Late Stage Dementia

Michael Hughes 00:00
Hi everyone and welcome to Ask a NaviGuide, part of the Abundant Aging Podcast Series. I’m Mike your host and on the show we are tackling subjects in aging and family caregiving that can be stressful to work through. And we’re doing this with tips and advice from United Church homes NaviGuide team, our NaviGuides have had decades of experience helping families, families through stressful issues and aging and caregiving. And we hope that what we share on this show will help everyone everywhere, age with abundance, as we call it, but at the very least, hopefully lower some stress and that you may be feeling and even save you some time. So thanks for your time today. And I want to thank our NaviGuide Kimberly for giving her time to us as part of our dementia series. And Kimberly, you’re such a passionate advocate for those with dementia. Today, we’re gonna be talking about the later stages of dementia and what people might expect, or at least what you’ve seen from your experience, as somebody enters into what we call late stage dementia, and maybe some techniques people can employ to help manage that. But before we get started, I’m gonna read this statement. The opinions shared in this podcast are those of myself and our NaviGuides and are not meant to convey or take the place of clinical legal or other professional advice. So once again, hello, Kimberly.

Kimberly Harp 01:28
Hi, Mike, thanks so much for having me.

Michael Hughes 01:31
It’s great to have you again. So just to give us your background again, you are passionate about dementia care. You’ve been passionate since a young age. I mean, you started out working in a memory care unit when you were just in your teens. Right? I did.

Kimberly Harp 01:46
And it was the best thing that’s ever happened to me.

Michael Hughes 01:49
Did you think about that? Did you think that when you first started or what was it about that that made it so valuable to you?

Kimberly Harp 01:56
I know what it was, when I first started, I had never heard of what an activities assistant was or a memory care unit. When I applied, you know, it was just about paying a lot more than just a hostess Job did once I got in there, and that door opened up, which I now know was no accident. There were very real relatable bonds that happened and took place between me and the residents. And it was just, it was crazy to me because nobody my age, middle age, no one could seem to get it. Some of the residents did you know, with some of the isolation factors that I had experienced throughout my teenage years, I witnessed them, you know, they didn’t have many visitors. They were alone, just kind of left to do their own thing. And I don’t know why just a real bond developer, I didn’t want them to be alone. No more, I wanted them to know, hey, I feel you and I’ll be here for you. That’s it. Wow.

Michael Hughes 03:01
And you’re working in a memory care unit. I mean, somebody would typically be in a memory care unit, because it was determined that by the family, or him or whatever, you know, that look, you know, I need consistent help. I cannot live alone. So I would guess that the majority of people that you’ve interacted with would be more in the late stages of dementia, Alzheimer’s, that sort of thing, right?

Kimberly Harp 03:25
Yes, yeah. Yeah.

Michael Hughes 03:27
So what would be the sort of the typical behaviors you might see from someone? I mean, I know that dementia hits everyone differently, because it’s a very personal disease. But were there any kind of through lines, or when you were sort of advised to sort of manage the residents? Were there any kind of like universals that you’re, you’re instructed to do? Or,

Kimberly Harp 03:46
ya know, a lot of the common symptoms that we see in late stages, dementia is probably the largest one, we struggle with communication, very difficult with speech and trying to communicate what they’re feeling, what they’re wanting. I had a resident one time who all he could physically verbally say, Read, ya know, as he walked around, and yeah, just communication. Definitely.

Michael Hughes 04:17
And would they have receipts problems with, like, you know, people maybe forgetting to eat or drink regularly or things like that?

Kimberly Harp 04:26
Yes. All the time. Okay, so that would have to work on a schedule, you know, at first I was an activities assistant. So all I did was the activities, help them with bingo and there was quite a few residents that would just sit there and have just a very dazed out, you know, stare at the table, but we would go and actually put the bingo chip on their card for them so they wouldn’t be left out.

Michael Hughes 04:52
And this was not United Church homes at a time right. Just like that’s, we have our own comfort Matters program. But this is yeah, everything’s you know now itemized and all that, but it’s important I just enjoy hearing and then, you know, hearing your perspective when you first started, you know, yeah,

Kimberly Harp 05:07
That was still my teen years. And then as I progressed to become a CNA, shortly after, we would have to do every three hour rounds, you know, check on, and they would have a schedule of what time they would eat, baby, stuff like that.

Michael Hughes 05:22
Yeah. So in later stages of the disease, we’ve talked about this before. You know, it’s almost like the front part of your brain kind of goes first, which is the short term memory and can’t remember everything. But then you have this right side of the brain where I think your musical memory lies and your swear words rise and all that. So I guess that leads to some pretty interesting behaviors, right?

Kimberly Harp 05:46
It does. I mean, yes, it does. It’s not unusual to be cursed out in the memory care unit. But you just have to take a step back and realize, you know, that’s not that person talking. They’re really struggling to find the right word, or the right thing to say they’re trying to tell you something, or they’re just having a moment where some of those neurological connections are misfiring. And they’re saying whatever they can, yeah, you know, and those moments, it’s particularly, especially important to really meet people where they are, don’t get upset, you know, be patient, show that grace factor.

Michael Hughes 06:29
That yeah, and that’s so important, right? Because this is very stressful stuff. And it’s very hard to hear that I remember, there was a great documentary that came out. I think it’s called all be me, but it’s about oh, it’s about Glen Campbell, Glen Campbell, who the singer, you know, I’m not a Mason, you know, I am alignment for the county, you know, and they would show him on stage doing his concert and doing his music, like the top of a hat. You know, he’s because his musical memory was still there. And I think we see that in our units, we have me, we have musical therapy programs. And we can see some people kind of like just really suddenly engaged, right?

Kimberly Harp 07:12
Yes, no doubt. And I’ve actually experienced that firsthand. Picture that bingo game, we just talked about, you know, everybody’s sitting around most of them, you know, the latter stages, just kind of days. And often. Next thing, you know, a guest comes in to do the piano. And amazing gray starts playing. You would never know those two people were the same person that was just playing that bingo game, you know, they lit up and it was almost everyone in unison, singing that song. And it’s just really just how, thank you.

Michael Hughes 07:46
We know, we don’t know so many things we just don’t know about the brain, you know. And in that film, you know, they showed, you know, Mr. Campbell, in other words, it was very, you know, it was very transparent to the family to do this. But there were moments where he’s getting extremely agitated and fighting for the words and being belligerent and things like that. And he’s, you know, by all accounts, such a great guy. And so I think that’s really important for people to hear, right, can really this is not the person don’t, it’s hard to say don’t take it personal, right.

Kimberly Harp 08:17
Yeah, I like to help people see the person, not the disease, you know, they are still every bit unique, despite what symptoms they’re portraying, or struggles they’re experiencing right now.

Michael Hughes 08:30
And they, you know, even if they forget their name, I mean, they, if they seem not to recognize you, I mean, your, your presence is still there, right? I mean, if you’re someone that makes this person feel good, they’ll show it.

Kimberly Harp 08:44
Oh, yes. And I’m going to try not to get emotional, but you triggered a story. It was dinner time, at one of the nursing homes that I used to work at. And I was coming off shift because I had been there most of the day, but I offered to help, you know, the kitchen aide, you know, bring out the residents that needed to be brought out, you know, a lot of immediate assistance walking. So I went by one of these sweet ladies rooms and she was sitting on the bed and she definitely had late stage Alzheimer’s disease. But she was sitting there holding a picture of her and her husband in this military uniform on their wedding day. I had never once heard her speak an audible word, since I had worked there. And as I walked in, all she all it took was her looking up seeing a human being there, which was me, you know, that presence alone was strong enough to trigger her emotional response. And she just started crying and holding that picture frame and it was just, you know, I sat down with her. I held her. I cried right along and it’s like, how lucky am I to have these arms to hold her in this very moment. You know? presence matters. Yes, to answer your question.

Michael Hughes 10:06
I mean, the concept of grace and forgiveness of patience. You know, some people have it naturally, some people don’t. But I mean, mean it just even just to know that, you know, you’re not alone in these situations, right. I mean, it’s just that other people have dealt with it. And, you know, people empathize. You know,

Kimberly Harp 10:31
that’s what we all want, isn’t it, you know, just to be met, where we’re at no matter what we’re going through, just take the time to hear my heart. Maybe not the words I’m saying, and maybe not the words I lack, but please just see me. And I just think that’s what they would say to us if they were able to, because that’s what

Michael Hughes 10:49
it’s all about losing fear of losing your identity, whether you know, you’re moving from your home into another home, or did this, it’s this, that having that comfort to know, like, what’s important to you? What did you use to do for a living, what hobbies you know, who your family members are, that sort of thing, there’s no one size fits all to the actual care model, right? It’s just really understanding those important things, and I think I saw somewhere that, you know, we or somebody else may have taken care of someone that used to be an accountant, and we give them spreadsheets to work on. You know, how are you doing here? It’s Oh, man, they’re working me to death, but it’s great.

Kimberly Harp 11:24
Yeah, that’s called what I like to call and, you know, push the person centered approach, yes, really meeting that person, you know, knowing their whole background, what their interests are, or were, so that way you can give them more tailored assistance, and services.

Michael Hughes 11:40
So I’m trying to recover from your story. I want to just see if I can bring it to a practical advice question that I have. So eating a drink, let’s focus on drinking, drinking water and things like that. Somebody may not be drinking, but can you like cue them? Or like, if you take drinks, can they I mean, is there any techniques you’ve picked up on maybe how to encourage somebody to take a drink of water when they need to?

Kimberly Harp 12:07
I’ve heard of circumstances where the queuing does work, you know, the nurses were a lot better at it, they could probably do a lot better. But there is a stage towards the latter middle stages, but especially the end where people just refuse to eat or drink, you know, there’s a straight up refusal going on insisting they’re not hungry, fighting, really getting combative, when you’re trying to help them. There were a lot of creative things that I saw employees do as a teamwork effort to help with that hydration factor. The IV would be the last resort, you know, but yeah, yeah, a lot of things. You know, they had their meds time, you know, there’s pill Crusher, and they put it in some applesauce, you know, and then just spoon feed them, that would be some form of hydration. Right, at that moment.

Michael Hughes 12:59
Right. And just for cueing, I’m sorry, that’s like an inside baseball term. It’s like, you know, I have a glass of water, I’m drinking it in front of me, you know, it’s kind of like, I yawn, other people yawn, you know, that, that sort of trick? Right? Yeah, it was just a question off the top of my head. But I really, you know, appreciate that. And I love this, the note you had about, you know, because, you know, when you have somebody that’s agitated, knowing who they are, in what’s important to them, that you can find little techniques to calm them down, right?

Kimberly Harp 13:32
Absolutely. No one, just certain details, you know, to be able to hang what would be memorable photos, you know, of their favorite movie star, you know, back in their day or play or something, you know, for those brief moments, that they are fully cognizant of their time and place, you know, there’s a late, a new, I don’t know, if it’s a new invention, or if it’s just recently being advertised, I don’t know. But it’s something that’s so helpful. It’s a hug, a hug, a weighted stuffed animal, that’s, that gives you a hug. I don’t know what the proper word is for it, but it’s awesome. Because it just, you know, a rest around their neck and they can rest their arms. And sometimes with the normal, lovely fun stuff of aging, you know, with arthritis or whatever kicks in, you know, if you’ve got a cramp, you know, it’s a soft, very soft sensory stimulation that can trigger some of those other regions of hey, you know, just in those moments,

Michael Hughes 14:41
right, because, you know, over stimulation seems to be the calming effect of things. So you’re not going to put on network television because it might just be too exciting. I mean, we’ve seen, you know, there are robotic kinds of pets that are not that expensive. And if somebody is You know, closer to, you know, maybe there used to be a mother or a mother or there used to be a nursery to give him a baby, like maybe a baby doll to hold and things like that. But the whole point of me meeting people where they are, you know, one of the things I did here was if you’re an early stage dementia, if you’ve just gotten diagnosed, sort of, I know this sounds a little creepy. Follow me on this life memorialization like taking the time to actually and I think there’s online services for this. But you actually can go through and memorialize like, you tell your story, tell your life sort of what have you learned perspectives? Great. You know that that’s also maybe a moment where you can kind of say, hey, you know, if I’ve ever agitated you may want to play me this song. Or, right?

Kimberly Harp 15:47
Yes, yes. And you’re basically reliving the notebook. That movie. You know, he reads her notebook, the story that she wrote, you’ve never seen I’ve ever seen that. Okay, I’ll let you followers comment on that. I’m not gonna touch that one. Yeah, sorry.

Michael Hughes 16:03
Mike has not seen the notebook. But apparently, I should see the notebook. So on the list,

Kimberly Harp 16:09
yes. But yes, it is the story. And what you’re saying is yes, you read the memories, you know, the wording and stuff of their life story or their preference of what to do if I become agitated, this might help. And then in those moments of clarity, they thank you. Well, I’m

Michael Hughes 16:28
I’m glad that I’m not missing remembering a technique here. So thank you. Anything else you want our audience to know about this topic? Kimberly? Are there any resources for this? Yeah,

Kimberly Harp 16:41
you know, give yourself grace, please do not walk this journey alone get support. There are so many wonderful people out there waiting to hold your hand through this journey. We all need that no matter what stage of life we are. And please, you know, yes, the Alzheimer’s Association is there. You see, ah, you know, they never guide. We’re here. Yeah.

Michael Hughes 17:03
Well, on that note, I will pick up the Alzheimer’s Association amazing resources, we have a 24 by seven all volunteer resource when I think it’s all actually people who are former dementia, Alzheimer’s caregivers, who are who are supporting that. So please check that out. And then on our side just to wrap this up, I first of all, I want to say thank you for giving your time to listen to this episode of Ask him again. Kimberly, thank you for your time. This is part of the abundant aging podcast series that’s brought to you by United Church homes. If you’d like this week’s episode, please like, share, and subscribe so we can bring you more of this content. You can find us at abundant aging podcast.com. And you’ll also find an opportunity to send some feedback to us. Was this helpful to you? What did you think? What did we get right? What do we not get right? Are there ideas for other shows that you would like us to cover? Please send us that feedback, because we do want to turn this around and put out content that you find meaningful. For more information about the United State church homes navigate program, please visit us at naviguide.org. For more information about United Church homes and our Memory Care program, you can visit us at unitedchurchhomes.org. Lastly, if you’re listening to this podcast, has July of 2023 We were very lucky to have our caregiver resource site up and running that is a abundantaging.org also a place where you can send us feedback and check out resources that can hopefully support you as a family caregiver paid caregiver or someone that just cares about the needs of someone that may need a little bit more help. So thanks for listening. We will see you next time.