Episode 18: New Developments as Time Goes By

Alzheimer’s Thriver™ 

In this episode, Janna and Larry share recent changes in their Alzheimer’s journey — from slower mornings and occasional disorientation to accepting help with more peace and humor. They discuss how companionship, gentle support, post-surgery recovery, and small daily moments (like seeing children or laughing together) all shape their ongoing commitment to thrive rather than feel defeated. The episode encourages both patients and care partners to embrace patience, teamwork, and gratitude as the condition progresses.

•       Mornings now take longer, and Janna uses calm self-encouragement to get oriented.
•       Accepting help has become easier and strengthens their partnership.       Companions are now helping with flute practice — and learning flute themselves.
•       A recent surgery and medications temporarily affected mobility and cognition.
•       Palliative care is being introduced for additional support.       Humor, shared routines, and noticing small joys help them continue thriving.

Helpful References & Studies

1.     Sleep problems & morning confusion – NIA ⁠https://www.nia.nih.gov/health/sleep/managing-sleep-problems-alzheimers-disease⁠

2.     Companionship & meaningful activities – Alzheimer’s Society ⁠https://www.alzheimers.org.uk/get-support/daily-living/activities-dementia⁠

3.     Dementia risk after surgery (peer-reviewed, Lancet EClinicalMedicine)⁠https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370%2822%2900457-6/fulltext

4.     Sleep & behavioral symptoms in Alzheimer’s – Alzheimer’s Association ⁠https://www.alz.org/alzheimers-dementia/treatments/for-sleep-changes⁠ 

5.     Hospice & palliative care – NIA ⁠https://www.nia.nih.gov/health/hospice-and-palliative-care

Be sure to go to our website at alzheimersthriver.org to learn more about Larry and Janna's adventures.

Transcript

Episode 18: New Developments as Time goes On

[Janna opens Playing Flute]

Janna: Hi everyone, and welcome to episode 18 (or 17 if you are on Spotify)  I'm Janna, an Alzheimer's ThriverTM. 

Larry: And this is her husband, Larry.

Janna: Today's podcast is going to be about new developments as time goes on.

Larry: So, Janna, if someone asked you why you make these podcasts and why they're important for the Alzheimer's patient as well as the care partner, I mean, what's your end goal here? Why are you doing it? 

Janna: Well, to start with, I acknowledge to myself that I have Alzheimer's ...got to start there. And that being said, I have to decide what position I'm going to take. Am I going to be a victim? Am I going to be somebody that's getting worse and worse and worse and worse? Am I going to be somebody that's improving? Not likely, but hey, what can we do with this? Let's explore it. All of us have had disappointments when we've lost something or where we were playing a game, and we came out the loser, and you have to deal with it ...or just mope, which is no good. So, I decided that I'm going to thrive. I could go down or I could thrive. You could just try and make it be the way you want it to be. I choose to thrive.

I have to remind myself constantly over and over when I feel poopy about myself and like I'm a loser: Nope, I'm going to be a thriver. So, as I think about what I should do with these podcasts, I think, well, what would Ineed? I'd need encouragement. I'd need someone in my corner. One of the ways I'd like to promote the podcast is to have listeners like and follow ...and I’Larry: be playing flute at senior facilities. That way I can promote these podcasts to a targeted audience.

Larry: Now on the topic of new developments that have been showing themselves, we haven't done a podcast in a little while. And so, I wanted to talk about or have you talk about the mornings now that you had done a podcast about waking up in the morning and taking your time. It seems like it's taking a little bit longer. Is that true?

Janna: Yeah, it takes me longer and I just accept that. I go, okay, I hear its morning ...all right, let's say “what day is it?” Sometimes I can think of what it is and sometimes I can't, but I don't get all stressed about it. I think it's not life or death. Let's just try to get a little bit oriented to the setting and what season it is and get going. 

Larry: Take us through a typical morning where you wake up like this morning or so morning where you wake up. What is the process? 

Janna: I open my eyes and smile, force myself to have a big smile and then I think, okay, what's going on right now? Where am I right now? Where was I yesterday? What's on the upcoming activities ...or whatever it is? And it takes me time. I'm slow at it, but it's okay. It's kind of like a little child having all sorts of thoughts and all sorts of things they want to express, and they go to express it and they can't quite get it. But they keep trying.They keep trying. They're not embarrassed. They're not put down or anything. They just keep trying and everybody keeps cheering with them. Well, when you're an old person like me, it's not so frequently that people get, “Yeah, go girl, go girl. You can talk.” But I have to talk to myself that way. I have to say, this is good. Just give it a go. Take a deep breath, Janna. Try again. You've got a lot of time.

Another new development I've noticed is that there's like four doors upstairs in our little condo here. And sometimes you'll go upstairs and you won't know which door to go into and then you will ask me, where am I? Well, at first, I didn't want to talk about it. But it seems like I didn't want to have to justify myself, and I didn't know how to justify myself and if you're always guilty of doing any bad thing or what... So, I just kind of pulled out of it. 

Larry: And I've been helping you now to know which door it is and, you know, sometimes I'll just get up and go open the door. 

Janna: And more and more I just get up and look at the door, see what's behind that door, see if I can get oriented there and if I don’t, I just close it and take a deep breath and go down the next door. And I don't beat myself up about being confused. I'm trying not to say every other frustration as “I can't get it, I can't get it.” I just go, nah, just wait, just wait.

Larry: Well, as you've been more calm about, you know, the things that are happening, it seems like it's been easier for me to, you know, accept just helping. You've allowed me to help you. Before it was a little bit more of a struggle because, as we did in one of our episodes when help is not help, you wanted to do a lot of things independently and you still have some independence, that's for sure.

But at this point it just seems like it's easier for both of us at this end. And it's been ten years, but I mean, even within the last year it's been easier for you to accept my help and you'll say to me, you'll look at me in the eyes and say, oh honey, I don't know how I would do this without you. And actually, that's all I've needed. It makes me feel real loving and like it's good that I'm here and good that I'm helping. But for a while there you didn't really want as much help as I was giving. And you probably still don't want all my help, but let's talk about some other developments.

How about the clothes, picking out the clothes in the morning? Are you okay that I'm kind of laying them out there for you? 

Janna: Oh, I feel kind of silly about it. I feel demeaned and yet I'm like, yeah, sure, there's all these things and there's like three or four things you have to do, you know, and which parts go where. I don't want to get hung up on it. I just want to get up and go. So, thank you, make it easy. 

Larry: You've said to me that you would like to help in certain areas.

So, we were making a salad last night and I needed to have eight blueberries in each bowl. And so, I gave those to you, and you didn't seem like it was under or beneath you to put eight blueberries in each bowl. It was like, okay, let me just get this right. In this bowl, this bowl here, where is it? And then I would go over, and I would put your hand on the bowl. There it is. Okay. So, then you put eight in there and it was perfect. 

Janna:  You're very exacting the way you plan things ...instead of saying, put a couple here and a couple there, you say, okay, take one, two, and then on the other one, put two in there. 

Larry: Yeah. And here's some macadamia nuts. I want six macadamia nuts in this bowl, six in this bowl. 

Janna: What's that word? 

Larry: Are you talking about being compulsive?

Janna: That's it.

Larry: Anal retentive.

Janna: It's working well for me. Yeah.

Larry: So, accepting my help. So would you recommend to people that they, as they get help, I mean, like you said, you don't want to play the victim. And I get that. And I think other people out there listening probably get that too. 

Janna: Yeah. I don't want to play the victim, but I certainly welcome the helpers if they're gentle and don't say, “Oh here, let me take your hand,” and do this.

Larry: And you and I, we laugh a lot. Why are we laughing? I don't know. We make stupid jokes.

Janna: It's healthy. Very healthy. 

Larry: We see something on the TV with a clean comedian or something and it kind of hits us, tickles us and then we'll just repeat that and then both start laughing again. So, this seriousness that we had sometimes about our situation with Alzheimer's was like, you know, we're lightening up, I think, a bit on it. You're accepting more help. I do give you my arm when we're walking.

Janna: My helpers get annoyed sometimes when they try to take my hand. I go, “no, I can do this. I can do this.”

Larry: Okay. So, you've accepted some help from some helpers, all right. So, we have now... 

Janna: And understandably, they just want to be responsible because they care, I know that.

Larry: So, there are different ways I could have gone about getting somebody. I'll just recap that ...Janna really wanted a volunteer from a high school or something to push the play and pause button on the iPad so she could practice her flute because she was not able to really focus enough and tap the play button and tap the pause button. And all we needed was a volunteer. And I sent out letters to every single high school and college volunteer program in the entire county of San Diego and not one response. So, I think they were looking for more vocational type volunteerism and not somebody to push play and pause on the iPad. But our daughter-in-law sought out someone who might be willing to do that from a mom's group. This mom's group was in one of the local cities here in San Diego County. And we got a lot of responses of people that just had a heart for people with Alzheimer's. We could have gone the institutional route with some of the services that are provided. But this was a kind of a unique way to do it and that was on Facebook. She just put out the fleece, and so we have two helpers. Interestingly, they were interested as long also that we also of course have one young girl that's been with us for a very long time. She's very helpful and so loving from the Alzheimer's organization here in San Diego called the Companion Program. And they will have somebody come for two hours, three hours a week to just hang out. And she's been very helpful too. But all three of these girls, it turns out all three of them wanted to learn to play flute. 

Janna: Isn't that fun? Yeah. 

Larry: Yeah. And you, although you can't read the flute music anymore, are able to help them with breath control. What else? 

Janna: Blowing the air out ...pushing it out. It takes a lot of energy.

Larry: Yeah.  And they're doing incredibly well. And now it's... 

Janna: And they're really happy with themselves.

Larry: They're like new friends. Right? 

Janna: They can't believe they can do that. “You played that. You got it. Yeah.”

Larry: You've got these three females, wonderful people who are companions and helping to do that pauseand play on the flute. And then they're also learning flute themselves and you guys go on walks. That's a new development. I think it was hard for you to receive that at first. 

Janna: Oh yeah. Oh yeah.

Larry: What did you think it was about when I first mentioned having a companion or having someone to help? 

Janna: I've lost it all and I can't do anything. 

Larry: Did it feel like as a babysitter or something like that? 

Janna: Sure. Sure. But think the key thing, the key thing ...they're very graceful in how they communicate. 

Larry: Another development that's come along is that we, we did have, you had an operation and I'm not going to go into the operation, but hospitals are very difficult for Alzheimer's patients, especially with the drugs. Dilaudid may be given as a painkiller, maybe opioids and anesthesia for the operation and that sort of thing.And so that has its own complications, um, which you handled quite well. It took a good two, three weeks to really come back to a place where you were kind of back to, to where, you know, you were before and, and I'm so glad it did. 

Janna: Ab-nor-mal-er.

Larry: Abnormal? 

Janna: Abby-nor-mal-er. Yeah. 

Larry: But during recovery, uh, we had, you had some pain and so we went into the ER and they gave you some Dilaudid, two doses before we could see the surgeon again for a follow-up. And, uh, that really threw me because you began to shuffle. When we went home after a few days, you, you began to shuffle, you, you didn't talk, um, you almost fell every time you were walking, we even got a walker. And, uh, so I was thinking, oh my gosh, this may be, this may be it, you know? And so, I called the doctor and I said, we may need either palliative care or hospice, something where I can have a team of people around this.

Well, you came out of that, but we, but we still, we still are going through with the palliative care. And here's, here's what I also asked. I asked for a handicap placard. And friends, friends of mine said, you, you haven't got one of those yet? And I said, no. 

Because we'll be in a parking lot somewhere and I'll have to walk you over, you know, the, the little tire bumps and obstacles. And sometimes in a parking lot there's no pedestrian walking. And so, there's cars coming and going and it's, you know, it's going to be, be more challenging to get from point A to point B. So, if we can park in the handicapped place and I just have to be disciplined enough never to use it when I'm by myself, which is a temptation for you care partners, but don't do it.

So, we got that and at first you didn't think it was necessary, but anyway, that's one thing. But the palliative care, nice thing about that is you have a doctor, two nurses and a social worker and we're going to meet with them and we'll probably do a follow up podcast about that because some people may be wondering what is palliative care and what's the difference between that and hospice and do you have to be dying before you can get on hospice and all these questions that'll come up, we'll answer that in a different podcast. But for now, we want to be sure to have an advanced health directive. We want to be sure to have a form on the refrigerator in case paramedics come and you have to, they have to quickly decide whether to take you to the hospital, revive you, whatever. And so that'll be on the refrigerator. We'll talk about that too. So that's a new development.

Another development is that any time you see a child, what happens when you see a little kid or you hear a little kid? 

Janna: I smile, I look at him. And I  go, “look,” I show Larry, “look at how cute he is.” It just, it turns me on to see little kids.

Larry: So instead of saying, hey kid, get off the grass, what do you say? 

Janna: I just smile, you know, and I don't draw him to me because I know they, you know, they got to stay safe with their parents and all. I want to be mindful of that. 

Larry: Yeah, yeah. And I get a kick out of seeing the little kids too. They're so fun. That's good therapy. So anytime you can get around kids. 

So as these develops go along, I guess we're going to just share them. We are on a trajectory. Everybody knows that, who has Alzheimer's, we're on a trajectory. And this acceptance factor and this appreciation for your husband factor has been kind of a new development. And really, I like it a lot. 

Janna: He likes it a lot. 

Larry: This is a gift you're giving me, right? Yeah. I mean, I love to help. What I don't like is to start helping and then have me being pushed away. It seems hard to bear that. And that was that way for a while. 

Janna: We're working it out. 

Larry: Yeah. Yeah. You and me. All the way.

Janna: You and me all the way. 

Larry: So, you've been hearing from the horse's mouth and we're thriving with Alzheimer's. I feel like we're both in this together. What do you think? 

Janna: I think I'm carrying most of the responsibility. (Laughs)

Larry: Yeah, I'm just kind of like tagging along. But it is fun to be with you in this new... I mean, most of the time, throughout our marriage, you've been happy.

Janna: Oh, here, wait, let me record this. 

Larry: There's been a time. There have been times. And I don't want people to think that we have this perfect marriage or perfect relationship. 

Janna: I don't think they are that naive. 

Larry: But as Robin Williams said to Matt Damon in Good Will Hunting, which is a movie if you haven't seen it, you've got to get past the swearing.

He said, “The question isn't whether you find the perfect person. The question is, are they perfect for you? And I think you've been perfect for me. I've been perfect for you. And this 

commitment to love each other in sickness and health, we couldn't have anticipated in our 20s what that would mean. But at this point, it's working out. 

Larry: All right, with that, we're going to close it off.

Janna: So, I'm Janna, an Alzheimer's ThriverTM. Hoo-Ah

Larry: You're not in the Marines, but ...this is Larry, an Alzheimer's helper, I guess you could say. But I'm thriving as well, and it's been great. We're signing off. Until next time, please follow and like this episode so that you can have more of them. And we would love to be able to keep doing these podcasts voluntarily.

So, thank you so much for listening. And if you have anybody who might benefit from a little encouragement and having Janna in their corner, please do pass this along.

[Janna Closes Playing Flute]

References 

1.     Sleep problems & morning confusion – NIA
https://www.nia.nih.gov/health/sleep/managing-sleep-problems-alzheimers-disease

2.     Companionship & meaningful activities – Alzheimer’s Society
https://www.alzheimers.org.uk/get-support/daily-living/activities-dementia

3.     Dementia risk after surgery (peer-reviewed, Lancet EClinicalMedicine)
https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370%2822%2900457-6/fulltext

4.     Sleep & behavioral symptoms in Alzheimer’s – Alzheimer’s Association
https://www.alz.org/alzheimers-dementia/treatments/for-sleep-changes

5.     Hospice & palliative care – NIA
https://www.nia.nih.gov/health/hospice-and-palliative-care