Transcript
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Let me see if I can remember it, dare D, A, R, E, don't argue, reason or explain.
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So that's our mantra. We we when she says, there's a bunch of people in the house and they all want to spend the night and I don't have enough food, and she calls me on the phone confused.
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I say, oh, you know what? They all decided they're gonna go out to a restaurant so you don't have to worry about making all those beds. What a relief. I think I'll come over and have dinner. Just let's just you and me have dinner tonight and let them go out and we just meet her now where she is.
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Hello and welcome to season three of dementia discussions. I would really like to take a moment to thank the guests who were on this past year, and to thank you the listener. I really could not do this show without you. And over the past couple of years, some of you have called me, so I am encouraging more of you to pick up the phone and call me.
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I'm accessible, and I'm so eager to hear your story. I'm at 310-362-8232 or you can email me at dementia discussions.net so again, thank you, and welcome to season three. I'm grateful for you and so looking forward to another year of us being together.
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Hello and welcome to dementia discussions, the podcast for and about caregivers. I am so thrilled to welcome my guest today, Charlene Houston. I know Charlene from a support group I co lead at UCLA at the Mary s Easton center for Alzheimer's disease research, and Charlene is here to talk about her brother and sister in law's journey. So a little bit different than we usually have often we have adult children, or we have spouses, but Charlene is the sister and sister in law of the person with dementia. So without further ado, Charlene, take it away. I'm thrilled to have you here today. Thank you.
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No Barbara,
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thank you for inviting me already. I'd like tearing up because this is such an important conversation to have, and it's it's such a hard journey. I have a small family, but we're mighty. I have two older brothers who I love and adore, and luckily, we're very, very close. And my older brother's wife was diagnosed with Alzheimer's at UCLA probably two years ago. The journey leading up to that for me began in 2015 I can remember very clearly my boyfriend at the time and I were hosting the big Thanksgiving gathering, and there were 33 people there, and it was a beautiful evening, but a number of our friends started asking me questions, is your sister in law drinking a little too much, or is she like, what's going on and and I was living in Los Angeles at the time. They live north of Los Angeles, and I thought, well, you know, I think we're just all having a great time. We haven't seen each other for a while, but I took note because more than one person asked, and then as I spent time with her and with my family over the holidays, I started to realize that there were disconnects in our conversation, ask a Question, get a different answer, and then things like driving, very scary to drive with her, and then very quickly, when she would come to visit us and our we also had a house there in that town. And when she would come to visit, she would call me, and she was lost, and I got really scared, and so I started having conversations with my brother saying, you know, this is scary. We I think we need to, like, start going to a doctor. And I'm a girl, Barbara, who loves information.
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I like research. So I started researching forgetfulness. You know, we're all getting older, is it just that we're getting older and we're forgetting? Is it just that we're stressing out because of daily life? This was pre COVID, and I found through the Alzheimer's Association, a form that I think it had like 10 signs and symptoms. What's normal aging? What's dementia?
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And I remember one of the questions was, if you lose your keys for your car, Can you trace back where you left them? And I could do that. So I thought, okay, cool, I'm good. She couldn't do that any longer, so I started tracking the. These events that were happening, and was very difficult for the rest of my family to come to terms with it. They didn't want to believe me. They thought I was overreacting. And then her best friend and I started talking about it, heartbreaking conversations, and she also wanted information, so she and I went on a mission to get information. So I started going to caregiver groups, I started meeting with people, I started reading books, I started learning, and it was a terrifying, but really enlightening journey, because I realized that I was probably going to be the storyteller for this in my family, and I was going to be the one to guide them through this completely unknown journey that we all were going to have to go on together.
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And your brother, where was he? And all this?
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He was scared and wanting to say that it was due to stress, and not willing to hear what I felt was really happening. And I want to go back 30 years, just for a second, because I realized that when I was 30 years old, my mother was diagnosed with cancer, and the way her diagnosis happened, the doctor said, you maybe have three weeks to live. Oh, my and I freaked out, and I he said, I want you to go in the hospital right now. I want to run some more tests. And I went to the I went to the local bookstore, and I said, I just found out my mom's gonna die. I'm completely unprepared for this. Give me every book you have about how to lose your parent. And I bought a stack of books about 12 or 13 inches high, and I took them back to the hospital, and I threw them on that bed, and I said, Listen, Mom, if you're going to go, you cannot go till we read all these books together, because I am not ready for this. And what happened is, she ended up living for three years, but through the journey of losing her, she was so graceful, and she was able to talk with my dad and my brothers and I, and we learned a lot about the process of losing someone you love. Now, cancer, obviously is very different than Alzheimer's disease, but I tapped into that memory, and when I try to talk to other family members, I tell them the story of why I'm so close with my brothers today is because, back then, we learned to talk about really hard stuff together, and we learned to look the monster right In the eye, and, you know, punch its lights out, but get information and also to learn to accept that, and this is the hardest part for me now, is accepting that some family members and some friends are simply not ready, willing or able to accept this diagnosis, and for them, it's really hard, and that makes it really hard for my brother and I to manage her care. So it was a long journey, and there was lots of tears, couple of gin and tonics, and a lot of hugs, where I said, I hate to be saying this to you, but I think we have to really pay attention to this. I hate that we're having this conversation, but I want to have it for myself, because what I'm learning is this is incurable.
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She will die of this. One day, we will be with her, and I want to have information, so when that happens, we're not caught off guard. And it took him a long time to come to accept that. And finally, he started to go to, you know, talk to primary care doctors, then neurologists, and then finally, when there was a diagnosis of mild cognitive impairment, there was a label that we could talk about
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sounds like you're kind of activated by these sorts of things in life, yeah? Like it sets you in motion to find out
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more and more and more weird, but true. Yeah. So when, when there was a diagnosis, then we could talk about it, and then I volunteered to go to some therapy sessions with her. My brother works full time, and I had experienced the loss of my beloved. Partner to COVID. I had time. I was grieving. It just it made sense that I had, I had told her, at a certain point, I'm no longer going to ride with you in the car. I'll drive you everywhere. That was a horrible process of of her, you know, her license being taken away, basically, she was in denial about it, and then I realized she couldn't remember that she had memory problems. And it was so bizarre Barbara, it was just, you know, trying to manage intimate relationship with someone who can't remember what you just talked about was really hard,
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absolutely. So the whole just like going back to the whole driving thing. So how did that go down with your brother? Oh,
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that's horrible. She her best friend, and I and another, they have two sons, one of the sons, we all agreed, we're never riding with her again. We're going to drive her everywhere. We kept saying, This is not safe. And finally, I think, where it hit him, in talking to therapists here and with through the Alzheimer's Association, was, if there's an accident, you could lose everything you have, and then where would you be? And I think when that message got through, and how could we live with ourselves if there was an accident and she was injured, or she injured someone else, and we knew that we could have stopped it, so it was a it was a difficult thing, and it's there.
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First there was getting new glasses, then there was going to the DMV, then there was her not passing the test, then there was the doctor writing a letter to the DMV. And I was so frustrated, because I felt like the medical community as a whole didn't want to just say the truth you have Alzheimer's disease. It is no longer safe for you to be on the road, it's over, and deal with the trauma of that head on, rather than the long, slow, drawn out horrible thing. And then through support groups, through conversations with other families that had gone through this, we heard all kinds of techniques, hide the car, take the car away, say the car is broken, unhook the battery, all of those things and they I'm the kind of person Barbara, where I just My friends will say, sometimes I'm a little too radically honest, but I'm the one that was always saying, Listen, I love you. You seem to have, I'm gonna call it Swiss cheese brain. Your brain has little holes in it now that memories come and go from and I'm scared for you, and I don't want you to be hurt, because I love you, so I'm going to advocate on the side of you never driving again. And guess what? Now you can have a chauffeur. I'm happy to be your chauffeur. And it wasn't always pleasant or easy, but I kept my message loving and consistent with her. And finally, she failed the tests. Couldn't remember that she failed the tests. Talked to all of her friends about how frustrated she was, and I talked to all of her friends and said, Here's the situation. I would love it if you would agree with her that it's now time to have a driver.
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And it was a long it was about a three year process till finally, she began to understand that she was no longer driving. She kept holding out hope that she was going to drive again, and I was the one to say that's not going to happen. And finally, I said to my brother, I think you need to sell the car, because I think having the car in the driveway is just a reminder that she's not driving any longer. So through a long series of events, finally, that's what happened, and now she seems to be perfectly happy and very grateful that we all drive her occasionally, she says, you know, maybe I'll go back to the DMV and get my driver's license back again. And at this point of her disease, I just agree with her. Well, you know, study for the test. Five minutes later, she forgets that the DMV even exists at this point. So, right, yeah, but I can it's a hard thing for families to go Barbara, oh, my god, so
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hard. One of the hardest, I think, yeah, yeah, I agree, one of the hardest things for families to go through. And was your brother on board with you? Or were you creating all like now there's all this havoc at home, right? Because she. He wants to drive, and Charlene is saying no, and is he like now the target of, you know, her anger about not being able to drive,
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yeah, and frustration.
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And my brother and I are incredibly close, and the good news is is we've created a even deeper bond for knowing that our highest priority is that she's safe and she's happy, and that while the rest of the family or other friends might be falling apart around us, we're staying really straight together with our message and we we talk every morning at seven o'clock, we talk throughout the day, and we just say, here's the plan for the day. And I've kind of, I've kind of pulled him along. You know, what's a terrible thing for him. She doesn't recognize him. Sometimes she forgets that.
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She thinks there's another man.
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She thinks that she's a single mother. You know, the disease is so horrible. It's just so horrible. But we both are creative beings. She was a very creative woman in her career, and so I think what saves us is we bring humor and our creativity to her care, and we have learned to laugh about it, because if we didn't, we would become drug addicts or alcoholics or I mean, I don't know what we would do, because it's every day there's a new challenge. And so now we're at the point where we just if I hear a story, I call him up to verify. Did this really happen, or is this something that she made up or hallucinated about?
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And we tried to reason, and he was going to a support group where they said he learned, let me see if I can remember it.
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Dare D, A, R, E, don't argue, reason or explain. So that's our mantra. We we when she says, there's a bunch of people in the house and they all want to spend the night and I don't have enough food, and she calls me on the phone confused, I say, oh, you know what? They all decided they're going to go out to a restaurant so you don't have to worry about making all those beds. What a relief. I think I'll come over and have dinner.
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Just let's just you and me have dinner tonight and let them go out and we just meet her now where she is, whatever, however bizarre it can be,
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it must be so comforting to her and especially your brother. You're such a solid support for your brother.
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Yeah, well, we, after we got referred, I say we, because I feel like my brother and her and I are really in this trio of love surrounding her. We got referred to UCLA, and we came down and met with Dr perand. And it was one of the most bizarre doctor's appointments I've ever been in, because Dr peran started by asking my sister in law, so how long have you been experiencing these memory issues? And she said, Oh, I you know, they come and go, but I think, a couple of days. And then Dr parent asked my brother, how long have you been experiencing these memory issues? And he said, Well, maybe, maybe about a year or two. And then she said, And Charlene, how long have you been experiencing these and I said, Thanksgiving. 2015 and so as we then started to talk about the possible trials she could be in, or the further diagnosing week she could be in, I found myself saying things to Dr params like, how do you determine what early onset is if here in this room, we have, you know, over a 10 year gap in our experience of these memory issues. And I think that's a real confusing thing, because now that I am where I am, and in so many support groups, I've realized that this denial is so real, and I think a lot of it might be based in fear, because it's such a scary diagnosis and it's so final, it's unlike cancer or, you know, having a sore throat, where there's a prognosis that leads to something that you can plan for. This one is like, my brother said one time, it's like going to a romantic comedy where you know everybody's gonna die at the end. Yeah,
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I mean, you bring up the denial, and I think I need to have a whole show on denial. It really it's so hard to absorb. What you're seeing, right? You can be with her. You can experience something so, right? You're saying like, here you'd been having these even guests at Thanksgiving were coming up to you concerned about your sister in law. They don't know your sister in law that well, probably right. And they're even noticing something's not exactly right.
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Your brother's living with her every day, and it's just so hard to, like, I don't know I use the word absorb. It's just so hard to recognize what you're seeing and take it in, like, have it go in on some deep level, something is not right here. Like, how many times does that have to occur for us to right take I mean, it's soldiers and
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in and in her case, there would be a situation where we could be out with friends we hadn't seen for a while and talking about the past. And she's so intelligent, she's so articulate. She's so hilarious, she's so clear that at the end, those friends will say, you are really overreacting. Charlene, there is nothing wrong with her.
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And I said, Well, you know, that was an amazing evening that we had, and I'm really happy that we had it, and there's a whole other side that didn't show up that night. And that's what happens every morning. That's what happens every lunchtime.
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That's what happens. You know, I could give you so many stories of wandering away forgetting to turn off my poor brother's plumbing bills have gone up by 1000s and 1000s of dollars in the last year because she forgets to turn off the water in the kitchen, floods toilet, the plumbing is backed up and even that, you know, I'm a member of your support group, and when I brought that up With the group, and they all said, Yeah, your brother is in denial still about this, and there are now we've got to do these other things, put a camera in the bathroom, take the toilet paper away, all these things. It's just nobody's prepared for dealing with these issues. And I think it's, it's fear and just heartbreak that makes your protective nature comes in to want to deny that it's happening because it's hard. And, you know, I realized because of the experiences I've had in my life with loved ones dying, and the process of going through that with them, I have, I call them, I have strong psychic muscles, and sometimes I have to remember that not everybody else in my family or other friends of ours have had those experiences. So I talk, can talk about it very matter of factly, and they're still in the place of not wanting to believe it or not wanting to you know, it's hard to be around her now because she asked the same questions over and over and over again. And I've come to realize that now we're at the point where we have projects, right?
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We do puzzles, we look at photos, because if we just sit and try to talk, it's too much for her. And so her best friend the other day, I said, you know, now, let's not just go out to lunch and talk. Let's have, let's have lunch together at home and play a game or look through and we had, she brought snacks and a little picture game over that, you know, you would play with a three year old. We had so much fun. We played, and after about 20 minutes, she couldn't remember the rules of the game, so we just made them up. It was like, Okay, fine.
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Match that with that. But the but the truth is, we ended up having a beautiful time together. She felt good, and that's I mean, I have no idea what's coming next. I can't imagine it's going to be pleasant Barbara, but I can trust that now the small circle of friends and the family members that are willing to accept this were on the same page, and we just have to see what's going to happen next.
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Yeah, you
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bring up so many good points that whole idea of fear and heartbreak being kind of obstacles for us to really see what's what's in front of us. I absolutely agree,
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and it's hard to you know, i i My heart breaks for my brother. He's lost his I remember the first person that he went and talked to about this said, you're going to be losing your wife inch by inch. And after his meeting, he called me up. He was so pissed off. He I didn't want to hear that. And I said, Yeah, well, I know you didn't want to hear it, but it's. The truth, and you're going to have to do whatever you need to do, to talk to your inner God, or whatever you want to call it, to accept that, because if you don't, it's just going to be harder, absolutely
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until you find that like under mad is really sad, right? The feelings under mad and angry are really, usually sadness, really sadness
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and and really, really fear in could this happen to me?
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Sure? What's this going to look like? Oh, my goodness, I'm going to lose my mom. I'm not ready for that. And you know, I can say to my other family members, you know, I had to go through losing my mom when I was 30. It was really hard, but I made it.
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And I'll tell you, and I can share with you how I made it, and I can promise you that I'm here for you anytime you want to talk about it, because talking about it is finally what will get us through so but it's so hard, and even in the support group now, I mean, I think I've been in it a year or something, and when a new person comes in, I realize, oh, my god, that was me a year ago. Look at how far I've come. Yeah,
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because everyone just balls when they first come into group, right? They're hearing their story, and they just cry exactly,
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and it's such a safe place to do that, man as you, you know doctors don't want to have that conversation with you.
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Friends don't have the skills that you have to help us through those dark feelings. And I don't know it's,
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it's hard, it's all hard, yeah, but you're right, we, well, I want, I mean, we, I was gonna say at the end of that sentence was, we do laugh and cry and group, we have the whole range of emotion. I want to go back to something concrete that you were saying, which was about wandering. So tell us when your sister in law was wondering what was going on.
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So we had
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an experience where she had gone to Costco with my brother and he had to go to the bathroom, and he said, Just stand right here. I'm gonna go to the bathroom. I'll be right back. Came right back, gone.
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Couldn't find her anywhere.
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Panicked. First time for him, panicked, found her outside in the parking lot, wandering around. So when he called me and shared that with me, I said, Well, I guess we're at the point now where we can't leave her alone. We were having a family gathering at the beach, and all of a sudden we were all ready to go home. She was gone. While we were all there, she disappeared.
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So everyone goes into panic mode to try to find her, and somehow she wandered back. But it was in a split second she went to the local mall with one of her sons to buy a birthday present for my brother, and all of a sudden she called my brother, saying she was lost, and she was there alone, and it I was nearby the mall, so I said, Well, I'll drive down there and try to find her. And where she said she was I went into that store. She wasn't there. She had never been there. And I explained the situation to the manager of the store. He just coincidentally the the security guard walked by the store. We went outside, I showed him her picture on my phone, and I said, this is my sister in law. She has Alzheimer's. She's lost. We need help finding her. And so he started looking for her. And then I walked around the corner, and there she was, and I said, hey. And she said, Hey, what are you doing? And I said, I don't know. You know, I just came down. I hear there's an art show down the mall. I was gonna look at it. What are you doing here?
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And she said, Well, I don't really know. And I said, Well, do you want to go to the art show with me? So she said, Yeah, that sounds great. No memory of being lost at all. So we walked down the mall, and there was a person playing the concertina and dude giving tango lessons.
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Within five minutes, Barbara, She is dancing, she's laughing, she's having so much fun, there is no memory of her being lost, disoriented at all. The people from the store are coming over and giving me hugs. Oh, thank god you found her. Look at she's having a blast, and you just have to be I realize I have to be willing to pivot every second, because her behavior changes minute by minute.
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Sometimes when we're out in public, I can't let her out of my sight and I can't get mad at her for. Forgetting. And one of the I don't know if it was somebody in our support group or somebody else, but the person said, besides, dare, don't argue. Reason, explain. They said, Remember, it's the disease, not your loved one. And I continually have to remind myself that it her brain is functioning in a complete other world than mine is. It's not something she's it's not behavior she's causing that I can say, I really my feelings were hurt when you forgot my name the other day because it doesn't work anymore. So it's having to learn a whole new language on top of everything else. As a caregiver, it's
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so hard, so hard, exactly, and that's a mantra for a lot of the folks in group, right? It's the disease.
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It's the disease. Yes, it's not her. Yeah. Now
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we're at the point where we're going to get bells and put on all the doors to the house so that if she goes outside, at least we know she's going outside. I mean, I don't, I don't live with her, but, yeah,
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that's a great idea. And like ID bracelet or ID in her What does she carry?
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Anything, or even a track. Do you have GPS?
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She has a purse that she carries with her keys and her phone, which she loses maybe 30 or 40 times a day. So we bought those little apple air tanks and put keys on her phone in her purse, and then Apple has this little I call it the orange ball because we bought one that's orange. I forget what it's called, but it's that little ball that you can put on your counter and say, Hey, Siri, find keys. Find purse. And so now she's pretty much remembering that we can go to the orange ball. The orange ball can say where her purse is, then we can walk together to find it.
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She's so adorable, though, because she'll say, Hey, Siri, how are you doing today? I hope everything's great in that little orange ball. I just can't seem to find my purse. I wonder if you know where it is. And of course, Siri only hears find my keys. It's now become this hilarious thing and but it's been a it's been a lifesaver for all of us, because it's, you know, we it's amazing how many hours of the day whoever's in the house with her could spend.
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The other thing I wanted to touch on Barbara is that it took a long time for my brother to accept the fact that he needed to have home health, somebody helping her. I actually had to have pretty major surgery recently, so I was pulled out of my role in taking care, and I said, Listen, this is going to go on for a few months. You can't do this all alone. You have to work you so you've got to pay someone to be with her.
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And through another friend of ours who's a caregiver. Here we found a wonderful woman. Oh my gosh, she's the most wonderful woman in the world, and so she now is Susan's new best friend.
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She says, I have a new friend.
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We have so much fun. We go to walk, we go to the store. She cooks us dinner. She washes my hair so she is really filling the needs of as we become as she because my sister in law can no longer do certain things for herself, this woman is helping her, and we're now just starting to have the conversation about when she really becomes incontinent and when she really doesn't recognize us and can't tap back in. Are we going to have someone come stay in the house, or are we going to place her? And I'm starting to do the research to find out what facilities are available, how much they cost, because I can do that kind of administrative case, managing stuff from home while I'm recovering from my surgery. And just again to say we're going to probably have to make these decisions at some point, and I just want to have the information, not that I'm asking anybody else in my family to go visit these places yet, but I want to know what's available and what the options will be, because, God forbid something happened to my brother, then what are we going to
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do? Right? Money's probably going to fall on you.
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Oh, yeah. I
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mean, that's a really scary people don't want to think about these things. And I see in groups, some people who think they can do it all, yeah,
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is not a one person job. Yeah, exactly No.
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Agree. That's why that great book the 36 hour day, yes, it is a 36 hour day, yeah, yes. No one can do this alone. We need
00:34:57.880 --> 00:35:35.000
help. So I become. The expert, I'll have a little tip for all caregivers out there listening. I've become an expert at what I call the three hour vacation. That's my technique for taking care of myself. I went on down three hours just whatever I wanted. I randomly, I look and say, Is there a coffee shop I've never been to? I'll call up a friend I haven't seen for a while and said, you want to go have a cup of coffee. Go to a new place, have a cup of coffee. Don't talk about my family. Go to the beach. Go to
00:35:35.059 --> 00:35:37.099
take a break, a mind break.
00:35:39.679 --> 00:35:53.920
And just because, just that little three hour vacation, you know, I don't have the time or the financial resources to go to Italy, so I just go to the the local coffee
00:35:53.920 --> 00:35:55.239
shop, go for
00:35:55.239 --> 00:35:59.619
a ride on the bus.
00:35:55.239 --> 00:36:10.920
Yeah, yeah, random Barbara. But it's so life affirming. It's like, it reminds me that there's life outside of this situation that our family is in for how long we don't know.
00:36:11.760 --> 00:36:55.179
Yeah, I love that you use the word pivot, and I agree. Like this, this disease, you're constantly pivoting and like, and you can even use that word from care, like, your role as helping, being a caregiver to, you know, the bus ride that takes you, like, gets you away for a few hours, like you're pivoting your roles constantly. And it's so true, right? One minute you're panicking that she's lost, and the next minute she's, you know, you're dancing with her, and, I mean, I'm sure you probably sweating, and then suddenly, like frantic running around looking for her, and the next minute you're like, whoo, okay, you know, here we go. It is
00:36:55.179 --> 00:38:48.579
like the roller coaster ride that you've never been on in your life. It is so radical, because it's so true. I feel like teamwork, building your team, being honest with people. These are the things that helped me. And you know, we were at a social event, my brother, my sister in law, and myself, and we ran into a person we don't know that well, but kind of know socially, their loved one has Alzheimer's. And they just unloaded. They just started to unload upon us about how hard it was, how horrible it was. And I was so nervous, and my brother was so nervous, because we thought, how is she taking this in, right? And then I kept trying to think, How can I get this person to shut up, like this is bad, like we should be talking about this in front of her, right? And I remember I brought this issue to our group because I said we didn't know what to do here we were in the social situation, and I think it was you who said, but you have to realize that those were your fears, because she was just that was just a story she was hearing from a stranger. She did not have the ability to relate it to herself. And somebody said, what you could have said in that moment is, Wow, isn't it good that we were there to hear that person. They really needed to get that off their chest. Let's go have some ice cream now. Just change the subject. And I really find that what is really true is when she, luckily, she is not, doesn't get anxious very often, and she's not gotten angry very often. She's become very sweet.
00:38:44.739 --> 00:39:19.800
And maybe it's because of the meds she's on, who knows, but she's like, a little help, sorry, yeah, princess. I mean, she's so sweet, but when she does get anxious, it's always that she's afraid, and so we always say, Listen, you can count on me to always make sure you're safe. You can count on me. 24/7, you can call me up. I might be asleep and not answer the phone, but know that you can ask me anything, and I will always make sure that you're safe no matter what. And that gives her great comfort, yeah,
00:39:19.800 --> 00:39:21.739
reassurance, absolutely.
00:39:21.980 --> 00:39:27.559
But it's, it is not for the faint of heart, this journey, no,
00:39:28.099 --> 00:39:44.619
oh, no, oh goodness. So now you're cast, and I remember you said starting to look for facilities, just in case you need, right? Just tools in your toolbox, just in case you never know that you were saying something like, Okay, we need, I don't know, you didn't put like, a money tree in the backyard.
00:39:44.980 --> 00:39:49.599
Oh, yeah, absolutely.
00:39:44.980 --> 00:40:10.860
So I'm, I have a background as an independent filmmaker, and I and I know how to write grants and raise money, so I'm just taking those skills and transferring them to is there any help out there in the. World for us. Are there any other sources of financing? Are there any people that can help us navigate and figure this out?
00:40:11.219 --> 00:40:23.000
And so I'm kind of now coming up with a my brother and I kind of do a three month plan. So I'm coming up with the money that he's now paying this caregiver.
00:40:19.679 --> 00:40:37.400
I'm coming up with a plan for October, November, December, and then how much that's going to cost, and then We'll reevaluate in December. Then I'm coming up for a plan. Let's say Plan A is we start to have someone spending the night in the house, how much is that going to cost?
00:40:37.639 --> 00:40:54.519
Plan B is, what if we put her in a place, how much is that going to cost? And then kind of have those three scenarios and just look at it and be really straight and really hard core about what can we afford?
00:40:55.659 --> 00:40:59.440
Adult daycare programs up by you, they did, and
00:40:59.440 --> 00:41:11.099
she was going to one for a while and loving it. And then she just one day, decided she was not as sick as those people, and she refused to go.
00:41:06.480 --> 00:42:15.599
She stopped going. It was fabulous. It's a fabulous, fabulous place. But and through the opica, I went to the caregivers day, and there was that online one can't focus to look on the zoom that often do that. She it the thing, the only thing we found that really works is kind of one on one, even if we like she had a book group that she was a part of for 40 years, and so I volunteered to take her to the book group, and I said to everybody, I sent them all an email and said, Here's the truth. Your dear friend now has Alzheimer's. She loves you all. She no longer reads. She can't listen to a book on tape, but she loves the social thing, so I'm happy to bring her and bring her share of the food. We went for about three months, and then it was just too hard for her. Now, it feels like wherever her disease is progressing to Barbara, she's really comfortable in a group of three.
00:42:15.900 --> 00:42:28.039
If there's four or five people, she can't track the conversations, so we try to keep her away from group activities like that. It's just too much.
00:42:25.280 --> 00:42:39.019
And the people at the daycare program said that's something that typically happens as the disease progresses. They just don't enjoy being around that group any longer. So yeah,
00:42:39.079 --> 00:43:01.679
absolutely, I definitely see that. And a group of three is so great, like, if you're going out for dinner, that way, she can just sit there and you and your brother can chat with each other, and she doesn't have, she doesn't feel on the spot to, you know, answer any questions, right? She's just listening and maybe chiming in here and there. But you two are basically, kind of carrying it.
00:42:59.260 --> 00:43:04.860
Otherwise, if you're just looking at her, we're just the two of you, like, Oh my gosh.
00:43:04.860 --> 00:43:06.539
How are we going to get through this meal?
00:43:07.139 --> 00:43:34.760
Exactly? Yeah, it's, it's hard, it's hard. So it's, unfortunately, it's not. I mean, the only thing that saves me is the support group, the people that my team, my friends, our family, the ones that want to talk about it, you know, calling each other up and saying, This is just what happened. I have to just get it off my chest, I was so frustrated. And was
00:43:34.760 --> 00:43:43.780
there anything like, any examples lately of something really frustrating, you but something that happened just the other day? Was there something that drove you crazy?
00:43:43.780 --> 00:43:44.139
There's
00:43:44.139 --> 00:43:47.860
just so many of them.
00:43:44.139 --> 00:44:31.880
I know. I'm now recovering from my surgery. I'm in a wheelchair and a walker, and I'm, I'm my physical therapy. I'm moving, you know, from my wheelchair to my walker. And she was at my house, and I was asking her to help me do something or move something. And her caregiver was here too, and her caregivers fabulous and was helping me do stuff. But, you know, bless her heart, she just put things right in my way. And I live in a small apartment, so I asked her to move the laundry basket from here to the bathroom. She just put it right in my way. And I couldn't move, I couldn't and I couldn't lift it up and just, you know, just things like, so it's a combination of heartbreak and frustration. Yeah,
00:44:32.119 --> 00:44:35.300
that's exactly right. Heartbreak, frustration.
00:44:35.719 --> 00:45:01.500
And when she wants to, she has stories about family members who she thinks she was, the mother of that she was. She isn't that, you know, and you just, you have to just, it's so frustrating, and it's so heartbreaking, but you I've, I realize I can't correct her, so I will call her best friend up and say, Oh, my God, that's.
00:44:58.360 --> 00:45:24.260
Story again, about how she's the mother of those cousins, is like, how many more times do I have to hear this story? I'm so frustrated with it, so that's why now I feel like it's kind of like having a toddler. I kind of create activities so that we have something engaging that we can do together, so that I don't have to hear those stories over and over again. So what
00:45:24.260 --> 00:45:27.980
does that look like? Is that like you break out old pictures, or what do
00:45:28.159 --> 00:46:01.559
you we're doing scrapbook projects. I find a picture and I got scrapbook pages, and I asked her, tell me the story of the scrapbook, and I write it down. And she's got two grandchildren who are now one and three, and the three year old starting to get scared, asking, is something wrong or is that, you know, is my grandma sick? So now that's going to be the next thing that we have to navigate. How do we work that out? But I say we're making a book to leave for, you know, the little ones,
00:46:03.000 --> 00:46:05.820
there are books out there specifically for grandchildren,
00:46:06.179 --> 00:46:13.320
and I think that they are much more aware than we give them credit for, absolutely.
00:46:13.380 --> 00:46:17.940
Yeah, they are perceptive. Kids are perceptive, for sure, and
00:46:17.940 --> 00:46:23.119
we're gonna have to start learning how to navigate that so I don't know
00:46:23.239 --> 00:46:26.119
the next chapter. Oh goodness gracious.
00:46:26.179 --> 00:46:32.719
Well, anything else that has helped you along the way that you want to share with our listeners,
00:46:33.739 --> 00:47:25.579
hang in there. It's I wish I had, I don't know. I feel like and I got told this years ago too. The sooner you accept that something is happening with your loved one's memory, and the sooner you start to learn about what that is, the better off you'll be, I think, because once the disease really starts to progress, then it's too much to learn. I mean, I'm so glad I did all the research I did and that I'm still doing, because she could live for three years or 20 years. And I said to my brother, if she's gonna be like this for another 20 years, this is a whole different enchilada of a like, how are we gonna manage this for 20 years? That's like terrifying, but it could be so
00:47:26.480 --> 00:47:30.260
you'll manage it right? More managed everything, more
00:47:30.260 --> 00:47:45.099
information, more teamwork and and also trying to get rid of the stigma, trying to get rid of the part that feels embarrassed or feels Oh No, nothing's wrong with my person.
00:47:45.519 --> 00:47:59.079
I just feel like that adds a whole layer to a problem that's already big enough. And don't say this. I don't know. I just find being honest is the best policy here. And yeah,
00:47:59.139 --> 00:48:10.199
no, I agree that whole idea of acceptance absolutely key yes towards any sort of action like you have to accept what's going on, right?
00:48:07.739 --> 00:48:25.340
You have to become aware of it, accept it, and then kind of spring into action mode, exactly whatever that looks like. So for you, it looked like, you know, books, support groups, any information you could Alzheimer's Association, exactly everything and being
00:48:25.400 --> 00:48:43.539
and being, being able and willing to say to strangers out in the world. You know, I'm I'm sorry. You know she's taking so long choosing the chicken in the grocery store. She has Alzheimer's. Please be patient.
00:48:39.860 --> 00:49:14.400
If you're in a hurry, I can move her along, but I try to give her as much freedom and dignity. So now, if one takes her to Trader Joe's, it's a three and a half hour trip rather than a 15 minute trip. You have to just be patient, because she gets great joy out of looking at every pea frozen. Wow, did you know that you could have a frozen this a frozen that. Hey, you know what?
00:49:07.980 --> 00:49:15.420
If that's what it takes, that's what it takes,
00:49:15.420 --> 00:49:22.699
right? Yeah, you just put on your patience, your patience cap, or whatever, your patience suit of armor, yeah.
00:49:23.659 --> 00:49:27.500
And I think everybody has a different way of learning patience,
00:49:27.619 --> 00:50:07.739
yeah, yeah. I'm sure there's a lot of deep size or looking at our caregiver like, oh gosh, okay, right, exactly, yeah. Well, I thank you for coming on here today, and your honesty, your ability to articulate your feelings. It's really, it's so I know in group, when I hear you, I just, I know that other caregivers are are gleaning. You know they're just like from what you're saying, they're they're getting so much so. I benefit from you being in Group. We all benefit, and I'm sure our listeners today benefited too. So
00:50:08.039 --> 00:50:13.619
thank you. Thank you, Barbara. Keep up the good work, and I'll see you in group. I
00:50:13.619 --> 00:50:14.519
will indeed
00:50:16.019 --> 00:50:22.280
thank you for joining us today on another episode of dementia discussions.
00:50:18.420 --> 00:51:06.539
If you're a caregiver or know someone who's a caregiver that would like to be a guest on the show, please call me at 310-362-8232, or go to dementia discussions.net forward, slash contact and let me know. I would love to have you remember that you can follow dementia discussions on Apple podcasts, Spotify, Google podcasts and many more. If you listen on Apple podcasts, it would mean a lot if you would leave me a review. For any other information about this podcast, please visit me at dementia discussions.net. And please share this podcast with someone you know, if you think it may help, thanks again for listening, and I'll see you here again next time on dementia discussions.
00:51:22.679 --> 00:51:22.800
You.
