Full Episode Transcript

Merritt Treaster 

In this episode, we’re sharing four tips to help young adults be more prepared after a family member is diagnosed with dementia. Ready? I’m ready.

 

Nancy Treaster

Okay. Merritt, you were about 21 when your dad was diagnosed. You were in college, off to college, but you were in the same city. So you got to see him periodically then. Tell me what you remember from that time. 

 

Merritt

Well, I remember after he was diagnosed that it came as quite a shock, not because we didn’t know something was wrong, it was obvious that something was wrong, but because I had convinced myself that it was something else. I did not think that someone who was just 60 years old could have a type of dementia. I was much more used to the idea that dementia and Alzheimer’s were a disease of your late 70s and 80s. Like Pap, my dad’s dad, who eventually  got that version of Alzheimer’s, which kind of was my perception. But after the diagnosis, I remember feeling like I wasn’t quite ready to, or I didn’t really know what to expect going forward, for sure.

 

Nancy 

Not surprising. 

 

Merritt

No, not at all. I didn’t have a resource like this podcast at all. That’s why we’re doing this podcast. Let’s start sharing tips. Yes. So these are some tips that I gathered after that experience all the way up until now. 

 

So tip number one would be to do what you can, but not what you feel like you have to do. So another way to think about that would be to assess what’s going on and come up with some boundaries for yourself that you know you don’t want to cross. An example on that from my personal life would be later on as my dad’s dementia started to progress, incontinence eventually came into play, which I know you guys just did a great episode about incontinence. It’s a huge issue, one of the biggest, and it’s something that I had to decide for myself. I was not comfortable helping with, just in terms of my dad’s care. It’s just, I’m willing to feed him, help him change, get him where he needs to go, make sure he’s not messing with anything, keep an eye on him. But when it came to the bathroom stuff, as it were, it was just a line I wasn’t comfortable crossing. 

 

Nancy

And reality was, I didn’t figure that out, and I don’t know if you had already figured it out, maybe you had. But I asked you, you had taken care of dad before, and we’ll talk about that later, but this was, that was earlier before incontinence had started, and I needed someone to look after him for half a day or something, and I asked you could you help.  You said, I’m not comfortable if it includes changing his depends. 

 

Merritt

That’s right, yeah. 

 

Nancy

And to be fair, I should not have put you in that situation. So when I talk about that in episode nine, which is our Preparing for Incontinence episode, specifically thinking ahead in terms of asking family members if they’re gonna help when incontinence comes around, is that something that they’re comfortable participating in? And most people frankly aren’t. 

 

Merritt

Yeah, and it’s totally okay to have that be a boundary.I think it’s a popular one or a common one for people. I agree. Because yeah, it’s not something that we really prepare for. You know, we prepare for having to deal with that with our infants, but we eventually grow out of that stage and we really don’t prepare for it to come back around the other way. 

 

Nancy

And Merritt, to be fair, this is also a place where lot of spouses and loved ones, children who are caring for their parents, my age, this is often when they decide to put someone in a care community because it’s not always even something that the spouse or the child is willing to deal with. 

 

Merritt

Exactly. It can become overwhelming very quickly, which I know you guys talk about. So that was just a personal boundary for me. You guys may have different boundaries, which are all totally fair. The important thing is to just make sure that you’re always checking in on yourself. It can be very easy to overwhelm yourself because you feel like you always need to be there for your loved one who needs care. But when you do that, you can hinder yourself a little bit and you can hinder their care. I know that Sue and my mom talk about that in a lot of different ways and a lot of different versions throughout these different episodes. But just remember, as the child or the grandchild of someone who needs dementia care, just always check in on yourself. 

You’re gonna feel uncomfortable with things and it’s okay to do that, but you just gotta be brave and let other people know how you’re feeling. 

 

Nancy

Agree, and it’s not always that the task is something you’re uncomfortable with. It might be the amount of time or what you’re having to give up in order to help. So you have to find a way, particularly as a young adult, where you’re trying to live your life. You have to find a way to live your life and find the balance. This is always about balance. What’s the right balance for you to participate in family caregiving, but also live the life that you need to live? 

 

Merritt

Yes, for sure. Okay, well let’s move on to tip two. 

 

Tip two is to record as much as you can, especially in the beginning when you’re able to communicate with your loved one without too many issues. What I say record, what I mean is maybe collecting some photos or voice recordings or videos are really great. Anything that really captures who they are because that version of who they are or how accessible the person that they are is to you is gonna go away slowly. And those recordings, those artifacts from who they are, those are gonna be really, they’re gonna increase in value over time. they’re really gonna, you’re gonna cherish them. I have maybe eight or nine voicemails that my dad left me and these were not emotional affairs at all. These were just, we’re talking like, you know, I’m stopping by your apartment later today, do you need me to grab something? Or are you gonna be able to come to this guy’s birthday party on the 12th, call me back when you get the chance? Even those kind of things, you don’t realize how special hearing somebody’s voice is until they lose the ability to use it. Those kind of things, I would say just try and stock up on them as much as you.

 

Nancy

And you’ve told me that the recordings, like the old family, VHS and video recordings. videos that we’ve managed to put online, plus the voice recordings, really bring them to life more than pictures, even though pictures is a good 

 

Merritt

Yes, obviously anything that you have is gonna be really important, but anything that captures them, either their voice or them as who they are in motion, anything where you get an idea of the way that they moved and lived in the world and interacted with people, those things are gonna be probably the most important. 

 

Nancy

And you’ve shared some of those with your girlfriend.

 

Merritt

Yes. So just as important as they are for you, there are gonna be people who enter your life, especially as a young adult, there are gonna be a lot of new people who enter your life who really are never gonna get the opportunity to know either your parent or your grandparent the way that you did. And so having these artifacts of them to share with them, to say like, this is who this person was to me,

 

Those are really really important something that also really helps my girlfriend who I’ve only been dating for about two years So she’s never really she’s never known my father as someone who’s been able to talk or anything like that Something else that really helps with her is the scrapbooks that my mom makes my mom makes a yearly book. She calls it The Book and It’s full of just photos just from that year so photos of all sorts of stuff and something I used to make fun of her about was kind of including anything she wanted in there, you know, trip to the doctor, unexpected trip to the doctor, or someone got sick or something. And when they were happening, I would say, Mom, why are you putting this in the book? This is, this is, you know, silly. But now it’s been 10 or 12 years since she started doing it. And so if I look back 10 or 12 years, I am curious about those kinds of things. You know, now looking back that long ago, I do kind of care about all the little things that happen. I would say just to summarize this tip, gather as much stuff on your loved one as you can.

 

Nancy 

You had another idea though, you’re really not ready to summarize. 

 

Merritt

My new idea is, and I haven’t seen this anywhere, maybe this is just my audio engineer brain, but something that might be really cool is to just conduct a little informal interview with either your grandparent or your parent and say, you know, if we don’t mind, can we sit down and just talk about your life? so many questions that I have for my dad that I just don’t get to ask him. So if you can search yourself and find those questions and sit down with somebody, the person who loves you and ask them these questions, they’d be happy to talk about them. Everybody loves to talk about themselves. And that recording would be just invaluable to you later on in life. 

 

Nancy

That’s really nice. One of my friends sat down with her dad. He has dementia but he had Parkinson’s first. So early on before the dementia kicked in, sat down and went through his, chronologically went through his life and then created a digital photo album that supports his life and he still has it in his room and he loves it. So it’s also a good memento for someone with dementia. 

 

Merritt

Yeah, yeah. they’re still able to read and process photos and videos and things, it is really helpful. 

 

Nancy 

And remember your dad even would look at the photo books for up until recently, probably in the last year or two maybe stopped. But he was looking at those photo books all the time before. So it’s good for them too. 

 

Merritt

Yeah, exactly. So we’re ready for tip three? 

 

Nancy

Yes, tip three. 

 

Merritt

Tip three is to accept that the child parent or grandchild grandparent relationship is gonna change. I know that sounds a little bit obvious, but it’s really not because those relationships are, eventually, as the disease progresses, they’re gonna get flipped on their head. The way that a parent -child or grandparent -grandchild relationship works is that the parent or the grandparent is responsible for the child or the grandchild. They take care of them, they know more about the world, they know more about what’s going on, they care for and they protect the child, and eventually that’s gonna be you.

 

And it’s okay for the in -between stage to be uncomfortable because it is gonna be uncomfortable. I think back to the first time where that really hit me was a scenario where my mom had a best friend and that best friend was at the end of her life and that was obvious to everyone. So my mom said, I have to travel out of state to go see her because this is gonna be the last time I can see her. And I said, yeah, I totally agree. My dad was solid mid-stage dementia and incontinence came like two months later. So my dad was still able to do a lot of stuff, but he was not able to be at home by himself. 

 

So, I came down to help take care of him and to watch him over the weekend. Things were going pretty good at the beginning, and then about an hour in, my dad came over and said, where is your mom? And I said, well, she’s out of town, she’s visiting her friend, who he knew, and she’ll be back on Sunday. And he said, when is she gonna be back? I said, Sunday. He said, okay and then he walked away. And then he came back about an hour later and said, where is your mom? And I said, she’s gone out of town, she’s gonna be back on Sunday. And he said, she’s gonna be back on Sunday? I said, yes. And he said, I don’t know about that. And so that was all weekend and it was pretty much nonstop. I think he was sleeping through the night okay, but I organized all the food, I kind of organized what we were gonna do, we watched a lot of TV and I followed him around. He definitely thought that was weird just because I needed to make sure that he wasn’t gonna get anything he wasn’t supposed to or wander off if he left the house. If he wanted to leave the house, I had to ask him where he wanted to go and convince him not to go. There was a lot that went on and while it was all happening, I was so busy, so concerned with making sure everything was okay that it really didn’t have time to process it. But then my mom came back and everything was all good and I went back to my house and I just was, I felt odd for a long time afterwards. It all hit me at once that this person who used to do all that kind of stuff for me when I was a little kid, now I was the one who was responsible for him. And so being responsible for your grandparent or your parent, it’s gonna feel weird and you need to give yourself permission to feel that discomfort and acknowledge that that discomfort is okay. It’s part of the reasons why this disease is so unfortunate. It’s just, you know, things that you’re used to get turned upside down. I say it feels like a punch in the gut. It feels like a punch in the gut. And don’t convince yourself that you shouldn’t feel that way, that you need to somehow be above feeling that way because it’s your parent or it’s your grandparent or whatever. Nobody’s above feeling that way. It’s gonna happen to everybody and it’s totally okay.

 

Nancy

I agree. Okay, well let’s hear about tip four.

 

Merritt

Tip four, I think, is the most important one, and that is that as the disease progresses, you need to remember that the person that you love is still there. And if you’re at the beginning stage, you may think that tip sounds a little bit silly, but if you’re towards the end, it definitely gets harder and harder to remember that because eventually, they don’t have the ability to go to the bathroom by themselves or… 

 

Nancy

They don’t look you in the eyes. 

 

Merritt

They don’t look you in the eye. They have trouble acknowledging that you’re even there. The way that we interact with each other is stuff that we learn over time and the stuff that we learn all goes away. So it really becomes much more about catering to them. If you’re gonna go spend time, if I go spend time with my dad, I need to be ready for whatever he wants to do, you know walk around, and he may be asleep the whole time. But I’m able to be comfortable and sit there and hanging out with him because I can see him there still. I can still see the person that I knew because at the end of the day, it is still the same person. It’s just the same person with a lot less tools than we have. 

 

Nancy

But you still give him a big hug and you still say, love you, dad. And honestly, you get a smile out of him. So I do believe in his heart, he still knows who you are. Now, Pap’s not as far along as dad in his dementia, but often I’ll be over at their house and someone will say, well, who’s that? And they really are, they’re testing him, like, what’s her name? Actually, I think they even say, what’s her name? And I hate that because you could see the agony on his face because he doesn’t know my name but he’ll say, she’s family. And so in his heart, I’m family. He doesn’t know my name. know, your dad doesn’t know my name, but in his heart, I’m family. And I know when you go over and see Pap, you have a similar reaction. 

 

Merritt

Yeah, I think that something that you learn as things progress with dementia is that the things that we think are important, like somebody’s name, they’re really not that important. They’re not as important or they’re not as important to the person as how they feel about you. How they feel about you really doesn’t ever change. But their ability to remember your name or why they know you or things like that, that is gonna change. But the way they feel about it is bigger than words and that’s always gonna be there. And it’s still there and it’s still, if you look, you have to wait. But if you wait long enough, they’ll show you that it’s still there. 

 

Nancy

I think that’s great. 

Let’s summarize. In this episode, we talk about helping young adults be more prepared once a family member has been diagnosed with dementia? We had four tips and they are? 

Merritt

They are, do what you can, not what you feel like you should. Try and record as much as you can, especially in the beginning. Remember that your relationship, the parent -child relationship is gonna change. And number four, the most important one is to remember that that person that you love is still there. 

 

Nancy

I like all those tips, those are awesome. If you have tips that you think would help young adults,

If you have tips that you think would help young adults who once a loved one is diagnosed with dementia please go to our Facebook page or our Instagram page and put those tips out there. The links to those pages are in the show notes Also, if you haven’t already, please subscribe to our podcast And if you like our podcast, please rate and review.  The links for that are also in the show notes.

 

We appreciate the time you spent with us today. I know particularly as a young adult this probably feels like a lot to think about and to be prepared for.  Hopefully this episode will help you be more prepared.