Alzheimer's: The Caregiver's Perspective

>> My mother was very meticulous. She colored her hair from age 16. She was a Marilyn Monroe blonde -- a very, very sweet lady, and she was a different person. She was haggard-looking, her hair wasn't done, the house was dirty. I was like, "Whoa. What did I just walk into?" >> She came to visit me in New York, and we were walking down the street, and she went to the wrong doorway, and, I mean, I had lived there for 10 years at that point, and she definitely knew where my apartment was. >> She would leave to go to work, about 50 miles, and every day she would call and say, "Call me back in a few minutes," and what was happening, she was getting sleepy and would pull over and take a nap. >> He would come into the room and say, "Where is my pencil?" He's an accountant. I would go, "It's in your office." I was like, "What are you talking about?" Five minutes later, "Where is my pencil?" >> In my mom's case, this person talked to her on the television, and she was able to talk to this person back on the TV. First time, you'd think, "Oh, this is -- She's just joking," but she was sincere. >> When you'd call her on the phone, she would be good for the first 5, 10 minutes, and then, all of a sudden, the switch would hit, and it would be the same conversation again. >> We started fighting a little bit, and he would just say weird things or do weird things. His memory was fine. I went through the checklist of things online, and he passed with flying colors, actually. He remembered people's names, he wasn't losing his keys, he wasn't getting lost. It was really more of his personality was changing a little bit. >> We have people who are struggling all over the place, and it's time to quit acting like this is a rare disease, that only the odd person gets upset and only a few family members are giving up their lives. Oh, this is everywhere. >> We sat down with the neuropsychologist, and he talked to us about what the testing was gonna be. He did some initial testing with Arnie, and, quite frankly, my stomach dropped to my feet, and I wanted to throw up. Because some of the initial testing showed things that I had no idea that he couldn't do. >> They asked her to draw a clock, and when she drew the clock, you know, couldn't quite get the hands right. We had trusted her with everything -- you know, pay the bills. Whatever we needed done, you know, she had always done. And so now if you can't do something as simple as that, that means we really got to help out. >> It was a long, drawn-out, tiresome test. Yes. 'Cause some of it, I got a little upset because, it's, I guess, confusing, a little hard for me to do. I felt like I should be able to do it, but I was having difficulty doing it. >> It was a couple of years before we got a diagnosis, and, at first, it was, you know, some kind of Alzheimer's, and then as they continued to work with her, they said that she has Frontotemporal dementia, FTD. >> Dementia is sort of the umbrella term that means cognitive impairment. There are many, many, many different diseases that can cause dementia. Alzheimer's disease is the most common, making up about 65% to 70% of all the dementias. >> One of the first steps I always tell people is to go to an elder law attorney first off to make sure your finances are in good shape. Join a support group. The information you get from a support group is invaluable. The more you know about this disease, the easier it is to cope with it. >> When Ted started having symptoms, I read and studied everything I could get ahold of and learned it's a brain disease, and just like, you know, an organ stops working, the brain stops working. That helped. >> Currently, we have 72 degrees. Donald, as everybody knows, was diagnosed with early-onset Alzheimer's at age 39. Am I right? >> 39 is when he first started having symptoms, and it took two years, which is a normal timeframe, to get a diagnosis of early-onset Alzheimer's, and so he was diagnosed at 41. >> I don't think they want to hear your theme song, do they, Don? >> Why not? >>

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We'll just play a little bit of it. >> Supposed to meet someone for lunch today But I can't remember where

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>> At what point during this process in the beginning did you finally end up reaching out to the Alzheimer's Association or discovering it? >> It doesn't have to be Alzheimer's. It's any type of dementia. One of our hopes is that doctors will immediately send you to the Alzheimer's Association. That does not happen. It didn't happen to us. In our situation, we were told to go home, get your affairs in order, that this was early-onset, and it will go very quickly, and the first thing I had to do was to educate myself. Meeting other caregivers and being a part of a support group, and going to the Alzheimer's Association's educational programs have truly saved my life, because without them, I would have been lost. >> So, alz.org. Oh, Donald, Christy, we love you, guys. >> Love you, too, Neal. >> So this is all you do all night is just walk, walk, walk? >> Yeah. >>

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>> Yeah. >> Do you remember which one your room is? >> Mnh-mnh. >> Keep walking. Uh-huh. Take a right. And we're back in your room. >> Yeah. >> Mom is just really interesting to watch because every day is a different day, and you look at her some days, she's just really up and on and ready to go, and other days, like today, she's very sedate. She's in her own world. Some days she's really far back in the world, other days, you know, she's maybe 10, 12 years ago. She definitely can't live on her own, but there are days that you think that she could be in just a true assisted living, but you know that she can't. >> That's my uncle Ed Tobin. And that's... What do you call that tall...? >> The water tower. >> Water tower. Yeah, where daddy worked. >> Taking your parent to court to declare them incompetent is a pretty sobering thing to do.

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And when the judge looks at you at the end of your hearing, at the very end, he goes, "You fully understand that you are responsible for your mother for the rest of your life." And I can remember when the judge smacked his little gavel, everything just got dark kind of coming up around you, and it's like,

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that's an anxiety attack, and you take a breath. You've got to take a breath. >> That's mom it looks like. >> Yeah, that is. >> That is my mom. >> Everything that you're responsible for, for their clothing, their food, their health, their dental, their eyesight, everything -- that is your responsibility. You have just added another person into your household. >> I will one of these days. >> Oh, you will? >> Yeah. >> What do you think you're going to tell me? >> I don't know. >>

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>> This ain't a good one. Well, the family didn't believe it at first. I still kind of think they're not 100% sure. Lelia went from a person that was always happy, quiet, humble, nothing to say, and to cussing. At first, it was funny because nobody was used to her cussing, and she didn't know how to cuss. But, you know, the hardest thing about it is that when other people are involved, they really remember the way you were, so they expect for you to still be able to do the same things. Other people think, "Oh, well, she's fine. She's fine. She remembers better than me." So you get that a lot. I say, "Hey, just leave her alone." We bought a BMW over in Germany.

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>> A Volvo in Germany. >> Yeah. Hey, man. We did some fun stuff. >> Yeah, we did. >> Nice One. Beauty. Well, dealing with the diagnosis and looking forward, I think to stay somewhat positive, I have to look backwards of the things that we've already done. Before this disease, we were able to travel a lot. We were planning on doing a lot of traveling when we retired. How's your coffee? >> Wonderful. >> Even though I want to travel more, travel has become difficult. We went to Florida not long ago, and we cut our vacation short because she just was out of her element. She wanted to come home. The average life-span for somebody in our situation is 4 to 8 years. She was diagnosed 3 years ago, so I don't want to dwell on that. We know it's ahead, so let's just, like I said, live for the day. I don't want this disease to define who I am. Hello. >> Hello. >> All right, wait a second. >> Okay. >> Do I put this like this? We try to make sure that we're exercising, walking the dogs, doing as much as we can. I mean, working in the yard together, that has been amazing -- you know, planting the plants, watching the things grow, enjoying the time together. >> It is peaceful, and it's relaxing, though it still takes a lot of sweat and work. >>

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But he's good at it. He's really good. We didn't know this before. Look at the skills that we've discovered. >> I have left the oven on. I've left the stove on. So I have to be very fastidious about things, constantly checking behind myself. Some days are clear, and then I'll get disrailed where, suddenly, um, it's like everything's just jumbled up. It's extremely frustrating. >> I am the partner, so my job is, is that every day, he's safe, we're safe, and every day should be the very best it can be. Now, that doesn't mean -- that said doesn't mean that we don't have time for sad. I mean, this is a diagnosis that's pretty stinky, but the bottom line is, is every day needs to be the best it can be. I think we might end up with a

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swing! >> No, there you go. It's not making it to the ground. >> His mornings are so much different than his afternoons. And so we work with that. We do the things in the morning, the stuff that needs to get done. >> I took him out every day. I felt like he needed to see the outdoors, hear the birds, see the flowers, see the trees. He still was more comfortable. He was quieter. >> The cardinal rule is never argue with a person with Alzheimer's disease 'cause you're gonna lose the argument. So you have to divert their attention. When my wife would say, "I want to go home," she didn't necessarily want to go to a structure, per se, but she wanted to go to a place of comfort where she didn't feel what was going on in her head. So I found that when she got anxious like that, and "I want to go home," to distract her, I would take her out and put her in the car, and we lived a mile and a half from the oceanfront. I'd ride up and down, and she'd look at the lights and just think she was in seventh heaven, and we'd get back to the house, and she would look up and say, "Oh, thank you. You brought me home." And that was the place we just left 15 minutes prior, but it was enough in her mind to calm her down and divert her attention. >> Well, my grandfather, he was used to eating at 5 o'clock when he was younger, and as his dementia got worse, my mom would frequently not get

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00. So at 5 o'clock, it would start. "Where's supper? Why aren't we having supper? I need supper. Why the hell can't I get supper? This is ridiculous." And he'd get really adamant. So I learned to cook so that there would be food on the table at 5 o'clock. I've got to figure out how to cook a couple things so he'll have it, and then I could give it to him when he wanted it, and then we didn't have a battle. >> If you can focus on the things that the person is still able to do, you can suddenly realize all the opportunities that there are. So, for example, he remembers Brooklyn, he remembers that he grew up across the street from Ebbets Field. >> Ebbets Field. >> We decided to make a story about my dad's memories of Brooklyn because he would suddenly come to life. We sat together, and I just typed it as he said it. >> I was a middle child. >> Most of the time when I'm with him, we'll actually sit and look at that book together. It's less about conversation now. Where he is in the disease process, it's about listening to some music together or watching something. It's about painting. He was an artist, as well.

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>> Something like the colors here, right? So I brought some things to finish, and I got another book, too, to look at. We were working on this one. When I was growing up, my dad and I did a lot of hands-on-type projects, so now that he's here and still has the ability to do some art, I'm attempting to see what he can do. I've done a little a bit of coloring with him and a little bit of water-color, but I think there's probably more I could do, and I'd like to do it soon before he loses that ability altogether. >> This branches off? >> Yeah. With something to focus on to do together like this, I'm not having to think of questions to ask him to engage conversation, and then him being frustrated not knowing how to answer me. So there's a connection we can make even unspoken just out of the intuitiveness that we have in the arts, I think. >> Ain't nobody gonna blow it out I'm gonna let it shine Ain't nobody gonna blow it out I'm gonna let it shine >> The other thing with the arts is fun for all of us is that we're all musical. Our whole family has interest in music -- guitars, piano, singing. So it's one way that we can all share something and have it be really meaningful and powerful and encouraging. >> This little light of mine Well, I'm gonna let it shine >> Yay!

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Yes. The last time I tried doing a puzzle with her was right after her birthday in February, and it didn't go that well. She got really frustrated. She didn't do any of that today. She was more problem-solving. That was very unusual, but we went with it. It was great, and we managed to finish the entire puzzle. That is rare. >> Yeah, that's amazing. >> That is amazing!

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Yay! You did it! Do you like your picture? >> Mm-hmm. >> You know, my motto for this disease is, "Have no expectations," because I had no idea what was gonna happen today, but it was like the best day ever. You know, she used to repeat everything all the time, and she's definitely not doing that now, and, you know, she's barely talking most of the time, but today she's said a lot doing -- making the puzzle, and so that was unusual, too. So you never really know, but Sunday she might have said 20 words, maybe. That's hard watching the words dwindle. But, yeah, when she said "amazing" today, that was amazing. I hadn't heard that word in, I mean, years. And I also loved watching her look at the pictures in her yearbook and still being able to recognize a couple of classmates. I think it's just one of those trade-offs. She recognizes a few people, but she still doesn't recognize us. >> Yeah, there's two right there. >> The other thing that was a little surprising today, her walk is much less confident. She's really doing that shuffle, which is hard to see. She is very uneasy, it seemed to be, trying to get from the kitchen to the bathroom and that kind of thing, so, yeah -- interesting. >>

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>> Taking a dementia person to the doctor's office can be one of the worst experiences any family member goes through 'cause they don't understand why you're in charge. This is not the doctor they remember. They're not hurting right now. You're making much too much of this. You know, and you're just trying to move it forward, and they're just giving you all the reasons that you shouldn't be doing it. And you really need a lot of support from the doctor's office and their personnel to understand dementia. When she had a back fracture, we had to take her to the E.R., and I had to say she fell, and this is what happened, and the whole time she's saying, "I didn't fall. She doesn't know. She's never with me. She's never here." And the next thing I know, their Social Services person is coming and having a conversation with me, and I learned since then that I had to carry around with me the power-of-attorney document, the advanced medical directive document, and the evaluation from her therapist indicating that she had dementia and fluctuating dementia, and that she could not accurately answer about her condition. So that can be pretty scary. >> I think what you find in Alzheimer's is because there's no medicine to alter the disease progression, it's a series of medications to simply manage the symptoms. >> One thing that we feel so blessed about is the fact that he's still able to communicate. We believe that is through the research we've done and through the studies he's been in. About three years ago, Don was put into a study at John Hopkins where a DBS unit, Deep Brain Stimulator, was placed in his brain near the fornix, and what they are hoping that does with the impulses that it sends, it will help Alzheimer's patients be able to communicate. He's one of 42 people that have it through this study. >> I can't hardly put a sentence together when this is turned off. >> It won't slow the disease or stop the disease, but what they're hoping is that it will continue to give them the ability to handle things in a situation differently. Get her Gracie! Get her!

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There are times that he does not communicate at all, and he will have a blank stare. >> Oh, really? >> He's not in there. >> Oh, see, I'm not aware of that. >> Right. And, you know, it's so important when someone goes to the doctor's office, who is just thinking they might have Alzheimer's, or something going on, to bring people who know you. In the beginning, he said, "Are you anxious at night?" "No," Don would say, but, yet, I would catch him in the middle of the night walking around the house with a loaded gun in his hand, and that was a big eye-opener for me that I needed to start protecting him, as well as myself, and but if you had asked Don, "Were you anxious at night?," he would say, "No." And what scared me about that is when he is sundowning, he really can't be responsible for what he does because he's not doing it on purpose. >> If you haven't walked the walk, don't give me the advice because you don't know what you're talking about. And I honestly believe that. With this disease, specifically, you have to have walked the walk to appreciate it. I can't fathom anything that is more difficult like that. That was a challenge to everything that I've ever done. >> What do you want to eat? >> Tuna-fish sandwich? >> You can tune a piano, but you can't tune a fish. Right?

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It's very demanding. I'm working for two people now. Come 4 or 5 o'clock, my patience meter is pretty pegged -- you know, being asked the same question over and over, helping Dee do things, which I love to do. It's really discouraging sometimes to try to find something, and you can't find it because it's not where it's supposed to be. This is all the time. But, yeah, patience is very, very important. You got to have more on your sandwich than that. There. She has become very dependent on me -- very dependent. I'm her security blanket. You know, whereas, she was very independent. She's a tenacious businesswoman. She was a go-getter. She was a rock star. I mean, she climbed the corporate ladder, and then, all of a sudden, she was slipping at work. There was no reason for her to be faltering at her job and being laid off. Who would have thought that at 48 that she had Alzheimer's disease? >> Oh, I notice a lot now. I always thought it would go pretty slow, and, to me, it's not going slow, and that worries me, and I know it worries Rick. It's just a terrible disease. I'm very scared. I go back and forth. I can keep on going ahead, and everything's going to be okay, and then other days, I'm just, like, real discombobulated. >> We're a member of an Alzheimer's support group. Of course, we're the youngest couple there, so I see what I'm gonna see in Dee in, could it be a year, two years, three years? I don't know. Like I said, day by day, and we're just gonna keep on moving ahead. All right, here's to us. >> Mm-hmm.

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>> It's a journey you take together. Two different roles. It's still a learning experience 'cause he's still trying to figure out how he can do better, and he can't. Me, I can do better -- that's the biggest thing. I can and he can't. Around here he takes the little ones out. You know, they go outside and eat peanuts, or he goes outside and watches them when they're in the pool, bike-riding with Tyler. They keep him busy. >> Oh, Lord. They are the greatest thing in the world. Having such a good family as I've got, they do wonderful. I feel like there's 10 pounds of weight on my tongue alone, and it's kind of like Alzheimer's, I guess, so... And sometimes I can't say "Alzheimer's." I put five dementias all over the places, looking at it. That's what helped me out with it and put dementia right there, and, you know, they have a thing in the garage that goes up and down, and I could not -- Sometimes I actually forget it, and I'm outside. Yeah, it kind of wears you out, and that's kind of weird, 'cause, I mean, I feel like I'm in decent shape. Not anymore.

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>> This is kind of hard because I never know. He can start off the day good, and then he can plummet by afternoon. If he's tired, if he's strained, it's all trial and error 'cause it's new to me. It's amazing how many do this alone. That's hard for me to believe, but it happens. You got to have the support. I can't imagine. We've got a great family. I think you go through the stages at the beginning. You want to fix it. You want to protect. Is this really happening? And I think once you kind of knock those walls down and start going to the place like Center of Aging, through these classes, receiving the help that's there. >> So I just want to make sure you're getting taken care of, Mom, you're getting what you need. >> I'm good. I got them. >> Yeah. >> That's how I look at it, because I don't have all of the weight on my shoulders. >> Yeah. >> We need to intervene more with her 'cause she's not gonna ask for help. >>

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>> But you do help if I need you. >> We do, but, I mean, we're just gonna have to overstep our boundaries with her to, you know... >> Oh, dear. I'm in trouble.

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>> You need to tell us if you're sad or you're bothered or you're -- you know... >> Well, I'm getting more concerned because I see him not being as active as he used to be because he's always been so active, you know. >> But this is affecting all you guys. I mean, Skip, you've described him as your best friend. All you guys are so close with him. How is this affecting you guys? >> I don't even have the words. You know, it's hard when your -- Anyway, it's just hard. >> It's just hard 'cause he, um... I always considered myself daddy's girl, and... I don't know. He was my superhero and my hero, and is and will be. >> Yeah. >> I'm blessed that we're close, that we have each other to depend on and talk to. >> The fact that this brought us all here together... >> Yeah. >> I mean, that's awesome. >> Yeah. >> I mean, the fact that he's sitting out there and laughing and smiling, and there's still a lot left. We're not quite to his shell yet. I feel like there's so much, and it's a beautiful thing, and sometimes I'm very thankful. I feel like this is time that we're not taking for granted, so, to me, that day's a good day. >> That's for sure. >> Do you claim all of us? >> Yes. >> Okay. So we all belong to you. >> When we were traveling back up north, he became very disoriented there,

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30 in the morning, he got up. He wanted to get going. He needed to go to the other hotel, that his friends from Boston were going to be taking him back to Boston, and I said, "No, I'm taking you back to Boston." He goes, "Like hell you're taking me back to Boston." And so he goes into the shower, and I thought, "How am I gonna keep him here? I cannot get up right now and drive 300 miles." So, I took the clothes, and I hid them under the bed. So he came out looking for his clothes, and they weren't there, and I said, "I just gave them to housekeeping. Housekeeping has your clothes. They're gonna wash them, and were gonna get them back in an hour." And he said, "Jesus Christ. You

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I should slit your throat for that decision." And that was the first time that I got really scared, and I thought, "Oh, my gosh. He doesn't even talk like that," and so you wonder who is that person? And since that time, we've got him on different medications, and we have help with the anxiety and aggression, and so those moments don't really spin out like that anymore. Good morning. >> Good morning. >> How's things in the office today? >> Office? Office today is wonderful. >> I mean, he'll get upset when I'm trying to tell him what to do in the shower because they feel like they don't need help. "I've been doing this my whole life. Get the 'F' out of here," but I don't get the "F" out of here. I stay there, and I continue to do what has to be done, and it all gets done, and he thanks me. So it's just different every day. You just don't know. You don't know. Okay, so the video that I did of my husband spinning out of control was taken right before I was going up north for our last summer in New Hampshire with all the family, and I wanted them to know really what could happen because I knew that they would be spending time alone with him, and you never know when it's gonna happen. >> You don't -- You don't belong here, okay? >> Okay. >> This -- This belongs to the top person of this company right here. >> Okay. >> This is locked. You don't belong here. >> Okay. >> You don't belong here. >> All right. >> All this stuff in here has nothing to do with you. >> Okay. >> Where you belong in here is either with me down there or in here. This is probably better for you in here. You can be in here, okay? >> You want me to sleep in here? >> It's either here or with me down there. Probably better here for you. >> Okay. >> Take this one, okay? >> All right, I'll take this room. >> They had no idea that that was part of Alzheimer's, because they show you on TV the person leaves their keys in the freezer. I mean, please. That is nothing compared to the stuff we have to manage -- the unpredictable nature that comes in, and then it goes. >> You don't go in here! >> I do. >> You do not!! >> But I love the way the video shows, is it shows him the day after, being that sweet man that he is. >> You look good. Hey. You gonna go get your coffee? >> Yes. >> So I'm back in my room. >> The reason I'm wanting to show this video is that I want to show the disease. It's not a reflection on who my husband is, it's just that disease, because he would never act like that. >> There's this judgment we put on caregivers and family members about whether they do or whether they don't and how they do it, how they treat and how they talk, and everybody is so scared about this thing, and they're so silent about it that I think it all goes underground, and so there's a lot more ugly stuff going on. People are doing the best they can 'cause they're afraid to ask questions because they'll get judged. We've got to start being aware that every time there's a person living with dementia, we actually have two people who are really struggling. >> One night he woke up and grabbed my hand and pulled my hand back so hard, and he said, "Somebody is after us. We're being chased. They're going to hurt us." And he was frantic. But he bent my hand back so far, I thought he was going to break my hand. I turned the lights on, I talked to him. I calmed him down. I was scared. I didn't know what to do. See, that's where you got to understand it's a brain disease, and the brain is deteriorating. It's lucky if it can remember how to put a spoon to your mouth. It's very hard on the caregiver 'cause you've got to be on top of it 36 hours a day. Yes, you lose sleep. Sometimes he'd take a nap, and I'd pray it would be a 15-minute nap so I could get a shower. >> You're the best. You're the best daughter. >> Thanks, Mama. So I think that maybe that's what I wish I knew about being a caregiver. There is no break... and so that's where the idea that, you know, my emotional resources are limited. You know, whereas, I'm so patient with my mom, but it's like that's where my patience ends, because I have to tell her to do something 10 times, and she really can't do much by herself anymore at all. I think it's important to constantly be grieving because otherwise you're just in denial. It works, but it's exhausting, you know. That's what I tell my therapist. Like, every day you have to actively work on it. >> You're the best daughter. >> Thanks, Mama. And adopting a dog was a big part of that, too. You know, that is going to force me to spend time outside. People are like, "You've got all this, and now you're going to get a dog, and you don't have any money?" And I'm like, "Yeah, it's a dumb decision, but, in a lot of ways, it's a really good decision" -- not that my dog is gonna help me with all these problems, but to just love you unconditionally, right, and to always be there is a silly thing, but it matters. >> You have to put yourself first, and that's important because you can't be a caregiver if you're ill yourself, and most of the time you fall ill because you're not getting enough sleep, you're not getting enough exercise, you're not eating well, you're so worried about them, but if you don't take care of yourself, sometimes the caregiver dies before the loved one. >> I actually felt like I was his caregiver -- making sure you were eating, making sure, you know, he was -- and it didn't always work, but... And sometimes it would end up being a fight, but trying to make sure he was doing what he needed to do, too. >> Oh, it helped me immensely. I don't think I could have done it anywhere near the quality of what I did without her 'cause she pushed me in times that I needed pushing, and in some cases not enough, but because she wasn't totally in it, she was able to see things from a different way and got me to do things that I probably wouldn't have done if I was doing it myself. That helped immensely. >> Right. How much longer do you plan to make sure she eats at least one meal a day? >> Right. >> You know. >> We go through rough times. I used to come home sometimes and go in my bedroom and sit in the closet and just cry because I was watching my mom disappear. And then I'd pull my bootstraps on and say, "I got to do this." So those are the kind of things that you have to work through. It's not that simple, and there's no formula that I can give anybody that says, "Do it this way." It's what works for you in your heart as long as you don't lose yourself. >> We just forgot our anniversary,

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quite frankly. So, I mean, this is kind of how it impacts husband and wife. You know, you just don't have time to do the things you need to do, but we try. We still are trying. I think, overall, our energy level is also affected, so we're just tired. I did pretty well for the first three and a half years, but I had a bad car accident, partly because I was so fatigued and distracted. I was on my way to pick her up, and I rear-ended a car, and I was lucky that I walked out of it. That can kind of tell you that you're just not 100%. >> We all have negative thoughts about what we're going through, and the sooner we can stop feeling those terrible thoughts, the better we can start restoring our energy. So we just have to find ways to find our center. So meditation is very powerful, acupuncture, craniosacral therapy. Aromatherapy is fabulous. It will help clear some of the negativity and the drain. >> More than likely, it tends to be that the caregivers get sick quicker and end up dying before the person that they're caring for dies, and that's something that the Alzheimer's Association will tell you over and over and over again, but it's hard to listen to that because you feel selfish, and you feel like, "Oh, I'm worried about how I'm feeling versus how my loved one is feeling." Last year, Don was showing signs of progression, and I was helping care for my father, who recently passed away from cancer, and I didn't really pay attention to my health like I should have, and I got very, very sick. I ended up in the hospital for 45 days. I had no one in place to take care of Don, and we had to act quickly. Luckily, my son came home, and he really had to fill in for me because I did not have that plan set up. I never thought that would happen, and so it makes you realize that you have to think of every possible risk of something happening and you not being there as the main caregiver. >> A lot of times it would be, like, driving places that we've been a hundred times -- like, to a violin lesson or a piano lesson or to softball practice. He wouldn't know how to get there, and then it put a lot of pressure on me to remember how to get there, and then I would get frustrated when he didn't understand what I was saying on how to get there, but I just -- I would get mad at him. >> I feel like sometimes he would get kind of sad and understand that we were his kids, and we were getting mad at him 'cause he didn't know stuff, and a lot of times, he would handle it well, but you could tell that he was sad. >> The kids have saved me over and over and over again because I've had to focus on being a mom and not focus on what a horrible time in my life this has been watching Jim decline. I try not to get bitter about a lot of things. It doesn't do anybody any good, but I sometimes do get a little bitter because we just fell through crack after crack after crack, and it took away our family's time with Jim to enjoy him while he was at home. So we were turned down by the V.A., by Social Services, and by Medicaid. It was very stressful and very hard, and then when you would try to talk to people about it and get them to understand, they really didn't believe me because they were like, "There's got to be help out there. He's retired military. The V.A. should help him." And I'd say, "Well, the V.A.'s not helping him," and they'd say, "Well, what about Social Services or Medicaid or Medicare?" And I was like, "No, it doesn't cover this." There's not one person to go and help you navigate all of the different services, fill out the paperwork, and get answers and do all the follow-up. You have to do that yourself, and it takes a lot to be able to work through -- everything from getting your disability to finding treatments, to getting assistance towards the end. So it's a lot on the caregiver. 24/7, all I thought about was Alzheimer's. I went online and did research, I talked about it, I advocated, I started writing the blog about it. It just consumed my whole world, yet, I think, again, as a human, as this person, I'm just hoping beyond hope that maybe they're wrong. Maybe this isn't really happening. Maybe he's gonna be okay for a while. Maybe the kids can get through high school. Maybe -- You just start looking for hope. So every time he would do something that was so unlike him and a sign that the disease was progressing, it literally would send me in a little tailspin. >> After the eight years, it probably started to go downhill. The soapies on TV disappeared. The only thing that worked was going out for a ride, taking the dog for a walk, and then the thing that saved my life for a long period of time was she was able to fold laundry, and that gave her a feeling of accomplishment. She was able to do something. And then when it got to the point where I said I just can't entertain her anymore, she wasn't sleeping at night, I didn't think I was getting enough activity during the day, so I decided to place her in an adult day center, and that probably enabled me to keep her at home because they kept her active all day long, and I was

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00 shift, so I only had two shifts a day as opposed to three. It's so frustrating -- the things that you take for granted. "Put on your coat, Sarah. We're going to the Adult Day Center." And she would look around. She didn't know what a coat was. So you'd give her the coat, and she wouldn't know how to put it on. So you'd have to put her arm in the coat and then pull it up and then put her other arm in, and it really is frustrating to watch that type of deterioration in the person that you really love and care for. >> Watch your step. >> Can you get out? >> Okay. >> Good job. >> What do I now? >> Ready to get in the truck? Okay, grab the handle, turn. Grab the handle. >> Oh. I don't know if I can reach it. >> Okay. Step up. Put your hand here. >> Hmm? >> Step up on the running board. >> On the running board? >> Right here. Put your foot right here. There you go. Now step up. There you go. >> Okay. And I get up here? >> Uh-huh. Very good. >> Okay. >> And we got to put your seat belt in... >> Yeah. >>...so that you don't get a ticket from the mean old policeman. >>

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You know, we carry our little supply bag around that has the Depends and the -- Well, they're actually pull-up underwear. We have that and all kinds of things to grab and keep her attention, and you learn over time you need those kinds of things because if the car is a mile away in some garage, and things start to go bad, what do you do? So we just take the bag everywhere. You okay, Ma? >> Yeah. >> Well, that stuff goes in the house with you. That's the stuff that I bought for you today. >> Oh. >> Pretty cool, huh? >> Thank you. >> You're welcome.

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>> Hi, this is Loretta. How are you? >> I'm fine. I'm fine. >> Good. We'll be back in about 10 minutes or so. >> No problem. >> She had a good dinner, and the bra she's wearing is one of the new ones. I wanted to just check the size. It does fit, so I'm going to get her more tomorrow, okay? >> Okay. Thank you. >> All right, see you. Bye.

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The caregiver I was just talking to has been there at least 10 years and maybe longer, but I talk to them, you know, every single day. Prince George's County, which is what this is, won an award to become a testing ground for dementia-friendly places, meaning there's always somebody that will be trained in how to communicate with dementia patients. Just a couple weeks ago, somebody got lost, and they put out the Silver Alert, and the nice policeman, who had been dementia-trained, and he walked with the lady in the woods, kept her calm till her daughter came. So that's a scary thing. I've only lost my mother once, and so I understood what that lady was going through for sure. All right. We are here. All right, kiddo. You want to turn this way for me and swing your legs all the way around? All right. Whoo! >> Right here? >> There's a step right there. Got it, babe? Good job. Man, that was awesome. Hold on. You ready? All right. >> Where we going? >> We're going right here. You want to hold on? Being able to have her in a really nice home, it's a single-family home, very much like our own floor plan in our house. So I feel, you know, she's very safe, I'm very happy with it, and I'm fine with paying. My greatest fear, and the reason you look at options and what might be coming in the future, is because I'm asking myself how much longer am I going to be able to do that? >> Now that she is here, I am still a 24-hour caregiver. I still get called, you know, every time she gets a scrape or falls down or is sick. It's harder than I thought it would be. I thought there would be this great lifting of anxiety and responsibility, and there's not. Even though this is a dementia unit, it is licensed as an assisted living facility, and it's true. They get assistance with what they do, but once she needs help with absolutely everything, what they do here is they move them to the nursing center, which is, you know, sort of the third part of this particular community. >> She refused to go to a doctor, ever, and never had gone to a doctor, and was not on any medication -- healthy as a lark as far as overall general health, and so trying to get her to a doctor to get something on paper that said she needed to be in assisted living was another issue. So we took her under the pretense that we were going to get her leg or foot looked at, and we had told the doctor that. He agreed to go along with that. >> He said, "Let's go with that." >> And so once he surmised in talking with her that, yes, this is something that needs to happen, he then came out and said, "Looks like we're gonna send you to a hospital to have your leg checked out. You'll just be there a couple of days." So when we got there, we just told the assisted-living people, "She's here for her leg or her foot," whichever it was. >> And they knew to go with it. >> And so they all said, "Oh, we're so sorry to hear your foot's got a problem. We'll take care of you, and here's your room," and so that's, essentially, the only way we could get her in there. >> She accepted this and let us do that. >> Surprisingly well. >> And that was her life from that point on. >> Yeah. >> Trying to just figure out where all that money was coming from and how we were gonna do it was the big push for me. I just -- I didn't know how we were gonna pay it. I still don't know how we paid it. >> We made the move. She had difficulty with the transition. She was confused. She still hung on to that "I'm gonna go home soon. I'll try this out for a while, and then if it doesn't work out, we'll go somewhere else." It took time for me to learn not to argue with that... to just say, "Yep, I think that's a good idea," but then just continue on the path. So it wasn't 12 weeks that I realized there was no way to confirm that she was getting her medications or that she was getting her checks without having private duty there if I couldn't be there. Even then, with her dementia, she couldn't remember that she couldn't walk when she wanted to walk. We pretty much moved to 24/7 private duty in an assisted living facility. You know, there are regulations in place for assisted living. I think in the reality of who you see admitted and who you see living there, I don't think the regulations go far enough to protect them. >> His last month at home, he sat on our couch and listened to me make phone call after phone call after phone call, begging for help for him. He had gotten violent on a trip to Connecticut, and I couldn't leave him alone. I couldn't leave him alone with the kids anymore. I didn't know when he would have another episode. But he just sat and listened over and over and over again to me beg, and I regret that probably more than anything because it took a lot of pride from him to know he was that kind of burden on his family, and it was hurtful to know that I was so desperate to get him out of the house. Fortunately, our community surrounded us. That saved our family, because, honestly, I really don't know what I would have done if I would've had to keep him at home. It's almost Bradley's birthday. >>

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>> Bradley's gonna be 12. >> 12? >> Yes. >>

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Oh, my gosh. >> "Oh, my gosh" is right. Yeah, he's gonna be 12 years old. Frankie's 15. She's taking Driver's Ed now. And she's playing softball. She's playing for the school. And Bradley's trying out for the school basketball team for middle school. So they're really busy. They're doing lots of stuff. Just like you always have been. When he was laying in bed, and he was non-responsive, and he was dying, it was really, really hard to see him like that. So I go from picturing him the epitome of health and love to seeing him sick and then dead, and so I try to force myself not to do that, but then it hurts because it's very hard to recognize that somebody so healthy could now be gone completely. >> Sarah was in bed maybe four days before she died. That was all. She was standing prior to that, and she was laying in bed, essentially, just going through the dying process. She had stopped eating, stopped drinking, and the organs were shutting down. She actually verbalized and said, "You know, I'm dying." I actually watched the process with my wife until she took the last breath, and she literally just forgot how to breathe and died. When the death came, I thought, "I've had plenty of time to prepare for this," and it was a totally different type of grieving. Once the death actually occurred, it was a very difficult period of time for me, personally. I had a diagnostic brain autopsy done at the University of Virginia, and there was no doubt. The brain was full of plaques and tangles -- completely full. So the diagnosis of probable Alzheimer's at that point became it was Alzheimer's disease definitely -- no doubt. >> I never got to say goodbye. By the time I really knew my mom had this disease, there wasn't any opportunity to have a real conversation. That's why they call it "The Long Goodbye." So when she died, as I held her, and took that last breath, the floodgates of tears came 'cause I really learned something -- that even though she couldn't communicate with me the way we communicate with people, she was still alive. She was still my mom. >> It is the sixth leading cause of death. That's pretty big numbers. No cure. Five million people living with this disease, so speaking about it and not being afraid to say the word loud and clear, we'll find a cure. I'm very hopeful. We'll find a cure. >> His mother passed away from younger-onset and his brother passed away from younger-onset. It was really important to him to be part of a solution because he carried around a lot of guilt, thinking that he may have passed this horrible disease on to his children, and he's pushing me forward to always advocate to help find a cure because that was really important to him, and it was on his bucket list. >> How are you doing, dear? Good to see you. >> Hello, everybody. Hi. >> I'm so proud of you and how you -- you're fighting. >> People are talking about it. People are rallying around it to try to find a earlier diagnosis, better treatment. There's nobody out there that hasn't had it touch them or their family, and I think everybody's becoming more aware of it, and when you become aware of something, then you start to act on it. >> It's affecting everyone in every class level, in every age level, and every gender -- all demographics across the board. It's not just grandma's disease anymore. It's everyone's. >> This disease will either shut you down or it gives you a catalyst to do things. You want to do something. You want to fix things to make life as normal as possible. The person whose life is just in a total shambles has a day or two of normalcy. That's the greatest gift you can give them... is to know that they're cared for. >> I think to let him know that he's loved, that's he's not a burden, that we pull together. I'm getting emotional thinking about it, but that's really important to us, I think. >> She's a pleasure to be with. I want to check in on her for myself, and I also want to say hi for her. I do it because I am her caregiver. It is definitely part of, you know, my identity. >> It's not about whether they'll remember.

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It's I'll remember. And, for me, it completes me. >> We always depended on her. Now, you know, that's just the truth. So now, you know, we've got to do this. It's the only right thing to do. You know, you can't just bail out, and that's the way we feel. We've got to do this. >> There's aspects of who she is, the kind of woman she was, that people can still connect with. My caregivers love her. She can be so funny. She'll go up to a kid, and she'll cuddle their little feet, and she'll say, "Hello, sugarfoot." She's still there. >> Spend as much time with the person as you can. It might be really hard to see them like that. In the long run, you'll end up regretting it if you don't. >> Cherish all your moments that you have with them and make sure you remember them. >> Oh! You caught it!

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Look, it's snowing! >> Yeah. >> What we've learned is that no one has the answers for us. It's an ever-changing story because tomorrow Don will be different, and I know that, and that's okay. That holding of the hand, and that just reassurance that you're there for them, they can feel that love, and they don't need your words 100% of the time. All they need to know is that you're there for them, that you're not gonna leave them, and that they're loved. >> Mm-hmm. >>

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Caregivers You're an athlete in a marathon race It's a constant challenge to keep the pace Don't do this alone and don't postpone The support you need for you to succeed Caregivers Join a support community You can learn more from the majority It's easy to find support online Stay out of the morgue with mayoclinic.org

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.org This is the long goodbye

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Goodbye It's okay to cry

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Cry This disease is a mystery Let's erase it from history

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From history