Full Episode Transcript

Nancy Treaster: In this episode, we’re talking about memory loss “in the beginning”. When we say “In the beginning” we mean when you’re mostly helping your care receiver manage things (often behind the scenes), while also helping them maintain their independence. 

 

Nancy Treaster: We’ve got 4 main tips.

 

Nancy Treaster: The first one is to figure out what your care receiver is struggling to remember.

 

Nancy Treaster: The second one is to understand and help with what they can no longer do.

 

Nancy Treaster: The third tip is about getting other people involved, as you deem appropriate, and the fourth one is to watch out for UTIs. They can muddle up the whole situation.

 

Nancy Treaster: But let’s start with a candid conversation around memory, loss and memory loss. In the beginning, when Sue and I think about the seasons of dementia. We think of it in 3 main areas. First, in the beginning.

 

Nancy Treaster: Mostly, you’re helping in the beginning.

 

Nancy Treaster: Second, the messy middle. This is really where you’re starting to assert control.

 

Nancy Treaster: And third, later on, you’re really driving at this point.

 

Nancy Treaster: Now, when I think about memory loss in the beginning.

 

Nancy Treaster: Honestly, there’s nothing harder than to watch your loved one slowly begin to lose their memory.

 

Nancy Treaster: It’s like, it’s like a punch in the gut every day.

 

Nancy Treaster: One day you realize they don’t know their birthday, the next day you realize they no longer know their address or their telephone number or your birthday. They don’t know their ATM code. It just it feels like an avalanche of punches.

 

Nancy Treaster: And it really creates an emotional roller coaster for you. And while you’re on this emotional roller coaster you’re also trying to help your loved one get through the day so it’s really really hard, and probably one of the most difficult times.

 

Sue Ryan: It is because they are still in the phase where they know they’re forgetting things. So they’re currently aware of it. So you’re dealing with things where you’re aware of it, and you’re trying to help them navigate it. They’re also aware of it, and they’re going through their own series of emotions around it. So it’s that much more complicated for you.

 

Nancy Treaster: Very good point. It’s really emotionally charged, cause they’re upset, scared, and frustrated. And frankly, you’re upset, scared, and frustrated. Everybody’s having a hard time.

 

Sue Ryan: I’ve been on many caregiving journeys, and every journey has been different. Every journey has had something in the journey of the path of it and everything. It’s presented different symptoms. They progress differently. They’ve lasted different lengths of times. And so it, you know, like as you’re saying with the with the shock wave of reality. We can have done the journey before. But we still really don’t know what’s gonna happen. What we do know is it’s not going to go back to the way that it was.

 

Sue Ryan: And that’s a big adjustment for us as well as them.

 

Sue Ryan: Now there may be a day in there where all of a sudden they have great clarity, and we think, Oh, maybe it was wrong. But basically no, it it’s not going to. And so, you know, for example, when I was giving prompts, whether it was in the kitchen, or the bathroom, or the dressing, or anything like that.

 

Sue Ryan: I wanted to create an environment that was as close to what they were used to. However, it was done in a way that was going to be supportive of them where they were at that point in time. And that’s with a lot of a lot of observations that could change day by day.

 

Nancy Treaster: And that is, we’re good. That is, that’s such a good way to think about things and let we’re gonna cover that when we get to tip one cause. That’s that’s really what we need to talk about in a lot in a lot of in a lot of ways.

 

Nancy Treaster: I guess what I want to say before we get to tip one as well is this is an emotionally charged situation. Your care receiver is frustrated and upset. You’re frustrated and upset. Everybody’s grieving to some extent over the change that’s occurring and at the same time the onus is on you to take a deep breath and figure out how to get control of this situation.

 

Sue Ryan: But it’s tough on when you say get in control of the situation where many of us come. And again, I’ve been on a lot of journeys, Nancy. You’ve been on a lot of journeys when we say that, you know there are a lot of things we that aren’t in our control, or that we don’t know are gonna happen you think it’s gonna go this way. And it really doesn’t. And so when we’re doing this, you know that that when we’re talking about it it’s be as open as we possibly can to recognize it, and just being being very, very observant of everything, and the best place to start.

 

Sue Ryan: And for many of us this is the last place we either start or consider.

 

Sue Ryan: And the most important thing. And I’ve learned it. The hard way is for us, in the beginning of our journey, to start with our own self care and prioritize that get in the habit of prioritizing our self care in the very beginning. Self care isn’t selfish itself, love.

 

Sue Ryan: I’ve got stories, and we can talk about it, but but I encourage you in the very beginning to focus on yourself. You’ve got all these other things going on. Don’t give up yourself.

 

Nancy Treaster: Very good point. Very good point, and a lot of people wait too long to figure that out or never get there. So.

 

Sue Ryan: Or never, or they figured out the hard way.

 

Sue Ryan: Which is, by the way, what happened to me.

 

Nancy Treaster: We all do. I think so we’re trying once again, the reason we’re doing these podcasts is because we want you to get there much faster than we did, and we want your journey to much easier than ours was in in a lot of ways.

 

Nancy Treaster: All right. So let’s start with Tip one.

 

Nancy Treaster: We’re trying to figure out what they’re struggling to remember. As I said, everything from their birthday to their ATM code to their passwords. I mean, there’s so much to unpack here. Yeah, I can still remember the day I came home from work, and my husband said his ATM code didn’t work. His ATM card didn’t work.

 

Nancy Treaster: And I was like, maybe his ATM card didn’t doesn’t work right. So let’s get in the car and drive to the ATM and figure out what’s going on. So we get to the car. Drive to the ATM. I’m a little suspicious that it might not be the ATM card. So I say, well, you know, honey, show me what you’re doing.

 

Nancy Treaster: So the fact is, he really didn’t even know how to use the ATM machine anymore. He certainly didn’t remember his code.

 

Nancy Treaster: So you know, Punch in the Gut.

 

Nancy Treaster: And now we have to find a way around this, because I’m trying to help him maintain his dignity and his independence.

 

Nancy Treaster: So from then on, every time we got in the car to go somewhere. I was driving a lot at this point. I made sure I’d say, Do you need cash? He’d say yes or no if he said, yes, I’d stop by the ATM machine. I’m in the driver seat. Hand me your card. I’d use his card, get in some cash, put it. He’d put it in his wallet. No, nobody was any of the wiser. We pretended all was fine. He maintained his dignity, but got cash in the meantime. So you know, example of.

 

Nancy Treaster: Once I figured out what he was struggling to remember. I was able to help him maintains independence and have some dignity, but resolve the situation so that we could continue, you know, down our path? 

 

Sue Ryan: And Nancy. That’s a great example of something we’re gonna talk about a little bit later on, in this podcast episode is the truth, they need to hear.

 

Nancy Treaster: Good point.

 

Sue Ryan: What you did is very much an example of that. So in a few minutes we’ll talk about that. But I’m I’m gonna share an example of what I did in in the in the beginning, and I did this with most of my caregiving journeys is that I began a journal for each one of them, and it had my observations, and these observations were as much for me with my feelings, and what was going on, and where I was struggling.

 

Sue Ryan: And a and about the progression of it as it was about the changes they were going through, and part of the reason I wanted to make sure I had. All of that information is to be able to to figure out how to help gradually move them along. Remember what their patterns had been. So as soon as I started noticing changes, I got really intentional about observing or remembering what they had been doing, so I could make adaptations, and keep things the same as close to the same way as it was before. A quick example with my dad.

 

Sue Ryan: Very, very routine oriented person, my entire life growing up, eat at the same time, have the same food in the same location. All of that, and when I began to notice that he was missing steps in his pattern, or he would start to do something, and would forget what it was. What I started doing, for example, when he would get his breakfast out, and he would make the breakfast, and he had exactly the things in the routine. There were certain things. I went ahead and got out for him, for example, in the morning the bowl that he used for the cereal.

 

Sue Ryan: And this the silverware, and those things were out. The glass for the orange juice was out, the vitamins were already out, so instead of him, where he had them all put away, they were just easier for him, but yet he could still make his breakfast.

 

Sue Ryan: With my husband if for him he was struggling to make order with numbers, and he was a numbers Guy, and so I shifted the ways that that he used the numbers and brought things to him, so that the answers were more already there, and he could look at the answers. Instead of trying to figure things out.

 

Nancy Treaster: So maintaining independence clearly. But you’re helping, and sometimes in a very behind-the-scenes way, right.

 

Sue Ryan: That’s a great way of saying it is so often in the very beginning. It’s very behind the scenes, and part of what you’re observing is how well they get it.

 

Sue Ryan: But you’re also navigating. And this is important on the self care part.

 

Sue Ryan: Nancy, what you said, I call it drip grief. Yeah, this one little thing. I gotta do this now, and they don’t remember how to do this. And sometimes there are really a lot of emotions surrounding that for yourself. Be observing of those and honor those. It’s a big deal, even if it seems like it’s a little thing.

 

Nancy Treaster: Right. And we’re gonna talk later about a tip about getting other people involved. And and a lot of that is just to help you get through these little emotions, and and not little, believe me, they’re not little big emotions to be honest, especially at this point in the journey. Passwords. Another good example. Obviously, you want to get wedge your way in as best you can to all the computer passwords because they’re going away.

 

Nancy Treaster: They’re going to forget them completely. Eventually, they need to be prompted in the meantime. So you have to start helping if they’re going to even continue to use technology.

 

Sue Ryan: And one thing on that is, and start working with them ahead of time. And you, one of the things you could do, maybe, is is is be saying, you know, the kids want this, or we wanna have make sure we put everything in the same place. Sometimes it’s they don’t even remember the websites, much less the passwords. So combination of those things, and what we did is so that we would have all of our websites and passwords in one place, in case anything happened to us, our children would be able to take care of things.

 

Nancy Treaster: I think that’s great. That’s really smart, Sue. Honestly, the whole concept of just saying it’s for the children. Great idea.

 

Nancy Treaster: Bank accounts another good example. If you’re not on their bank accounts, you need to be on their bank accounts. I had one. My husband had one business bank account, where he had a consulting business.

 

Nancy Treaster: He! He! Set it up without my involvement. No big deal, I said. I need to be on your bank account. He actually was, had no problem with that as well, while he could still go to the bank and actually sign his name, which is also part of the problem. That’s why you have to do a lot of this early, because if you wait too late, they’re not capable of even showing up to fix the problem. Help you fix the problem.

 

Sue Ryan: Exactly. Yeah. Yeah. Well, and and one of the other things is like medical portals and part of what I would do for my husband. We we’re going to go to the doctor, and he goes just to sign in and give his information. I would have pre registered him.

 

Sue Ryan: And I also would have called the doctor’s office ahead of time and explained that my husband had dementia.

 

Sue Ryan: And that I was going to be there standing there to help fill out anything. But if they had questions, please be understanding of it. I never had an issue with the doctor’s offices being supportive of that. And again he felt like he was checking in and doing things.

 

Nancy Treaster: Right. Alright. They almost don’t even notice they just don’t.

 

Sue Ryan: I don’t notice in the beginning.

 

Nancy Treaster: And there is a little faking it like for the they would hand the paperwork, you know, to us, and I would say.

 

Nancy Treaster: You know you don’t have your glasses. Do you want me to fill that out? You know

 

Nancy Treaster: His dignity? He’d say, Oh, great! You know he had no idea I had to fill it out right, but for him

 

Nancy Treaster: It helped him maintain some dignity, you know. So you also did something brilliant early on, you know, in the beginning with the wallet, and I really think that’s awesome. Let’s share that tip.

 

Sue Ryan: I did a couple of things with the wallet. First of all, I made sure that I had my name and contact information in there. I had created business cards that that I would would I would take to restaurants that would identify that my husband had dementia, and but but I had contact information for me, and we’ll talk more about the the, the broader application of the business card. What I also did, though, is that before he had the chance to lose his wallet.

 

Nancy Treaster: Which was common.

 

Sue Ryan: Get where it was, and I’ve been helping several people where they just, and they think it’s been stolen. And so I would take the like the driver’s license.

 

Sue Ryan: I would make a printed copy of it.

 

Sue Ryan: I would change a couple of the numbers so it could not be used.

 

Sue Ryan: I would I have a little laminator? I would relamminate it so I would get something that looked like the cards they had, or do something else with it. So in their wallet they had the cards, but if somebody got the wallet they couldn’t use the cards for any reason.

 

Nancy Treaster: In case it actually did get stolen.

 

Sue Ryan: In case it actually did get stolen. This was another thing. Where? Where? When you go to the doctor’s office, and you give them their Id. They give you the Id cards. I had a set of the Id cards that worked, and I had already let them know that he was going to give them his id cards, and and they weren’t valid.

 

Nancy Treaster: Alright, let’s move on to tip 2, because Tip two’s sort of in the same genre which is helping them with things they can’t do, 

 

Nancy Treaster: Not being able to use the telephone.

 

Nancy Treaster: That becomes a very frustrating thing when they get to that point. You’re especially if they live alone. You’re really in a world or hurt. Not being able to use the remote or

 

Nancy Treaster: Halfway being able to use the remote example here.

 

Sue Ryan: You. You’ve got the other half of the Halfway.

 

Nancy Treaster: Yeah, exactly. Example. Here is all these, you know. I had get a text from my cable company every time you we purchase something. And so I was getting all these texts all day long with, you know. Thank you for buying this episode, of whatever whatever, and I realize he’s down there with a remote he doesn’t know what to do with it, but he’s

 

Nancy Treaster: But he’s buying stuff right left. So I thank goodness, leverage the cable Company’s child Safety Lock, where you can put a PIN that you have to put in before you buy something that’s that stopped that.

 

Nancy Treaster: But there is a lot of the rem confusion, with the remote confusion, with the telephone, confusing the remote for the telephone and the telephone, for the remote.

 

Nancy Treaster: So this is also where you’re helping. I would go down. Once I realized my husband was struggling so with the remote. I was still working mostly at home at this point, but I would make sure I would sit with him every time I had a break, and make sure he was.