Category: Podcasts

Welcome To Patty's Place

SPEAKER_00
0:09

Welcome to Patty's Place, a place where we're going to talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. I want this to be a place where you know you're not alone and we can talk about those difficult subjects. I'm your host, Lisa. So uh grab your cup of tea, your cup of coffee. If you're having a really bad day, that glass of wine, and come join us today.

Meeting A Senior Care Advocate

SPEAKER_00
0:31

So I'm excited. Today we have uh Barbara Lambert. She is the founder of Home to Home for Seniors and a Trusted Advocate for Families who suddenly find themselves searching for care and have no idea where to begin. Welcome, Barbara, to Patty's place.

SPEAKER_01
0:45

Thank you, Patty. I'm honored to be here today.

SPEAKER_00
0:48

So this is such a big, overwhelming topic. So that's why I'm excited to talk about you. So where does somebody even start with this, with their loved one?

SPEAKER_01
1:01

So unfortunately, you know, dementia doesn't come with any announcement. Creeps in to somebody's life and everything seems fine until all of a sudden it's not. So generally it's little things that they start to notice, and then things start to get greater and greater and greater to the point that you know nothing is how it used to be anymore, nothing is normal. And um, you know, it starts with the small changes and then it just speeds up.

SPEAKER_00
1:29

So, what led you to start this foundation?

SPEAKER_01
1:33

So

The Nursing Home Comment That Stung

SPEAKER_01
1:34

years ago, um, my grandma was living with my mom and they could no longer do the care. They had tried many, many things, and she was up all night and having hallucinations. And so they eventually wound up moving her into the nursing home. And I didn't live in the same town, but I would drive there, I was about an hour away to visit her. And sometimes I would go and she'd have on the same clothing, the same food stains. And I thought, geez, there's you know, they're not caring for her. And so I went to the administrator and told him I was concerned, and he said, you know what? If you want us to care for your grandma like you would, then take her home.

SPEAKER_00
2:18

Oh my god.

SPEAKER_01
2:20

I still shake my head in disbelief at the his words, yeah. And so I thought, no, no granddaughter, no mother, no son, no wife, no friend should ever have to hear take her home as an option for good care. Yeah. So I decided to advocate for seniors and be that person that finds them the good care. Because I, you know, everybody's going to tell you they can do the care, but through experience, you know, we find who really can and who can't.

SPEAKER_00
2:52

It's very true. And it's very overwhelming for the family member to try to find the right place because you have memory care and you have assisted living and you have skilled nursing homes, and you don't know where the right place is for somebody. Right. Uh with it.

SPEAKER_01
3:10

That's what I help them figure out. They they don't need another AI, no, they don't need another Google to help them and add to the confusion. They need a guide that knows the terrain. And that's what we do.

SPEAKER_00
3:22

Yeah, because when I had a joke for my mom, because um well, and it was during COVID, so that added even more to it. Um so but I was like, they were like, you're not gonna be able to take care of her, and I was like, Oh, oh, okay, you know, and I was like looking for memory care, and not all facilities have memory care either for dementia patients, so you you have to look for that as well. And and it became more about her safety than and obviously good care as well, too. And for my dad and I, we wanted her to be close so that we could be there all the time, too, uh, with it.

When Home Care Stops Being Safe

SPEAKER_00
4:01

So, what does appropriate care mean for someone living with dementia?

SPEAKER_01
4:06

So, appropriate care is care that can meet the ongoing and ever-changing needs of somebody with dementia. And a caregiver alone, I would say most often, more often than not, can't carry that load.

SPEAKER_00
4:22

No.

SPEAKER_01
4:22

And that's a that's a big mistake people make. And so they wind up giving care out of guilt rather than love. And so the person winds up getting compromised care because somebody can't make room in their head that it's okay to hand off the care when it's beyond what you can do. And most of us are not trained for what's coming down the road with dementia care.

SPEAKER_00
4:46

I would agree with that 100%. So, what do you say to some to someone who says, I'd never put my loved one in a home?

SPEAKER_01
4:55

Well, that's denying somebody some some care that they may need. If the care, if it's beyond the caregiver's skill level, where are you gonna put them? What are you gonna do? Right. What if they're up all night? What if they're leaving the house and wandering and getting lost? Where are you gonna put them?

SPEAKER_00
5:11

Right, or they're falling when you run out of it.

SPEAKER_01
5:15

Yeah, yeah. So falls, things can force a change if you know there's falls, if there's constant dehydration issues, constant hospital calls, EMS calls. Unfortunately, they're there to help, but they're also there to enforce to make sure this person gets the care. So that could also lead to social services coming in and helping intervene. And a lot of times it's it's the family guilt that is very hard to make room for that, you know, you're not cheating them out of care, you're getting them the care that they need that you're not skilled to give.

SPEAKER_00
5:51

Exactly. And there are some people that, you know, they didn't mean to say that to me. Uh, and and I would always say, because it it was probably the hardest thing I ever did was having to take my mom there and leave her there. It was horrible. It's very emotional. It was horrible. And I knew she was in the right place. I knew I was doing the right thing for her. Like you said, I knew I couldn't take care of her the way she needed to be taken care of, but it was horrible. The guilt, you know, and in the end, she I I made peace with it because she was I knew we found the right place for her. You know, like she after a little bit, she didn't know any, she didn't even know she had never been there. She thought it was her grandma's house.

SPEAKER_01
6:37

Yeah.

SPEAKER_00
6:37

Uh with it.

SPEAKER_01
6:38

And that that's helpful to the family when they're feeling yeah good about living. So, you know, somebody looking in from the outside and pointing the fingers, it's like someone telling you you're raising your kids wrong.

SPEAKER_00
6:49

Yeah, yeah, that's true. I didn't thought about that. Yeah.

SPEAKER_01
6:52

You know, no one's in your shoes. Nobody's there behind the closed doors and sees what's going on at 2 a.m. to 5 a.m. that nobody's sleeping and well, because there's arguments going on.

SPEAKER_00
7:03

Well, and my mom got out twice in the middle of the night. I've never been so scared in all my life. I caught her right away, but I was like, oh my God, I so will never, when you hear that on the news, like you do not know the story behind how that could have happened. And they're fast when they want to be.

SPEAKER_01
7:21

When they want to be, yeah.

SPEAKER_00
7:22

Yeah.

SPEAKER_01
7:23

What do you mean her walker?

SPEAKER_00
7:24

Yeah. I was in here, like, wait, where are they? Yeah. Uh and I'm calling my dad at 4 30 in the morning because my mom was living in with me because she was uh I thought she was gonna kill my dad. Like she just had this anger and everything with him. And I called him, and the the next morning he came and he like changed the locks and everything, but I still was like in the middle of the night worried, you know, and I was right there. I bet. I

Wandering, Falls, And UTIs

SPEAKER_00
7:48

bet.

SPEAKER_01
7:48

You know, uh funny things happen with dementia. Um, one of the things is a urinary tract infection. I don't know if you experienced that with your mom. Um, but I had I was helping a couple, husband and wife, and they were living alone together. She had dementia. He was the caregiver. He was very hard of hearing, very hard of hearing. And the daughters had called me because the doctor said that they probably needed to, you know, get mom somewhere secure because she was having these chronic UTIs and um wasn't able to make safe decisions for herself and had been caught wandering a few times, found wandering a few times from the house. And so um the daughter called me and she said her mom was packing up and trying to leave, and she was being aggressive, and no one could reason with her. And I said, Well, you know, sometimes packing up and wanting to leave, believe it or not, is a symptom of a urinary tract infection. And she's like, It is. I said, Yeah, I said, I would call your dad and you know, suggest they take your mom in and have her checked. And she said, Oh, dad lives 30 minutes away, and it's you know, it's impossible to talk to him on the phone, and I don't have time to go there and talk to him in person. She said, We'll just wait and see how it goes. So I called, you know, a couple weeks later, still hadn't taken her to the doctor. Mom was still packing up and getting aggressive. And um, so I reported to the case manager at the doctor's office who had referred them to me. And um one morning, a few days later at 5 a.m., the case manager called me and she's like, Barb, did you hear? Did you hear on the news this morning? I said, No, I'm just getting up. What? And she said that this lady woke up in the middle of the night, didn't know who was in her bed, and went and got a knife out of the kitchen drawer. Uh and she didn't, you know, stab him but lacerated him. And wouldn't you know he was on blood thinners? So that looked like there was a big massacre. Uh and she had gone the way they found out about it, she had gone to the um what do they call them? Not a brew house. What do they call them here in Texas? Um, something like that. Anyway, it was the pub, the bar.

SPEAKER_03
9:54

Oh, gotcha.

SPEAKER_01
9:55

Covered in blood in the morning. And so they called the police, and that's how they found the whole situation. And so from there, you know, it was a status change for her. That urinary tract infection had become so bad and ravaged her so bad that it became a real status change in her dementia, a negative one. And we had to, you know, move her into a permanent memory care facility for the rest of her life. But so waiting until things, you know, you know things are bad, but waiting until you think they're bad enough is a mistake I often see.

SPEAKER_00
10:29

Well, and my dad had a hard time dealing with that. He didn't want to accept it because I had noticed for quite a while that something wasn't right. And finally, when she didn't know who we were, uh luckily my parents had done powers of attorney and everything years before that. And I said to him, like, we have got to do something. She doesn't know who we are. And um, you know, so he finally was able to talk her into going to the emergency room because she would not go to the doctor. I tried. I tried many times, and she wouldn't do it. Um, but when she came back from them uh the hospital stay when they diagnosed her, that's when she started just she was screaming and yelling and packing up. And, you know, she I said, I said to my dad, I go, she can't stay here because I was afraid that I was gonna get a call from the police, you know, that she was gonna do something. Yeah, you know, so she stayed with me for a month as we tried to figure out where, you know, where we could find her and

Guilt, Burnout, And Respite Support

SPEAKER_00
11:22

that. So, what advice do you have for adult children who feel guilty about considering outside care? Because I know a lot of my friends are going through that right now.

SPEAKER_01
11:31

Educating themselves on that, educating themselves. Why, why would they do that? You know, if you don't get care, if we don't get care for the caregiver, the caregiver is going to go down next, and we're gonna have two crises going at the same time. And I know myself from my own experience when my dad would um I always get emotional when I have to tell the story, but it's true. My dad would come from Chicago to Texas to come visit me. And every time, every year he would come, I would notice the change in his dementia. But my siblings that look closer didn't see it as drastically as I did because I was just seeing it a year at a time. And one time he came and um I was working and I was on the phone and he was pacing, pacing, pacing. And um, so I got off the phone because I could see he really wanted to ask me something, and he wanted to ask me when we were going to church, Saturday or Sunday. And so I answered, I said, Saturday, and I gave the wrong answer. Somebody with dementia, they just need a yes, no. They don't need well, if this, if this conditions, exactly, and I know that, but here it was, my dad, so nothing applies. I can give you advice all day long, but if it's yourself, right, right. You can't see the forest through the trees. So I'm like, Dad, if I'm not busy on Saturday, we'll go on Saturday. Otherwise, we'll go on Sunday. Okay, okay. Five minutes later, same thing. I'm on the phone. He's pacing, pacing, pacing, getting deep gas of breath. And I can see he's getting more and more disturbed. So I get off the phone, same question. I answer it the same way. Happens again, third time. Pacing, pacing, and this time he's starting to talk to me while I'm on the phone. So I had to quickly wrap up, wrap up the call. And I go, what, dad?

SPEAKER_03
13:12

Yeah.

SPEAKER_01
13:13

And he goes, When are we going to church? And I'm like, Dad, how many times do I have to tell you? Yeah. I just snapped. Right. And my point is, that's not a good caregiver. If it was your if it was your dad, I wouldn't have snapped like that. But it was my dad, and somehow I felt that it was okay to talk to him that way. And so, as family, if you don't get the help and you're snapping off at them, you're a crabby caregiver, they don't deserve that. This is a disease, it's not them. My poor dad couldn't help asking the same darn thing over and over and over again. And, you know, I should have had more patience with it, but I didn't. You know, trying to work and then trying to look after him and figure out why he's so upset. So getting care is going to make you a better caregiver. If you're listening out there, caregivers, it's going to make you a better caregiver so you can take a break. And a caregiver can come for maybe three or four hours, a couple times a week, which I think is a great idea because it's going to give you a break. You can either have the caregiver take your loved one out of the house, you know, get their hair done, go shopping, look at Christmas lights, whatever's going on. And you can do things in the home, or it gives you a chance to leave the home and take some time out for yourself. Even if you just go sit in Starbucks with some friends for a couple hours to get that break. Because in doing so, your loved one is getting used to somebody else meeting their needs besides a family member. Because the day may come where somebody has to meet their needs 24-7 that's not a family member, and at least it's going to kind of buffer some of the change that's about to take place. So I think it's a great idea to get a paid caregiver and they're not another family member. I mean, another family member for sure for help and such, but as that dementia starts to increase and the care needs increase, you have to have a plan. And knowing what the plans are, the options are, and what the costs are, if there's any funding, is what someone like myself helps families do. So if they're not waiting until they're in full-blown crisis and the costs are exorbitant because we waited so darn long, and you know, the care is significant.

SPEAKER_00
15:31

Uh yeah, I would agree. And the cost is ridiculous. And it's not always cheaper either to just have people come in 24-7 as opposed to having them in a memory care facility with it. You know, you you have to weigh uh all the costs and and their safety as well, too. And and I always try to tell everybody, and it took me a long time to learn it, that you have to enter their world. You know, if they say the sky's green, you go, yeah, it's a really pretty shade of green today, you know. Like that's right.

SPEAKER_01
16:00

You meet them where they're at. I think the Alzheimer's Association says meet them in their journey where they're at. Join them in the journey. Yeah. Join them in their journey wherever they're at. And not to be ruling them in with reality checks. You know how upsetting that is and scary that is?

unknown
16:14

Yeah.

SPEAKER_01
16:14

Someone who thinks it's 30 years earlier and you're giving them the reality check that somewhere they've lost the last 30 years. That's that's scary. And somebody with dementia, one of the best things you can do for them, and one of their largest, biggest needs is to feel safe. Yeah, if you're giving them reality checks, that's that's rocking their world. It's not letting them feel safe.

SPEAKER_00
16:37

Yeah, and I think about that sometimes, you know, when my mom was going through it, and even now, like how scared she must have been with it. I I think about that all the time.

SPEAKER_01
16:48

I saw it with my dad when he had that eerie awareness that he should know things that he didn't know and he couldn't figure out why, he couldn't figure it out and how troubling that was to him. I remember one time when he was at my home, he um he opened up an old email and he thought he needed to get ready to go to school. He was a teacher.

SPEAKER_03
17:11

Okay.

SPEAKER_01
17:12

And um, so he was he was asking me where his briefcase was, and you know, telling me, you know, he's trying to get ready to school, couldn't find anything. And you know, he'd been retired forever. And I said, Dad, I just saw in the news that the school's closed today. There's been a water main break.

SPEAKER_03
17:30

Yeah, yeah.

SPEAKER_01
17:31

Save his dignity and not give him the reality check that he retired 25 years ago.

SPEAKER_00
17:37

Yeah. And I know a lot of these decisions can create a lot of tension within families.

Family Conflict And Planning Ahead

SPEAKER_00
17:42

So, how do you help families navigate this emotional dynamic?

SPEAKER_01
17:48

Well, the the tough love I want to say is where is the power of attorney's given that power for a reason?

SPEAKER_03
17:54

True, true. Yeah.

SPEAKER_01
17:56

Because they were trusted to make the decisions, right? You know, more so than maybe the rest or felt more comfortable with the rest. Um, you know, when they're all on the a different page, education is huge. Educating them about the disease, letting them see and experience the life of what a caregiver is. You know, the one that lives the furthest away participates the least amount of in doing the least amount of care just because they live that far away, is the loudest voice on what to do. And what you're doing wrong.

SPEAKER_03
18:29

Yeah, I can see that. I can see that. Yeah.

SPEAKER_01
18:32

And I saw that a bit in myself.

SPEAKER_03
18:36

Yeah.

SPEAKER_01
18:37

But um, so there has to there has to be an educational point. Sometimes you need to bring the doctor in to maybe have a family meeting or a conference call with the family. Sometimes I do that um with the family. And then there's also a great person. They're called aging life care managers.

unknown
18:56

Okay.

SPEAKER_01
19:01

But um, for a family that has the financial means, they come in and they get a whole picture of what's going on, you know, who's providing the care, how the care is going, the stressors, the all the concerns with medication and safety and family relationships that are now starting to fall apart because nobody's agreeing about care. And they come in and they make a recommendation for what to do for care. And often then they switch them over to someone like myself to help them find the right care option based on you know the budget, the location, such as that. But sometimes, you know, we have to have like the mediator come in with that. But yeah, I mean, there's always somebody in the family. The more siblings there are, the more likelihood there's somebody that needs the money.

unknown
19:47

Yeah.

SPEAKER_01
19:48

When mom and dad die, there's something left, and it didn't all go to the memory care. Yeah, yeah. You know, 40s, 50s, no job.

SPEAKER_00
20:01

Yeah, it is, you know, they bring up so much uh for it, and to be able to um really be able to put that person first, their needs first, it is hard. It's really hard to do.

SPEAKER_01
20:18

And I have families that tell me that they think that mom's doing that on purpose.

SPEAKER_00
20:22

Oh, I've heard that too. Yeah.

SPEAKER_01
20:24

Yeah. Or dad just wants attention. He's always been that way.

SPEAKER_00
20:27

Yeah.

SPEAKER_01
20:28

So, you know, denial is great. Everybody likes to jump on that wagon.

SPEAKER_00
20:32

Exactly. You know, and and I I'm like, they're not doing it on purpose. You know, you you know your loved one, they wouldn't do that on purpose. But dementia is such a huge thing that it's it's hard to digest and it's hard to process and to see your loved one that way. It it really is.

SPEAKER_01
20:51

I mean they're slipping away, and there's so much grieving that starts early on with dementia. There, there's grieving the diagnosis, there's grieving the loss of independence. There's so many stages of grieving that happen during this time that um you know it gives you a little bit of time to grasp it because you're seeing them fade away, and then when they finally do succumb to the disease, it's almost a relief because the suffering that they've gone through. And some people, dementia moves pretty fast. Usually the younger you are, the faster it moves. Yeah. In others, it lingers with severe symptoms for years.

SPEAKER_00
21:31

Yeah. Yeah. So it's hard to predict. Yeah, and I think that's why people have such a hard time with it, because it's not like cancer. Like you you understand that where dementia just it isn't like that with the stages and the progression. Everybody is different. And it's hard.

SPEAKER_01
21:47

I do um I volunteer, I'm a speaker for the Alzheimer's Association, and people don't understand when they tell me that their mom has dementia or their dad has dementia, and I ask them what kind, they don't know.

unknown
21:59

Yeah.

SPEAKER_01
22:00

It'd be like the doctor telling you you have cancer, but they're not telling you what kind. Yeah. You need to know. Is it lung cancer, brain cancer, breast cancer, bone cancer? And for dementia, we need to know is it Lewy body? Is it frontal temporal? Is it Alzheimer's? Alzheimer's dementia is the most prevalent form of dementia. We need to know. So we need to know how to prepare for it. Now, my dad had vascular dementia. And for him, he kind of followed the textbook. It moved very slowly. He would have good and bad days. Some days you could have a great conversation with him, and other days he was kind of discombobulated.

SPEAKER_03
22:38

Yeah. Yeah.

SPEAKER_01
22:40

Um, and then went for vascular dementia, then all of a sudden it just like jumps off the cliff. Oh, yeah. He celebrated his 90th son's birthday in April, and then in September, the end of August, I think, was his funeral. It was that fast.

SPEAKER_00
22:57

Yeah. Yeah. My mom um she probably would be more considerate more on the early onset. She well, she passed away 10 days before her 76th birthday. Um but I know she had the symptoms way longer than she was actually in memory care. She's in memory care like three and a half years. So she probably started having them in her 60s, I would say. Uh yeah.

SPEAKER_01
23:22

Well, once the diagnosis comes, and once it gets to a point that it's so bad, then you can stop and look back. But while it's going on, it's you know, nobody wants nobody wants to come to believe that that's a diagnosis because we have an idea of what the trajectory is going to be.

SPEAKER_00
23:39

Yeah, yeah. And um, you know, and there were so many things that I knew were not my mom, you know. Just I I tell the story of how like, you know, she she was having accidents and things like that. And I used to be able to get, you know, be able to change her her pants and things like that. But I got to a certain point, she literally would tell me, Well, then don't look, who cares? I'm like, but mom, there's a stain on your pants. Oh, so what? She would be like, you know, and it so was not like her. Um, but then I knew the caregivers were coming and they were able to do it for her, you know, for it. Uh, because sometimes she'd come out with some really funny stuff. And I, you know, I'd be like, okay, they do.

SPEAKER_01
24:16

Yep. We there's a lot of funny things that, you know, if you can find the humor along the way, it may it's not making fun of them, it's just the situation sometimes can be a little bit corny. Yeah.

The Hospital Stay Window Of Opportunity

SPEAKER_01
24:27

You know, before I forget, I wanted to circle back around to something you said when you took your mom to the hospital and you knew that you know you needed to make a change then. When I speak to families, and usually nobody calls me early on, right? Starting to go wild. Right, right. And we talk about windows of opportunity because um you saw that the situation was deteriorating, that a move was probably going to take place, but yet you didn't want to do it, you probably didn't know how to do it. How would you, you know, tell your mom, tell your dad, whatever. But a a window of opportunity that often presents itself is that hospital stay. And it's easier for everyone. From I'll use you for an instance, it's it would be easier for your mom, for your dad, and for you that when she discharged, that she didn't discharge back home, she would discharge to her new home. Because it makes more sense um logically, because she needs this new level of care. Emotionally, to us, it's very hard to move from home to a facility. It's easier, you know. When we go usually in the hospital comes the rehab stay, from the rehab stay, you're either going back home or yeah, you know, to a level of care. And it's just it's smoother, I think, transitioning when it happens that way.

SPEAKER_00
25:46

Yeah, unfortunately for my mom, it didn't. Um, like I said, she went there. Yeah. Now my dad is actually in that particular situation. He doesn't have dementia at the moment, he's got other issues going on. So he has to go into assistant living, but he's still in the hospital right now. So for him, he's gonna go from rehab to that. So I'm gonna get learning all the sides of things here with it.

Comparing Care Levels And Costs

SPEAKER_00
26:12

So you offer a free service to help families find the right care. So, what does the process look like and why do you why is this so important?

SPEAKER_01
26:20

Well, it's very important because people make a lot of mistakes when they don't know what they're looking for, they don't pick the right level of care. So the process is somebody gives me a call and they tell me, um, you know, I think I think my mom needs assisted living. And so then I need to know the story. I need to know, you know, where is she living? Is she living alone? How's she doing? You know, what are the concerns? What are the safeties? How about her medications? How does she ambulate? Is she showering? Is she able to keep house? Is she getting new good nutrition? I mean, I need to know all those things to know how to help. And so um, based on some of the pieces that are missing or that are needing assistance with, then we identify um is she safe enough to continue on home? And she just needs a little bolster of some care. Maybe she needs some meals on wheels and a caregiver to come in and help her here and there. Maybe she needs a little home health, you know, coming in on top of that. And then we talk about the cost for that because it is it's very expensive to keep somebody home. It's generally a minimum of $30 an hour at least, depending on where you live. And most caregivers want a four-hour minimum, and most of them want two or three times a week, and you almost have to do that if you want the same caregiver.

SPEAKER_03
27:42

Yeah.

SPEAKER_01
27:43

Which is important for somebody with dementia. Even that routine. So we can get somebody in there and keep them home, and then that's eyes on when you're not around. We can kind of let you know how mom's getting along when you're not around. And you know, when they go in, you know how they found her, how she was doing, or dad, how they're getting along. And then um, if the need starts to increase, or if staying home and staying safe is no longer affordable, then we have to look at the different levels of care. There's you know, independent living. Some independent livings are very independent, some look like a mild assisted living.

SPEAKER_03
28:21

Yeah.

SPEAKER_01
28:21

Depending on where you're looking. I mean, they're not all alike. Or assisted living is for people that need that assistance with their personal care. You know, personal care delivered in the privacy of their own apartment. Usually they bring their own furniture and independent and assisted living. And then memory care is for those that can no longer manage their day, and they need uh 24-7 supervision and they need their day managed. They need to be reminded to come eat, they need to remind to drink, they need to be reminded to toilet. They can't toilet that's managed for them. They do all their laundry, they do everything for them.

SPEAKER_00
28:58

And that is overwhelming to figure it all out. Now, what is now what is then the difference if somebody goes into a say a skilled nursing home?

Medicare Ratings And How To Visit

SPEAKER_01
29:09

So a skilled nursing home varies state by state. Okay. So Texas, um, which is where I'm at, Medicare had them rated as the worst nursing homes in the United States. Oh, okay. So if you're in Texas, maybe let's talk about another option if we can.

SPEAKER_00
29:30

And where can people find that Medicaid rating?

SPEAKER_01
29:34

It's Medicare rating. Oh, sorry, Medicare. Medicare.gov.

SPEAKER_00
29:38

Oh, okay.

SPEAKER_01
29:38

So these aren't the Yelp ratings or the Google ratings. These are Medicare ratings. Right, right. Okay, and if there's a little red hand next to the nursing home you're looking at, then it means stay away.

SPEAKER_00
29:50

Okay. See, these are things good to know because people have this misconception, too, about that it's horrible. Yeah.

SPEAKER_01
29:57

I remember I saw one that was a five-star nursing home. And um I went visiting first. And when I went there, they told me they were a five-star, and I thought they were kidding me. It it smelled of urine so bad in there. Yeah. And in the administrative office, there are those big things of like air wet or for breezes all over. It was enough, you know, it smelled like some kind of wilting flower in there. And the general population, the urine smell was so bad. And they were bragging about how they were a five-star. And so when I went home, I looked it up and I thought, oh my gosh, how did they get to be a five-star?

SPEAKER_03
30:35

Right.

SPEAKER_01
30:35

It did say five star. So five star, I learned, can be six months old. The rating. Okay. The rating on Medicare can be six months old. So if you would have made a decision and moved your loved one to that nursing home that had that five-star rating. I don't know. I I think that was a fluke. It's never been a five-star since I've been in the business.

SPEAKER_03
30:56

Yeah. Yeah.

SPEAKER_01
30:57

I don't know how it got to be. But if you would have gone on that alone, that would have been a sad mistake, I think, for to move somebody there. So you need to visit them. Let the stars be a guide, but not a decision maker. And for nursing home care, you know, we know the universal issue is not enough staffing.

SPEAKER_03
31:14

True.

SPEAKER_01
31:15

And so I always suggest that you need to pick a nursing home that's close to where the person who will visit the most lives. And you know, when somebody moves to the nursing home, you're moving yourself or whoever the person is visiting the most to that nursing home as well. Because they need to be there every day to advocate for them if the person can no longer advocate for themselves.

SPEAKER_00
31:39

I would agree that that's that was one of the biggest decisions my dad and I made when my mom had to go into memory care. We knew we wanted her close by. And my dad and I did go every day for it. So not only did we see her, and I know that helped her, but then we also were able to be like, hey, her room hasn't been cleaned today, or you know, what's going on here? Something's not right, or hey, can you call the doctor here for it? So we were always on it. And then we got to know all the caregivers too. So like they were be able to tell us. They could call us and be like, hey, we noticed this today with her. So it is, it's so important, you know, that I think two people get that misconception that they think, oh, you you drop them off and then you never go. No, you're still caregiving for them. You're you're just advocating.

SPEAKER_01
32:26

That's a choice you make if you never go, right?

SPEAKER_00
32:28

Right. Yeah, you're just advocating in a different way for them. That's right.

SPEAKER_01
32:32

You're you're kind of overseeing now.

SPEAKER_00
32:34

Yes. Yeah, it it's just as important. Yeah.

SPEAKER_01
32:38

The memory cares, you know, they're they come in different categories. There's some that may have 60 people in them, and there's others that may have 16. So somebody who's more active and needs to be more kept more busy and involved and out of trouble, bigger is better. For somebody who really needs more one-on-one care, they're not ambulating so much anymore, they're really relying on somebody else to meet every single one of their wants and needs. Smaller is better.

SPEAKER_00
33:04

Yeah. Yeah. Yeah. So you definitely have to look at all of those things. Uh for

Socialization And Signs It Is Time

SPEAKER_00
33:11

it. So, what signs do families often miss that indicate it's time to explore different options?

SPEAKER_01
33:18

Well, I think it's some of that falls under um the denial. I mean, the falls. Falls are a big sign. Um, up all night, not sleeping, sleeping all day.

SPEAKER_03
33:30

Yeah, yeah.

SPEAKER_01
33:32

Um uh messing up their medications, withdrawing. Let's say that dad always loved football. Every football season, he was in front of the TV, he was going to games, and now all of a sudden he's withdrawn from that.

SPEAKER_03
33:43

Okay.

SPEAKER_01
33:44

Doesn't do it anymore. Things that they used to do, they no longer do. Maybe they were real social and now they no longer want to go anywhere because finding the right words or remembering who people are is too hard for them anymore. So withdrawing from things that they once used to like to do, trouble finding the right words.

SPEAKER_00
34:04

And I also think too that people don't realize how important that socialization is, even if your loved one is going, say, into assistant living just because maybe that maybe they're falling and they need that extra help.

SPEAKER_01
34:17

And that socialization really does help them, you know, albeit somebody is huge, especially with um as we get older, that saying an idle mind is a dangerous place to go is ever so true. As we get older, we start to focus on what hurts, what's not working right, who who's died, and what do I have those symptoms to? And um, you know, socialization, especially for seniors, it stimulates them to do things they wouldn't do if they were just living at home alone. Yeah. And if it was just me and my dad, that's no socialization for my dad. Right, right. It's just me and him. And most of the time it's, you know, probably confrontational. He doesn't want to shower. I want him to shower. You know, he smells, he needs to take a shower, or he needs he can't wear that outfit another day. That's the relationship. That's not socialization.

SPEAKER_00
35:12

Yeah, that's very true.

SPEAKER_01
35:14

So getting them out somewhere. There's, you know, adult daycare can can work and be an affordable option to get somebody out and social. Those are generally for people with dementia. But somebody who is widowed and lost um a spouse, an independent living or an assisted living if they need some care, it's a totally great move for them. It's gonna give them a better quality of life and um get that socialization going, get them, stimulate them to do things they wouldn't do if they were just sitting in their house. Exactly. For myself, you know, my home office. You know how easy it is to blow off the gym every day, day after day after day. I was coming home from the office and in the car, and maybe it's some gym clothes. It was out already, I might stop.

SPEAKER_00
35:57

Exactly.

SPEAKER_01
35:58

Exactly. No, it's time to do some laundry, make dinner.

SPEAKER_00
36:02

Exactly.

Veterans Benefits And Free Resources

SPEAKER_00
36:03

Uh so your website is home to homeforseniors.com. That's right. And so anybody can go on there and they can get some free resources or yes, yes.

SPEAKER_01
36:16

And there's even a veterans tab on there. Okay. For um veterans resources. There's um, I think most people are aware that there's a benefit for veterans called aid in attendance. Were you aware of that? Did your mom or dad serve in the military?

SPEAKER_00
36:30

My dad did, yeah. And so he actually got some of it from my mom, and now we're kind of looking into that for him as well.

SPEAKER_01
36:37

Yeah. So for in your situation, we had a healthy veteran and an ill spouse. So she qualified under that. Um, but sometimes it's the veteran that needs it, and you know, the non-veteran is healthy, so the veteran gets a little bit more money than the spouse. But yes, they had to have served um just in a nutshell, 90 days of active duty, one day during wartime, and have an honorable discharge. They did not have to have a service connected injuries injury, they do not have to um be retired military.

SPEAKER_03
37:11

Okay.

SPEAKER_01
37:12

They just had to have served 90 days of active duty, one day during wartime, and had an honorable discharge to start the ball rolling. Now, if they don't have a need for assisted living, someone to help them with bathing, toileting, such as that, then um you don't get the benefit yet. Oh, okay. Unless you're very low income. Oh, okay. Um, maybe 1600 a month or so, you may be able to get some of that uh now because you're living at a poverty level.

SPEAKER_03
37:42

Okay.

SPEAKER_01
37:43

With that income. And then um, you know, there's some other caveats to it, but that's the main thing to get the ball rolling, is those three things. 90 days of active duty, one day during wartime. You didn't have to be, you know, at the country of war necessarily, and this Vietnam has some funny rules, but there just had to be a declared war with the United States during that time that this veteran was in service, and then they had to have an honorable discharge.

SPEAKER_00
38:09

Okay. So that's all on your website, and anybody can go on there and check it out and get more resources for it. Well, this has been so informative.

Closing Thoughts And Next Steps

SPEAKER_01
38:19

Well, thank you so much, Patty. It was an honor to have the opportunity to come here and help your folks. And you know, if anybody resonates with some of the things that we talked about today, and they're like, oh, this sounds just like my family. You don't have to do this alone. Exactly. Give me a call, go to the website, there's a little form that pops up and fill it out. And my services are free. So um we can chat whenever you're ready.

SPEAKER_00
38:42

And I will make sure that I put the website in um thank you on our on our link with the with the show so people can click on it as well. So okay, great. Thank you for joining us. So I hope this has been very informative for everyone, and I hope you've enjoyed the show. So I hope you enjoyed your cup of coffee, your cup of tea, or your glass of wine if it was a bad day. And join us for another episode of Patty's Place.

Welcome To Patty’s Place

SPEAKER_02
0:09

Welcome to Patty's Place, a place where we will talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. So I want this to be a place where you know you're not alone and we can talk about all those difficult subjects. So grab yourself a cup of tea, a cup of coffee. If you're having a really bad day, a glass of wine, and let's get started today. I'm very excited about our guests today because I'm always telling you to go to the Alzheimer's Association website. Well, today I have two guests from the Alzheimer's Association. Uh Kaylee Rizzo, she is a senior development manager with the Alzheimer's Association, Illinois chapter, where she works with communities, volunteers, businesses, and families to build awareness and support for the mission, including the walk to un Alzheimer's. She's very passionate about connecting people with resources and creating meaningful ways for communities to get involved in the fight against Alzheimer's and Alz dementia. And we also have Haiti, Hattie Finnerty. Sorry, I hope I didn't botch that up. She's the director of community engagement for the Alzheimer's Association Illinois Chapter, where she leads program staff and mobilizes volunteers to bring education programs, support groups, and other resources directly to communities. She also oversees the Illinois Chapter's annual research symposium, connecting families, caregivers, people with dementia, and professionals with the latest research and practical resources. So welcome to Patty's Place.

SPEAKER_01
1:30

Thank you for having us. Thanks for having us.

SPEAKER_02
1:33

I'm very excited. So let's start with kind of an overview type of a thing. So what is the difference between dementia and Alzheimer's?

SPEAKER_01
1:44

Kaylee, do you want me to answer that? Go ahead. Okay. Sometimes we might go back and forth with each other. So um, but also I like to just describe it as dementia is our umbrella term. And underneath it is our list of symptoms. So oftentimes people will say, Well, okay, well, what does that look like? As I'm getting older, I might have some of these symptoms.

Dementia Vs Alzheimer’s Explained

SPEAKER_01
2:06

When we're talking about these symptoms, um, it's anywhere from we've all heard those stories of someone getting behind the wheel of the car and saying, I'm gonna run up the street to the grocery store, and now they're 70 miles past the grocery store because they forgot how to get there. Or, you know, someone that loves to plan and organize, they're not doing those things anymore. Or we're noticing individuals becoming very isolated and withdrawn. So when someone goes to the doctor, they talk about these symptoms. Alzheimer's disease or dementia, it is not that normal part of aging. So the first thing is our memory loss, right? Um, the formation of new memories. So we like to say dementia is your umbrella term, it is your whole list of cognitive symptoms, but underneath it, there are over 70 different dementias. Oh, okay. Alzheimer's is the most common form. So 60 to 80 percent of cases is Alzheimer's disease.

SPEAKER_02
3:04

Okay.

SPEAKER_01
3:05

And truly the only way to know is by getting a thorough diagnosis to decipher, you know, is it dementia or is it Alzheimer's disease? What exactly is it?

SPEAKER_02
3:17

Okay. So what are some of the common early signs? You know, that's not just that normal aging or occasional forget. I know you mentioned a few of them, but people get so worried right away.

SPEAKER_01
3:29

Right. I mean, of course, I always, you know, give this example, and I'm Kaylee's heard me say this before. You know, as we get older, we're not going to remember everything. I mean, I get my kids in the car, I'm throwing my bags in for work, and I'm halfway down the block and I'm thinking, did I shut the garage door? And I'll drive back around and like 99% of the time it's shut. But here, this is more advanced. So, yes, our short-term memory goes first as the disease progresses, our long-term will go with it. But we're sitting here talking to someone, and perhaps five minutes later, they're asking the same question again.

SPEAKER_02
4:04

Okay.

SPEAKER_01
4:05

So, you know, we'll see that. We'll see social filter is gone. So maybe now they're talking very loudly about people. Um, we're also gonna notice that yes, we all misplace our keys. I'm sure most of us at one point or another have misplaced our keys, but this is different. This is, I have my keys in my hand, but I don't know what to do with them. What are what is this in my hand? Or, you know, saying, Oh, this is my hand clock instead of this is my watch. So those are some subtle things we're gonna see, maybe incidences of um finances. Maybe now they're forgetting to pay their bills and there's final notices coming in the mail, or accusing others of stealing. Um sometimes my mom did that with my dad. Yeah. Yeah. Yeah. And it's, you know, it's it's heart-wrenching when you are the caregiver. My grandma did the same thing. She always would lose her gold watch, but she couldn't retrace her steps to know where she put it. So when we retrace the steps and found it for her, she would always say, Well, you stole that from me. I went there. How come you took that? I didn't see that there. But it's because they can't retrace their steps. Typical aging, we walk into a room and we think, Oh, why did I come in here? Oh, I know. And we grab the object. But here, individuals they can't retrace their steps. So they're accusing others of stealing or never finding the object to begin with. So those are some of the um warning signs to look out for. But again, I always tell people, yes, as we go through typical aging, some of this might be like, well, I forget that, but it's more pronounced.

SPEAKER_02
5:43

I with my mom, and I've I've told this story before with my mom, she always thought she accused my dad of stealing the money, and he wrote it all out for her and everything, and that didn't calm her down. But the I would tell her, uh, don't you worry about it. You know, me and Annie was her little dog, and I said, Annie and I, I live across the street from the bank. Annie and I can go get your money at any time, and that

Early Warning Signs To Notice

SPEAKER_02
6:05

calmed her down. So that's what I would say. And then she'd be like, Oh, okay, you know, for it. Uh, what are some early conversations and getting an accurate diagnosis? Why is that so important?

SPEAKER_01
6:18

Kaylee, do you want to see anything? I don't want.

SPEAKER_00
6:21

Yeah, that's okay. So uh ultimately what we know right now um and where the research stands is that we can help people that are in the earliest stages of the disease. We do have some FDA-approved medications that have been approved within the last few years. We also have some great research that's come out recently um and talking about protecting our brains and protecting that cognition. So the earlier that we can get someone to the doctor to get a formal diagnosis, the more opportunity that they have to do something uh for the disease. We know that the the early stages is where we can help the most.

SPEAKER_02
6:52

Okay. And yeah, with my mom, she would not go. She would not go to the doctor, she would not get diagnosed until it was we had to get her done. So speaking of that, so what's happening in Alzheimer's research right now? I know you just said there's a lot of momentum in the research, uh, including the early advancement, like early detection, blood-based biomarkers, that types of things. So, what what should people know about it?

SPEAKER_01
7:18

Um we're both smiling because we're like, who should go first? But um, I you know, I wanted to make a note too, like back to what Kaylee said with the whole thing of early detection. Sometimes it's not even Alzheimer's or dementia. It could be depression that plays a role of having, you know, the those cognitive um symptoms, substance abuse issues, thyroid abnormalities, and believe it or not, even vitamin deficiencies plays a role. So we always encourage people to talk to your doctor because it might not even be that at all. Um, but right now I think the most exciting thing is in the research space is really the brain health. You know, the association is moving toward brain health because we came off of a two-year um study that was done. It was a lifestyle intervention study called the U.S. Pointer Study. And it was across five clinical sites, and Chicagoland was one of them. And people had to qualify for this study, so they had to see if they were eligible. So it was for adults 60 to 79 years old, and they had to have some kind of means of improvement themselves, meaning maybe they had a poor diet, or um they were sedentary, and they had to have a parent or a sibling that had memory loss. So once they got approved to go into this study, there were two different groups. It was a structured group, which met with a US pointer navigator, and they, you know, met, I would say, once a month and would talk about everything. There was a non-structured that would just write things down and submit their data. Well, the individuals followed kind of like a like a program. So they were on the mind diet or the Mediterranean diet, they encouraged participants. Nothing was off limits on this diet, but they had to have things in moderation. And most people, when they hear moderation, they think, oh, well, if I love to have ice cream five days a week, maybe I'll just have it, you know, four days. But no, that's moderation. So they said, you know, dark leafy greens, berries were essential, um, limiting our red meat, so focusing on those lean proteins, having seafood two times a week. And they said two tablespoons of olive oil a day. So some of the participants they drank a tablespoon. I don't know if I would necessarily drink olive oil, but yeah, um they drank it. Some, you know, cooked with it or use it as salad dressing, and then they um focused on the diet, they focused on um their physical health and exercise. So they were put into the program at the Y for Silver Sneakers, and they just said, start off 10 minutes, 10 minutes, that's it. Well, I have a volunteer who was part of this study, and she said, Okay, I went to my first class. The people were the same age as me, and it was uh uh weightlifting slash cardio class. She said, I looked at the time, I was six minutes in, and I thought, I can't last 10 minutes. How do these people do this? But she did, and then they also um got them something called brain HQ, which was cognitive exercises, right? Keeping that brain active and the association paid for that. And then lastly, it was all about health monitoring. So when we go to our yearly doctor's appointments and they say, okay, well, you know, you can stand to lose maybe 20 pounds, or you have high cholesterol, we need to change your diet, or whatever that looked like for the individuals, they focused on that. And what they released at the international conference two years ago, Kaylee, I would say. I think that's right. Um, was people that were in the structured group, their brains showed that they were one to two years younger than what they actually were. Wow. So it helped, and it, you know, that was the most exciting thing because you know, when you're in community and you know, because you've you have a personal connection, sometimes you feel like, well, there's nothing I can do, there's no cure. But now they're saying there is something we can all do at any age, and they're saying if you follow these modifiable risk factors, you 45% of dementia cases could be prevented or delayed by just changing some things. Wow. So it gives people like hope that okay, I could change some things about myself and you know continue working on that.

SPEAKER_02
11:55

Uh definitely. I know myself included. Sometimes you worry because you know my mom had dementia. Does that automatically mean that I might get it? I know there's like a blood test for that, isn't there?

SPEAKER_01
12:08

Go ahead, Kaylee.

Why An Early Diagnosis Matters

SPEAKER_00
12:10

Yeah, so there is uh there is new detection, a new blood test. Okay. Um, and we want to make sure that everyone obviously has access to that and can pay for it. Just because you have a family member with the disease doesn't uh ensure that you will get the disease. Um, Hottie can speak a little bit more to the specific numbers and research, but we do know that as we age, the risk of developing the disease increases already. Um, and you know, and speaking about the brain health and the thing, things that we can do now. Uh, my kids are in preschool and going into kindergarten, and brain health is something that we talk about on a regular basis when we're exercising or doing things with friends like playing T-ball, we talk about how it's good for our brains. So I think, you know, being at the forefront of you know how we can teach people to do things differently is going to change the trajectory of the disease. Hadi, I don't know if you can speak a little bit more to the statistics and how it impacts people.

SPEAKER_01
13:02

Yeah, so like Kaylee said, so after the age of 65, your chances start to increase every um five years.

SPEAKER_03
13:11

Okay.

SPEAKER_01
13:11

And then after the age of 85, pretty much it is like a 50% chance. Oh, wow. Okay. Um, so I mean the numbers, of course, are startling, right? Like in Illinois, there's over 250,000 people living with this disease right now. Um, but you know, I think the more awareness we bring to it, it just helps people feel hey, they're not alone, but also there are resources out there for you to be able to help families. Um, you know, we had our facts and figures report that came out and they always release it um at the end of March, early April. And one of the things when it was coming, talking about like lifestyle and stuff, was only three out of four Americans say that they know, of course, lifestyle is very important for brain health, but only 46% strongly

Research Hope And The POINTER Study

SPEAKER_01
14:05

connect that these behaviors can reduce our dementia risk. So there's so much more out there right now, like really educating people on brain health. And I love that Kaylee does that with her kids because it's important it starts young now, right? We always want to make sure that we're starting younger as opposed to, you know, it's too late.

SPEAKER_02
14:25

Oh, for sure. And what are some little things? Like, I know people like puzzles or reading or different things like that, in addition to the diet and exercise, of course.

SPEAKER_01
14:34

Yeah. Um, you know, it's so we have a program called 10 Healthy Habits for Your Brain or Healthy Living. And I subscribe to that.

SPEAKER_02
14:43

I get those texts, yes.

SPEAKER_01
14:44

Oh, good. Um, and some of the things people say like, well, we're doing this, but of course, when you are riding your bike, you wear a helmet because traumatic brain injuries is a big risk factor. Or, you know, um keeping your brain constantly engaged. So, yes, crossword puzzles, puzzles are great. Um, the new craze now is the ma I can't pronounce a mahjong that everyone's playing.

SPEAKER_02
15:09

Yes, yes.

SPEAKER_01
15:09

Um, something simple as, and Kaylee's heard me say this brushing your teeth with your non-dominant hand. Oh, okay. I mean, you go into autopilot doing the same thing, and it's it's hard. I um can just give an example of myself. I just recently had rotator cuff surgery, so I had to use my left hand for everything. And let me tell you, using the left part of your brain takes a lot. I'm thinking, oh, this isn't gonna be bad, but oh, it some of the things it's bad, it's it takes work, right? Um, so you know, doing things like that, and even, you know, they say engage in ongoing learning, but that could be it, it doesn't have to say like go to the community college and like sign up for a course, it could be taking online, you know, courses, sometimes even with the libraries, um, are things that can help. And of course, we know exercise, we know our diet, social engagement is important, people don't do well in isolation. Um, so these are things you know, we have lower stress. Wow, it's hard, right? I wish there was a magic, you know, potion for a lot of these things, but there isn't. Um, you know, controlling, of course, our cardiovascular factors. So there's a lot um on there. And the one thing that the association is really moving toward, like I mentioned, is brain health. And on our website, we have a tool called healthy um habit building. And it's like a six-week, I want to say like six steps to take. And every week they send you something that's exciting so you can build your own habits and have that. Um, because of course, in a perfect world, we don't have any of these things, right? But it's not perfect, and we have to sometimes, you know, work with that. But those are just some of the little healthy habits that we can do.

SPEAKER_00
17:05

Well, and I think it's also important that it doesn't have to be a life-altering change. Um you can add it to part of your routine. Usually, um, nights before bed, I open up LinkedIn. LinkedIn has games and I go through and I do all the puzzles. Um, I like to see if I have completed the puzzles more quickly than my, you know, my connections on LinkedIn. Um, but it's something that helps me relax at night. It helps with the stress and it helps with, you know, it keeping my mind active.

SPEAKER_02
17:31

And and I, yeah, all those things are, like you said, little things can help with all of it. So I don't know if people realize how much support that the Alzheimer's Association gives for families and caregivers. So beyond, I know people know about the walk. So, what else does the Alzheimer's Association give for families and caregivers?

SPEAKER_01
17:51

We have, I think one of our most key resources is our helpline. Um, our helpline is 24 hours, seven days a week, and I can just give the number. Um, it's 800-272-3900. But those are master level clinicians, so they're helping individuals, yes, of course, for information referral, but maybe it's in those moment needs, right? Where someone's calling and saying, I don't know how to take the keys away from my loved one, or my loved one is resisting taking a shower. Do you have any tips? And they can help walk them through some of those situations. Um, our other resource is our website. I still think after so many years at the association, you can get lost in there because there's such great information. But you know, going on to alz.org and kind of just searching around, there's an interactive brain tour that you can like look through. Um, and then I would say our community resource finder. So let's say you're looking for an education program in the community or perhaps a support group. You can put in your zip code and it will pull anywhere from 25 miles to 500 miles away.

SPEAKER_02
19:02

And I have called, I called the helpline, and I can say it was very, very uh helpful for me because and I can never say this. It my mom had um, it starts with the A. It wasn't that she was in denial, but she just did not know she had dementia. Is that Agna? I can never say it. Anyway, it's not it's on your website, that's how I got it. Um, and so it wasn't that she was in denial, she just did not know she had dementia. You could not say that to her. And so it was very helpful when I called because I didn't know what to do. And so they they helped me a lot. And there was, yeah, the information on there is is wonderful. You can get lost because there's so much on there.

SPEAKER_00
19:44

You know, I know I agree. Uh with it. I love to hear when people have used the helpline. I think sometimes people are hesitant with an 800 number, but you know, I've been with the association for seven years. I started as a volunteer before, and I can't tell you how many people that I've I've asked to call the helpline and said this is really your first line. They're the people who are going to help. And every time people come back to me and say, you know, I didn't expect someone to answer the phone, I thought that I was gonna have to go through an automated system. And it's just, it's not that, it's real people that are there to help.

SPEAKER_02
20:14

Because it is, it's very stressful, not only for the person who has the dementia, but for the caregiver as well with it, because it's so many different things. So, what what advice would you give for a caregiver dealing with their loved one with dementia? Like, what's one of the easiest things they could try to do?

SPEAKER_01
20:35

I would say support, you know, get yourself into a support group. Um, the association also has something called ALZ Connected, and it's like an online community where if maybe you can't go in person, you can even look at ALZ Connected. But I would say, you know, just know that you're not alone. Oftentimes, um, I hear from people saying, I feel very isolated. Um, but I think the more support you can give yourself, and the best thing is you can go to a support group every day of the week if you feel like you need that. There's support groups all throughout the community, and I think the important thing is, you know, going to a support group and looking at again back to the website. There's virtual programs there talking about how to, you know, communicate with your loved one effectively, how to respond to some of those dementia-related behaviors, and just really educate yourself because the tricky thing about this disease is not one individual, no one is alike, every individual is different. So it's hard, right? Because what might be for my grandma might not have been for your mom. But I think really just equipping yourself with some of those resources does really help.

SPEAKER_02
21:50

I would agree with that as well, and also that to um say they're not doing these things on purpose. You know, a lot of times people get angry at them, and I Understand it because it it can be frustrating, but to try to enter their world and be like it they're not doing it on purpose and and to put their safety first with it, you know, because it was a very difficult decision that we, you know, when we had to put my mom in memory care, uh, because the doctors were like they said she was highly unusual. The actually the hospice nurse said, because she was still mobile, even though her dementia was so progressed. She, when we finally got her diagnosed, she was moderate to severe. And so they were like, You're not gonna be able to take care of her at home by yourself. And she actually got out on me twice in the middle of the night one night when she lived with me. I was never so scared in all my life. I mean, I got her right away, but it it's scary because she, if I didn't get her right away, I don't know what would have happened to her, you know, right with that.

SPEAKER_00
22:52

I also think it's not being afraid to start the conversation. I think that there's so much stigma around this disease, and oftentimes people aren't talking about it until they're in a crisis. And I think the more that we can make this, you know, a common conversation, we can hopefully avoid situations like that. I see posts on Facebook all the time of people looking for, you know, different senior living communities, and there's always somebody that steps up and says, you know, I would never do that to my mom. And I think that people just don't understand the different, you know, courses that this disease can take and how how much work it is to be a caregiver. So as a caregiver, being willing to start the conversation and find out what resources are there, find out what other people that you know might also be navigating this and could be a great support. I think the support groups and also as a caregiver taking care of yourself.

SPEAKER_02
23:40

Which is very difficult. It really is, you know, because you almost sometimes you feel guilty when you're a caregiver with it. But yeah, I I had some people say that I will never do that, and it's not what I wanted to do. I did not want to have to do that, but her my mom's safety was what was important, you know, and uh, you know, finding the right place for her, and we were very happy, my dad and I, with you know, the place that we found, and and we were there all the time uh with that. But it you you just don't want them to hurt themselves.

SPEAKER_00
24:13

Right. I tell people that as long as you're making the best decision for your loved one, that's the best decision for your loved one. Other people can't tell you how to navigate, you know, your unique experience.

SPEAKER_02
24:23

Exactly. Yeah, and and it is, you know, like you said, people with dementia, they have living with dementia, they they have certain things that are the same, but everyone is different. And so you you get similarities of like the stealing or they don't like the showers. Does anybody have they done any research as to why they don't like the showers, they fight

Practical Brain Health Habits

SPEAKER_02
24:45

it so bad?

SPEAKER_01
24:46

No, but a lot of the times it's because their sense of like independence is taken, right? It's kind of embarrassing for someone to oftentimes they forget, like, okay, I'm looking at this soap, but what is the soap for? So those things, you know, like the objects, things that we're so used to doing, they're forgetting how to do it. Uh and that's why it's like resistant. I mean the water temperature, it could be just a lot of things. Really, and I mean, you used to work in uh that realm of things. Do you have anything?

SPEAKER_00
25:22

I think it's just, you know, if you're put in an unfamiliar environment with an unfamiliar person, I think that any situation like that could be it, it could make you fearful.

SPEAKER_02
25:33

Well, it m everyone the caregivers used to tell my mom, your mom's so sweet, she's so nice. I go, Yeah, until you try to give her a shower, and they were like, Oh yeah. She like things came out of her mouth that would have never come out of my mom's mouth in the shower.

SPEAKER_01
25:46

We used to tell my grandma, okay, it's time for church, and that would always get her in the shower because she would never miss a Sunday. So she would get in the shower. But if we were like, Oh, so-and-so is coming over, she'd be like, Okay, I showered. I'm clean. And it's been like, you know, three or four days. But if we said, All right, it's time we have to go to church, or we're it's Sunday, we're going to church. Yep, today is Sunday, we're going to church. She would happily get in the shower.

SPEAKER_02
26:11

Uh yeah, and like my mom, you know, she had incontinence issues, which are very common. Yeah. And sometimes she would let me, you know, I'm like, come on, mom, we gotta change your pants. And other times she would say, Well, then don't look. Who cares? I don't care. But then always the caregivers would. My mom carried a baby with her. And like that baby was just like she would get upset if she didn't know where the baby was. And for uh a couple of days the baby went missing. I mean, so much so she was so upset. My dad, you know, went and got her an identical baby with that. Is that pretty common? Because the babies were donated to the memory care facility.

SPEAKER_01
26:48

Yeah, it's going back to like their long-term, right? So she was a mom, so she probably is going back to the time where she did have her children that were babies, and a lot of them find comfort in that. And you'll notice, like, at a lot of times at like memory care communities, they do have babies, they have sometimes pets. Um, they'll try to go back to what some of the people in that community maybe used to love or they were, but yeah, oftentimes it's you know, law we're reverting back to our long-term memories.

SPEAKER_02
27:22

Yeah, and my mom thought she was at the memory care was her grandma's house. And it which didn't surprise me because that was a time in her life when she was happy, you know, because she had a lot of traumatic things happen to her. So she kind of went back to a time when she was happy, and like and it was interesting with the other residents where like the one resident he thought he was back in college, he was in his dorm, you know. So it was it was always interesting where they thought they were with that.

SPEAKER_00
27:48

So I had a woman with uh 11 children, and she would come to my office every day and ask me uh how to get to the bus stop to get her kids off the bus. And I can imagine that that was the thing that she was most proud of in life was being a mom and getting to raise all of her kids.

SPEAKER_02
28:02

So it's important too to pay attention, right, to people's stories so you can jump back to them at that. So how can people get involved if they want to help?

SPEAKER_00
28:12

So there are so many ways to get involved with the Alzheimer's Association. We are uh we're getting into the heat of walk season right now. So uh starting on September 19th this year in Illinois, uh we have uh 28 walks happening across the state. Okay. Um, and there's over 600 that happen um across the country. So walk is a great way to you know get your foot in the water with being involved with the Alzheimer's Association. It is uh really

Helpline Support And Caregiver Tools

SPEAKER_00
28:40

the front door of our mission. It's how a lot of people are introduced to us for the first time because it's a big visible event. Um so those are coming up. There's also tons of ways to get involved as a volunteer. So uh Hadi and myself um oversee, I serve seven counties. Hadi, you're up to what is it, nine, eleven?

SPEAKER_01
29:00

I think it's a yeah, 11 or 12 counties.

SPEAKER_00
29:02

Yeah. So um, while we're incredibly passionate about the work that we do and have been with the organization for a long time, um it's really our volunteers that help us have the reach in community and help make sure that our resources are getting to people that need them. So there's there's tons of ways to get involved as a volunteer, whether it's helping to plan one of our events like walk or being part of our longest day committee. There's also the opportunity to help be a community educator, to help go out and be in community and introduce people to our awareness programs, to the resources that we provide as an organization. So I always say if someone is interested in being involved with the Alzheimer's Association, we will find a way to make the work meaningful for you.

SPEAKER_02
29:45

Okay. And I know I I've been at one walk before. So what is the emotional significance of you have the promise garden to bring families and communities together?

SPEAKER_00
29:56

Yeah, so walk really it's a fundraising event. It's the largest fundraiser that we do as an organization. Um, but it's also about bringing people together and showing the community that exists behind this disease. So when a participant comes to one of our walks, um, they receive a promise garden flower, which is a pinwheel flower. And each of the colors of the flowers represents a different way in which people are impacted. So we have blue flowers for people that are actively living with Alzheimer's or another form of dementia, yellow for those who are caring for someone, purple for those who may have lost someone, and orange is just for a general supporter of the cause, someone who believes in our mission, even though they might not be personally impacted. So we use those flowers during our ceremony, we carry them during our walk, and it's a great visual representation of the way that people are connected to our cause.

SPEAKER_02
30:43

Okay. And you said so if they want to participate in a walk, they could just do it themselves or they can form a team, or what can they do?

SPEAKER_00
30:52

Yeah, so you can absolutely walk as an individual, um, or you can bring some friends and family with you. You can bring your workplace, your coworkers, um, register a team for the walk. If you go to alz.org slash walk, you can put in your zip code and find a walk that's close to you. Um and we invite everyone, we encourage people to register in advance. That helps us with planning and organization. But if you um have a day that's available and you want to come join a walk, um, you're absolutely able to register on event day as well.

SPEAKER_02
31:22

And the money that's raised, where does it go? Does it go to the research or where does it all go?

SPEAKER_00
31:27

So walk dollars kind of go everywhere. Um, they go to research, they go to local initiatives, um, they they go to things like supporting the helpline. Um, so walk supports all of the work that we do as an organization.

SPEAKER_02
31:42

Okay. So I guess the other thing too, I always wondered, do we really know like what causes the disease, or are we still researching all that?

SPEAKER_01
31:53

We do know what causes

Hard Care Decisions And Safety

SPEAKER_01
31:55

the disease. It's the plaques of the tingles in the brain. Okay. So that's the two main culprits, basically.

SPEAKER_02
32:03

And how does somebody do how do you develop the plaque or the tingles on the brain?

SPEAKER_01
32:08

So everybody has either plaques or tangles, right? It's the way that they uh I'm looking for the word, like advance, right, in our brain. Some they just are sitting there and you just have plaques and they don't advance, but some do into a form of dementia.

SPEAKER_02
32:26

Okay.

SPEAKER_01
32:26

So that's why. So right now, go ahead. Okay, go ahead.

SPEAKER_02
32:29

No, I said go ahead.

SPEAKER_01
32:30

I was saying right now they're they're currently looking into that because with the new therapies that Kaylee mentioned, they are the first therapies to actually target one of the culprits, which is the plaques. So we've not had that before because with medication, they were just treating symptoms. Now, with the two new therapies that are out there, it's to target the plaques in the brain to give people more time to like be in those early stages of the disease.

SPEAKER_02
32:57

Okay. And you can be in those early stages for quite a while as well.

SPEAKER_01
33:02

Well, yeah, every individual is different, but yeah, you can be, or you can fly through them. It just depends.

SPEAKER_02
33:08

Yeah, because I know some it it's not, I think the other thing too for caregivers and people to understand, it's not like cancer where they go, Oh, you're in stage this and cancer with dementia you can be in all the stages all at once sometimes, and it goes fast with it. So it's kind of really understanding and knowing what your love who your loved one is and how they're functioning to be able to know what's going on with all of that. So so can you give us the helpline again? And I'll make sure I put this on the website as well.

SPEAKER_01
33:39

Yeah. It is 800-272-3900.

SPEAKER_02
33:45

And I always tell everybody go check out the Alzheimer's Association website, call the helpline, because to me, that's what helped a lot was understanding and learning about the disease. Cause then that helped me help my mom. Because you do feel helpless. Yeah. Uh you really do. And and I just I felt like there wasn't anything I could do for her, but I could give her peace, so at least I could try to not argue

Walk To End Alzheimer’s And Volunteering

SPEAKER_02
34:10

with her, you know, and just try to help her get through it every day. Cause it has to be so scary. I I I thought about that a lot with my mom, you know, to have dementia. Yeah. With that. So what uh any any parting thoughts, anything that you would like us to know for sure on the Alzheimer's Association? Any new things that are going on or things you want people to know?

SPEAKER_00
34:35

I really think it's just the importance of the conversation. We appreciate you having us on. I think uh talking about it, learning about it is the most powerful thing that we can do.

SPEAKER_02
34:44

I would agree with that. Yes. Having because it's not an easy conversation, but it's important to have. So, well, thank you so much for joining me today. That this has been so very insightful, and hopefully people will begin to have those conversations some more and maybe volunteer and join a walk as well. So thank you so much. So thank you. I hope you've enjoyed this

Final Thoughts And Next Steps

SPEAKER_02
35:05

edition of Patty's Place. So make sure you leave us a review, subscribe to our YouTube channel as well, and check out the Alzheimer's Association website. So hopefully you've enjoyed your cup of tea, your cup of coffee, or if you're having that really bad day, a glass of wine, and join us for another episode of Patty's Place.

Welcome To Patty’s Place

SPEAKER_02
0:08

Welcome to Patty's Place, a place where we're going to talk about grief, dementia, and caregiving. I started this podcast in honor of my mom, Pat, who passed away from dementia about two and a half years ago. I'm your host, Lisa, and I wanted this place to be where you can know that you're not alone and talk about some of these difficult conversations. So grab yourself a cup of coffee, a cup of tea, or if you're having a really bad day in a glass of wine, and let's come join us today. Today I'm excited. Our guest today is Grace Walfall. She is a foundation of Living with Change, Dementia Consultants. She's a certified dementia practitioner, certified dementia champion, and dementia educator with TIPA show's Positive Approach to Change. You're also an author of Preparing with Clarity: Next Steps After Dementia Diagnosis. And that's the first book in the series as well. So welcome to Patty's Place.

SPEAKER_00
1:01

Thank you. I am excited to be here.

SPEAKER_02
1:04

So I thought we'll get started a

Why Diagnosis Leaves Families Lost

SPEAKER_02
1:07

little bit here. So what do you see happening to families after dementia diagnosis that led you to create living with change?

SPEAKER_00
1:17

Okay. Well, before I even answer that question, one of the things I want to say, because I focus on the person living with dementia, there are a lot of organizations that focus on the care partner, and that's extremely important. But if there's someone who's listening today and you're living with dementia, especially if your diagnosis is recent, I want them to know that this conversation includes them. It's not around them. And if a family member, a care partner, a supporter, or even a provider is listening, I hope that this conversation will help them to prepare alongside the person living with dementia and not around them. So I wanted to share that. But to answer your question, what I kept seeing was that people living with dementia and the people who support them, they were leaving a diagnosis appointment with medical information, but with limited direction. I facilitate a group of men living with dementia through the National Council of Dementia Minds. And more than once I heard the same story. They had received the diagnosis, they had been told to get their affairs in order. Then they were sent home with a follow-up appointment months later, six months, 12 months, sometimes even 18 months. And I kept thinking about the person who had just received that diagnosis, especially as I was facilitating the group of men living with dementia, and they would say that. What do they want to, who do who do they want to be involved, what may need attention now, and what can we? Well, I was attending several conventions and I was at a Georgia Gerontology Society conference, and I heard a certified elder law attorney explain legal and health matters in a way that I realized the men could use, but I also realized the missing piece that people do not only need more information because there is a lot, they need sequence, they need structure, and they need a place to begin. And so that became the foundation of living with change. The work actually grew out of listening to people live with dementia and paying attention to what they said they were not receiving, but what they needed, because nobody really should leave a diagnosis appointment with nowhere to turn to guide them on getting their affairs in order.

SPEAKER_02
4:12

And I I love what you said about the person living with dementia to include them in the diagnosis, because in my mom's particular case, she wouldn't get diagnosed. I tried and she wouldn't. So by the time she was diagnosed, it she was already in like, as they call moderate to severe uh dementia, which you know, she couldn't make those decisions for herself. But it was still important in many ways to learn to learn as the caregiver how to include them and make sure you're doing what is what's in their best interest for them and to give them dignity with it, you know. And it's really hard. I I find a lot of because it is it's a difficult diagnosis for the caregiver, but it's a difficult diagnosis for somebody who, you know, as you said, you're dealing with the people who are uh helping the people who are living with dementia. It's a hard diagnosis for them to to digest as well. Yes, you know, and even as the caregiver, you're here, you have to do this, this, and this, put them in memory care. And you're like, uh, what does that mean? You know?

SPEAKER_00
5:20

Yeah. What does that mean? And what what type of memory care would they like to be in? And so you want to get that information while they can still contribute to the conversation. And some families that I have worked with, they've actually visited different um memory care um communities and decided together where they would like to go when the time comes and they need that level of support.

SPEAKER_02
5:51

And that it's wonderful when families can come together to do that for the um their loved one, because it doesn't always happen that way as well.

Medical Info Vs Real Life

SPEAKER_02
6:01

So, why do you think so many families feel lost after a dementia diagnosis, even when they've received good medical uh advice information?

SPEAKER_00
6:11

Yeah, so good medical information matters. I come from healthcare, okay, um, and I respect it highly. So if you're living with dementia, you deserve to understand your diagnosis. Um, if possible, the type of dementia, what your healthcare provider is seeing maybe on the scans, and what follow-up is recommended. But medical information usually answers one part of the question, right? It helps explain what may be happening in your brain. What it often does not answer is what does daily life look like now? I mean, what does the next morning look like? Who do you want to be involved? Who do you tell and why do you tell them? How do you even begin that conversation with family, friends, and if you're still working your employer? What information should be gathered so that you can get your affairs in order? Those practical questions actually belong to the person living with dementia and also to the people supporting them. And that's why people can leave an excellent medical appointment and still feel lost. They may have the information, but they don't have a practical path. And so preparedness gives that information an order. It tells them what matters now, what comes next, what can wait, what everything, when when everything doesn't feel urgent, the person living with dementia, the people supporting them, they can slow down, they can take a breath, and then they can begin.

SPEAKER_02
7:58

And I like how you said that, yeah, you could take a breath and digest all the information. And too, a lot of people don't realize there's different types of dementia. You know, not everything is Alzheimer's with it. You know, and to understand that even though they share a lot of common symptoms and things like that, different things, different dementias have different different symptoms, different outcomes, different, you know, different things you need to look for, or you're gonna have to deal with later on with it.

SPEAKER_00
8:27

You know, I think you make a very important point. The same way when someone receives a diagnosis of cancer, we ask, what type of cancer immediately, right? Where is it? The same thing with dementia. And it is more difficult to pinpoint in the early stages, but still in communication with your provider, your neurologist, that should be your question.

Why The Dementia Type Matters

SPEAKER_00
8:54

Have you identified the cause of my dementia? Is it Alzheimer's? Is it prefrontal temporal? Is it vascular dementia? Is it Lewy body dementia? Because as you were saying, it affects different parts of the brain, and different parts of the brain control different parts of who we are, right? And so to know that it may be affecting your left temporal means that you may have challenges with language, with language comprehension, with language um production, or even with word finding. So it's always good to, if when possible, to get a diagnosis of what type of dementia, and also people will end up having mixed dementia. And so they may have Alzheimer's and vascular. And so now you need to understand both and how they come together, and what you can expect in terms of what changes may occur.

SPEAKER_02
10:04

Yeah, I think, yes, that is excellent for people to understand because it's such a huge umbrella, and you feel very overwhelmed with it. So your book is called Preparing with Clarity.

Preparing With Clarity Explained

SPEAKER_02
10:17

So, what does uh preparing with clarity actually mean for a family when they just heard the word dementia?

SPEAKER_00
10:23

Yeah, the word dementia. So for me, preparing with clarity means helping the person who has been diagnosed together with the people they trust to understand what deserves attention without trying to do everything at once. You know, if a person just heard the word dementia, that emotional weight is heavy. Um they they can, and everybody's different. So some people may be frightened, some may become very quiet, some may be confused, or based on their personality, they may try to start solving 10 things at the same time. Everyone's experience is different, right? Um, we all know the same when you've met one person with dementia, you've met one person with dementia.

SPEAKER_02
11:12

Yes, exactly.

SPEAKER_00
11:14

This, yeah, this book is written for the person living with dementia in mind. I wrote it for them. And it gives them a practical order, right? It helps them to think about what they want to understand now. What information should be in a dependable place? What should be part of their care team, or who should be part of their care team and their support network, and what preferences or decisions they want to communicate now while they have that ability. So, care partners and supporters, they're very important part of the process. And with this book, this allows them to walk alongside their loved one with support and structure. Because the book, in addition to providing information, it actually gives them worksheets that they can complete together or independently so that they can begin their preparedness journey immediately. And I also did that because coming from healthcare and coming from leadership and management, I understand the power of quick wins. And I wanted them to have quick wins. So to encourage them and to empower them that this is doable, and just start right here and do it at your own pace and do it by yourself, or you can do it with someone that you trust. Because preparing with clarity, it's not about having every answer. It is about having enough structure so that they can take the next step with confidence. The book, it's designed for life after diagnosis, um, but it can probably serve quite a few people. But it's it's for life after the diagnosis and especially the early period from it could be from MCI, mild cognitive impairment, or a dementia diagnosis early to mid-stage, when that thoughtful preparation can make a real difference in how their life um progresses. So a diagnosis, it really does change what is ahead.

SPEAKER_02
13:33

It really does, yeah.

SPEAKER_00
13:35

But it doesn't get to decide how the family needs it.

SPEAKER_02
13:39

And I think that's wonderful because you know, the person living with dementia a lot of times gets lost with with all of it. They do, they they really do. And it it it's hard to get to that point to as a caregiver to be able to be like, wait a minute, you know, like I've said many times with my mom, I there was nothing I could do. I, you know, there's no cure, I can't fix her or whatever, but I could at least give her peace. And so I tried to do that, you know. And the one thing I have said before too is people living with dementia, they really do teach you to live in that moment, especially as the diagnosis progresses, because that's all they know is that moment.

SPEAKER_00
14:22

Yes, it and that's one of the few things it's teaches us. I have learned so much since facilitating that group in terms of patience, you know, in terms and and patients with waiting until they gather their thoughts to answer a question and not asking, did you hear me? Yeah, but under yeah, but understanding it's going to take more time for them to gather their thoughts. It's also taught me how to be more understanding and compassionate, but also how to be more grateful in life. The things we you I used to take for granted. Um, the simple things I no longer take for that granted. I give thanks that I'm still able to do that. And I give as much support to those who can in that moment, like you were saying, moment to moment. Dementia is not day by day. No, dementia is definitely moment by moment, second by second.

SPEAKER_02
15:23

And it is um, it's a learning curve not only for the person living with dementia, but for the caregiver to get to that point with it, because there's so many emotions

Three First Steps After Diagnosis

SPEAKER_02
15:32

attached to it. So, what do you think are the what are the first three things a family should do in the weeks after a diagnosis?

SPEAKER_00
15:40

So, like we discussed previously, first, if they can, understand the specific diagnosis. Because as you mentioned, dementia, it's an umbrella term, right? There are the many types of causes that end up causing a diagnosis of dementia. And they should ask their health care provider to explain the type of dementia that has been diagnosed. They should ask their health care provider, you know, what changes are they seeing if they're doing scans, and what can be expected because of what they're seeing, as well as what follow-up or support they recommend, like which specialists do you recommend a speech therapist? Do you recommend a physical therapist, occupational therapist? What do they recommend? Because understanding their diagnosis, it gives them and the people supporting them a stronger conversation for a stronger foundation for conversations that are coming up. And not just conversations with your care provider, but also conversations with your family and your friends when you're planning, once there's an understanding of the type of dementia that a person has. The second thing they should do is begin gathering important information and putting it in a dependable place. So this is for all of us, right? Right. We have information in a file somewhere, we have it in a drawer, we have it all over the place. And so to have this information, and that can be their medication, their insurance information, emergency contacts, their financial contacts, their logins to different accounts or a recent picture or updated picture. So if there's ever a need for a silver alert, that they we can provide a recent picture to help in finding them, but also what their daily routines are, so that you know, and what their care preferences are. And they don't have to do that alone, right? They can have a trusted person help them to get these documents in in a dependable place. And excuse me, in my book, I do discuss a home base, and that that's explained, but that can be very useful. So the last thing I think they should be do is to begin having honest conversations and not a lot, just conversations about what matters to them, right? It doesn't have to cover everything. Um, they could start with something very simple like what helps me feel steady, what frightens me the most about this diagnosis? Who do I trust to help with the decisions who won't be too emotional? Um, what do I want the people around me to remember as the disease pre-progresses? Because having that conversation, it not only benefits, but it benefits the person living with dementia because it gives them that space to speak their truth. And sometimes the truths, their hard truths. And it also benefits the trusted person because now they're more aware. They're aware of what that person is living with, what that person is feeling, experiences, as well as what their desires are. So it's very important to share for me to share at this point because I'm giving a lot of information that in my book, in my um educational series, I don't give legal, financial, or any clinical advice. I just help people understand what questions they should ask and how to prepare to work well with the qualified professionals that they will need. So just some small steps, those three small steps in the right order, they're better to have them now than to have to address them under pressure or in a crisis.

SPEAKER_02
19:49

Oh, I agree. Because when you've, you know, if you don't have that ahead of time, which you know, I didn't. And and and my mom got diagnosed during COVID. So that was a whole nother wow. And so um you do, you feel very overwhelmed and you don't know where to start uh with things. You mentioned

Home Base System For Key Documents

SPEAKER_02
20:06

a home base. So what is a home base and why does that make daily life and decisions, why does it make that easier for families?

SPEAKER_00
20:14

So if you're living with dementia, there's something deeply assuring about knowing where important information lives, right? And they shouldn't have to rely on memory, neither should the people who are supporting them. So a home base is a dependable place. It can be paper, I'm paper, I like paper. Um it can be digital or it can be a combination of both, right? Because if your care partner is a distant care partner, maybe it's a child who lives in another state, you can put certain papers on digital, like their advanced directives, uh do not resuscitate the HIPAA authorization, so that if the person has to be admitted into a hospital and they don't take that information with them, the critical information that will guide how the person receives care, someone who's living in another state can go online, get that information. If they've been given authority to like a my chart, they can upload it or they can have that conversation. So, you know, also not to digress, but one of the things that is important is that people um need to realize that they do need a power of attorney, a healthcare power of attorney. But in addition to that, they also need a HIPAA authorization because that allows a person to have access to medical information. Without it, by law, it cannot be changed. So, to answer your question, the home base that's where important information lives, right? Digital or both, and it's the place where people know to look first. So, for example, if there's a doctor's visit, one person thinks the medication list is in the drawer, someone else has the insurance card, another person remembers that the medication was changed, they don't remember what it was changed to, who changed it, or why it was changed. That kind of searching can make an already emotional appointment even harder. So with the home base, you have either a stationary file cabinet, a portable file cabinet, digital or a combination. And in that you have your medication list, your provider information, your insurance details. All of these are kept in a place that is dependable so that you and your trust one can find it when it's needed instead of having to search. So the goal is to reduce the searching so the person living with dementia can preserve their energy, right? And those who support them, they can use their energy for the person, for the conversations, for the decisions, for the life that is actually happening instead of looking for documents. So a home base, it doesn't, it doesn't need to be fancy. I like things simple and it doesn't need to be perfect because you can build it over time. It needs to be dependable. And in the book, I give them different documents, um, not the actual documents, but the name of them and the different folders that they should have in a home base so that if someone comes in and needs to EMT comes in and they want to know what medication, your trusted one can just go to that file cabinet, pull out the folder that says medication, and said this this is the updated one. They had an adverse reaction to this one. Do not prescribe this, do not administer this. It's about having everything in a place where in the time of need, you know exactly where it is.

SPEAKER_02
24:12

And that's a good, I didn't realize uh with the HIPAA, uh, because both my parents had the power of attorney uh we had, but I I had to get on my mom's um medical records, and that's probably what I had to fill out was that, but that's a good one to have to to remember because again, you deal with, oh, I they can't give you the information, and you're like, but I'm the power of attorney, but you have to have you have to fill that out, which I understand you're you're trying to respect that person, but as with somebody with dementia, you you need to know what's going on because they may not depending on what stage they're in, they may not understand what's going on.

SPEAKER_00
24:50

That's correct, that's

HIPAA Access And Care Authority

SPEAKER_00
24:52

correct. And additionally, in addition to the home base, the home base is actually it's one of the ideas that I carry into what I am now developing, which is the prepare to thrive toolkit. Um, because knowing where to begin and knowing how to find your way back to that information, as you were mentioning, as memory and cognition changes, they may have challenges. So I thought of creating and then developing the prepare to thrive toolkit, and it's designed to support a person with cognitive change. You know, what makes it different is that it's designed about around the reality that as cognition changes, it can become more difficult, it can become harder for them to remember where the information is, what they were working on, or what comes next. So instead of just giving people another binder full of information, the toolkit it helps guide them one step at a time. So I'm looking forward to launching that so that people can have structure and tools to really support them through the journey.

SPEAKER_02
26:08

And I think that that's wonderful. And uh, like with my mom, well, granted, her hers dementia had progressed by the time we got a diagnosed. But like sometimes I had to be that person because she would get upset at the doctor's office or she was in the emergency room and things like that. And I actually had to spend the time to try to calm her down and talk her down with it. So, yeah, to be able to have that information and know where that is, to be able to give it to the healthcare provider because they didn't know what to do with her because she got so upset and she was ranting and raving at one point, saying, you know, that my dad was sending her this way and also, and he wasn't, you know. So it was like, you know, they try to calm her down with it. So that's an excellent tool for people to have, to have it all there uh with it. Uh, so you said preparing with clarity is book one in your after the dementia diagnosis series. So, what does the series, where does it go from here? What's your plan with that?

SPEAKER_00
27:07

So, preparing with clarity is my first book, and I wrote that because I thought of the toolkit first, and then I thought people aren't gonna understand why they should need a toolkit, and then the education series came up, and I said, neither are they going to know how. So, preparing with clarity, it is my first book, and it begins in the early to mid-stage period after a diagnosis, right? Because that's when people often need a place to begin. And I wanted to speak directly to the person living with dementia while also helping those who walk beside them. That early period, it matters so much because it can be a time to understand what the diagnosis may change. You know, how are they going to engage with now a care team? How to expand and strengthen their support work, support network, and also how to communicate what matters to them, such as their care as the dementia progresses. The larger book series, it's designed to meet people as needs change. So, in the other series, I'll talk about making your home safe. I'll talk about the actual legal documents that can support you, like the HIPAA authorization, right? One book, it cannot carry the whole load because dementia changes over time. And what you need in early to mid-stage, it may be different from what you need when daily support increases or when decisions become more complex. So the principle throughout the series will be the same. I will not overwhelm people with everything at once. I am grounded in now, next, and later. And the books they're written to meet them where they are, and with flexibility so that it supports their personal priorities, because I don't want to say do this first. They each chapter they can use it if they think strengthening their support network is more important than building their care team, then go there first. And so they can choose what they want throughout the series, and the book just gives them direction for what to do as in the future.

SPEAKER_02
29:28

Well,

Toolkits And A Book Series Roadmap

SPEAKER_02
29:29

and yeah, like thinking about like the house and things like that. My mom lived with me for about a month before as we were trying to figure out uh where she was gonna go and stuff, because she she couldn't live with my dad anymore. She was just so angry at him for so I was like, that's not gonna work, you know. So, but like I had to take all the knobs off the stove, you know, you know, with those types of things. And um, my mom actually got out of my house twice in one night. That was the scariest thing I've ever had. And I was literally right next to her, and she got out really fast. And my dad came the next day and changed the locks, you know, all those different types of things you have to think about uh with it.

Planning With The Person’s Voice

SPEAKER_02
30:08

So, how can families include the person living with dementia in planning uh while their voice and preferences can still be heard?

SPEAKER_00
30:17

So um the way that they can include is really just to start with one, excuse me, with one conversation, right? Not not not ten conversations, not the whole plan. And to really understand that they still have a voice, they still have um dignity. You want to help them to retain that dignity, and that they they still can share what is very important to you, uh important to them. So it is our position at Living with Change that our work is grounded in a dignity-centered approach, right? So for people who are living with dementia, I want them to know clearly that their diagnosis doesn't erase their voice. They still have something to say about what matters to them and how they want to be supported. So they can include them because this is the time that they get to answer those questions in their own words, they get to let others know what helps them feel safe, what values they want to have throughout this, what changes they are seeing, what do you hope people around you will know as the life changes, your wishes? So for families and care partners, the shift is really from planning for someone to planning with them. They I call this a superpower, and the superpower is listening, right? To really listen, to write down the preferences we think we'll remember, but many times there's so much going on in that life that they don't remember. So to write them down, not only so that they know, but when they go to their appointments, they'll have this information to share with their provider. Um, a person can pay attention to the routines, the values, what their spiritual practices are, something as simple as what music they like, you know, what is comforting, what makes them feel respected. Because a person with dementia, they are in the moment doing the very best they can. And as they change, we too have to change, right? So the goal is never to take over the person's story, it really is to help to preserve it. So it is to include them. And in my volunteer work with people living with dementia, I meet with them weekly. It's a group of men across the country, and one person is actually in Germany. But I'm reminded every week that they want to be included, they want to be heard, they want their lives discussed with them and not around them. So the person with the diagnosis should be the first voice in the plan and not the subject of it.

SPEAKER_02
33:29

I would agree with that. I I totally agree with that. And I also think, too, as the person with dementia, you know, their diagnosis as a caregiver, you are also well, you should be anyway. It forces you to have to look at yourself as well, too. Yes, you know, and grow, like you just said, grow with it. And that's hard. That's really hard because like my mom didn't know who I was. Yes, you know, she thought I was just this really nice girl that came to visit her, you know. And and it it is hard to accept that, but yet they're still in there and to just kind of go along with them, you know, when you're with them in that moment uh for it, and then you when you leave or you have a moment, then you can cry and be upset that you know your mom doesn't know who you are, you know, type of a thing.

SPEAKER_00
34:21

But it is we call that living in their

Don’t Correct Connect Instead

SPEAKER_00
34:24

reality, right? If they if you come in and they think you're her their sister, you know, your mom may have thought you were her sister. What she didn't remember is that your presence made her feel good, and so she's receiving you, but to live in their reality is like when they you don't want to go, I'm not your sister, I'm your daughter, right? Because that's not their reality, and you don't want to have them have a stressful reaction. People think they become combative and they become angry. It is a stressful reaction to a situation, and so if we walk into those conversations with the understanding that we are here to make them comfortable and to meet them where they are, whether it's 20 years ago or yesterday, that the best thing we can do for them is support them and acknowledge their feeling, give them credit for their feeling, and and then move on to something else, but not to correct. We say in positive approach, we don't correct, we connect. And so it is to connect with them.

SPEAKER_02
35:44

And it does take a while to get there, but I was so I I was very um glad I finally got there because then I did have those moments with my mom, you know. You know, she she thought she, and when she was in memory care, she thought she was in her grandma's house. And I was very grateful that I paid attention to all the stories she told me about growing up and everything, so I could just join right in with her, you know. And if she thought she was at her grandma's house, I was like, yeah, that's where we are, you know, and uh you got to have those moments. And then she wasn't as stressed. And I know that I did become one of those people that when she did get upset, if I was there, you know, she'd grab my hand and be like, Don't leave me, don't leave me. And I could try to calm her down than to try to just, you know, like you said, stress them out. And that's always the one thing I try to tell people. As hard as it is, you need to enter their world. And it just becomes a lot easier all around. For everyone, yes, yes, everyone. Yes, definitely.

Where To Get The Book

SPEAKER_02
36:43

So, where can um somebody buy your book?

SPEAKER_00
36:47

So, right now it is with Morgan Publishing Company, Jane, James Morgan, okay, and they can go in to they can go to my website right now and get on my waiting list. It is going to be published in the fall and released to retail stores in the spring, but they can begin to purchase it in the fall. So they can go and visit dementia-consultants. There's a dash in between, dementia-consultants.com, and they can um join the wait list for the Prepare to Thrive toolkit that I mentioned, and they can also stay informed about the release of my book. There's a contact page, and I will have their information and share with them when the book is ready for purchase.

SPEAKER_02
37:44

Okay. And I'll make sure that we put your website on our on our page when the when this episode airs so people can get to it and and do that. So thank you so much for joining us. Um, like I have learned a lot today. I hope I'm sure my audience has learned a lot as well too today. So I hope you have enjoyed our discussion today. So hopefully, yes, and I hope everybody has learned a lot as well. And make sure you go to the her website so that way you can get your toolkit as well. So please make sure you leave us a review. Uh, join our YouTube, subscribe to our YouTube channel as well. And hopefully you have enjoyed your cup of coffee, your cup of tea, or if you're having that really bad day, a glass of wine, and join us for another episode of Daddy's Place.