Steve interviews Virginia about tips she has compiled over the years to improve the caregiving journey. Listen along as they delve into topics on healthcare visits, money matters, safety, and mood changes. This is part 1 of a 2 part series of tips and tools that can help improve quality of care for loved ones living with Alzheimer's and other forms of dementia.
Mentioned Episode in Podcast with Stephen Magro, an elder law attorney, can be found here:
https://www.buzzsprout.com/1589794/episodes/8946153
Steve interviews Virginia about tips she has compiled over the years to improve the caregiving journey. Listen along as they delve into topics on healthcare visits, money matters, safety, and mood changes. This is part 1 of a 2 part series of tips and tools that can help improve quality of care for loved ones living with Alzheimer's and other forms of dementia.
Mentioned Episode in Podcast with Stephen Magro, an elder law attorney, can be found here:
https://www.buzzsprout.com/1589794/episodes/8946153
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, everybody, and welcome to another episode of spotlight on care. And today we're in for a real treat. We have Virginia is going to be our guests. So guess what I get to ask the question to her, and I'm so excited. Anyway, we're gonna talk about some really interesting things many of you may not know that Virginia's been writing a blog for for several years now, based on her experience of caring for her mother, and really, it's very, very well done, as well as kind of her own experiences and in dealing with other people. And lastly, what she's picked up, she's going to kind of amalgamate all of those things into a series of tips. And it's going to be really interesting. It's going to be fast paced. I'm going to interrupt her occasionally. And, here we go. So Virginia.
Virginia:Thank you Steve, that was a very nice introduction. It is kind of weird being on this side of the mic.
Steve:I love it. Okay, what about, we're going to talk first of all about diagnosis, and the whole thing that goes on kind of post diagnosis, which is kind of a huge starting point. And in the journey, what do you think about professional appointments and the whole process of getting them and dealing with them?
Virginia:In the, in the beginning, you don't know what's happening to your loved one, they're acting strange, kind of more strangely than usual. They're repeating questions. They're repeating statements, you're scratching your head all the time, and then you get a diagnosis. And they're probably most likely going to say, MCI, or mild cognitive impairment. And so you kind of know you've, you've joined this group of people experiencing this journey. And there are just some tips that I wrote down a long time ago that I found helpful. And one of the I'll start off by saying, visit the eye doctor, we went to the eye doctor fairly early on, and the equipment really does look scary. They're bringing this big thing up to your face. My mom was not comfortable at all. But I knew she needed a recent, you know, prescription for her eyeglasses, I knew that would be a good idea. And it was a good idea. And I don't think I ever took her back. And the journey was eight years, and she probably did need a new prescription. But there's no way I could have gotten her through that appointment. Dentist, go to the dentist. That's also I hate to say scary, but it can be scary for a lot of people. They're working closely in your mouth, they're telling you to keep your mouth open. It's just scary. So I remember I took her there. And she did she needed a filling, which could have caused her pain later on. And it's she had a cleaning and I knew that was good. They do have visiting dentists and we had one come to her assisted living facility one time, and she did a fine job, that woman was wonderful. But if you can get to the eye doctor, and get to the dentist.
Steve:So your point really is you might think you have time for all these things. But the idea is, is get your doctor appointments on on ancillary things done as soon earlier in the process, then you might have thought. So talk a little bit about notebooks and the whole idea of journaling and how that can be so helpful.
Virginia:Yes, those are two very separate different things. The first thing that I did was prepare a notebook with mom's social security card a copy of her social security card, her Medicare card, her supplemental medical insurance cards, copy those, put them in a notebook, list doctors with their phone numbers, the the importance of having those things handy family members names and phone numbers. It's important because there are a hitch said there are times you're gonna have to run off to that doctor's office with them for some reason, or the emergency room in the hospital. And when they visit the hospital, it's scary. You're trying to keep them comfortable, and you have to produce a lot of information. So that notebook I kept in my car.
Steve:Would you also think you would put your medications in that notebook because, I found that was always something we were being asked about. And sometimes they were changing. So I had a place where I kept notes about.
Virginia:Excellent, excellent idea. Yes, definitely for sure. And recent past medical records, diagnosis doesn't hurt, put it in that notebook actually had two copies, I kept one at home, and I kept one of my car. Journaling, you are going to be attending doctor's visits. And the doctor, we had more doctors look at mom and say, "How are you, Helen?" And she would say,"I'm great. How are you?" I'm thinking that's not why we're here. And they wouldn't look at me. I think if you keep a journal of their symptoms, their behaviors, their behavior problems, how they're feeling, you can pull those together before a doctor appointment. And actually, I think that the doctors offices are starting to appreciate that concept, because they don't have much time for you. So you need to have those things ready to go.
Steve:I think we even heard from a recent guest, that the whole idea of keeping track of your memory issues as a part of that journal is very helpful, because you're seeing the doctor maybe once every six months, or more frequently, and sometimes reporting on what you're experiencing adds a great deal because they can't see in 25 minutes, what you see for six
Virginia:But we also forget, right? We forget we forget their months, reactions to things, their behavior problems, because in the meantime, you're thinking to yourself, Well, that can't I that behavior can't last that's ridiculous. You know, and you look back at your notes. And you think, okay, that did pass, but we're having other issues. Yeah, exactly.
Steve:So and this whole area of soon after the diagnosis, why don't you talk about finances and kind of related is the whole elder law issue in terms of making sure your documents are together?
Virginia:Absolutely. I grew up, never asking my parents how much money they made. I didn't feel it was appropriate. And I don't think they would have answered me if I asked them. It wasn't my business. So I grew up thinking, my parents finances my parents money is not my business. Then you have a mom, my father passed, and I was taking care of my mom. And I learned rather quickly, that her financial situation, I needed to get a grip. She was writing checks that didn't make any sense.$2,000 for a sprinkler repair, she went off and bought a dog. I had to get a grip on the money that was coming in. And the money that was going out. And it felt wrong. Took me a while to realize that it wasn't wrong, it was necessary.
Steve:So what do you recommend there in terms of getting a grip?
Virginia:You just have to face the fact that you've got to learn it, you've got to go through records, even if you have to do it when they're not in the same room with you. That's what I did. She was out watching TV and I went back to the den. And there were records, and I had to look at them. I didn't even know where they banked
Steve:Were you a signatory on their account?
Virginia:I became a signatory later on, on the advice of an elder law attorney, which I had contacted. And he said, "You need to have power of attorney for financial matters. And you need to have power of attorney for medical matters. And end of life wishes." We do have a good podcast with Stephen Magro. He's an elder law attorney here in Orange County, and he, you can go back and find that podcast, it is pretty good. It's really good. We've had a lot of good feedback about it.
Steve:Okay, so I guess the message there is, is be prepared to dive in and maybe even make sure if you aren't a signatory that you will become a signatory earlier rather than later. And sometimes that's intimidating for the loved one because they think you're going to, something's gonna go wrong. So doing it earlier, is really good even before maybe symptoms are starting to show up. Because once symptoms start to show up, then all of a sudden, they can be very questioning, like you're trying to steal their money.
Virginia:Oh, absolutely. that happens all the time. My mom and I had a good relationship. So it wasn't a problem. And she appreciated the help she got so that she really appreciated me knowing what was going on with those finances. But you must know in the beginning it does not feel right. You taking care of your wife. That's a little different, isn't it?
Steve:Yeah, but we had that division of labor. Because I wasn't all that great with money. I could figure out how to make it but I didn't wasn't great at managing it. And so you know, she took care of all of that. And she actually was the controller in our company. But you know, I had to take back over check writing, and I had to make sure where all the bills were and all that stuff. So I had to dive into. Okay, let's talk about an interesting topic, which is informing family and friends have the diagnosis.
Virginia:Yeah, that is interesting. I had at the end of, well, let me go back, I decided that her friends were going to notice, I had her friends call me and say that they had noticed. Betty Kay's across the street thought she wasn't going to make it home in mom's car, they notice that they don't really want to ask you,"Virginia, your mom is acting differently. She's acting strangely, she's repeating things." They're going to know, they're gonna know. So I just feel it's better to come out with it. Either phone calling, or I actually wrote a letter. And I explained everything. And I said, Please don't lose touch. Please know that we love you. And we welcome visits, phone calls. But this is what's happening. And I admitted, I didn't really know what the process was going to be. But I came out with it.
Steve:Yeah, no, that's good advice. I think this whole category of keeping people informed that are interested in being informed actually continues beyond diagnosis, because you're going to have some friends who are eager to stay apprised of what's happening. And you're going to have some friends who don't want anything to do with it there. They'd rather not hear about it.
Virginia:They don't know how to act around someone with dementia. And I totally understand when that happens, I do. And I did understand it at the time.
Steve:Alright, one tip to add to the whole family thing, just because I think, especially if you have family that's not living near you. And they live in other places. And I had a daughter living in DC and a son living in Cincinnati. And it was tough on them, because their mother was, you know, having memory issues. And they wanted to, they missed being with her, they were afraid for her. And so even as simple as kind of just doing a report, we went to the doctor, and I'd send out an email about what we heard. And you know, what I what I was seeing, and then occasionally I would send out a note, I did this, you know, maybe it was positive, these things happened, there was a music festival or something that we went to. And I think that helped them feel less removed from the process. And especially for family members, it was very valuable, because we didn't have issues. You know, it was like they knew what was going on. And when it was apparent to make tough decisions. They weren't questioning anything, because they'd been in the loop.
Virginia:Absolutely. You were good at that.
Steve:Thank you. Okay. What about help when caregiving, the caregiving need arises, well, big topic, maybe we should probably just a piece of it.
Virginia:All these are just small pieces. One of the best pieces of advice I had gotten was, "Do not rely on luck." You may find yourself in need of a doctor appointment. You get sick and you're in bed. You need help. And it's it's best to think about that in the beginning, before you get too far into this disease. Because I hate to tell you this, but it's not going to get better. It gets worse. And people are willing to help. They really are they want to help. And you can hire help whatever is necessary. But a lot of caregivers end up ill because they're so stressed out. And they're not good at asking. You need to get good at asking for help and get that list of people together early.
Steve:Yeah, I totally agree with that. I was lucky enough to have it was interesting. This my friend Michael and he he really had trouble going to see Patty that was really hard for him. But he was there any hour the day when I referred to myself being on the ledge ready to jump. And I would call him and he would talk me off the ledge. It was our phrase to describe, you know, the anxiety. I was feeling the fear. I was feeling things like that. So you have that kind of one friend can be more than one. But it was great to have one that I could just kind of rely on.
Virginia:Lovely. Yeah. What a good friend.
Steve:All right. Well, let's move on and talk about another big topic in this tip area. The whole idea of safety in the home while safety in general, but particularly in the home.
Virginia:Yes. A lot of things have been created and developed since Mom had her disease.
Steve:How long ago was that just for?
Virginia:Oh, she passed in 2013. She'd had it for eight years. Wireless motion sensors were not in existence. There were pads that you could put at the base of a bed or the side of a bed on the floor. So if they get out of bed in the middle of the night an alarm will sound and it was horrible, okay, that industry has changed. There are wireless motion sensors that you can plug in next to a bed and turn on or off. You can be notified on your cell phone, which you probably keep it the side of your bed that your loved one has gotten out of bed. You can set Do you want it quiet? Do you want it loud? Do you want it a song? Do you want it a beep? They're wonderful. They're wonderful things to have now that we're not around when mom come when I actually needed one, GPS tracking devices. Again, there was nothing like that with mom. But I just spoke with a friend who put an Airtag in her husband's bicycle seat. And he decided to take off one day on his bike. And she tracked him about three miles away at a shopping center. I don't know what would have happened had she not done that. She did put an ID kind of a note in his wallet that he had dementia. But that Airtag made it easy.
Steve:I'm glad you mentioned bracelets. I wanted Patty to wear a bracelet. And she recognized what it was it was early again in this process because you just never know. Right? And and so but her big deal was well if I'm wearing one you have to wear one. So I started wearing a bracelet.
Virginia:Did you have her phone? Her phone number?
Steve:Yes, yes. And it turned out that that was very helpful, because she went on a walkabout. And we couldn't find her because we didn't have GPS and any attachment to her. And the police found her and had the phone number right there.
Virginia:So there you go. Perfect. Yeah.
Steve:What about stop signs? What do you mean stop signs? We're talking about outdoor stop signs?
Virginia:Yeah, well, I'm talking about sometimes, like OfficeMax, you go in, and you can buy a sign. That's like 12 inches by 12 inches, and it's red and white and says stop. You can buy a few of those and put one near your front door. You can put one near the back door. Because there's something about when they want to wander and they want to take off out the front door. There's something about that sign that can tell them stop. And then maybe by then somebody has seen them almost take off. Believe it or not, those can be helpful.
Steve:What about the whole bathroom experience is quite a few things that can happen. Yeah, in the bathroom.
Virginia:Yes, it's a slippery place. It's, you know, pay somebody or do it yourself. If you're handy install shower bars, that you can hold on to the toilet seats that are higher, so that when they go to sit on the toilet, they don't have to go down as low. And then there, there are ways there are toilet seat seats that have bars on either side, so they can boost themselves up. It just makes life easier. When when you have something like that. Do not use throw rugs in the bathroom. If you use a rug, just make it heavy enough so that it won't slip and you don't trip. And one of the first things I was told was get rid of throw rugs. Okay. All right. Will do
Steve:Yeah, I think sometimes in the bathroom though. It can get wet. So having one is not a bad thing. Yes. But it needs to make sure that it's stable and it won't slip out from under them. Yes. Especially when you're holding them.
Virginia:Yes. Same with the pad in the shower. Make sure they have you know suction cups or whatever and that that thing isn't going to slip.
Steve:Okay, let's go on to our next area. Mood swings, how to control the bad ones. You got some tips there girl.
Virginia:I do I do. My mom was the sweetest thing and then she got dementia. Still sweet. But there were moments. So what I had to learn was something that they call therapeutic fibbing. I called a helpline one day I was so frustrated. And she said, you know, I'll bet you were taught when you were growing up to not lie. I said, Yes, I was. And she said, Well, it's time to unlearn that and just know that it's called therapeutic fibbing, and you need to join their world. What ever they say is the truth. It could be 90 degrees outside and if your loved one says it's snowing, it's snowing. And you say isn't the snow beautiful? It's hard. is not easy, especially when my mom started talking about her second husband when she didn't have a second husband. I should have said, I'll bet he was great. I'll bet he was wonderful. What a great guy. I hadn't learned it yet. I should have said that and she got mad.
Steve:So you're actually talking about the whole idea of correction to right? So what do we mean by don't worry about correcting, it doesn't really matter.
Virginia:Just don't you want to keep the peace? Just make them happy. Because if you agree with them, they're not going to get upset. You just, if they say it's time for lunch, and they just ate, which happens a lot. You say, Okay, I'll go get it ready. And then you disappear for a few minutes. And then hopefully, they've forgotten and they're full, you just have to go along with whatever is happening.
Steve:Yeah, that's a great tip. Okay. Yeah, I was just going to add, yeah, this whole issue of lying comes up a lot, especially for people early in the process. When you get good at the fibbing, you realize we used to call it white lies, somehow that made it better. I don't know why. But it just your job is to keep the person happy. And it doesn't really matter. And when you become an argumentative person, then you're not the caregiver that they're looking for or they need. So that's exactly right. We're going to talk about your tip for music, this is really good.
Virginia:We are going to have a podcast on music, it is so important. And I think it's it can be summed up by saying music is magic, get a set of headphones, plug it into an old phone, plug it into a unit that they call a simple music player, you can find it on Amazon, headphones, and a playlist of their favorite songs when they were young. And a look comes over their face. That life just changed. Music is magic.
Steve:And what does it do? What does magic -- what happens?
Virginia:So you know that we're going to find somebody who knows some of this science. Because apparently, the music memories are stored in many places in a brain, not just one, not just near the hippocampus, or amygdala or front back, whatever. It it's actually stored in many places. And someone with dementia can draw from all of those places. And my mom could sing hymns, and she didn't know my name.
Steve:really have dementia, but boy did she love the music from her generation.
Virginia:And they can sing the words and, and all of a sudden, they're just content and happy.
Steve:Well, let's talk about the whole idea of picture books, and how that becomes a wonderful mood changer.
Virginia:This one's good to get yourself a notebook, whatever, and take photos of family members, put them on a page and put their names below the picture. So that your loved one will look at that. And say there's Bob, there's Jim, there's Virginia, they don't have to remember who it is. Because they won't, at one point, they won't. So just make it you know, 5-10 pages of family pictures, friends, pictures of friends, and put their names below the picture. Easy peasy. And you can show your loved one that notebook and they get happy and 15 minutes later, it's a completely new experience.
Steve:Honestly, this is really a great tip just because I think we think that all have photo albums you have especially for someone who's older. You have years and years and years. And that can be okay. But it can be bad because they can't remember any of it and therefore they get very frustrated. But I think what you're suggesting is the power of something that actually helps them with things that are very current for them.
Virginia:Yeah. Simple. I have what seems like hundreds of photo albums that would have that would have frustrated her. Yeah.
Steve:Okay. Aromatherapy.
Virginia:Okay, Steve, do you have a diffuser in your house? I do. I have them all over the place
Steve:We have candles. I like candles.
Virginia:Aromatherapy with essential oils. Lavender is especially helpful. It's very soothing. A lot of people fall asleep to the smell of lavender. I have one in my bathroom right now that has an orange scent to it. It's lovely. It's just lovely. It can it can work wonders. scents, smells reminds to them or tries to remind them of things in the past that they're happy doing. So I recommend a diffuser with your choice of essential oils.
Steve:I remember Patty had a perfume that I would always buy her. Chanel number five. Yeah. And so I kept that around. I had forgotten that it just reminded me about it. Occasionally, I would put some on her and she would, she would smell it or she would like women do in their, in their hand or forearm. And it just brought back all sorts of wonderful memories for her. So yeah.
Virginia:My mom's was white linen.
Steve:I like that one, too. All right, let's talk about weighted blankets.
Virginia:Wonderful invention. They sell them now, to fit. Someone sitting in a wheelchair, put a weighted blanket on their lap. It's comforting. They can't get to sleep, put a weighted blanket on top of them. Watch what happens. I have one.
Steve:I think I need to get one.
Virginia:It's they're available everywhere. And they it's nice that they come in different sizes. Now, you know, when they say your dog gets all upset, like with lightning, or thunder or whatever they say, put a jacket on him and cinch it because it's tight around them and they calm down. Same thing with humans.
Steve:That's really a great tip. I think we always think about cold or, or hot, you know, but this is really more of the comfort and the security most definitely somebody feels like, Well, I think what we're going to do here, our friends on on this podcast is we're going to stop now because we've got more stuff to cover. And we're going to go to a ersion two so thanks, Virginia, you just have this wonderful style. Doesn't she have this great voice.? I mean, it's just so friendly and engaging.
Virginia:Very sweet, thank you Steve.
Steve:Anyway, so we'll be back shortly with another episode and this will be tips number two.
Virginia:Absolutely happy to do it.
Steve:Thank you. 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