I am looking forward to today's episode. We have a very special guest. Her name is Heather Leigh in today's episode of Dementia Caregiving for Families. And this is a oftentimes touchy subject for people that we do not like to think about, and we do not even like to talk about all that much. And that is how to navigate a grief process and losing somebody that we love through a dementia caregiving process and all of the baggage that that brings

Exploring the Reality of Death and Dying

[3:40] up for people in a variety of different ways.

[3:44] So I met Heather through a mutual friend of mine, Anna, and we are going to have a very sometimes difficult conversation for people, but very frank conversation that I think really needs to be highlighted more than what we do already, because the reality of the matter is death and dying is a part of living. And unless the Lord comes tomorrow, none of us are going to make it out of here alive. And so I thought it would be an appropriate opportunity to bring Heather on the program to talk to you guys a little bit more about grief. She is a grief recovery specialist and some information that I just learned before we started recording. So Heather, I am super excited to have you here today. Well, thank you so much for the invite. It is awesome that we get to spend this time together.

[4:44] My name is Heather Leigh. I'm from Elgin, South Carolina, and I have a cemetery here in Elgin. We offer our traditional burial options and cremation memorializations, as well as in our Life Tribute Center, we offer grief counseling and other resources to our families that may be needed throughout that process. Well, what a unique ministry it is, because it absolutely is a ministry to work with people through oftentimes some of the hardest times people are experiencing. Experiencing, you know, the death of a loved one is not an easy process for anybody.

[5:29] And so I know that this is a very hard topic for a lot of people to think about, specifically related to dementia. Because in the wider world, in the greater narrative, there is a tremendous sense of dementia being... The worst type of death a person can experience because it comes with a lot of different types of things that other processes maybe don't come with. But I believe that it is really no different than any other death. It's just that the world has taken on this narrative related to dementia specifically.

[6:18] And so I'm very excited to have you here so that we can really talk about this because I know for a lot of people, being a caregiver of a person living with dementia brings, number one, the knowledge or we know that this person eventually is going to pass away. But there's a lot of loss of abilities and loss of autonomy and loss of relationship that comes along with a dementia caregiving journey. So I know that people who are caregivers are grieving sometimes maybe in a different way than somebody who has had a loved one pass away suddenly.

Addressing the Complexity of Grief in Caregiving

[7:08] Right. And I think of it as the death by a thousand razor cuts. It's just always something. And if they're not losing something, they're gaining an additional responsibility or they're gaining another doctor appointment or they're gaining somebody else that they have to communicate with. It so it's a it's a very difficult uh road to traverse and it's not an easy one too everybody has an idea everybody's a little bit different uh what i like to tell people the reason why i do this is i'm i'm a conduit i'm a conduit for this individual to be able to To stop, reflect on where they're at, identify those triggering thoughts, stop the mad tape playing in the head so that they can sit still for a moment and figure out why am I being triggered? Why am I having this response to this situation? What does that look like for me? And then giving them good resources that they can follow up with as well as start to begin to heal from within because they've lost the individual way back when.

[8:26] And then as the brain continues to die or as the body either reacts physically in a harmful way or regressing and not moving, that's a whole nother loss.

Our Response to Grief as a Learned Behavior

[8:41] So, yeah, there's a lot to unpack with that. And I'm excited to be here to do that with you. I'm excited. Now, before we got started on our recording, I actually said, Heather, stop, stop. stop, we're going to start recording because I want to ask this question and we're going to start the program with this. So you said to me, and I'm like, can you say that again? You said to me, our response to grief is a learned behavior. Yes. Will you please explain to people what that means? Because I've had a couple of minutes to reflect on that. And yes, our response to grief is a learned behavior. And I don't think I've ever heard anybody say it in that particular way. So tell me what that means. Yeah. So think about a child out on the playground. Something goes awry. They're with their friends. They come back into the household. Something happened. They're crying. And the adult says, oh, you know what happened? The child begins to explain the situation as they're crying, they're dusting their kneecaps off and whatnot. And the parent says, okay, well that that's enough of that. Here's a cookie.

[9:54] Okay, so we really don't know what happened. The child, and so the child, get my hands ready. So the child's down here.

[10:03] We're up here. You gave them the cookie. So they're eating the cookie. They go off to their room. They're feeling pretty good. And then they're like, wait a second. The sugar high begins to wear off. And then they get further, further down. And then they realize my feelings were never addressed. I don't even know what I was feeling. feeling like we expect children to behave or feel or understand their feelings when they have no prior experience with this feeling this is something new to them and so now they've had the cookie they go back to the adult you know they're they're going back down in the slump again and what does the adult say we don't cry over spilt milk or here's my other favorite one you're going going to keep crying i'm going to give you something to cry about so okay so we have a grieving child over something and now we're going to add physical abuse on top of it yeah that's my favorite you know so this is why i say our behaviors our response to grief is learned, grandma behaved like this during this type of a situation mom behaved and now the granddaughter daughter behaves. And so it's generational and learned. You know, this is why I think we have some pretty challenging problems in school with some of our younger students, because we have adults that haven't been able to address their own emotional needs or their own grief situation.

[11:31] The other one too, that I want to share with you, the other big loss that we have as a child oftentimes revolves around a family pet.

Childhood Grief and the Impact of Loss

[11:41] So often our very first loss is a pet of some type. And.

[11:48] Instead of doing something to honor that pet, we may take the pet and bury them in the backyard. We may have them cremated. Those options are completely different now than when you and I were growing up. Right, for sure. Yeah, we buried them in the backyard and called it a day.

[12:04] We flushed my goldfish down the toilet. Oh, no, the aquamation. Animation so um the big thing that we run into is that the pet passes away and then by the next day or by the weekend we're like hey let's go out and get a new pet well maybe the kid doesn't like that pet maybe you know they just want to sulk and and feel sorry and sad and cry and and miss their beloved pet that they had all those years with you know it's it's something that we just as adults don't think about we think about oh let's hurry up and do this the other thing too I want to comment on you know the learn behavior portion of it is that we don't take the time to understand our own feelings so I had a client who came in and the first thing she tells me is I've had 16 years of therapy and so i'm i'm counting backwards i'm like dear god that's about since you were 13 14 15 she said yep and i said so what brings you to me today she says i have no more coping mechanisms i'm out of coping mechanisms and i can't gain control of my feelings and i'm like.

[13:27] Have you ever thought about feeling your feelings feelings, instead of saying, oh, I can't feel this way. I can't have a cry. I can't feel mopey. I can't believe this about something. Like, have you ever thought about just feeling your feelings and then backtracking into the feeling to see what the triggering moment was? So we are so busy with all these other messages throughout the day that we don't even know we're feeling all of a sudden it's just, we're on our way home. And it's like, wow, I feel fantastic or here we are another day.

The Challenge of Understanding Our Own Feelings

[14:04] And people really don't honestly know how they feel because what's our favorite one. Hey, how are you feeling? I'm fine. I'm fine.

[14:13] Right. Oh, are you really? Well, no, my mom, my mom's even better. Like you ask her, how are you feeling? She's, she'll just say, uh-huh. Oh, okay. I'm like, no, mom, really? How are you? You know, she, she, she's defrayed it so many times. That's putting a shield up. Oh, yeah, no, for sure. Trust me, I'm full aware of that shield. Okay, so the question goes back into learned responses. Do you have that, you know, is that a response that you've adopted?

Navigating Learned Responses in Grief

[14:52] That's a good question. I've never thought about it. I try not to, but I'm sure that there are certain times when people ask me that I don't want to answer that I will use the same technique. But for people that I'm willing to speak with, I will let them through the barrier.

[15:14] Barrier that's another good one so and and we all do that because a do we trust the individual enough to have an honest conversation with right and b did they ask because they really care or are we just being polite correct exactly so so those those are a lot of quick decisions we have to make and then the other thing too is we don't have to bear our soul to that individual and verbally vomit everything all over them, we can say, you know, today's kind of a little bit of a different day for me. Yep. That's a good strategy. I was at a networking event a couple of weeks ago. Tomorrow will be two weeks ago. And when I got there, I just had like a bad attitude, like entirely. I have no particular reason why, but everybody who asked me how I was, I noticed I was like being tremendously negative Nellie. And finally, I'm like, stop it.

[16:15] There's no reason for you to feel this way. And I literally, I stood there, I looked at one guy and said, I'm going to have an attitude adjustment real quick. And I said, you know what? I'm fine. I'm having a great day. How are you? And it was a decision to not continue to go down that negative loop that, like, almost like a broken record in my head related to whatever drama I had conjured up that day.

Comparing Grief to a Nasty Hairball

[16:45] One of the things that I share with my clients when they, you know, when they reach out is that grief, grief is like a nasty hairball.

[16:58] So, you know, when you've scraped all your hair out of your brush and you got this big old hairball, that's what grief is like. And if you go to pull on one part, if you had to separate the strands out and it all tightens up, that's what happens in our brain. So our job is to massage that hairball part and tenderly pull on the different components to see where where do we really need to work on ourselves at how do we need to understand what's going on and it is truly work because whatever happened today is not the catalyst for my grief I had a woman who came to me she was actually her boss made her come see me because it was impacting the the other co-workers and it revolved around her sister's death and so there were three sisters and the one that had passed away was the mediator she always kept the peace so the elder one and the youngest one, really didn't communicate well, or they communicated in a way that was not helpful.

[18:05] And so when the sister died, everything that she knew went into her sister passing, and that's why she was grieving. Part of what we do is we do a lifeline. And so it's from your dawn of early consciousness to today.

Unpacking Past Events in Grief Recovery

[18:24] And you write down all of the big events that you remember, both positive and negative, are perceived positive and negative.

[18:33] And then we begin to break things apart. And then we begin to really see why we respond the way we do because it's like, oh.

[18:45] I thought about that and didn't realize that I was still holding on to those feelings. Because what do we do? We foul them away in the back of our brain. We shut that door, lock it up, and expect it to go away. Well, that's not how it works, folks. It will come crawling back out. It will find a way out. It will bust the lock. And it's going to hit you like a brick when you're unexpecting it or when you least expect it. So those are the things that we work with is to really dive into and pull out those components. And then sometimes, too, some of our grief is driven by a particular family member or somebody close, especially when we have families whose children grew up in a dysfunctional family with alcohol or drugs, domestic violence. Violence you know maybe there wasn't no violence but maybe the person would just disappear for a couple days and then come back and there was no reason no explanation uh maybe they were bullied by a particular neighborhood kid or person you know who knows food insecurity financial insecurity all of those play into the development of our minds and so you know oftentimes we don't really get over that very well as an adult we think we did and then a behavior comes up or.

[20:13] A response comes up and then it's like wow i wasn't expecting that and where did it creep out from from way back here where we thought we had it locked up and put away so that's why with the grief recovery method we don't work on closure there's no such thing as closure when it comes to grief. We work on completeness, completeness of that situation to the best of our ability with the knowledge we had today. Does it mean that it won't come back out later? It might because we now have new information that we have to apply.

[20:51] Wow. This is really, really interesting. Before we started talking,

The Losses in Dementia Caregiving

[20:58] we talked about grief and dementia briefly, and you mentioned three things. The first one was the loss of the individual, the person living with dementia, right? So we're losing that person that we knew and we loved and who they were, even though I believe there's still that same person. We're just at a different stage in their life. But yes, we are losing parts of that person. And then you talked about the grief of all of the added responsibilities that a caregiver has. Is and then you said the third one was how do we being a lot of us are the sandwich generation.

[21:50] How do we navigate elderly parents and still being involved in our own children's lives so can we talk about those three a hundred percent definitely so the loss of the individual so So, you know, when we think about our parents, you know, and I'm going to make a big assumption that most of your listeners are caregivers for their own parents, maybe an older sibling, a grandparent, something along those lines, a relationship. Yes, they're spouses and children, but yes, they're family caregivers, even the grandson. Oh, okay. Yeah, yeah, yeah. Yeah. So the loss of that individual is that their personality has significantly changed. I'm not going to be able to confide in mom to say, hey, I'm really irritated with how little Jane is not performing in school and I don't know what to do.

[22:55] Mom's not able to have that conversation anymore or how do we as aging women do that gracefully and have some fun with our our mom having that conversation about like what was it like when you turned 60 what was it like when you turned 70 yeah what did you really feel about that the individual while physically they are the same person.

[23:21] They're not able to have that same deep connection, conversation that we have grown to expect. So we have the loss of that. And there's really no one that can replace that. I can't remember her name off the top of my head. I do have it here somewhere.

[23:37] She wrote a book called Parentless Parenting and losing her parents before she had a child. And she's like, who do I go to to ask these questions about how do I raise my child? So we lose that connection with the generational knowledge of family, our ability to connect and continue to develop that relationship as they grow older and we grow older. And then you have the situation where you might have just gotten off the phone with an oncologist or somebody who is offering some advice, some sort of medical situation. And then at three o'clock, you got to go to school to deal with a teacher or assignments. And, you know, that's a huge, yeah, you're getting out of one vehicle that you commonly drive and now you're getting into an 18-wheeler because now you all know, you know, you're just in a whole different realm. And so that's a lot of brain shift for us to manage for one person. And i i encourage families that are going through dementia and this type of caregiving that.

[24:56] Don't you're not a hero by trying to do it all there there's no such thing and please don't because i can tell you the number of people i have buried who have been caregivers and the person who has dementia is still living they they literally died in the process because they wanted to be the hero and like there's there's no right care for yourself care for your family the best you can take in the resources that your community has to offer and if you have doors that are shutting, go somewhere else. To me, a hurdle is something to go around, under, through, over. You know, don't stop just because somebody said no or they can't do it or they don't know. Mm-hmm.

[25:49] Yeah, I agree a hundred percent. 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 on Saturday. If you'd like to register, message me the word workshop on Instagram or check out the link in the show notes below.

[26:50] Absolutely, but for sure, it is so challenging in the health, How many barriers the healthcare system throws up that really,

Barriers in the Healthcare System for Caregivers

[27:06] I believe, totally compound what you just described. I mean, your conversation about imagining somebody is just getting off of the phone, talking with the doctor about mom, whatever medical stuff, and then turning around and doing a 180 in a different vehicle, picking up the kid. But the barriers of the healthcare system has been something that I never recognized as a healthcare provider, how many barriers the healthcare system has put on family caregivers that I don't have a solution for it, but is compounding the sense of burnout. Out because you're dealing with all these different systems. And I'll use my mom. My mom is on one scheduled medication and the law says he could give me a prescription for six months, but the doctor says four.

[28:19] It used to be three. Oh, wow. So every three months, I would have to call and get a new prescription on a medication that I physically cannot go and get in the pharmacy without medication.

[28:38] 1500 hoops that I'm jumping through. So why add that one additional layer of something else that I have to juggle that those responsibilities to be able to manage that it just it makes no sense. And I like I said, I don't have a solution to this specific problem, but just making healthcare providers more and more aware how they are contributing to caregivers burning out. You said something else which I find really interesting because I've been looking for those statistics and the statistics are very hard to find about caregivers dying before the person that they're caring for that has dementia. I've heard all the way up to 63% down to 18 to 41%. How do you prove that, right? How do you prove that being that caregiver has actually contributed to them actually passing away earlier, which is why I think those numbers are so vast. But I find it interesting that you've observed it in your particular field, that it is true that family caregivers are passing away before the person that they're caring for. And it's just like the other one that is kind of like an unfounded statistic. It does exist. And that's like dying of a broken heart.

[30:03] If you have somebody, a couple who's been married, like we just buried a gentleman. He and his wife have known each other since eighth grade.

The Importance of Ongoing Conversations

[30:16] They have been together like beyond 50 years i think it's probably closer to 65.

[30:25] And i had forewarned the daughters i said you need to stay you need to pay special attention to mom and she's not dementia yeah so this is is not related to that right we really need to pay special attention because this is all she's known and when you take something that significant away from somebody it is truly possible to die of a broken heart and typically within a year and a month of when their loved one passed away they pass away they just can't stand not having them around so that's why these you know is what that's why it's important we have these ongoing conversations to let your listeners know you are not in the wild alone, there there are people out there who truly care about your well-being and you are so right that our medical profession puts these unnecessary uh barriers in care and one of the if you haven't seen or read the book yet if you haven't seen the movie or read the book being mortal is a phenomenal resource for your listeners, and I cannot pronounce the gentleman's name.

[31:47] It is really long and has lots of vowels in it. And I love him to death because he acknowledged his own shortcoming and saying to people who were, and this is all cancer related, you know, stage four diagnoses and stuff like that.

[32:05] And his own contribution to the unhelpfulness he had with his families. And so when his father started to experience an inoperable tumor in the spinal column, he learned very quickly about those barriers. He learned very quickly that he, as a phenomenal surgeon, would pacify family by saying, hey, we're going to get through this. We're going to, you know, you're going to come out the other side. Died so his father had um cancer in the spinal column in his neck inoperable uh his father's a surgeon and they both knew he was going to pass away and he sat there with the oncologist the oncologist said hey mr smith don't worry about it don't worry about it we're going to heal you and get you back out on the tennis court within a couple months right right that part yes and that's That's what he said. And that's, he's like, he and his father were like, you know, we are like knee deep in the medical profession and that's not going to happen. This man is dying.

[33:13] So then what do we come up with? What, what is our course of action? What, what do we do so that you're comfortable? So I'm comfortable so that we can do all of the right things. And it's the same thing when we're caring as caregivers. We want to do all the right things. Unfortunately, those barriers are there. And like I said, man, find a way up, over, around, under, through.

[33:37] Don't let it stop you.

[33:39] Absolutely. I 100% agree. I couldn't agree more, to be honest. But I'm definitely going to be going to look up that. I've heard of it before, but I don't think I've ever seen it. And then the other thing we talked about briefly before we came on was about negative thoughts. Oh.

[34:03] We all have them. I know, right? And the voices in my head are loud sometimes. Yes, very loud. So sometimes I've heard when individuals come to see me in my office, first thing I tell them is, number one, these are the safest four walls you're ever going to have. The walls don't talk, I don't talk. For your listeners, you know, when I share stories, they are general stories, not anybody in specific. One of the common themes I hear when people come in is like, I'm a bad person because I really wanted dad to take that last breath a month ago and here we are. Or I'm a bad person because I can no longer do anything else for this individual and it's okay that they pass away.

[34:57] And it's like, these are human thoughts. And I shared with you my own story with Aunt Susan, 18 months from the date of diagnosis to when she finally passed, we had a lot of ups and downs. I thought I was going to be burying my other aunt instead of Susan. There was a lot of situations involved that we had many medical barriers.

[35:22] And you know my daughter was getting ready to graduate from the air force in texas and we were ready to go to texas we'd already taken susan down there once uh so she had the opportunity to see my daughter and to experience that situation and we were just like holding vigil for her at this point you know we knew her time was getting closer and i'm like come on aunt susan it is okay to take that last breath because I got by now ready to go because I got to get on an airplane. And it was probably, I think, 2 a.m. that morning that she ended up passing away. I'm not a bad person for having those thoughts. There is nothing we can do for this individual at this point. We've given it our all. We've done everything that we can. We love this person to death, and we want to do the best that we can for them. So those negative thoughts that people have, you know, the problem we have is there's really no safe space to share that because somebody's going to say, oh, you know, you shouldn't say that. You shouldn't think like that. You should be positive. You should be this. You should be that. Well, maybe you shouldn't be giving me an opinion so that's why i tell people it's like it's okay to have those thoughts there we are human.

[36:44] And it is okay if they creep in there now if it's a horribly negative thought and you act on something that you should not be acting on definitely reach out to somebody very soon very quickly because there are some thoughts that are very harmful this is not what we're talking about we're talking about those thoughts of like the person has lived their best life it's it's okay for them to go. So a follow-up question, and we didn't talk about this earlier on, so forgive me if I'm stepping into something inadvertently, because it's not the intent at all, but one of my experiences with family caregivers is, like the ones that are successful caregivers over the long haul of a dementia caregiving journey.

[37:38] Actively work on how they think about the process. I'm not saying that they don't have those thoughts because I know that I do. You're driving me nuts. Why are you doing that? Or I'm like, I've had it. I'm done. I'm not doing this anymore. You know, the normal human thoughts that people do have. But the difference that I've noticed with people is that the people who stay in those thoughts, like those negative thoughts are absolutely normal. I agree. But what do we do with them so that they don't consume people is really probably the question I have. Because the people that I've worked with over the years that were consumed stayed in those negative thoughts.

Escaping the Trap of Negative Thoughts

[38:34] And for those individuals, I would say that they feel as though they're trapped. And think of it as like they've fallen in this deep well. And there are days that they can see the sunlight and they're climbing out and everything's good and then something happens they slip further in they just can never get to the top those individuals really need help they are seriously burned out they need to have a total brain change they need a break from their situation, and you know in the course of caregiving part of our losses are the relationships with our significant other or the relationship with our own children, the relationships we have outside of our own household. So that's where we run into some significant problems that this person literally is withering away because the tape running in the head is running full speed ahead and they can't stop it. So one of the things I tell my families or the people that come see me is like, look.

[39:45] Sometimes our brain has gotten so far away from us that we need to do something drastic and so as silly as this sounds i will tell people who recognize that the tape is playing and they can't stop it as they have to have a physical reaction so like if i'm driving in the car and something just falls in my head and I can't stop thinking about it I will literally say out loud stop and sometimes clap my hands have a physical noise because that stops the brain going oh wait a minute she she's called upon us what do we got to do you know and strategy though yeah it because now it's like oh you're waking me up and then we have to figure out why are we stuck in those thoughts what is the triggering moment because if it is somebody is calling 8 a.m every morning with the same song and dance and so well-meaning friends who say unhelpful things.

[40:53] Okay i'm going to use that as an example so let's say we have somebody calling us 8 a.m in the morning hey how you doing oh you know last night was really rough we didn't sleep well we had you know, mom got up a couple of times. Oh, you know what? And they're really not offering you anything helpful. And it just kind of feeds into the negativity. And, you know, we as a person have so many negative things around us. I mean, think about your day, wherever you're driving, you have whatever's on the radio, you have crazy people driving around you you have billboards you have other things that are in yards or whatever whatever that you see regularly our brain is cataloging it we are not paying attention but our brain is cataloging it and then you have on the tv you have the news you have this that any other thing you have just as soon as you step out of your safe zone we're inundated all day long with negativity and it's It's really hard for our brain to work on something positive if we're not feeding it good stuff. So the other thing is the other thing, you know, with the physical stops.

[42:12] The other thing I tell my clients to do, too, is I'm a fan of three by five cards. Some people are journalers. If you are a journaler, I encourage you to do this in your journal. However, it is not meant to be reread and reenacted. That's the bad thing about journals that bother me people have a tendency to go back oh let me see where i was a year ago oh okay oh i haven't recovered i haven't done this i haven't done that no it's it's the.

[42:43] Get it out of your head right i and i use this great philosopher shrek shrek said better out than in and it applies to many things okay so on your three by five card when you're getting ready to go to bed at night you know you really should wind down an hour before you go to bed turn off the electronic devices put these things down wherever the camera there you go put these things down they're poison the cell phone for those who are listening right get off the the computer, read a real book you know read the paper no don't read the paper read a real book anyways get your three by five card on one side of the card write three to five things that you are thankful for that happened that day that you are grateful for, and then on the back side write down one problem you would like to have solved.

[43:49] Okay what does that do and we do this every single night okay now when we're writing our three to five things that we're grateful for we can't say oh i'm grateful that i got up this morning.

[44:04] On Wednesday, I'm grateful I got up this morning. On Thursday, I'm grateful I got up this morning. No, no, no, no, no. These are specific to that day. I'm thankful that it rained because I was able to finally get the laundry done. Or I was thankful for this so that I could do that. Or I was thankful for a peaceful moment. Whatever it may be, write it down for that day. That gives our brain new information going hey we got some good gas coming in we got some good words we got some good thoughts coming in we're able to manage and take care of this now and then the one where we have the problem on the back is that do you know when you take a shower, the thought that you're not even thinking about pops in it's like that's the answer to the problem, problem. That's exactly what happens. And so for those individuals who are just wallowing in the depth of their grief, start with something simple like that. Write down, and it is hard. It is hard work. There's no doubt about it. Write down those situations that you are incredibly thankful for. Those are important. It's important for your brain to have that healthy food to feed on. And that's That's why we get stuck, because we don't have anything healthy going in.

Harnessing the Power of Your Brain

[45:25] For sure. I love that strategy, though, because our brain is so powerful and people really forget what a powerful tool it is. Like, I always joke when I do presentations, our brain is like a Tesla, right? It's one of the best computers in the entire world, but we don't think about it that way. We just, we take it for granted. and whatever our brain is wired to problem solve in our sleep that's why i say do before you go to bed and then you'll notice it and consistency is important don't do it on monday and expect it's going to help by friday you know so consistency feed the brain good stuff so it has that to work on and then like you said our our brain is wired to solve problems and it's one main function and pretty much only function is to keep us alive for the next day yep so that's why it's hard for us to go live yeah that's why it's hard for us to go to the gym or it's hard for us to eat better or it's hard for us to do certain things so the brain's like hey we're just kind of coasting here and I'm comfortable you're breathing I'm still alive today right I'm breathing yeah you don't have to do anything you know don't don't rock the boat so yeah or have you seen inside out.

[46:53] The movie inside out the name rings a bell so it's a it's a uh animation i think it's disney and so happiness is up in the brain going oh we're happy today and she's trying to stop sadness i encourage your listeners okay yeah if you haven't watched that please do because it's good after listening to this and then watching that you're going to have a whole different perspective But what I'm super excited about is they came out with Inside Out 2. They're now introducing anxiety into happiness, sadness, and whatever all the other ones are. And so I think that's going to be, the kids get it really quickly. I think it's important for the adults to get it too and see that you can control it. You can rewire. You can sharpen those connections in your brain. Oh, absolutely. We definitely control how we respond to what happens.

[47:58] Even though we choose sometimes not to, we can. We can control how we respond to. And I do like what you said at the beginning. People do need to feel what they feel. You do need to feel what you feel. And my husband has taken some biblical counseling classes and so on. And your emotions are valid. You feel what you feel. But they're not necessarily always reality.

[48:34] That part. part, that part, you know, you feel what you feel. I'm mad because, you know, a car moved in front of, you know, cut me off or whatever. But the reality is they may be having a woman in labor in the car and trying to get there. And so, you know, it doesn't make it reality, but it's real to us. So we have to acknowledge that what we're feeling is real. But I have really enjoyed this. If somebody listening is truly, truly, truly struggling with grief, whether it be because they're losing a person. And I'm not talking about people who are having real other issues that need other work. But a person who is grieving, how can they get a hold of you? What do they need to do? What other resources are out there to help people move through a normal grief process? So a couple words of caution for your listeners.

[49:48] Not all counselors are equal. Right.

Finding the Right Counselor

[49:52] And not all services give you everything that you need. And what I mean by that is there are some employee benefit programs and sometimes the provider will say, well, this employee is only eligible for a two-hour visit or, you know, they can only do this. So I encourage your listeners to be thorough. And also, if the counselor is not giving them what they need, say thank you very much and leave. I had one of my clients her husband committed suicide in their in their home in their bed, and so every time she went to see this therapist he was like so let's go through the events of the night again like she could still smell the blood she could still smell the the gunshot she could still hear things and so every week it was like let's just relive this whole thing And she ended up finding me because I got that call at 2 a.m. And it just so happens that another individual that I have known briefly through some sort of networking organization was like, Heather will take good care of you. And I got that call at 2 a.m. and answered. And my client, she was like, who answers her phone at 2 a.m.? And I said, the people who need me.

[51:07] Yeah, those are the people that are calling at that time. Now, please, I'm not encouraging your listeners to call me at 2 a.m. Right so no i understand but in case of emergency yeah this was a big situation because the whole thing just happened so i want your listeners to have the courage and the permission, it's okay to say you're not the one that's helping me.

[51:34] I need this. It's okay to say that. So if they are in their area, I can do online. However, I encourage them to go to the grief recovery method. And there are a ton of counselors who have the same training I have, and they're all over the world. And so our goal for the grief recovery method is to help as many people possible in the shortest amount of time to make sure that they get the help that they need. Um, so that's one, that's one resource, the grief rematch, the grief recovery method. And then you can go and select somebody or several somebodies. If you want me specifically, you can reach out to me at Heather at Greenhaven.

[52:25] Memorialgardens.com or feel free to call my office at 803-419-7110.

[52:33] They can also text me at that number as well. Okay. Well, thank you so very, very much. We will make sure to put that information in the notes for people to be able to access a little easier. But what a blessing this conversation is because too many people are afraid to start to talk about this earlier on. One of my biggest regrets, and I know this is also going to sound like a big shift, but like one of my biggest regrets with nursing homes is it took a very normal death and dying process out of people's homes because nursing homes were have only been around a lot of people will probably not believe me when I say but a little over a hundred years like a little over a hundred years what we understand and know to be a nursing home and people living with dementia have been around for a long long time it's funny that you say that the the other podcast I was telling you about uh she had mentioned the layer outers and i'm like i haven't heard that term in forever and it's the same thing with our nursing homes and a lot of other industries that we have we have.

[53:57] Buffaloed a lot of people into believing that this organization can do this better than i can instead of saying this organization is providing families and homes resources so that they can care for their loved one and the best way that's manageable for them.

Redefining Care for Loved Ones

[54:18] You know that's what we want to do now are there some people who do not want to be around the ickiness of it that's a whole nother yes you're right if you don't have the stomach for the ickiness or if you don't understand how to care for another human please don't do it, yeah please don't because then you're bringing more pain and suffering to the person who needs your care as well as yourself and so those resources need to be out there but you're right Right. We've taken even, even think about the birth of a child. We've taken the midwives out and now we have, Hey, the hospital is the best one that can do that. Are they really? Nope. Yeah. So find the combination of care that works best for your family, that works best for your individual. Not, it's the same thing. It doesn't fit everybody and that's okay.

[55:14] Yeah, for sure. Well, Heather, what a blessing this has been. What a different type of a conversation. I really hope people, not I hope, I know people have found tremendous value from this episode because it's a topic that we don't want to touch all that much. And so I'm grateful to, I'm very grateful to Anna to have connected us so that we can have this conversation. And I look forward to having you on again in the future. I'm excited for that because I've got a ton of topics we can cover. Oh, for sure. You're like me. I can do not everything. everything yeah exactly well I'm so here's the thing and you're right in your introduction you said ministry and what I do is a ministry because I have so many people who are like you know how how are you okay with advising people who are like in the worst time of their life and I'm like look, this is a one-shot deal.

[56:18] It's not like we get to go out and buy another car. It's not like we can get remarried again. It's not like any of these other things that we can do over and over and over until we finally feel satisfied with it. And that's why we end up with a lot of shoulda, coulda, wouldas at the end because they didn't deal with it. And they didn't get the right resources or they didn't ask the right questions or they tolerated the ickiness and made everybody's life miserable. Yeah so it's like i want people to live their best life whatever that should mean to them it's not for me to dictate what it is it's for you i want to give you the resources i want to give you the permission i want to give you the courage to speak up on mom or dad's behalf or your older or sibling's behalf, whatever it may be. You need to do that. Absolutely. Well, Heather, thank you so much. And I am looking forward to our next conversation. Me too. Thank you so much. It's been fun. You're welcome.

Engage and Empower in Dementia Care

[57:24] 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 out 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.

lizette cloete on laptop

Subscribe To

Christian Dementia Caregiving Podcast

Ever Wonder How To Know What Is Causing Your Caregiver Stress?
Take Our FREE Caregiver Stress Assessment Today!
https://www.thinkdifferentdementia.com/quiz

Join the Christian Dementia Caregiving Facebook Group today for more support:
https://www.facebook.com/groups/1301886810018410

Are You A Christian Dementia Caregiver Struggling To Cope With Caregiving?
Join the FREE "Ask the Dementia Mentor" Monthly Meet Up! And be on the podcast, get support and your questions answered.
https://dementiacaregivingmadeeasy.com/ask

Register For Your Personalized Dementia Care Audit
Get Individual Guidance & Support! Only One Available Per Month. Be a Co-Creator of the podcast and get a customized audit of your caregiving journey.
https://www.thinkdifferentdementia.com/audit

Enjoy our podcast? Please take a moment to leave us a review on Apple Podcasts and Spotify —it really supports our show!
https://podcasts.apple.com/us/podcast/dementia-caregiving-for-families/id1716187550

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.

>
Success message!
Warning message!
Error message!