How To Support Your Mom Living With Dementia And Still Work
What does it take to navigate the ups and downs of caregiving with faith and resilience?
In this episode, we hear from Tracy, a caregiver balancing the demands of caring for her aging mother. Through a live coaching session, we explore the emotional struggles, practical challenges, and spiritual growth that come with caregiving.
The Weight of Caregiving: Tracy’s Story
Tracy shares how her caregiving journey began after the passing of her father, leaving her as the primary caregiver for her mother.
Despite her background in healthcare, she admits that living the caregiving experience is far different from understanding it academically. Her honesty sheds light on the financial struggles, emotional toll, and evolving medical needs of her mother.
Tracy’s story highlights a critical truth for caregivers: no matter how prepared you think you are, caregiving will test you in unexpected ways. Yet, it also offers an opportunity for growth and transformation.
The PEACE Framework for Caregiving
One of the key tools shared during the session is the PACE framework, a practical approach for addressing challenges in dementia caregiving:
P – Person: Evaluate what’s happening with your loved one. Are they hungry, tired, or experiencing pain?
E – Environment: Assess the surroundings. Is the space too loud, hot, or overstimulating?
A – Activity: Consider whether your loved one is bored, overwhelmed, or needing engagement.
C – Caregiver: Reflect on how your actions or emotions might be influencing the situation.
E – Educate: Spread awareness and understanding about dementia to everyone around your loved one.
This framework encourages caregivers to look at the bigger picture, making it easier to address challenges with compassion and clarity.
The Importance of Acceptance and Self-Care
A pivotal moment in Tracy’s journey came when she recognized that her mother’s anger wasn’t personal—it was rooted in the frustrations of her condition.
Accepting this reality helped Tracy approach caregiving with more patience and understanding, reducing tension in their relationship.
The session also emphasized the need for caregiver self-care. Tracy’s newfound ability to take short breaks, such as attending work conferences, provided her with much-needed respite.
The takeaway? Self-care isn’t a luxury; it’s a necessity for sustaining the caregiving journey.
Planning for the Future After Caregiving
Caregivers often focus solely on the present, but planning for life after caregiving is just as important. Using the analogy of climbing a mountain, the session reminds us that while caregiving is a steep journey, reaching the summit is not the end.
Caregivers must prepare for the “descent”—the next chapter of their lives after caregiving ends.
Are you a caregiver feeling overwhelmed by the daily challenges? Take a moment to reflect on the PACE framework, prioritize self-care, and begin envisioning your life beyond caregiving.
With faith and intentional planning, you can navigate this journey with grace and resilience.
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Transcript
[0:00] Hey Christian caregiver, welcome back to Dementia Caregiver Support for Christians, the podcast where we teach Bible-believing Christians how to make dementia care
Introduction to the Coaching Session
[0:10] easier today, while also helping you focus on tomorrow. Today you get a special glimpse into a live coaching session with a client of mine by the name of Tracy. Every now and then, I offer these one-on-one sessions to my community members in order for me to catch up and have my finger on the pulse of how they are coping with their dementia caregiving journey. So let’s listen to a live coaching episode on this Coaching Clinic Friday.
[0:47] Well, Tracy, welcome back to Dementia Caregiver Support for Christians. I am excited that you’re here today. I was very smart and I preemptively did the introduction before we even got on the call today. But for anybody who is joining, Tracy is actually in my community. And like I was explaining to people in the introduction, I try to do these touches with people in between. It’s a group coaching model. But in between, I try to do one-on-one coaching with the people in my community as they have need and as we have the opportunities. So Tracy, I’m excited to have you here today. Thank you for being here. So no, I was gonna say thank you for having me. I’m really excited to be here. And if you guys have listened to the episodes before, Tracy has been here before in a different capacity. So you may recognize her voice.
Tracy’s Caregiving Journey
[1:37] So Tracy, tell me, we haven’t caught up in a while. Tell me what’s going on with mom. And if you’d like to, you can explain to everybody your situation or as much as you’re able to share related to how you care given what the biggest issue is that I can help you with today? Sure. So I became the primary caregiver for my mom and dad about three years ago, and both of my siblings have passed. So it fell on me, took care of my dad until he passed in February of 22.
[2:09] He and my mom had been married for 60 years. And so, and she was not doing well when he died. So there was no way she could live alone. So it was up to me to take care of her. So I have been her primary caregiver and full-time caregiver since that time. She has lived with me and everything. We’ve had a crazy journey. We’ll just suffice it to say, we’ve had some financial difficulties. We’ve had a lot of the challenges that a lot of caregivers have. I’ve been in the healthcare space for a long time, and I knew about caregiving, but I did not understand it until I really got in it.
[2:43] And it is very different once you live it and walk it than it is when you’re just talking about it. I 100% agree, which is why partially I’m doing what I’m doing.
Exploring Current Challenges
[2:53] So in order for me to better help you today. Let me ask you if we have a conversation about six months from today and everything is now going well with your caregiving. I want you to paint a picture for us what that might look like. Well, things have actually started to deteriorate. She is starting to have different symptoms. Woke up about a week or so ago. She was very lethargic when she sat up in bed, started leaning left and didn’t know why she leans left. And that happened like three days in a row where she And she slept a lot. We ended up going to get a brain scan, a doctor who had a brain scan. Brain scan came back clean. So did the blood work. So we’re really not sure what happened. That hasn’t happened since. The cognitive has gotten worse. She’s forgetting. It’s short-term stuff, not long-term. But it’s all the short-term stuff.
[3:44] It literally comes and goes. It literally comes and goes. She’s having a harder time walking. She’s had to start using her walker pretty much daily now. She used to not have a ball. So now she’s still struggling with her feet. She’s starting to retain water now in both legs. So she’s no water. So it’s just, they’re just incremental little things, but they’re very definitely things. She has gotten angry. Defensive. That’s like one. So do you know, are you able to trace back related to her getting angry as to what might be precipitating it? Is it? It can be anything. I mean, honestly, it can be anything. very explosive, very, and that’s just, it used to not be that bad, but in the last 30 days, it’s gotten worse. I have gotten better at handling it better. And I think he’s kind of gotten better about, because I kind of just kind of came to a resolution and I guess sort of accepting the reality of what you’re dealing with as the caregiver. You know, my brother was an alcoholic. And I used to say to him, I said, you know, I hate your alcoholism because it’s my brother. When I’ve talked to you, I feel like I’m talking to that alcoholic. I’m not talking to my brother.
[5:00] And I finally realized I have to accept she’s angry. And I know why she’s angry. She’s angry because this is happening to her. She can’t do anything. And, you know, I was angry kind of for the same reason, you know, and reacting to that. And now that I kind of have come to a point of accepting that, okay, this has happened. It’s not her necessarily that’s talking. And I’ve kind of come to an acceptance of that.
Understanding Emotional Responses
[5:25] That has helped. That has helped. But it’s been hard, but that’s helped. Yeah, I know that that’s very difficult. And frequently when I work with people in the group, I always tell people, you know, when we’re contending with these types of things, there are, I call it the PACE framework, P-E-A-C and E. So the P stands for the person, person living with dementia. What is going on with her? Like, is she tired? Is she hungry? Has she got a hangnail? You know, whatever. Has she got a UTI?
[5:55] Did she have a stroke? Any or all of those kinds of situations that it could possibly be, right? Then the E is for the environment. What’s going on in the environment? Was the TV on? You know, did the dog bark? Did she, you know, is it cold or is it super hot? So the PE, A is the activity side of it, you know, is the person bored or are they overstimulated or what’s going on related to being engaged, actively engaged?
[6:26] And then C is the caregiver, right? How we contribute possibly to it is that we are seeing. And then we educate and we evaluate and educate and just keep running through those. So one of the things that I heard you saying is that you’ve noticed or recognized that sometimes you might be inadvertently contributing to a situation, you know, and that’s even just being aware of it is already the right step in the right direction. And, you know, so I’m super proud of you for being able to step back and recognize that it’s a hard step. It’s a very hard step that we all, I believe, in order for us to be an effective caregiver, we all have to take that step and say, I don’t like the dementia. I don’t like what it is that we’re having to contend with. But providentially, this is what we have. So we have two ways that we can work through it. We can be resistant and angry because we’re dealing with this or we can accept that it’s a change. It’s not, you know, something that we would necessarily choose. But I believe that when you get to what you’ve just described, it actually makes the whole process easier. Yeah, you know, it seems to have, at least I think for both of us, because rather than just exploding on each other and just being so contentious on either side, I think it’s made it better for both of us.
[7:55] You know, it’s not going to change. And we both know that. So you just have to kind of go, okay, this is where it is. This is what’s happening.
Acceptance and Coping Strategies
[8:04] And let’s just kind of march through the muck as best we can. Right. And, you know, the other part of it, and this is from a Christian perspective, and this was something that I personally really struggled with, because for a period of time, like, I think it’s a process, right? I think sometimes we get there and then we just kind of go back into our own stuff and then we realize again, but… I was getting super angry with my dad and it was like he would get angry and I would get angry. He would get, you know, and it was just this, this dynamic was, it’s not a good dynamic at all. And then one day I was driving and I thought to myself, but why am I getting so angry with him? Like, why, why am I getting, you know, and the excuse was always, you know, this has always been our pattern. We’ve always, you know, been, he’s a hard, angry person. And then I realized like, no, I’m blame shifting. I’m making it him. And it isn’t. It was me. Like, I was angry because, you know, I have no control over this. Maybe I feel resentful because I can’t do, you know, whatever it is that I feel that I should be doing. But once I recognized that, like, the anger actually went away. Yeah.
[9:15] Yeah. And I agree with that. I agree with that. That’s kind of really what happened with me, you know, because you realize, you know, you’re getting mad at something that nothing is going to change. Why are you doing that? And it’s only causing problems. And so it’s a better way of dealing with it. You’ve got to deal with it. So it’s not going to go away. So for me, that’s kind of where I’m at. It’s one of those things that I’m trying to kind of do different things, get different things in place and all that kind of stuff. But it’s just one of those, you’re walking through the unknown. You’ve never done it. So I guess kind of like marriage and raising kids, you know, you do the best you can. It doesn’t come with a handbook. No, it does not.
[10:01] So you do the best you can. And, you know, you’re obviously going to make mistakes, but you just kind of pray about it and do the best you can and put it in the
Medical Changes and Considerations
[10:10] Lord’s hands and hope and pray that whatever you’re doing will hopefully end up for the best. Sure. But that’s all you can do. So I noticed when we started the conversation, you mentioned a lot of medical changes with mom. And I’m extremely grateful that you have the background you have because you stay on top of it. And I know that you do. And you mentioned, you know, the balance changes at least a few days and the swelling and so on. Has the doctor talked to you or have you considered talking to the doctor if you thought it was appropriate for palliative care for mom? I have not thought about that. but that’s a really good idea. I had not thought about that, but yeah, that might be a good idea. So the reason I bring up the palliative care is because that puts additional resources in the house and it puts additional resources in your hands. And I’m not saying that she is palliative care appropriate. That’s up to the palliative care nurses to come out and do an evaluation, but just in with all of her medical comorbidities, if they’re starting to.
[11:15] Coincide, it might be an additional way for you to get some help in the house. If you choose the right type of a palliative care, palliative care has come in all shapes and sizes, right? And all different flavors. So I would ask you to maybe think about that a little, because I know you know what palliative care is, but for people who are listening, palliative care can be a, It’s a way of keeping somebody comfortable, but it’s not the same as hospice, but it can be a way of preparing a person and a family get to accept and be ready for a hospice journey. I know your mom is pretty far from that, but just in light of the changes that she’s had, and since I know you work from home and taking somebody to doctor’s appointments and all of those kinds of things can be a significant burden when you’re juggling all of these other responsibilities.
[12:09] Maybe having palliative care come take over some of that might be a solution or an option for mom. No, and I agree. I think that I have a suggestion. I definitely will look into that. You know, like I say, I’m trying to look at a lot of, you know, it’s hard when you’re trying to seek anything for a timeline or anything. For right now, she has good days and she has not so good days you know she has days when she wakes up and her kidneys are bothering her because she is stage three kidney failure he gets a lot of cries so there’s a lot of different plan i am lucky that i have the health care background that i have so that does help a lot although i’m saying that i preached caregiver self-care for years to everyone and again when until you get in it you know it’s easy to preach and then you get in it and then you’re like i had somebody say to me as late as, you know, two or three weeks ago, they’re like chasing, you know, you gotta remember you got it. And it’s just hard, you know, cause they’re your person and that’s what you do is they’re your person.
[13:12] And, but it doesn’t make it, like I say, go ahead. But what I, you know, that, that brings up something that’s very near and dear to my heart. And that is we have to do, we have to teach people. Part of what I try to do is teach people the skills that they need for today, how to communicate, how to do the physical transfers and ADL stuff and so on as it comes up in continence management, whatever it is, right?
The Caregiving Journey Analogy
[13:35] But we also really have to focus on the future after caregiving. And a lady that I spoke with a while back, she had a really good analogy, and I told her I’m going to steal it because it’s a good analogy.
[13:49] When you are walking on a caregiving journey with somebody, it is like walking up a mountain, right? And in purposes of a dementia caregiving journey, when you reach the top of the mountain, in essence, that’s when your caregiving journey is done, right? So you’re walking up this mountain and you get to the top and your caregiving journey is now finished, but you still have to get down the mountain. But we don’t think about getting down the mountain. We don’t think about what do we want our life to look like after caregiving. And if you’re listening to the podcast, you can’t see Tracy, but Tracy is still a young woman. She’s not an old 85-year-old woman with a 100-year-old mom, right? Tracy is a young woman. And if her mom lives another two, three, five years, Tracy’s going to have, Lord willing, a couple of decades after her mom passes away. And we have to consider that. But we don’t. It’s very easy to not consider it. But the other side of the equation is when we, most of us have known a family in our history somewhere who has a child that is born that has some sort of a physical impairment or, you know, something that this child is never going to be necessarily independent. And what I find striking is that we as families, when we are in that situation, We figure out how to live in that situation.
[15:17] Still take vacations, find people to take care of the kids so mom and dad can go away for the weekend, whatever. We actually intuitively know that that’s the right thing to do. But when we’re the family caregiver of somebody living with dementia, we don’t do that. And I do think that somehow, like you say, our brain puts it into two different categories, although they’re the same. You know, in our brain, we think, okay, well, you know, but my first cousin actually has a child that they were told that the child wouldn’t live past the age of three. He’s now almost 35. And he has the brain mentality, like a six month old, and he’s 35. But she takes them everywhere and they go on vacations and they continue to live and they can, they have continued to live. And so, but they have been caregivers literally since the day he was born. Right. So they have, that they have structured it now. Yes. Yeah. They have structured it now so that they can continue to live. And so that’s, that’s kind of my challenge to, to you as well as people listening is now, Now, now that your friend a couple of weeks ago and me have told you, highly strongly recommended that we do self-care.
The Importance of Self-Care
[16:37] What are we going to do to build that in? No, and I agree with that. Well, you know, one of the things that’s helping me actually is the new company I’m working with. They’re actually, they’ve actually sent me, they sent me on a little three-day trip to go to a conference last month. Um, they’re sending me on another three day trip actually next week, um, again for work. Um, but it kind of gives me three days away, you know, to just kind of like do a quick breather. So that’s actually been good. You know, it’s been good for me to just kind of get out of town and just, you know, have three days and just, I don’t. For sure. But you need to keep doing that.
[17:12] Yes, I know. I, I, I’m working on it. I’m a work in progress.
Closing Thoughts and Resources
[17:16] You know, Tracy, all of us are a work in progress. I agree. Every single one. Well. Do you have any last concerns or questions before we sign off for today? I don’t think so. I will just say that I think you’re awesome. And I think what you do is amazing. And I think you are a fantastic resource for anybody who is walking this journey. I know that I will be tapping into you probably a whole lot more than I have been up until now. Just because, you know, up until now, I really haven’t needed to, but I can see it coming. And so I will definitely need it. Well, and I think you bring up a very… Important point you know the the community that we’re growing the the group coaching that that you’re a part of is a very unique community because in order to truly it’s kind of like the conversation with hospice and i know everybody’s gonna be like what where’d you go from one to the other but hospice is beneficial the earlier you start it you have to start you have to start your hospice journey almost two months before you really need it or three months before you really need it in order to really benefit from hospice, right?
[18:24] People who are really benefiting from the community are the people who joined earlier on before they need it and that have been active and are participating in the community because then they already know what questions to ask and they have a place to come and they’re not constantly wondering, what do I need to do? How do I need to do it? So people listening are interested in tapping into or learning about the community. I’d invite you to just go to the website, thinkdifferentdementia.com. There’s a link for you to schedule a 20-minute call. There’s no pressure. I’ll serve you regardless of whether you join the community or not. But it is a way for you to take this relationship a little deeper, a little bit more hands-on support, because really the research also shows its longitudinal support over time. Absolutely. Yeah, for sure. For sure. And I would, I would highly recommend Lizette. She’s awesome. I appreciate that endorsement. Thank you everybody for listening today. And as I try to remember my, I try to remember, I don’t always remember. May the Lord bless you and keep you and come back and listen some more. I’m hoping to do more of these coaching style episodes on a Friday. So come back in and check us out. And thank you for being here today.
