Virginia rejoins Steve in this concluding 2 part series on caregiving strategies. In this episode, they provide insights into activities and products that can be utilized to enhance daily living and simplify routine tasks. Tune in for valuable information that aims to elevate the day-to-day experience for both caregivers and those living with Alzheimer’s and other forms of dementia.
Virginia rejoins Steve in this concluding 2 part series on caregiving strategies. In this episode, they provide insights into activities and products that can be utilized to enhance daily living and simplify routine tasks. Tune in for valuable information that aims to elevate the day-to-day experience for both caregivers and those living with Alzheimer’s and other forms of dementia.
From the University of California, Irvine, this is UCI MIND's, Spotlight On Care, the podcast where we share stories, experiences, tips and advice on caring for loved ones affected by Alzheimer's and other dementias. Hello, and welcome to another edition of Spotlight on Care. And this is kind of a continuation of our really exciting part one of the tips from Gini and Steve and sorry, Virginia and Steve. In any event, we were really happy with our first edition and we've got a lot more to talk about. So here we go. So Virginia, let's talk about kind of that whole issue about distraction. And when some things that you found that are ways to make it fun and easy to make a distraction happen,
Virginia:Definitely, there are things that can make life easier for both the caregiver and the person with dementia. So why not list a few of those things here? I remember, my mom would sit there and pick at her nails, she would pick at her fingers picked at her nails. And what came to mind was, she needed something to do with her hands to make her happy. They have now these fabulous; they call them fidget blankets. It is a small blanket that you can put it on a table top you can put it on your lap, and they have zippers and buttons and pockets and things they can fiddle with, which would have been fabulous for my mom, would have been. And I've talked to people who have used them, and they they love them; not for long, but for a few minutes, they sit there and their hands are busy. And it's great-- a squishy ball, they sell these rubber balls, you've seen them, CVS has them. And you can squeeze the ball in your hand and it can relieve stress, it can make them feel better. Another activity, which we enjoyed was, I would collect my old costume jewelry, rings, earrings, necklaces, and I'd put them in a pile and then put that in front of your loved one, along with a muffin cup because they can sort--they like to sort-- you know the various things, a muffin cup or other little cups that they can just separate the items in. Napkin folding. Just put a pile of cloth napkins that you just got out of the dryer and put that in front of them and a woman will be very happy folding napkins and helps.
Steve:What about I think you've talked before about fake pets? What about what about that?
Virginia:Fake pets are wonderful. We tried real pets for a while with my mom and it was kind of, it was not good. We had purchased two kitty cats for her because my brilliant idea, I thought, pets fabulous. And we walked into her room at assisted
living one time and said:"Where are your cats?" And she said,"What cats?" That's how we knew this was not a good idea. They sell fake pets, robotic dogs, robotic cats. They're wonderful. They wag their tails, they blink. They purr. They make sounds and people, I think especially women who love to just feel like they're nurturing something, love to sit there with a fuzzy, wonderful, fake pet in their laps. Doesn't matter that it's fake. Doesn't matter. Fish, they sell fake fish that will swim in an aquarium. Beautiful, they're beautiful things. They swim around, and they're soothing and calming and mesmerizing.
Steve:I might talk- just my experience with pets was a little different. But I think Virginia is right. There's a point in time where the pet becomes more of a problem, but for the first stages of having Patty at home, having a dog was like a godsend because it was an activity. It happened you know the walks happened, you know the feeding, making sure water, taking them you know make sure they took care of their business, all of that stuff. And then even the transition into the community worked really well. And then there was a point where Patty kind of forgot, just like Virginia's mom did, and then it was she would carry the dog upside down and it was you know was not healthy for the dog. So the dog came home but I think the whole idea of pets and something that can love them or feel like it loves them. Even if it's a fake pet, it's really a great idea.
Virginia:When she was in assisted living, they had visiting people with their pets and their dogs and, and cats and they would bring them and be in the lobby area. And it was just a lifesaver, was just a lifesaver.
Steve:Okay, well, what about therapy dolls?
Virginia:Same concept, same concept, these dolls. They look real, they feel real. They've made them with soft skin. They can change their clothes, if they want to put on a new little dress on a doll, especially I'm not talking a lot about men, I don't think but women, they just they're, they love these dolls and can sit there for hours with a doll on their lap. And there was something about it that I don't know, it took me a while to get used to that whole idea because it was fake. And it was something that baby you know, like a five year old usually does. But you know what? Made her happy!
Steve:Yeah maybe sorry, maybe. Maybe. For guys, it's, you know, some sort of other anatomic type doll. You know, like, you know, old toy soldiers, whatever might have been a hobby before for a guy for for your dad.
Virginia:Cars? What about small metal cars, then? Some people are car collectors. Yeah. Just anything that can kind of distract them. And who wants somebody sitting around watching TV all day?
Steve:Correct. So let's let's move on. That's a great section. Let's talk about clothing issues. You mentioned several suggestions here. I think we can probably go through them quickly. But go ahead and get started.
Virginia:Yes, I remember when I discovered elastic waist pants for my mom. Walmart has a wonderful selection. They can. They're not just sweats. You can get regular lovely fabric for women. Men, they have, of course sweats that are just elastic waist. But they also have thinner fabric. So you can't always think well, they'll be too hot. A lot anything to eliminate buttons and zippers just makes life easier for both the caregiver and the person with dementia. Few or no buttons that can help especially and tops too. Pull over shirts --a shirt that has maybe a button at the top. Anything to make life easier. Getting clothes, on and off, will simplify life.
Steve:Yeah, I think that's really important. I was thinking about one of the issues, especially as you go through this journey, things change. Sizes change. Oh, yes, surprisingly, Patty put on weight when she went into community and I had to get bigger sizes the first time I've ever remember her adding that much weight. And then of course, the opposite. The opposite happened as we went along. And then we had to get smaller sizes again. So just kind of staying on top of having enough clothes and making sure you've got the right sizes. What about shoes? And what about nighttime?
Virginia:Well, you know, they're making wonderful slip-in sneakers now. Skechers makes a wonderful pair of shoes, that no ties, nothing complicated. They get to the point, unfortunately, where they really can't tie their shoes. So to be able to slip into shoes that are secure and safe for walking is a lifesaver. Night gowns that open in the back. When you get to the point where there's incontinence and there needs to be some kind of a change in the middle of the night. Perhaps not always. But sometimes. And if the night gown opens in the back, that eliminates difficulties of pulling something down. Nice shirts, don't they sell night shirts for men? Yeah, I didn't have that problem because I wasn't taking care of a man but my mom, I remember hearing that if you get them a night gown that opens in the back, life becomes simpler. Incontinence products have improved. I did notice that our assisted living facilities, incontinence products were not very good. So I bought them separately at home medical supply. But now pharmacies have them all over everywhere. They're pull up back like underwear. And they're they're much easier for changes and for the person to manage to.
Steve:That's great. I think those things I remember all of a sudden it started to happen and I as a guy, maybe I was out of my element. And I have changed a few diapers in my lifetime but just getting used to that whole idea. And, yeah, that's diapers are much better than they were 10 years ago.
Virginia:Much better than they were 10 years ago.
Steve:Alright, let's go back and talk a little bit more about the bathroom and water. And you you've talked about this being a scary place. Why don't you expand on that?
Virginia:It's not to say that everyone with dementia will develop a fear of water, but it's very common. My mom did for a while and didn't last. But for a while she was afraid to death of water. Getting someone to shower when that happens is not easy. There are some tricks. I think the biggest trick is to make the bathroom a very welcoming, warm, friendly place to be. You don't leave the water running when they're brushing their teeth. But again, we've talked about the importance of music, put a little music in the bathroom, but give them their favorite songs when they're in the bathroom either for showering, bathing or going to the bathroom. We had mentioned before the importance of aromatherapy, get that nice smell going on in the bathroom that can that can work wonders. It sounds counterintuitive, but a dish of treats. My mom was a candy eater. A dish of treats. If they knew there's a dish of treats in the bathroom, they might be more willing to go in there. Towel warmers, you can get them anywhere now towel warmers are wonderful. And Shower chairs. If they're sitting in the shower on a chair, they might want a towel around their upper body for warmth and just modesty they can they can be very very nice a plain towels you if you don't have a towel warmer but a towel for them to hold on to can help. Sometimes you're just going to have to forget showering for a while and they sell large toweletes at the pharmacies now. For bathing. You just wash them that way and and you just do what you can while they have this fear of water, and then over time, it changes back, it changes back. They have visors so that if you're going to wash their hair, the soap won't get in their eyes. Children's flavored toothpaste. Mom was afraid of water didn't want to brush her teeth. We figured out that a children's flavored toothpaste with a spit basin. She didn't even have to go into the bathroom to brush her teeth. We had a cup of water and we would brush her teeth with this little cherry flavored you know bubble gum flavored toothpaste. Give her some water and she would spit into the bowl. That worked for a while.
Steve:So question for you, Virginia. So with this children's flavored toothpaste? Did you try it yourself?
Virginia:I don't like cherry, I don't like bubblegum.
Steve:Well, no, it makes sense. Makes sense.
Virginia:The first time, I tried it with her. Yeah, isn't that funny? And then shampooing got to be kind of a problem. And this tip is basically for really, really toward the end stage. If you really want to wash their hair. There are sprays that you can get at the pharmacy that freshen hair, that's fine. But if you really want to wash it with water, they have something called an easy shampoo. And it's actually you blow it up, it's rubber you blow it up, and you can put it or you can put their you know, they're lying down in the bed and you put their head in the kind of rests their neck against the basin and with water and shampoo, you can wash their hair. It's not easy, but it might be a solution that you could try if you're really determined to get the hair washed.
Steve:What about dry shampoo? So did you try that?
Virginia:Yeah, those are good. Those are good. I always feel better when they're using water and soap but yeah, but those can be those can be fine until they're back, able to shower and get their hair washed. I actually hired a company one time, a transport company because mom was in a wheelchair, towards the end she was in a wheelchair. And I hired a transport company to take her to my hair salon. Because they had a very nice setup where I knew she'd be comfortable. They washed her hair, they colored it and curled it. I couldn't do that. It's expensive. I couldn't do that a lot. But you know what? I think it was before a holiday one time and I thought that was a treat for her and they were lovely people they easily put her into the back of this van with her wheelchair. She was in her wheelchair and they secured it and we got to the hair salon.
Steve:Alright, let's see, let's move on to eating, my favorite topic.
Virginia:That's a topic that can get kind of rough for a while.
Steve:Yeah. Tell your first story about your mom with a hamburger.
Virginia:Oh yeah, I disagreed with her on something one day, and she picked up her hamburger, and she threw it at me. This is my mom, my sweet mom who wouldn't hurt a fly. I had hamburger all over the front of me. So, you know, eating becomes more difficult because dexterity isn't good. They're not able to do what they used to do. But they now have what they call adaptive utensils. They have large handled spoons, large handled forks, they have scooped bowls. So in the bowl, you put their food, and they can scoop it with their large utensil, and it doesn't roll off a plate. I found those at the at home medical supply store. You can find them online too-- adaptive utensils. Swallowing, toward the end, especially can become a problem. And they have food thickeners. So if you want to serve them soup, you thickin it, and they can swallow it more easily. Swallowing. I don't know what the deal is. But it becomes it can become difficult. And the thickeners are very common at assisted living facilities. A lot of times they'll thicken their food, they'll thicken their liquids and it goes down easier.
Steve:What about appetite issues?
Virginia:They can go through phases where they have lack of appetite, it's really common. And you're thinking, Oh, they're not getting any nutrition? Oh, what are we going to do? Mom got a prescription for it's called Megace. And I think they have many over the counter products now, that will increase appetite. And it worked. For mom, it worked. She didn't always have to be on it. But when I noticed several days would go by we would get you know, liquid protein drinks and stuff like that. But I noticed that she just she was not hungry. She didn't want to eat. And then you have to think about a subject that I talked about in in the first episode. It could be a sore tooth, you don't know, because they can't really tell you. But sometimes they just naturally go through a lack of appetite, and Megace can help or a similar product.
Steve:And then what about the-- It's always interesting to me about when you talked about dolls and this whole evolution of returning back to their childhood and when I saw bibs, I thought about that. And yeah, just practical. Really.
Virginia:It's just practical. My only advice there is they sell adult bibs, but don't call it a bib in front of your loved one. I don't want anybody telling me I have to put a bib on. Call it, for a woman, call it an apron. "Let's put your apron on." For a man. "Let's put your big napkin on." Don't you think that'd be better? Steve?
Steve:I do. I do. I think that's very smart. Just a little subtle difference. And once they get used to the idea, and I've, of course had many Italian friends. And of course it's almost habit for an Italian guy when he's got spaghetti. He's gonna put a napkin around his neck and take care of it. Yeah,
Virginia:I took mom out for a we went to a Vietnamese restaurant and almost everything they had had noodles. And oh my gosh, she wasn't miserable. But she couldn't really eat a whole lot because noodles just were not making it to her mouth. So that was my fault. Not a good choice of restaurants.
Steve:Well, that's an interesting topic. I was gonna we're gonna move into mobility. And I thought maybe we might insert something here. And you kind of, it's a great segue. What about eating out? Because we were talking about eating and eating out and then adding to that, visits back home once once they're in a community. So let's talk about kind of taking them out for a meal, what some of your tips might be there.
Virginia:You know, every time we took mom out to a restaurant, she would look at me and she'd say, I'll have what you're having. And I thought, Okay, now I'll try to order something that I know she'll enjoy. But she was intimidated by reading the menu. It was overwhelming to her when it was a big menu, which I totally get. So I noticed her a lot saying I'll have what you're having. Another tip. You can have little business card size
messages printed that say:"The loved one with me has as dementia, please understand", and you hand it to the waiter or the waitress, that way they know what's going on. And they're kind, for the most part, they were kind. So that's my restaurant tip.
Steve:Yeah, and a couple of things I would add there. One is, you know, happy hour is a good time to go, as long as it's not crowded. I think sometimes restaurants in you know, in busy, busy times, and of course, eating early becomes a pattern. And I think you raised a really good point, it's almost, if you know what to order, and you're going to a place, they're not going to necessarily remember that this is their favorite place, they're just going to remember the fact that you're taking them out and you're going to eat. And I think this is something that kind of works when you're dealing with a community. The other thing, community living, it's a way to get a break, and you feel like you're doing something extra special for them, you just have to be careful about returning. And sometimes that's an issue, but I experienced something about bathrooms, and going out to dinner, or a meal, right? You know, here I am a guy and I have a mom and a wife, sorry, in this case, and it was like, whoa. And the first couple of times, I literally had to stand outside the women's bathroom and talk to ladies who are coming out saying is my mother's still in there? And then eventually, often a woman would say, "Well, let me go back and check for you." And some sometimes they would help her out. And then I finally kind of realized, it's like taking my child into the bathroom. And I went into the men's bathroom, and went into the stall. And that's what we did. You know, we took care of things that way. So maybe for guys, it's just not second nature. But I did go through that experience.
Virginia:You know, yes, a lot of times now they have, you know, a restroom that can be used by either male or female, which is really nice. But you and I did not have that with our loved ones.
Steve:Yeah, I think that's a very good point. Anyway, just a couple of things there. Because we run into those. I wanted to add something here about visits to the home just an experience that I had. My first few months with Patty in the community were difficult, just because she would constantly bring up returning to home, even though when I wasn't there, she never brought it up. But she would see me and that would so you know, do not go? Well no, you go because you want to be with them. But I often always had to say, Well, remember, the doctor said you should be here because this is a better place for you to get treatment for, you know, the problems that you have. And that would give me a break to move on.
Virginia:You don't want to look at them and say, "You are home," you know, and it's a community. That doesn't work.
Steve:Yeah, I've heard people say in our men's group that they tried that and it worked. But really, yeah, and again, every journey is different. So I made the mistake of bringing Patty home a couple of times. And because she kept asking about she wanted to see her flowers, she wanted to see the waterfall. She wanted to see this or that and it was like, okay, and two times one I brought her home and we went outside and was a beautiful sunny day. And she fell asleep on the on the divan outside and it was lovely. And then she woke up and it was like, Okay, time to go. And boy, she was not happy about going back to the community. So I think you have to be careful there. And again, you're going to run into that moment in time when you just can't go anymore. And that's when I made the second mistake. We got set up for Christmas. And the best time of the year for Patty was Christmas. She had all these Dickens village things and lights and her trees were always just so amazing. And her daughter was with us -- our daughter was with us. And so we we decked out the house and we brought her home, and she was overwhelmed by it. Now granted, this was somewhat later in the process. But you know, you think it's a good idea. But reality is whether is that going to be such a dramatic change for them that it's not going to be good experience. And it wasn't exactly and was really sad was sad for me. And it was really sad for my kids. So anyway, I just pass on those things in terms of using judgment. Thank you. Yeah. All right, let's it kind of leads into talking about mobility. Why don't you talk about some of these great ideas about mobility.
Virginia:Well, one really handy dandy thing that you can get for your car is called a swivel car seat. And it's just a pad that you put on the seat where they're going to sit and then when they go to get out. They just swivel it's just easier. They also have handles you can attach to you know the the top of the window area to help them get out of a car but after a while it gets kind of difficult to get in and out of a car. Anyway swivel car seat. In her little living area at assisted living, we purchased what they call a lift chair. It looks like a lazy boy lounger chair, but it's motorized, and when you push the button, it lifts and pushes them or tilts them forward to get out of the chair. My mom was not a big person, but still getting in and out of a chair was not easy. And they can be rented or they can be purchased. So I thought that was a good idea. A heavy duty, it's what they call a heavy duty gait belt, you put this belt around this -- probably two to three inches wide, and you know, it's pretty heavy duty and you put it on them and you can lift them yourself, hopefully not getting injured, but you can lift them out of a chair. And we did use one of those quite often. And then when they're walking, it steadies them, you can kind of hold on to the belt when you're walking. And they can be they can feel a little more secure when they're walking. There's something called a Hoyer lift sling. Now this is really at the end, but not so much at the end where they don't enjoy sitting near a window, watching the yard, or whatever. But getting out of a bed can become very difficult. And this thing looks scary, but it works. It's called a Hoyer lift sling, and they can be purchased or rented. And they have a series of straps that actually lifts them up and out of a bed. And I think most assisted living places do you have them now.
Steve:Yes, we had one. And Patty used it towards the end. All right, let's, let's end up here with your description of fun accessories on walkers.
Virginia:My mom loved this little stuffed bear. And on the front of her walker, we had a little cart, you know, I don't know, a little basket, I guess it was a wire basket. And we put this stuffed animal in that basket. She loved it. She loved it-- wherever she walked around with her walker, she had her little stuffed bear with her. And it sounds ridiculous. But you know what? She loved that thing. Eventually they'll be in a wheelchair, if they make it long enough. But with a walker, a cup holder, you know, they have a million things you can attach to a walker now.
Steve:Yeah, and I just think it's a whole idea. It's not just functional as a walker, it can be personalized, and the personalization makes it more attractive. And, and I've seen people with who are using walkers for an extended period of time. And some of them even have a place for you know, like a pocket where they can put you know, notepad or magazine or something like that. So whatever is going to help make the walker more attractive and more valuable and more useful is a good idea.
Virginia:No one wants to use a walker. But if you can make it pleasant, fun, cute, attractive, whatever it helps. It's important so they don't fall.
Steve:Okay, well, I think we're almost out of time. In fact, I think we're pretty close to 30 minutes or so. Anyway, this was terrific, Virginia. And it's interesting how you have built this. And I just have to say, you know, you and I've talked many times about the difference between you know, caring for a, you know, a spouse and caring for, you know, your mom or your dad. And this just rings so true. Because I think you know, when you're when you're dealing with a spouse, you're kind of like more intimately involved, not to say that you weren't, but it's just like, they're just looking at things from a different and you saw many of your ideas were really experiences that you had with your mom, and I thought it was just terrific.
Virginia:Well, thank you very much. Our experiences are different, yours was with your wife, mine was with my mom. There are similar, you know, the tips that I gave today and the other day, some of them fit both, and some of them don't.
Steve:Well, I think a lot of them crossover. I just wanted to say I continue to be amazed at the insights that you've gleaned as a part of this process and part of this journey. So we'll say goodbye until our next episode. And thank you for joining us.
Virginia:Thanks, you betcha. See you next podcast.
Steve:Spotlight on Care is produced by the University of California Irvine, Institute on Memory Impairments and
Neurological Disorders:UCI MIND. Interviews focus on personal caregiving journeys, and may not represent the views of UCI MIND. Individuals concerned about cognitive disorders, prevention or treatment should seek expert diagnosis and care. Please subscribe to the Spotlight on Care podcast wherever you listen. For more information: visit mind.uci.edu