How To Help When Your Loved One Says “Help Me, I’m Dying”: Support For Dementia Care
Does hearing the same distressing words from your loved one with dementia leave you feeling helpless?
For caregivers like Cheryl, managing repetitive, emotionally charged phrases such as “Help me, I’m dying” is a daily struggle.
This glimpse into our group coaching program shares practical ways to handle these difficult moments with more peace and compassion, transforming the caregiving experience from overwhelming to manageable.
Managing Repetitive Statements: Why They Happen and How to Respond
Cheryl shares her experience of constantly hearing her mother repeat distressing statements, and we discuss ways to navigate these situations without feeling overwhelmed.
Repetitive phrases often indicate an unmet need or discomfort. For Cheryl’s mother, it may be pain or anxiety, and it’s possible that “I’m dying” isn’t literal but rather an expression of fear or confusion.
A key strategy discussed in the episode is to experiment with music therapy. Playing soothing or familiar music, especially hymns, can help distract and comfort the person with dementia, reducing the frequency of repetitive phrases.
For caregivers like Cheryl, this approach offers an alternative way to address the repetition, making it less emotionally taxing.
The Power of Distraction and Humor
When Cheryl noticed her mother’s distress, she tried to change the phrasing by encouraging her mother to say, “I’m living” instead.
Cheryl’s mother responded with humor, laughing at the new phrase before reverting back. Finding small moments of humor, even in challenging times, can lift both the caregiver and the loved one’s spirits.
Other distractions, such as watching uplifting shows like “America’s Got Talent” or funny animal videos, are also beneficial.
Cheryl finds that when her mother laughs, it alleviates some of the tension. These strategies highlight the importance of creating lighthearted moments in caregiving to foster connection and improve well-being.
Recognizing Physical Discomfort
Sometimes repetitive statements may signal physical discomfort.
Cheryl’s mother, who spends much of her time in bed, benefits from a pressure-relief bed that helps with pain management.
Caregivers can observe patterns in their loved one’s behavior and check for physical needs like pain or repositioning to ensure comfort.
How Coaching Can Support Your Caregiving Journey
This episode emphasizes the value of coaching and community support for caregivers.
Through guidance, encouragement, and practical strategies, caregivers gain insight into managing emotions and handling challenging behaviors with a more positive perspective.
The episode invites caregivers who resonate with Cheryl’s experience to consider the group coaching program, which provides one-on-one support and a community rooted in biblical principles.
Are you seeking ways to find peace and strength in your caregiving journey?
By exploring practical tools like music, humor, and gentle distraction, you can create a more compassionate and manageable experience for both you and your loved one.
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Transcript
[0:01] Hey, Christian caregiver. Welcome to Dementia Caregiver Support for Christians, the podcast where I teach Bible-believing Christians how to make dementia care
Introduction to Coaching Program
[0:12] easier today while helping you imagine a brighter tomorrow. Our episode today is a very special sneak peek into what it looks like to be a part of our coaching program, our group coaching program, where we support the family caregivers of people living with dementia in a unique and different way. The episode that we’re going to have today, you will meet one of my clients. Her name is Cheryl, and she has a very tough situation going on at home. And she brings up a topic that is very difficult for a caregiver to navigate because of the words that her mom tell her over and over again. So this is a second time conversation that we’ve had, me and Cheryl, where we have been talking about her mom with repetitive statements of, help me, I’m dying, I’m dying, I’m dying, help me. And the very, very first time this happened, for obvious reasons.
[1:28] Cheryl was extremely distraught. And we worked through it the first time, but it kind of has come back up around today. So listen to the episode to get a sneak peek of our coaching sessions.
[1:46] All right, sweet lady. Tell me what’s been going on with your mom or with you and your mom. Well, first with my mom. My mom is doing okay. I’ve just been working since I got her back from respite care, healing some wounds from the respite care. And her demeanor has been okay. She’s been, I had a really good caregiver yesterday, which is, I thank the Lord for that.
[2:12] And she was really had good good spirits with my mom my mom did very well so yeah um anyways the only thing that i struggle with is the conversation that she is having 24 and that is help me i’m dying help me i’m dying and that she’s still saying that and it’s not once in a while it’s all day long when she’s awake now i remember when you and i had this conversation before we know it was very emotional for you yeah is it still that emotional are you no i accept it and sometimes i just totally ignore it um but it just you know internally it just makes me feel sad um and uh something that happened really strange the other day was when i was working with her just kind of getting her ready and getting her up is she likes to do all this with her eyes closed even sometimes well well, sometimes, 90% of the time she eats breakfast and takes her medicine with her eyes closed. But the other day I had asked her, I go, mom, open up your eyes. And her eyes went like back and forth really quick. And I’m just like, what?
[3:25] You know, it kind of freaked me out concerned. I’m like, gosh, is she having a stroke or what? Why were her eyes doing that? You know, they were just going just like but i did call hospice and they did tell me that because of her stroke that that can occur but it just it threw me for a loop because i had never seen her do that before with her and that could possibly be what they call nystagmus yeah just the eyes shaking back and forth yeah might be why she’s keeping her eyes closed yeah right yeah um yeah she’s mostly a lot of times has her eyes closed or interact, except for when I try to put programs on for her. I said, please, you know, I go, mom, let’s watch this together. And the programming in the evening, because she’s an evening person, she’s usually in bed till like 2 30 or so in the evening she is watching the programs with me we watch america’s got talent and we watch funniest animals and kids and dancing with the stars she loves that because she used to love to really dance all the time so but um hang on i do i have to one moment mama i gotta i forgot i gotta bring her down she’s done eating lunch and i like to have her, because that’s important.
Cheryl’s Caregiving Journey
[4:48] Mama, you’re doing really good right now. You’re doing okay. I’m just going to give you…
[5:00] Here, here’s a fellow friend of Mama. Here, rest your head. There you go. So yeah, so that’s the experience that I have.
[5:08] So do you remember a while back we talked about singing? Does singing help? Yes, yes, yes. And that’s what I do with her when I do have her up. I don’t do a lot of that right now. She’s like that because she was having breakfast and then now she’s going to be resting for a little bit longer. So yeah, I do. The singing helps when her music therapist comes. She was here this week and unfortunately my mom was very sleepy this week and she did express a couple of words and that was my way because they were singing Frank Sinatra. It’s cute. But she did say it, you know, she said it, but very softly. And she did interact a little bit. You know, usually she’s bright eyed, bushy tailed and interacting. But lately, she’s been just sleeping a lot. Sure. And that’s very, very common. Yeah, for sure. So back to the music, when your mom asking the repetitive question that she says, which I totally understand has to be very emotional, that has to feel very emotional. Have you tried putting on like a radio music or some music in the background? Yes, I do do that. I have some stuff that I play, but I ask her, do you want music or quiet. And she tells me a lot of times quiet. Okay. I give her a choice, you know.
[6:31] Right. But sometimes, so what I want you to consider though, is in the moments when she’s saying that, maybe not giving her the choice and just putting some music on, some soothing music, Maybe some hymns, familiar hymns,
Music as a Soothing Tool
[6:49] songs that she loved before and see if it just brings it down. So it’s maybe not quite as much since music seems to help. And then what I’d be paying attention to is, does the music make it worse? Oh, I got you. Yeah. Does the music make it better? If the music makes it worse, then obviously we want to try something else. But maybe we can even just try it as a temporary in-between intervention. So she starts with it. We put music on.
[7:22] Maybe it quiets her down for a period of time. Then when it starts to ramp up again, you know, then we switch it off. And we kind of see whether it can help soothe her. Because it seems to me that, you know, she’s obviously thinking about it a lot. Right. Which is why it keeps coming up in her head. The other couple of things that, you know, kind of run through my head is, is that maybe the only way she can tell you she’s in pain or she’s uncomfortable or. Or something is going on that maybe if you just reposition her a little bit, we can cut it down a little or some of those kinds of things come up in my head as we’re talking about this because she’s trying to tell us something, but we don’t know what it is. Right. And I know that she’s in pain because mostly she complains of, you know, the pain is when I move her and stuff. So I’ve decided basically in the morning when I give her her medicine, I know it only lasts for about four hours, but I give her Tylenol just to help her in that regard. And then she also gets her Tylenol at bedtime too.
[8:39] So you’ve been on a long car ride before, right? Yeah. You know, when you’ve been sitting for a bit and your body sort starts to get sore from sitting, her body might be getting sore from laying still. Yes. Yes. Well, the thing that I have to say that’s good that hospice had gotten a donation of this bed that has like little bumbles on it. And what happens is the pressure decreases and the pressure increases. So that is really nice. That really seems to help a lot. Because I noticed when I sit on the edge of the bed with her, I was like, oh, okay. It’s like emptying out and then it fills back up.
[9:22] Yeah, those are pressure relief beds. Yeah, yeah. So she doesn’t break down. Yeah. And then this, I just put this on. This is all I have as far as… Some hymns or… Yeah, I found this. These are a praise song. So I just actually put that on for her. So maybe she’ll think kind of more about that. Like you said, she’s thinking more about, you know, the transition and stuff. And we don’t know if that’s what she’s thinking. I know. I know we don’t.
Understanding Mom’s Communication
[9:53] It’s what she’s saying, but it may not be what she means. Yeah, because sometimes she will say, I’m dying. And then she says, A-L, A-L. And then I’m like, okay. And then she’ll say, ing, ing. A-N-G. So the other day when we were just laying there quietly, I go, mom, what does that? What does A-L mean? She says word to explain. I went, okay. And I said, to explain what? And then she goes, I’m dying. I’m dying.
[10:24] Okay. So she kind of like was saying to me, she’s trying to use different words. Right. I actually think your mom’s trying to tell you something. Yeah. But I think that’s what she’s stuck on, kind of like a broken record. Yes. Yeah. And that I don’t actually, I’m not entirely convinced that, That is the only thing that she is trying to communicate. I know. That is maybe something that she’s trying to communicate. But like a couple of things that you can, I would say pain. Yes. She’s uncomfortable maybe in the position she’s in. Uh-huh. I would say just, you know, try some gentle distraction with the music.
[11:06] Uh-huh. Just try, you know, different strategies and then just pay attention a little bit to maybe the frequency and intensity of what she’s saying. So you kind of know what’s the norm for that, right?
[11:20] Now, if we figured out it’s not going to go away. Yes. We figured out that whatever she’s saying there, which I get is not the world’s best thing to say. Right. So if you kind of know what the norm is, if we can even decrease that frequency of her saying that. Right. You go a long way for your own brain health. Right. Right. So when I do have her up, I need to figure out because I’m like, well, I put music on because we have the music channels on the TV. But I put the music on to help in that regard. and then um i don’t know so i was the other day i know that quote sometimes you can’t reason with them but i say mom how about we change that let’s say i’m living i’m living and then she goes i’m living i’m living and then she’ll go and i’m dying but she just makes me laugh you know that’s that’s a good response to her is to laugh you know and that’s what we do i try to make her laugh as much as possible that’s why i put funny you know animals and children because that she laughs i mean one time she just laughed for the whole hour you know and so yeah so that’s what i’m working on you know well we’ve got a strategy for that.
Invitation to Join Coaching Program
[12:39] Isn’t it fascinating to see how different it could be for you related to your dementia caregiving journey by just having a little bit of one-on-one support and someone else to help you problem solve and manage your emotions during this journey? Because it can be tough and we recognize it can be tough. However, it does not have to be that hard. So if this episode resonated with you, I invite you to go to the website and schedule a strategy call with me where we can look and see whether you would be appropriate for our group coaching program. I am very selective in who I invite because it is by invitation into the group because I am curating a community for family caregivers that is very specific with a very specific culture and a very specific goal of helping you navigate your caregiving journey from a more positive and biblical perspective. So if this has resonated with you, I invite you to hop on my calendar and I look forward to seeing you there.
