Memory Care with Teresa Youngstrom
Caregiver Support with Dementia
(upbeat music) - Hey, care partners and welcome back. Teresa Youngstrom with Memory Care with Teresa. So glad you're here. Do you know we're on episode 13? I mean, how cool, it's just amazing. And I appreciate so many of you that are tuning in, sharing, liking, subscribing and sending questions. You know, the feedback is so important and we really, really appreciate you all. So today we're gonna talk about you because I think sometimes we forget about caregiver support. Frequently somebody jumps in to do this kind of care and they give it all, but you know, they can lose it all 'cause it's so hard on us. And so today really the focus is caregiver support. What can we do, what can we talk about to make sure that you're being cared for at the same time? 'Cause of course your person living with memory challenges needs help and we'll have to increase help as they decline. But we know that, we've talked about it. But how do we take care of you in the process? You know, Tipa Snow told me once it's 65% of the caregivers, you guys, care partners, me, you know what, we die first. What, stop right there. Why is that? Well, it's because it's very stressful and frequently, you know what, we give it all and then we lose it all. And I don't want that to happen to you. So I want you to really be thinking about what's going on, how you're caring for somebody. And are you really using your gifts? I mean, seriously, guys, let's look in the mirror. Look in the mirror. Are you, what are you really good at? What do you love to do? I know you wanna help your loved one. I know you do, but you know, we are wired differently. I could change my mom's diapers, late in the disease, not everybody's wired to do that. I had a wife say, you know what, when it gets to the toileting thing, I'm out. Okay, well, at least she knows. She knows where her boundaries are. And I'm sure she was stretched in all different kinds of directions because we all are or were. But I think it's so important to look in the mirror and see where you need help. How is this gonna be? 'Cause I have come in sometimes and I noticed that as soon as the loved one, maybe it's a spouse, maybe it's a daughter or son, they come in. They're like, good, night, mom, come on. Can you keep this place clean? I spend all my time. Uh-oh. That's not gonna get off on the right foot. So it's so important to take a look at you. What are your skills? What are you good at? Not only learn a lot of the skills of taking care of someone who has brain changes, but to make sure that we're using your skills to the best of your ability. There have been times when I've had to say, you know what, I think you are so organized. You're organized, you're good with an Excel spreadsheet, you're good at interviewing people, bringing in the right people, providing a great schedule, staying on top of the schedule, making sure there's groceries in the house and blah, blah, blah, we're getting to the doctor's appointments. But you know what? When it comes to you giving care to your mom, it's not your strength. And guess what? It is okay. And so how can we look at ourselves in the mirror to look at what we're good at? What we need help with. And that's really focused. You know, when we need to talk about how long can we do this? How long can you do it financially? I mean, are you having to leave your job to do this? Are you having to cut back on your work? Maybe so. So we got to really think about that. How do we have balance? Because you know, I've run into daughters who are taking care of their parents, taking care of the grandkids, trying to run their own home and work part time on the weekends. You know, it's just a recipe for disaster. And so I want you to take a step back today and really look at how can we take care of the caregivers, the care partners, you, how do we take care of you? And do you really have the time and resources to do this? Yeah, time and resources, because they're going to need you at, you know, maybe been very inopportune times, but it could be very spontaneous, sporadic. And it eventually becomes more and more. So let's think about that. How much time and how many resources? You know, I hate to talk about money, but it's important. Are you going to be able to financially support this person? Do you have access to their bank accounts legally? And are you able to properly process their funds so that we can spend their money on them? And when do we get to a point where maybe they need to go into secondary care, go into, or maybe there's daycare available. I don't like to really say daycare, but there are senior centers where your loved one can go and get some care and you can still take care of you. And you can, or maybe that's when you work four hours, something like that. Let's just think about it. So the other thing to really consider is can you give personal care? Can you help someone brush their teeth? Can you help someone shampoo their hair? And if you can, great. And if you can't, great. It's okay. It's okay. There are people who are wired for just that thing. And we can get them in there. And then you can train them up with my techniques on how to come alongside and love your mom or your dad or your husband or your sister, whoever it is. Right? I rarely find caregivers though that think of themselves. You all kind of think about the other person a lot. And I've watched you lose your health. I've watched you quit going to your own doctor's appointments. I've watched you stop going to your, whether it is a sewing club or, you know, maybe you guys crochet or book club, whatever it is that brings you joy just going and sitting alone for some quiet time. I've just seen you give up these things and it's not good for us mentally and it's not good for us physically. We have to keep using these bodies and stay strong. So I see you typically focus on the other person, but I can see that getting us all in trouble. So we also usually have an agenda when we come into care for somebody. All right, that can get us in trouble, right? We come in with our agenda. Well, mom, we got to do X, Y, Z, P, D, Q and all these things. And that maybe isn't how the day is going to go. We really have to join them on their journey and see how this is going to go. And maybe we do get A and B done today, but maybe we don't. And we need to be okay with that, right? We need to be able to have a plan that works. Routine, routine, routine. Routine is so good. I saw another routine this week that I thought was really great. This gentleman is early in his Alzheimer's. And so he has a little plastic basket in the bathroom that has all of his morning care supplies. So it's got his razor and a shaving cream. It has his lotion. It has his toothbrush and his toothpaste and his floss. And so the things that he does in the morning and he lays them out on the counter every morning. And as he uses an item, he puts it back in his basket, right? So he knows when the basket's full again that he has done that for today. So it's important to establish routines as a caregiver. That's going to help you in the long run and be able to negotiate the routines as they decline, but routine routine routine is so great, especially in the area of hygiene. If you're not staying up on that and then all of a sudden you're trying to get them to start the routine late in the disease, boy, it can really backfire. So let's think about routine routine routine as we go into this. We also need to consider what is the most important thing when you're coming in to do care? Would you say it's the agenda, the schedule for today? Or is it the relationship with your loved one? Think hard, because it's very important to know the difference. 'Cause the older I get and the more experience I get working in this area, the relationship has got to be the most important. They still have to be able to trust you that you have there that you're behind them and that you care, you're not gonna turn on them and you're not gonna finger-wag and ask a million questions and put a wedge in that relationship. And if it gets like this, guys, we definitely need to either bring in help or let's look for our next opportunity of who can help us give care. Listen to that advice, listen to that advice. Not everyone can, although it's a great, great goal to keep your loved one at home. Not everyone can do it, and it's not always best for that person. I've watched very outgoing individuals with dementia become very, very isolated and depressed. Her husband thought he was doing the best thing for her, but guess what she needed, people? Yeah, so he found a wonderful unit, a small unit for memory care, and a couple months after she was there, he said, "You gotta come see, you gotta come see." And although she didn't remember him as her husband, oh my goodness, she had plugged in, she had friends, got up every morning, made her bed, they were quilting, they were quilting, using their hands, using their eyes, activities, they were quilting and had great activities going on. She thought he was a friend of the family and did that break his heart, absolutely. Was it probably the most sacrificial thing he could do? I vote yes, probably so. And with tears in his eyes, as he, we walked out of there, he said, "I know I did the right thing now," because he said, "Keep her at home, I was watching her just waste away in depression," because she's just the person that needs that interaction, and she's happy now, happy. And I'll just keep visiting her like I'm a old friend of the family. And so his attitude was wonderful, I know he'd been through a lot of tears to get to that point, but sometimes that's exactly what we have to do. So think about your care that you're doing, and are we focusing on the agenda, or are we focusing on the relationship, okay? Definitely we need to focus on the relationship. I just don't want you to be one of those caregivers that unfortunately gives it all and loses it all, because I've seen that happen, where we just ruin the relationship and then that person doesn't want to be with us, associate with us, even sit with us anymore, it can happen, all right, I don't want that to be you. So give yourself a pat on the back for being here and getting more information about caring for someone, way to go, way to go, I needed this when I was in your shoes, and I was led then to turn around and share what I've learned, and I needed a lot of help, and I needed encouragement, and I needed to figure out how to bring help in. So pat yourself on the back for caring so much to invest in yourself, okay? I think if we're honest with ourself though, have you, well it depends how long you've been doing this, but we do realize that the responsibility is huge, right, and the commitment needs to be huge too, and that's where it can get really hard, but let's take care of yourself, let's allow yourself to get away, and also, you know what thing we completely forget to address is are we allowing ourselves to grieve the loss of that person and who they were to us? I mean, I was probably, did that very poorly with my mom. I was busy, and I stayed busy because I'm a nurse, and I would flip into nurse mode constantly, and even when she passed, I flipped right into nurse mode. Gotta get her changed, gotta get her looking beautiful for people to come see, we gotta change your dress, blah, blah, blah, blah. That was me, and I didn't always do what was healthy as for me, mentally, emotionally, and so I just wanna help you learn from my mistakes, that it's okay to grieve, it's okay for us to grieve, but do you know who else grieves sometimes? Yeah, the person living with dementia, the person who is Alzheimer's, because there's a season where they have a big awareness of what's going on and what they're losing, and they need to be allowed to grieve this, and I see families, I see communities frequently on a throw medication at that, and I'm just saying, well, they're grieving, and they need to be allowed to grieve. Maybe there's a chaplain that can talk with them, maybe there's someone from their church they'd like to talk with, but it's okay. I had a woman one time express this to me, and it was shocking, but it was true, and I was sitting with her, she'd been moved into a community, and she said, have you seen what they've reduced me to? She goes, these four walls, this all I have now, my life, and she was almost 70 years old, so she was younger, and in those moments, my heart was breaking for her, and I needed to find a way to make that, at least the most joyful place we could make it, when I was there, and when other people came to visit, and so setting up a schedule of visitors might be a great thing. Maybe think about activities, what could you do, what could you bring in for them to enjoy? We found her favorite TV shows these old Westerns she was in love with, and that did bring her some joy, but I think it's important that we do allow them to grieve, and we allow us to grieve too, 'cause there can be a loss of our dreams, especially spouses, you know, you get to, all of a sudden you're 70, and you think, okay, we're both retired, the money is secure, isn't this gonna be fabulous, and let's start this wonderful life we've planned for, and saved for all this time, and then all of a sudden, someone has a chronic debilitating disease, and we really have to take a deep breath, and we may even need counsel for that, and that's okay, but I need to take care of you caregivers, you gotta take care of you, you may need someone to talk to, but you're gonna have to grieve the loss of those dreams, and there are times when you need to allow yourself to go ahead and take that vacation with the kids, make sure your loved one's in good hands, and allow yourself to do some of those things, okay? Not guilt ridden, we're not gonna do that. We gotta take care of you too, okay? We sometimes need to have just a good cry. I know I did, I know I walked out to the car, after caring for my mom several times, that good cry. Grieving the loss, or maybe she touched on something that was so special to me, and maybe remembered me in a time when I was younger, and I could go on with stories about that. So a good cry is really important. Like I said, seek counsel if you need it, but I think we need a vent friend, it ran down then too, 'cause it's hard, it's hard. One more dirty diaper, one more time you come in, and things are strewn all over, 'cause they were searching for something, they needed to find something, or they've packed their bag one more time to go home, and they are home, and so when they're busy, we unpack the bag, but they're packing again, and you're like, oh, you need to go home, okay, let's go out and get a cup of coffee and make a list of what we need to take with us, 'cause you've got some wonderful things here, and we're positive about that, and we just start redirecting the picture, we accept and agree, we validate their position, right? You've heard me say this a million six times, but I'm gonna keep saying it, 'cause somebody out there needs to hear that. Don't go in there and holler at them, and chastise them and finger-wipe them down for doing something that in their brain seems important and needed and vital at that time. We don't want to treat people like children just because their brains aren't functioning well. We learn how to validate their position. Thank you, Teep Snow, for teaching me that. Validate, de-escalate, and then we redirect them to a happy place, that's what it's about. All right, so I also want to mention that part of taking care of you is learning to go with their flow, because there are gonna be times when they're gonna stop you with a situation. Maybe all of a sudden they're angry at you, and you didn't do anything to deserve it. You just were there, you just were in the place, in the, I don't wanna say the zone where they were firing, you just were between someone, you were the target, I guess, not meaning to be, but sometimes I found myself just playing there, and I was being yelled at for something I didn't have anything to do with, but it was my job to then validate, de-escalate, and redirect her. So we're gonna need that kind of help to go with their flow. You're gonna have to bring help in when it's needed. Okay, bring help in when needed. I would say prior to the need, go ahead and interview people, and prior to the need, because in the beginning, they can still be left alone maybe, or they are trustworthy in certain things, but just know that they're, you're gonna have to bring help in eventually, or they're gonna have to transition somewhere else, okay? Did you hear that? Yeah, everybody will need help. Everybody, everybody, or you may die first, that's what I'm trying to tell you. So just know that you're gonna have to bring help in, okay? Let's see, you need to get time away, I told you that. So let's take a deep breath, and say to yourself, I can do this. I can do this, 'cause it's gonna be hard. But we've gotta take care of you. Let's just review a little bit. I want you to bring in help. I want you to make sure you get away. Evening time tends to be a difficult time with the person you love. Remember that the filter is out for the people who are closest to them. Why? Because that familiarity, you know? There's no holds barred for the people who they are most familiar with, but so my mom could be boom, boom, boom, boom, verbally abusive to my dad because he was there and he was the easiest target. But then a caregiver might walk in and she go, "Hello, hello there, why?" And I've had folks say that's just being manipulative and I'm like, "No, sorry." But she's just using what she has left and that ability to be cordial is alive and well in the right side brain, along with music and rhythm and the emergency words, okay? There's some things over here, idle chit chat that's there. So don't beat them up for using what tools they still have left, which is know that you are the easiest target. They're gonna be hardest on you and no one else may really see it. I know your kids come in from out of town or your sister who lives that town comes in or talks to mom on the phone and she sounds great. Idle chit chat, right? Superficial. Hi, good, fine, you. And that's what they get. They're like, I don't know what the problem is. Okay, well, they're not gonna understand. Maybe we need to zoom call with everybody so I can explain it. Sometimes the third party's needed, right? To give them more information. But just know that you could be the easiest target and let's strategize the care so that during those most difficult times you have help. Some of you will become the manager and you won't do personal care. But I know I said that didn't I? Some of you are not wired for personal care. Yeah, that's gonna be really so far out of your wheelhouse that you're gonna have trouble with the relationship because you're gonna be hollering at her for not holding still or making this big mess or whatever it might be. So if it's not your wheelhouse, we gotta get someone to help you do that part. So some of you will not do the personal care and it's okay and it's okay. But also those of you that are doing personal care as the disease progresses, as their brains decline, as the familiarity rules are or runs out and you are becoming just a target. Just know that in the evening when their brain is more tired, I know we call it sundowning, but when they're more tired, it's gonna be harder on you too. So that might be the first place that you bring help in. We eventually did not let my dad help with bedtime. Well, he came in and gave her the three kisses before she went to sleep. That was a good routine. But he didn't help with any of her personal care, getting ready for bed. And don't you dare rush that person. That'll come back and bite ya. Don't rush anybody that has brain failure. It's hard enough for them to figure out what the next thing to do without you rushing and that's gonna get the dukes up and that's gonna get a fight and you don't want that to happen. So just realize that with sundowning, with a more tired brain, that person's gonna be more difficult. Your family member, you or your family member are going to need more help. And that might be the first place to bring help in, okay? And so then if you're also gonna plan an event, when do you plan that event? I mean, if everybody always has the birthday parties at 6 p.m., is that the right thing to do? I'm gonna hit the pause button and say, "Well, mom's best hours are between one and three." And she seems to be sharp, she's friendly, she's happy, she's had her lunch and she'll wanna go down for a nap at three between three and four. So then how do we plan that party? Yes, we plan it during their prime time. And we also know if there comes a time where she's upset or stressed or anxious, then we remove her from that situation. Please don't wait until there's embarrassment or they act out. Please don't wait until that. And certainly don't position them to feel by planning an evening event for this person, especially at the holidays. 'Cause you get too many people in there, too much stimulation, too much noise. It can absolutely explode and backfire. And we don't want that type of situation to happen with your family. We wanna have this be a pleasant event and there will come a time where you're gonna have to do smaller events probably for that person or at least be able to remove them from all of the party, all the energy and all the people in order to keep the peace. All right, so take a deep breath and say to yourself, I can do it, but not by myself, right? Not by myself. We're all gonna need help and that's okay. And we're here to help. There are lots of resources in the community to help. You have the Alzheimer's Association. And Cincinnati, we have Catholic Charities. What a cool company. So many great things that they can do. We've got Giving Voice, if you haven't heard of that. Another great resource here in Cincinnati that has really wonderful activities for people with brain change. And they feel like they're just at a wonderful activity with a bunch of other people enjoying that activity, whether it's dancing or art or a museum, whatever it might be. So there's some great nonprofits out there to help, but you also have private duty companies and you also have companies to help with placement. And that means when it's time or before it's time, you have someone to help you find your next step in this season. And it's a season, guys. The season of caring for someone else. Is it gonna be hard? Absolutely. Is it gonna be worth it? Absolutely. Trust me on that. It'll be worth it, but we gotta take care of you. The caregiver, the care partner, the spouse, the daughter, the sister, the husband, okay? We gotta take care of you in the process because then who's going to be there to take care of them? All right, I'm Teresa Youngstrom. I appreciate that you're here. I hope that you will like, share, subscribe to our channel. Let your friends and family know we are putting these podcasts on our website, TeresaYoungstrom.com so that you can find them more easily. If you're not a computer savvy person and you don't wanna go looking through YouTube or find me on Spotify, that's okay. That's okay. We'll make it easy. We'll put it for you right on the website so you can find episode 13, Caring for the Care Partner. I'm Teresa Youngstrom. You got this. (upbeat music) (upbeat music) (upbeat music) (upbeat music) (upbeat music) (upbeat music) (dramatic music)