Audio file
THIT406 Alzheimers.mp3
Transcript
Mackenzie Jones and Margaret Mullins
Thank you for joining us for this episode of Talking Health and the 406 where we are one community under the Big Sky. I'm one of your hosts, Mackenzie Jones, advocate of Disability, Inclusion, accessibility and health. And I'm Margaret Mullins, the social determinants of health program coordinator and the Chronic Disease Bureau here at the Department of Public Health and. And services for this episode, we're going to hear from Melanie Williams, who was caregiver to her mother with Alzheimer's and is now the executive director of the Montana chapter of the Alzheimer's Association. We will also hear from Kayla Rock, the Alzheimer and Dementia program manager in the Chronic Disease Prevention and Health Promotion Bureau, within DHS. Let's start with some facts about Alzheimer's in Montana.
Margaret Mullis
There are 21,000 Montanans that's about 9.8% aged 65 and older that have Alzheimer's, and in 2021, Montana had 9 geriatricians and 7190 home health and personal care aides. So to meet the 2050 demand. Montana will need to add an additional 50 geriatricians in 2480 home health and personal care aid. Also, in twenty 21341 people died of Alzheimer's disease. There are 1329 emergency department visits for every 1000 people with dementia, and there is a true financial burden. $22,360.00 were spent by Medicaid per person with dementia in 2020. 3 So this is a topic that we certainly deserves our attention. I think we'd like to start. We've mentioned to our guests are, but I'd like you to hear from both of them. So we will start with Melanie, if you could just tell us a little bit about what you do and how. You got involved.
Melanie Williams
In this work. Yeah, of course. So I'm Melanie Williams. And as Mackenzie said, I'm the executive director. For the Montana chapter of the Alzheimer's Association. This is a very new career for me. Just within the last three years, I started as a community engagement manager, then became the program director and now the Executive director, and it all stemmed from my role as a caregiver for my mom. At the time, I was actually a public school teacher and I was in that role for 30 years, 30 fabulous years of teaching. But that's when my mom's journey started, when I was still teaching and floundering around as a caregiver, and it led me to where I am today and hopefully can bring more care and support and resources to caregivers than I felt I had at that. Time.
Margaret Mullins
Thanks Melanie and.
Margaret Mullins and Kyla Rock
Kayla, please tell us a little bit about your involvement through kind of rock and I am attending Margarets coworkers in the public health and safety division within DHS and I do oversee the Alzheimer's and Dementia program, which entails managing the bold. Plant which we were awarded last year and that stands for building our largest dementia infrastructure.
Mackenzie Jones
Thank you, Melanie and Kayla. The talking health from the four six podcast was created so that Montanans could share their stories about health, healing, and community. Melanie, why is telling your story so important?
Melanie Williams
Telling my story is so important because there has been such a stigma around Alzheimer's and dementia for so many years that people are afraid to talk about it and because of that. They don't know where to go for resources. It's not very common knowledge where resources are available. It also makes you feel very isolated and alone. You feel very helpless. You feel like you're on an island and you're not sure what you're navigating. And so I think talking about it will bring people together. It will build community. It will build a network of support. That network might change throughout the course of the disease, but knowing that somebody else is there, going through the same thing that you can relate to is so powerful. There's power in having community around you when you are on this journey.
Mackenzie Jones
Thank you, Melanie. So you mentioned that your journey into the Alzheimer's Association started with your mom and feeling like you needed to find all these resources and then realizing the importance of sharing your story and that you, you could do this. You could do this to support other people in the. In your situation.
Margaret Mullins and Melanie Williams
So Melanie, you spoke about your mom and that you have a story there. I'm wondering if you'd be willing to share with us a little bit about her and your experiences. Yes, absolutely. So my mom was ahead of her time. She was a trailblazer. I always say she was very academic, very intelligent. She had a lot of pride in that. She earned her doctorate when I was actually just starting college myself. She then became a licensed professional counselor. She had a pilot's license in the early 70s. She was always breaking the mold of what? What traditional was is somebody told her that women shouldn't do something. She made sure she went out and did that, so she was fantastic in that era of just. You know, finding new houses for women standing up for women. As far as what they could were capable of doing and not having any boundaries, she was really the one that really initiated in us that education was the key to whatever we wanted and that was very, very important to her. And so to see her start, to show signs of things not connecting in her brain. For her thinking was very devastating for us and I think it was very devastating for her. I think we all went through a different grief cycle. And the biggest one was probably denial. All of us were sure it was something else. I was sure it was stress. I was sure she wasn't drinking enough water. I was sure she wasn't managing her diabetes correctly. She would talk a lot about how she was losing her memory or she wasn't thinking right and she would tell people this. But because I think she was so intelligent, it was hard to believe she presented so well and she was such an amazing communicator and. It's such a vast vocabulary that it didn't show up in presentation because she could talk about very intellectual topics still, and so nobody really believed her because it's like, how could this person present so well, who's so intelligent and so kind and so caring and so compassionate? And has helped so many people, whether she was in the education world, she was at the University of Great Falls, where she was a huge advocate for Native American students and some of them still reach out to me today to tell me what an influence she had on them finishing their degrees at the University of Great Falls or she was. Willing people just talked about what an impact she had on their life, and so she could present so eloquently and so compassionately. But I think when she started to tell her doctors and others, you know, I think something's wrong with my thinking. We were all like, no, you know, it's got to be something else. And for me, I was, you know, I was just scared to death. Because I thought I don't know what to do. If it is a dementia or an Alzheimer's, I don't know where you go. I don't know. I don't even know what next steps are, so I had heard once well when they start putting their shoes in the refrigerator then you know it's all cyber. So all this crazy stuff was going on. But I thought, well, at least she hasn't put her shoes in the refrigerator. But she had been doing things that were very similar, so there was a lot of denial. There was a lot of negotiating, just hoping it was something else trying to figure out something else that was going on. Trying to reduce stress in her life, trying to help her manage her diabetes. What I learned in all that is that my stress was escalating because I was working so hard to try to keep her. Down I was compensating a lot for her when she was forgetting appointments or forgetting to be someplace like a doctor's appointment, or losing her car. I was the one compensating for it by trying to not necessarily cover it up, but justify it. And so I was becoming exhausted. My own kids were in high school at the time, so I was trying to follow their sports. Trying to stay connected with them, they were going to school 15 miles South of where I live and Mom was living 15 miles north and so I was running in either direction quite a bit, either running into check on Mom or running to my kids at sporting events, and I was still teaching full time. So the harder I tried, though, the worse it seemed to get. And of course, when you have something like type 1 diabetes. And dementia, which we didn't know at the time, it just makes that problem that much worse, because managing it became very difficult for her. So then I became a part of her management. And I remember when her diabetic team told me they said, well, you are your mom's caregiver. And I looked at them and I'm like, ohh, no, nobody takes care of my mom. She's been very independent all her life and when they said that it was kind of a shock and that was just for her diabetes. That wasn't even the dementia. It was it just kind of hit me. Like my mom doesn't need taking care of. And so it took me a while to grapple with that. Like, what does that mean? What do I need to do? And of course, as a caregiver, you have to find that fine line of how much do you do for them and how much do you set in place? They can be independent. And that's it. Seems like that's an everyday. Balancing act of trying to find out what they're still capable of doing because you don't want to take away everything you don't want to rob them of their dignity and and who they've always been. So we got her CGM which took a while because of some Medicare logistic. But then I found the CGM just stressed me out more because now I'm getting up in the middle of the night to go check on her because she won't answer her phone and she's sleeping just fine, not realizing that her blood sugar is plummeting. So my stress, like I said, was going up. Well, she just kind of went on her merry way. So. It was after about five years of that. Then several hospitalizations that the teams. Said your mom can't live independently anymore. She's not managing her diabetes. You know it's getting worse. She's ending up in the hospital too many times. And so at that time, we had to look outside of Helena because no assisted livings in Helena were equipped to take a Type 1 diabetic. So she moved near my brother in Billings, and it was then they diagnosed her with dementia. And in a way, it was kind of a relief, but then it was. Also like Oh no now. So now we have this new thing too that we're dealing with in an explained a lot and what every time I talk to somebody who has a family member with dementia, all of us do it. We say, oh, looking back, there were signs, you know, five years before 10 years before. But I think we all go through that negotiating stage where we think if we can just fix this for them or if we can just take. Away this stress. If we can just start managing their finances, you know, we think it'll help. And the thing with dementia, it's a progressive disease, and it might help things in the physical situation, but it's not going to help their dementia. So once she got there and we got her into an assisted living, I thought, ohh, you know, this will be nice. I can just enjoy my mom for who she is. I don't have to worry about her diabetes. And that was very, very true. However, I learned that the emotional full of dementia became more profound. And I was the one that got a lot of the phone calls when she was really upset and especially through COVID wondering what she had done for us to put her in jail. You know, why did she have to live like that? All the anger which nobody in COVID none of us know how to handle that. That conversation, and so a lot of phone calls, just trying to talk her through it. So I started doing little things with her where I'd say, mom, why don't you let's write a book? Because she always wanted to write a book. That was always their goal. So I said, why don't we start writing about your childhood experiences? So that would we do a lot of, you know, deferring and deflecting and. Trying to get people off topic when they perseverate so that helped us with a lot of that time is just having her tell me a story and I would type it and then the disease of course progressed in those five years until we lost her this last February so.
Margaret Mullins
That was a really important story, Melanie and a really, really hard journey to have to be on. One of the things that I heard when you were talking was negotiating sort of that this, this reality was coming to pass. And I, you know, one of the things that I think comes up or when people start seeing signs, your tendency, of course, is denial, like you mentioned, but also that this is age-related. Oh. Mm-hmm. I know it could be dementia, but I I I I'm fairly certain, given my mother's age, it's just her age. Are there things that you. Might inform the listeners about to help them recognize perhaps one.
Melanie Williams
Yeah. We talk a lot about. So now I'm speaking more as the executive director, we talk a lot about normal aging versus dementia and I can use my mom as an example, but it looks a little bit different in everybody forgetting names, forgetting addresses, forgetting the day of the week are fairly normal as we age. The difference is most of us either have the ability to figure out what day it is. We look at our phone, we look at a calendar, we figure it out, or the name or the address comes back to us at some point, or we know how to find it, and then we carry on. Somebody with dementia doesn't always have that. Ability. And so once they forget something it. And there was a man in Montana that explained to me he was diagnosed with Alzheimer's. And he said it's like it didn't even make it into my short term memory. He said my wife will send me outside to do something. And he said I'll go outside. And it wasn't. It didn't even make it into my short term. So I get outside, and I do my own thing. And I. You know, do whatever I want to and I come in and she's. So upset. And I don't understand why she's so upset because he said, I don't even have it in my short term memory. What she told me, and I think that's the biggest difference. Or that's one of the signs is that they they can't even recall it. Even when you bring it to their attention. You know, most of us would say, oh, shoot. Yeah, I forgot. That's what I was going to do. Where you walk into a room, forget what you're going in there for. You walk back. Out. And you're like, oh, yeah, that's what it was. Somebody with dementia. Often doesn't have that recall. All, so they can't recall. And then the other piece is that ability to problem solve. I noticed it with my mom, with her pump. She had been using a pump for her diabetes for quite some time, and all of a sudden forgot how to troubleshoot. So one day she called me and she said I think the battery is going dead. And I said, oh, OK, well, I'll be right in. You know, it takes me about 20 minutes to get to her house. I said I'll be right in. Don't do anything. I get to her house and she's gone. The pump is in pieces all over the. The battery is gone and mom is gone and I'm like Ohh boy, this is not good. So I called her and I'm like hey mom, where are you? Oh, I'm at goodwill. She loves goodwill. I'm at goodwill. I said OK. I said, well, where's the battery? Oh, it's in my pocket. But in her mind, that was not bizarre. There was nothing about that. That didn't make sense. And I said, OK, well, I said we'll need to get a new battery and then I can't reprogram your pump. So we've lost all of that. You'll have to take it back to your doctor. And she said, Ohh, no, you're smart. I'm sure you can figure it out. So her ability to realize. What she had done wasn't there anymore. And remember, this is a woman who had a PhD. She's highly intelligent. But things like that started happening, but she was just like I don't get what the big deal is, you know, it's. So I took my pump apart and I have the battery in my pocket. Why is that a problem? And so trying to explain her well, now we have to do the shots all weekend because I don't have any way to reprogram this. I'm not a doctor. Things like that start to happen. They might be driving to a familiar location and forget where it is. I heard about a gentleman who was a principal at a school for years. He was driving to work one day and got back home and his wife said, what are you doing? And he said I don't remember how to. Drive to my school. They might be following a favorite recipe that they've always done, and all of a sudden forget the order of things and just reading it doesn't always help them. You know they can't make sense of all that. So when you start to notice a change from what they've been, maybe even in their finances, miss spending money or spending large amounts. You know, writing checks for the wrong amount or forgetting how to write a check. I noticed that with my mom she'd forget to sign them, which is maybe a good problem if you have to mention, but just change it so if somebody's always been like that, that's not dementia, but if they've been pretty meticulous or, you know, kept their house. Clean things like that and then you see a change that might be a sign of a form of dementia.
Mackenzie Jones
Earlier you you. Used the acronym CGM. What does that mean?
Melanie Williams
Constant glucose monitoring. So for folks who have diabetes, they can wear a little patch so that you can monitor their blood sugars from your phone. So my brother and I were able to keep track of my mom's blood sugars on our phone, so we could help her with that when we were helping her manage her diabetes.
Speaker 1
So I'm gonna go back and kind of hear more about your story and use the caregiver for your mom, and that's that's the word you you use caregiver.
Melanie Williams
I do. I know there's a lot of conversation about as a care partner caregiver just from my personal experience, I do feel like it's more of a caregiver because as the journey progresses, you are giving more and more of yourself to the disease and so it's not that the person is. Helpless, it's just that the disease has robbed them of what they're able to do, and it's up to the caregiver to give to that so they can live a better quality of life. I did feel like a caregiver, you know, I was giving a lot of my time a lot of my energy, a lot of my emotion to this disease. Not, I mean, Mom, I always loved that never wavered. But I say I was giving a lot of me to the disease to care for mom, so.
Mackenzie Jones
Thanks for explaining that and hearing how taxing it was on you, how you gave so much of yourself to the disease. How did you take care of yourself day-to-day? How did you make sure you were taking care of your mental? Health and your physical health well.
Melanie Williams
For one thing, I have an amazing family. My husband and kids were all very, very understanding when my kids were doing sports because they went to a small school, they were involved in everything. At first when Mom was in the hospital and it always seemed to happen on the weekend, of course. So first, when she was in a hospital, I'd go sit with her in the hospital all weekend and miss their games. Or maybe only get part of a game. And finally one day somebody said to me your mom is fine. She is where she needs to be, and people have eyes on her all the time. So when she's in the hospital, you go do your life. Do take a break and that was like the best advice I could have received at that time because I was thinking ohh no, she's in the hospital. I need to sit with her day and night. And hearing that because she honestly didn't remember if I was there the whole time or not, but hearing that helped me kind of detach. So using those times when she was in the hospital and I certainly didn't like it, that she was there. But it was a time for me to step back and say, OK, this is also my time to take a break. And now they've got it handled. So I would step. Back then, my family was so understanding though and amazing. There were times when I'd be teaching the hospital call or mom would call and she was in the hospital. She would go into what's called DKA, diabetic ketoacidosis, because she was forgetting how to manage her diabetes. And when that gets too extreme, they have to be hospitalized to bring those levels back down. And since I was a teacher, I couldn't just up and run to the hospital, so my husband was amazing at going and sitting with her until I could get there. And one thing about DKA and then the dimension on top of it is they really get loopy. I used to call it the drunken sailor stage because it didn't matter what you asked them. It was just the answers. Didn't make sense. Mom had no inhibition. She'd be throwing the blankets off and, you know, just it was not a a pretty sight at all. And it was not. And the situ. But my husband would very patiently and graciously go sit with her until I could get there, mostly at the beginning. We need to be there to tell the doctors what was happening. That you know, in her DKA state, along with we didn't realize it was dementia, but in her DKA state she just made no sense at all. And so, you know, you're not going to get any good answers right now if they said what brings you in here today, she'd say, well, when I was eight years old and she was like, and we're like, do you want the short version or. The long version. So she'll go back to when she was 8 and tell you everything. So and then I also it it when my kids are in high school. Kind of for myself. I decided to become a yoga instructor. Right. And even though it keeps me really busy, I try to use my yoga for my own personal healthcare too. So teaching it keeps me accountable to my students and to myself. And it's kind of my safe place and finding that time every week I still teach about four classes a week. I've also added some cycling classes. That's my joy. I really do find joy in that time and taking that time for myself, I put on yoga retreats and they are as much for me as they are for the participants. So because living a healthy lifestyle is always been important to me. That part wasn't as hard other than like I said, the time and the emotion I had to learn how. To balance that. But I did figure out how to use my yoga for me and use my cycling for me. I hike some too, just that alone time. Sometimes to process your thoughts, but it's still is very emotionally and physically. Taxing at times? Definitely.
Mackenzie Jones
How was your family involved in? Supporting you and your mom during this time.
Melanie Williams
I think sometimes my family was a nice distraction in a good way. As recently as last fall, my mom fell and broke her hip in October, and that was kind of what propelled. Her disease to the point that she passed in February, but she fell and broke her hip in October, and it was very difficult to get rehab to get care for her. So I was spending a lot of time in Billings. Out of the blue, my daughter said. Mom, I would love you to come and meet my class. She teaches up in Chestnut by Kalispell. She said I have the most amazing class this year and I would love for you to come and meet them. Can you come up? And I was thinking, oh, no, I can't. You know, Mom needs me right now. And then I thought, wait a minute. That's that's what I want to do. That's that's the good stuff and I can't do much more for my mom right now. I mean, there was nothing I could do to stop the progression. I could be there, which was emotionally hard because she was struggling so much. But just that little invite. It's like my family just kind of knows what I need when I need it. And so just that invite to go up to see her class and spend a day or two in her classroom to watch her teach. I was a teacher, so of course I am very proud of that. But to watch her teach, to be around the young kids, it it just filled my cup. And so they just. I don't know if they do it intensely or not, but they do seem to know what I need when I need it, and they have that intuitive mindset of when mom needs some. And my husband is great too. He's he's been amazing through all of this. He's the very level headed 1. And so when my emotions were all over the map, he was the one that would just keep the keel even, I guess, for us so.
Margaret Mullins
No need. Your family was such a huge support to you. I'm wondering though, what other resources you had. I'm sure you started to explore. What was available? What other people's experiences were? I'm wondering a little bit about that process that I'm thinking about. People listening to this podcast and starting on this journey. Yeah, sorts of things they might try and what was helpful to you.
Melanie Williams
Or.
Melanie Williams
I think we're always afraid of the unknown. When we don't know something about something, it scares us even more. The first thing I did when I found out she was diagnosed was to learn as much as I could about. Dementia. And that's kind of when I stumbled on the Alzheimer's Association website and also on their volunteer opportunities and as a volunteer educator, you get a lot of education on the disease, but really immersing myself and learning what was happening, why it was happening, what was going on in the brain and realizing that. Because we hang on to trying to fix it and we spend so much energy trying to fix it. And when you finally let go of that and realize, OK, I can't fix this, the brain is. Biologically and physiologically changing, and there is nothing I can do to stop that. But understanding what's happening in the disease course can help me accept it and accept where mom is. It's the learning that was a huge help. There were still many, many, many rocky parts of the journey and we have a helpline. That staffed with master level clinicians who specialize in dementia, they're available 24/7, and I remember one night I was at my wits end with Mom. I don't know if she would send down. I think it was a form of sundowning, but she could call me in a rage and rage for like 45 minutes sometimes about how angry she was about everything, which I didn't blame her. And the one thing I learned is that when somebody has a dementia, and especially someone like my mom, who's always been able to process. Information. Question then to all of a sudden have that go away. She had no way to process the stimuli from all the day from the whole day. But I think when she was in the assisted living and even the memory care, she was still thinking like a counselor. She was still trying to help everybody and figure out the social dynamics of the group. And you know who was manipulating. You and she told me one time, she said. I think that Lady just wants that man's money, but I haven't noticed she has any new clothes, so maybe he's not giving her any. So I think she spent so much time analyzing people still, but then couldn't process it. And so by the end of the day, she was just overwhelmed because she had taken in all this. Then so once I figured that out, those that unloading piece wasn't as hard for me. And sometimes what I would do this is another self-care thing. I enjoy puzzles. And so I would just sit and work on a puzzle and put my phone on speakerphone and just kind of let her go. Just let her rage, let her get angry and the puzzle. Keep me calm and keep me from feeling like I had to respond to everything, but she had that time to let everything out and then after about 45 minutes. She'd be OK and that would calm her down and she would have forgotten why she called me and I got a. Lot of my puzzle done. But one night I did call our helpline. It was like 9:00 at night and I thought, I don't know if I can keep doing this. And because it is wearing still, you know, I mean, even with my puzzle, it's still wearing. And I called her helpline. And I think for the 1st 20 minutes, I just sat and cried and I said, I'm sorry, I don't even know what's wrong. And they said that's OK, that's what we're here for. And just hearing somebody say it's OK if you need to just sit here and cry, just sit here and cry. It was. It helps so much and then to hear them say. I mean, they didn't ever overreact when I called our helpline. It wasn't like, oh, no or, you know. Ohh that's they didn't ever overreact. They just said OK. And then we walked through a plan and it just felt good to know. OK. We have a plan. We have something we can try something tangible because we can't ever predict the trajectory of this disease. They say once you know one person was dementia, you know one person was dementia. They're all so different and they all progress in the disease. So. Gently. So you might have things handled today. What we noticed was my mom. It was almost a plateau. We'd get things figured out. You know where she was emotionally, where she was physically. And she was always very physically strong and very, very mobile, which was. A little bit of. A sometimes not so fun when somebody has to mention they're not locked down yet, but. Ohh. So we'd figure out where she was. You know what? What? She made her happy. I would take her to lunch and take her to goodwill. She loved those two things. Even though she got to the point she can remember how to get out of the car or how to order. She still loved going out. She was one of those. It was funny. She liked the stimulus of being out. She liked going to lunch. She liked going to goodwill. But after about two hours. She's ready to go back. So we'd we'd be like on that plateau where that was working great for a while and then all of a sudden it was just dropped drastically. So it's not like this nice, even predictable trajectory. You just never know when it's going to throw you a curveball and all of a sudden everything you've been doing doesn't work. And so you have to quickly try something else. We always say you have to have lots of tools in your toolbox, kind of like a middle school teacher, because what's been working might not work now and you have to switch gears totally to whatever works at this point.
Marget Mullins
I thought that was an incredibly helpful answer because that stuff fact that nobody's trajectory is the same, but listening may think my mother does this, but my mother didn't do that. And understanding that you most importantly had a place to call who could listen.
Melanie Williams
Mm-hmm.
Margaret Mullins
Yeah, that's everybody has that point. I think where the things that they've used to help them deal with the difficult times might not be enough. Yeah, really great to know about the hotline number.
Melanie Williams
It's very, very helpful.
Mackenzie Jones
Melanie, another question about your mom. You talked about at the near the end of her life, she had broken her hip and that was. The beginning of the end. And what was it like for you? During that time when? It is. Leading to the end of her life. How did you process that grief, and what supports did you seek out during that time?
Melanie Williams
We had mom on Hospice, which was huge. It was very, very helpful. I think to my brother. And I would talk a lot about it. And we'd remember back to what mom? Had told us. Now I'll get emotional. But. Mom used to tell us. Don't let me get like that. And so that really helped us at the end to start to let go. Because she didn't want to be like that. She never wanted to live that way. So that was helpful in letting her go. And then I think celebrating what she did do, remembering back it was a good time to reflect, and I still do. Reflect back on all that she accomplished, and even though the last five years especially felt like 50, sometimes in her life span, it's actually such a small, small part of her life. It was still very. You know, it had a huge impact on us, but it really was a nice time to think back to all she did to what she stood for. Even it's kind of weird, but this year. On the 4th of July, we were at a family outing. We always go to a lake with my husband's family and they do a big 4th of July party and celebrate veterans. And there's a time to honor vets and for some reason. My mom came to mind. Because I just thought of everything she did to pave the way for women. And I thought she was a vet in her own way, in her own right. She did so much to say. Don't let anybody tell you you can't. And so I'm just remembering what she stood for. What she built up, she wasn't a fighter, but she showed through her words. She showed through her actions that you can do anything you want to. You can help others. You can have a huge impact. You know, and you don't have to fight to do that, but she was. I feel like she was a vet in that regard. She she did so much to stand up for, for me, for my daughter and just said, and I even feel. And I tell people this all the time now when this executive director position opened up. And they asked me to apply. If you had told me 10 years ago I was going to be executive director, I'm like, there's no way I can't do that job. But I almost felt like when it opened up, it was after mom passed. I felt like she was saying yes. You can go do it. What are you doing? Stop sitting around. You have work to do. Now go get it done. Just because that's how she operated. It's like, don't sit around and talk about what could be done. Go do it. And so I really felt like she paved that pathway too, and said don't ever say no, you know. That's don't. Just don't say no. So UM it it was emotional, but at the same time it was almost a relief at the end because she she got to the point that she was unrecognizable as our mom. You know, there was just so little that we could cling to that was still our mom. The one thing that I could do when I was in the hospital with her at night I would play. Willie Nelson and Patsy Cline and Dolly Parton. And she loved that music and that that was the closest that I got to my real mom at the end. Was playing those. So it was. And almost easy to let go at that time, knowing she never wanted to be there. So sorry, I always end up crying at some point in time.
Margaret Mullins
Well.
Margaret Mullins
Please don't be sorry, that is a. It's a very hard, but such a meaningful story and experience to have had. The fact that you took on. The position at the Alzheimer's Association is such a, you know, your comparison to what your mom would have wanted you to do, add so much significance to your. Position there and I think about how. How can something that is so incredibly hard and difficult be turned around for good, which is that variance is a really powerful one and the amount of good you can do for other people. I can just imagine would be exactly what she would have wanted.
Melanie Williams
Yeah. Yeah. And it's so rewarding. I mean, I can't help her, but I can help so many. More people now.
Mackenzie Jones
Listening to you share the story about. The impact your mom made on so many people's lives I before we switch over to asking you. Professional questions, I wanted to know how. How did she inspire you? If you look back, what did? What did she do or? In what ways was most inspirational for you as a person and throughout your life?
Melanie Williams
Mom saw the good in everybody and I think even at the university level, when a student was struggling. Or. You know, looking like they might not make it. Mom found the positive. So she found something to build on. Some piece of them that she knew could do it. And then she built on that. And she seemed to do that with everybody. I mean, we all have people in our lives that kind of drive us crazy. I don't think my mom really did. There were a few people, maybe, but UM. See, she just always saw hope in people. She always saw potential in people. And I think even in my teaching I was influenced by that. I know my daughter is and my daughter's actually going to school to become a school counselor, just like my mom started too. She just had a way of seeing the good and even if people had. You know some of those issues about them that are kind of hard socially for us to accept. Sometimes Mom could somehow see through that. And see what potential there was in that person, to the point that when she had her dementia, I didn't know it, but I used to run by your house in the morning to kind of. Check on her and her doors would be wide open and you know nothing's locked. Doors are wide open and one time I said, mom, I said, I wonder if you should lock your doors at night. And she said I have never been scared of people all my life. I'm not going to be now. And she really was at. She was not scared of people. She loved people. She loved who they were. And she loves their souls. And so I think that has inspired me as much as anything is just to always try to find the good, always try to find the positive and lift that up in people and then watching them blossom from that. And like I said, the people that reached out when she passed and told me how they impacted her life. Was just incredible. I mean stories I had never heard of, ways that she had helped people overcome and succeed was very impactful. And man, if I can leave that legacy, I would be thrilled.
Mackenzie Jones
Thank you. Melanie. Is there anything right now that stands out that you want to share more about your mom or your personal experience and being her caregiver? Yeah.
Melanie Williams
I always tell people I had several moms and so a no wheat grieve the person that we lost that we knew for most of our life. But what I tried to do in each stage was learn to love that mom and whatever, you know, stage she was in and I loved her little quips. If she when I would try to talk to her about. How to manage your diabetes a little better? Or maybe drink more water? She when she was done talking, she'd always say well, we sure are complicated creatures, aren't we? So I actually named my I walk to end Alzheimer's team. That because you know that was the end of the conversation when she said that the conversation was over. So. I just learned to appreciate her quips when she broke her hip, her her mind. It definitely affects the mind in unbelievable ways, and she had recognized me up until then, but like I said, I stayed with her quite a bit at the hospital just to help out, and she looked at me one night and she said, you sure remind me of my daughter and you know. It was kind of sobering, but at the same time I thought, oh, I'm gonna use this. I said, oh, what was she like to try to get some goods out of my mom? She said well, she was kind of bossy and she always thought she was the queen. I don't know that that's really what she thought most of my life. She didn't tell me she did. And I don't know that I was that bossy. But anyway, just, you know, try to embrace who she was in that moment, I think help me as much as anything.
Margaret Mullins
I would just like you to give us a little description of your work with the Alzheimer's Association and what they do for people who are dealing with Alzheimer's and for their families.
Melanie Williams
So we have several areas that we work in. The one that I started in is programs, education and support. So we're really trying to meet caregivers where they're at as well as people living with dementia and provide resources for where they're at in the journey and then also provide resources for the long term because there are some decisions you should start making early. On about the long term course of the disease as well as you know the Today the here and now and so educating people on some of the things they should be thinking about maybe long term and then also just today I'm getting ready to do a workshop and it's called empowering the caregiver and so really bringing them tools and resources. That will help make this journey less stressful, maybe more enjoyable. We talk about compassionate communication. We talk about what might be triggering behaviors and how that caregivers react to those differently. So really trying to bring ality of life. I think basically and knowledge about the disease to them as much as possible. We are also working with the public health far as risk reduction and looking at what? People can do as far as lifestyle changes to reduce their risk of developing Alzheimer's or dementia. Then there are some treatments right now available in the United States. They're not available in Montana yet, but we do a lot with research. The Alzheimer's Association has funded millions of dollars of research, and the research. It's fascinating. Right now, I went to AIC in Philadelphia in July and there were over 8000. In attendance and most of them are scientists researching this area from all over the world, and just even to walk down the halls and listen to the excitement in their voices as they talk about their research. Is mind boggling and it's so inspiring and I think some of the research that's directly impacting Montana right now is research on a new blood test at the moment. You can't get diagnosed with Alzheimer's in Montana. You have to drive to Spokane because we don't have a nuclear pharmacy and that's. The nuclear compound that's needed for the PET scan has only a 2 hour shelf life, so logistically it just doesn't work to bring it into Montana. So people need to drive to Spokane or another major help. Uh facility or health institution. So this blood test, it's now proving 90% accuracy in preliminary research. Also, like my mom, she could fake her way through the mini cog, uh pre screening and through the Mocha Pre screening because she was fairly smart and so she always looked average. And even though we told the Doctor well, she's never been average, she's still scored average and she could kind of fake it so the blood test is as you know, you can't really argue much with blood tests. I think that will change the landscape in Montana, so we're looking forward. To that and then, like I said, there are some treatments available. They are infusion right now. But just like cancer treatment, we're at the very beginning stages and it might seem and feel a little bit barbaric right now. So that's where we're working with public health and with the bold grants, which stands for building our largest dementia infrastructure. To really talk about lifestyle changes and how you can prevent they, there's actually research right now that is showing that you can reduce your risk of developing dementia or slow the progression of it by 40%. Through a healthy lifestyle and in my mind, that supersedes any treatment that's out there. So we do a lot in that arena. We work a lot on policy, both at the state and national level. We are purple, we're bipartisan, so we work on both sides of the aisle, working towards more support for caregivers, working towards more. Money for research and looking at more solutions to how we can support people in the home so that they can maybe stay at home longer, putting more support in place in the workplace. This is definitely affecting the workplace. People are leaving jobs early. They're having to cut back on hours because the average caregiver gives about 30 hours a week to this disease, and if they're working full time, that's exhausting. So we're trying to work with corporations and with our legislature to help them realize that caregivers of those with dementia are having to change jobs. Retire early, cut back on hours. Just to be a dementia caregiver because it is very challenging and then just a lot of awareness work, letting people know we're here, where to find resources, where to go, even questions to ask their doctor if they're not sure where to start, we can give them questions to ask their doctors to start the conversation. So those are the main areas that we focus on and what we're growing in Montana.
Margaret Mullins
That's great information. I do have one question just to back up. I had heard a lot about the research and the blood test. And can you tell us what the blood test actually detects? Yeah.
Melanie Williams
So that's one thing that's unfortunate is a lot of the diagnostic tools, I guess you could say that are being looked at right now are only for Alzheimer's. So the blood test and even the spinal fluid tests. Are picking up on those hallmarks of Alzheimer's that we see in the brain. So the plaques and tangles that the Tau tangles and the plaques that we see in the brain, they're finding ways to find those. I don't know if they see them in that in that same form, but they're able to detect them in blood. Now. Earlier they say that some of those changes in our brain. Happening 20 years before we ever have the first symptoms of Alzheimer's, and so if we can start tracking that in blood tests early on, you know, maybe through early diagnosis, people will change their lifestyle or we can start doing things earlier. So the disease doesn't progress as quickly. And I call it right now, living well with dementia. What can we put in place? So if people do have dementia, maybe they stay in those early stages, but they can live well, like that for a while and they just build in memory aids that will help them with some of those day-to-day activities. So that's the other dimensions. There's Lewy body, there's frontal temporal, there's vascular. Parkinson's is considered a dementia. That you know, many of those might have testing that could help them determine what they think it might be, but it's honestly right now a big guessing game for physicians other than if they actually go get the PET scan, it's. And I've talked to many, many physicians who say this, they they do a lot of testing to rule out what it's not. And then when they've ruled out everything, it's not. It usually means it's a dementia, but it's very difficult for them to tell you you have this, it will look like this. It's going to progress like this. And here's what we're going to do.
Melanie Williams and Margaret Mullins
That still so vague and arbitrary right now in this field, one of the things that you mentioned is if we can get some indication that someone is inclined towards Alzheimer's or those plaques are there, that healthy habits are a big help, I wonder if you could talk a little bit more about healthy habits for the brain. What kind of habits? Best support brain health?
Melanie Williams
So sleep is a big one, challenging your brain. My mom's doctor used to tell her. Audrey, what are you doing to challenge your brain? And she'd say, ohh, I'm still working. I'm still counseling people and he'd say, but you could counsel in your sleep. You can't do something that comes easy to you. He'd say. What are you doing to challenge your brain? And she'd get a little offended. Then she'd say. Well, we sure are complicated. Features, aren't we? That would be the end of that conversation. So it's really about something that kind of makes your brain hurt. And I tell people that I say when you reach that point of frustration, like whether it's technology or working on a game or a puzzle, that's actually a good thing. That's like weight training for your brain. It's like when you lift weights and you get to that point of muscle fatigue or muscle failure where you're like, oh, I can't do it. Another one. Please, that's when our brain is. It's working. Then because we're we're challenging it. So people who do word puzzles every day may or may not be doing something good for their brain. Because if they're good at word puzzles and they enjoy it, it's probably not taxing their brain in the right way. Also, staying in school, so learning something new, they say learning a second language. Is one of the best things for your brain and actually people who are bilingual or trilingual or in India, people who know maybe up to 50 languages, they have found that their brains are more resilient. Also eating clean food, which we know for heart disease, we know for keeping blood pressure down. And physical exercise. I can't go into all the chemicals in the brain, but I do know that exercise increases those. Feel good? Hormones. I'll call them. The chemical release in the brain from exercise is also very beneficial for the brain. Socializing. Socializing is huge. And we learned that during COVID that people with dementia during COVID declined significantly and they think it's. Because there wasn't much social interaction and I heard one doctor explain it as when we're socializing with people more in person, probably. But we're reading all sorts of body language, so it's not just about listening to words. We're reading their face. We're reading their facial cues. We're reading their body language. There's a lot that the brain is taking in. And analyzing and dissecting and processing when we're socializing. And so it doesn't have to be huge. Parties, but just getting out and visiting. And for that reason, the Alzheimer's Association is encouraging early stage social engagement programs or memory cafes to get out. And with people that are in the similar journey and socialize in a safe space, keeping your blood pressure down, managing your diabetes. There's been a little bit of a misunderstanding lately saying that Alzheimer's is type 3 diabetes and that's not something that the Alzheimer's Association supports. Nor does the CDC. So that's kind of a misnomer that we hope to. To try to squelch because it oversimplifies Alzheimer's and it also implies that diabetes is a form of dementia, which it's not, they're not one and the same and shouldn't be treated one and the same.
Margaret Mullins
That's good clarification to have.
Mackenzie Jones
We are within the chronic disease prevention Health Promotion Bureau and you just expressed so many healthy habits that are good. For the prevention of lots of chronic diseases like diabetes or cardiovascular disease, arthritis, cancer and so thinking about that, our Bureau has a new program through the bold grant, which really focuses on prevention of. Alzheimer's and other dementias. You work very closely with Kyle Rock, who is here too. Right. So Kayla, since you're the program manager, can you explain more about what is the role of grant and what do you focus on?
Kyla Rock
Melanie and I have had we've spent some windshield time together and we just we brainstormed constantly about our pipe dreams for what we would love things to look like in the state of Montana to address Alzheimer's disease and. The dementia soon, as you can tell, it's very enjoyable. She's very fun to talk to. One of the things I was thinking of as money was talking about learning new skills and activating different parts of the brain. The other thing that's been found to be really beneficial is participating in Tai Chi. Again, you're you're activating those different parts of learning. You know the different movements. This this different ways that you're engaging your brain can really be really beneficial as well. I also just wanted to mention some of the other. There's so much amazing research like Melanie was talking about that's happening. And there's also some really great research that's actually happening in our back doors. In Montana, there's a researcher at MSU who's looking at loneliness and how that can impact increased risk for developing dementia and and a lot of other related things. Is McKenzie talked about earlier as well. Also through you, if there's somebody who's looking at social determinants of health, so socioeconomic status. Education level girl versus Urban, I mean all of those different kinds things can impact and and what does that look like long term for folks? So the bold grant really is like you said, Mackenzie is really taking things from the public health approach and. What? Trying to ensure that we're getting ahead of the game versus reactionary, so how do we how do we address some of these things earlier? And again engaging in those activities that Melanie just went over that are that are healthy for your brain are healthy for everything else, right? What's good for your head is good for your heart. It's good for your body and that type of thing. So that really is a focus. The bold Gray is it's a five year grant cycle and we are at the end of our first year and the first year really focuses on building their sustaining a coalition. So ensuring that we've got a group of people. That. Can speak to all the various areas that we've discussed and that Melanie story has illustrated to help address. And create a plan for the state and Montana is actually ahead of the game in that aspect because they had a coalition that was formed about 10 years ago. No, but they were looking at at some of these issues years ago. So there's been a group of people that have been in place already doing some work within Montana, which has been really great. So we've had a good, a great and enthusiastic group of people to work with so far to kind of get the ball rolling. So really with my job has been recently is is working with that. So if we did under the umbrella of that corrosion, create a bolstering committee that does focus on. The goals and tasks of the grant specifically, and so we're talking about a variety of different things right now looking at maybe doing some assets and resource mapping to get a picture of what is happening throughout the state. Already every meeting I go to every September is Alzheimer's. The walk to end. Alzheimer's month and so I've been attending those walks with with Melanie throughout the day that she was the I think she referenced. William. And the conversations you have with people are just and it's amazing the enthusiasm, the passion and how it does impact it impacts everybody. I was last night just at a a social event with some friends doing some crafting at a place and the lady who was helping us talked about her experience with her. One of her in-laws right now that's experiencing. There's also a professional caregiver and an assisted living, and so it really is impacting everybody. And so making sure that we. Are that we've got a variety of voices at the table to to then move forward with the the next phase of the grant would be creating a state plan. CDC has worked very closely with the Alzheimer's Association to create some pathways. They've created the healthy Brain initiative road map series that kind of has some different. Domains and focuses to help move the work.
Mackenzie Jones
My word. So you mentioned the walks and. Is this the same thing as the Alzheimer's Association? Walk to end Alzheimer's. And what is that? What are these walks look like in Montana? How can you participate? What's the benefit?
Kyla Rock
So if I may pass this back to Melanie in just a minute, but I will just check what my experience people are able to come out. You're able to create teams and and really it's a fundraising event to further the research and support and. I care, really. I've gotta talk about the the one of the really cool things they do at the walk. And then if no one wants to specify and maybe get a little more technical in detail on what the block looks like and every block they do, this premise garden and it's really it's kind of a neat, it's a really neat event. So they've got these pinwheel flowers that they have. Out and each color represents a different aspect or impact of Alzheimer's disease. So they've got a blue flower that that represents. Those living with dementia and purple flowers, those that have been lost to Alzheimer's disease or other dementias. So they've got orange, which is to support. But the the research and the and the work in this field and then yellow is to celebrate caregivers and recognize the impact on the loved ones and the people carrying profiles. And then they do kind of a new old thing where they've got people that that walk up holding a flower and then they also add a white flower, which is. The idea and the hope that one day. There will be a world without it, and that's usually held by a child. And so to say that, look, one of these days, this kid named May be able to grow up and and when they leave the world, it's not going to be a world with this disease. So it's really kind of a neat. It's a cool event and there's, you know, vendors and DJ's. And I don't know if Melanie. This weather. Other things you'd like to add from the Alzheimer's Association perspective, but they're enjoyable.
Melanie Williams
Yeah, it's kind of our chance to be full mission to show everybody what we're all about from our research to our advocacy to programs to people we partner with and then release, celebrate and honor those that are on this journey that have lost somebody I cry. I think at every single. One, but it's it's just very moving and to see the people impacted and to hear the stories is incredible. And then the walk is more just a time to think about and honor those that are on this journey and bring more awareness and respect the people that are on this journey, whether they're living with it or. Caregiving, and it is our biggest fundraiser. We have six in Montana. We have Great Falls Billings, Helena. And. Bozeman, Kalispell, and Missoula. And it's also so that we can bring our resources free to caregivers. We know the financial burden. It's greater than any other caregiver. There are statistics that show that more out of pocket money is spent caregiving for somebody with dementia than any other caregiver. And so we don't want. Finances to be in the way of somebody getting.
Margaret Mullins
Resources. So the Alzheimer's Association is doing a lot of great work. We know that you were accessing the 24/7 hotline at one point in your experience. Can you tell us what other resources are available that the listeners could? What up?
Melanie Williams
I'll start with the Alzheimer's Association and then I'll dip my toe into what Kayla said about the other resources. So we have two tools that I really like, especially for people living in rural Montana, because you can do them from home. 1 is called the ALS Navigator, a LZ navigator. It's an online care plan program. That can that will ask you a few questions and then actually prepare a plan for you. So if so, if you're having trouble getting somebody to shower or if you're worried about guns in the home or you're worried about driving in dementia or taking medications, you can go to this ALS navigator and anybody can use it. It's free of charge. Yes. And you can answer a few questions and it will create a care plan for you and give you resources of places that you can go. So for example in Montana. Ohh, and there's alcohol too. In Montana, I think the three calls I get the most often are gun related. You know, what do we do about guns in the home? Driving is a big one in Montana and then alcohol. Abuse or use. I'm not sure what happens when people develop dementia. I'm not sure if they're self medicating. Some of the anxiety or if they've just forgotten that they were. If they've already been drinking and they decide to start drinking, my mom used to tell us she was having one glass and we're like well. One glass, how often does all of those issues that people don't like to talk about? And I was one of those. It's like, oh, this is so embarrassing. My mom never drank in her life and all of a sudden, we're running into this. And you, you think I I've gotta hide that I can't tell anybody. But then once you understand the disease, you realize this is a symptom of the disease or the driving. He's understand that you're taking away their right of passage in Montana, which is driving, you know, that was that's everybody's right of passage. And it's something that we are all very independent and stubborn about. And guns, too. In Montana, that's a a big is. Thank you. So being open about these things, talking about them and then using this all's navigator can be very helpful. The other one that's very helpful is called ALS connected. So it's a LZ connected and it's more of a discussion board. So it's not a virtual support group, but. During COVID I went on there and I typed in, you know, what are people doing to stay in touch with their loved ones in assisted? Savings and there are lots of ideas and one thing I started doing based on that was I would do Walmart orders for my mom and a Walmart. Order was me calling mom and saying, hey, mom, you know, would you like some snacks or would you like something special from Walmart? I'll order it for you. And then they would deliver it to her assisted living. And to her, it was like Christmas. You know, getting this little Walmart order was amazing. And I'd always throw in a little extra something like maybe some nail Polish or a little craft for the holidays, or I would throw in something extra for her, along with some treats and snacks which we found out after COVID. She really wasn't out of stuff because we found cupboard loads of what she asked for, but anyway it gave her something to do, but what was really interesting. Because as she progressed in the disease and moved into memory care, I could still use that when she'd get really, really upset, I'd say, hey, mom, do you want a Walmart order and she go? Ohh yes, that would be so great. And it never did. Because I knew she'd forget as soon as we got off the phone, but just the memory of what the Walmart orders meant to her would calm her down. So, and I got that off the alls connected discussion board. So there's that resource. And then like Kayla said, our AAA area agencies on aging across Montana are a great resource for local community. Even our extension agents MSU extension is working in this area. Starting to work in this area and they can be a huge resource and especially with the financial part, the estate planning which is a big deal in Montana reaching out to your doctor, it doesn't have to be a neurologist to start with. You can go to your doctor and say I want to have this. I think that's a good resource and so many people think, well, I have to wait for a neurologist. We'll know you can go to your doctor and say I'm concerned today. And I want to talk about this today. Like Kayla said, there's private agencies all over the state. They're doing amazing work. And that's what we're trying to pull together are. All these resources that we're finding out are available.
Kyla Rock
And then yes, programming with MSU extension, they're doing some caregiver retreats that people are really enjoying, as well as some of the memory cafes. I'm not sure how long those are going to continue, but that is something that is in that is occurring currently as well as a food box program which is. A willing way to kind of provide some respite because as we've been talking about the the significant impact on. When it comes to caregiving and the need for residents, some of that self-care, one of the ideas is that you can provide a meal and that eliminates kind of 1 little stressor. That can be a thing for folks. So that's something that's happening as well. It's also, again, a lot of private agencies doing this work, home, healthcare. Uh. You, you know, Melanie talked about, I think I failed to add kind of some of my personal experience and how I got involved. And when I started in Human Services, I started as a CNA and doing some home healthcare and working in assisted living and doing that work. And I actually was able to help care for two of my friends, grandparents who had one had Parkinson's and one had had Alzheimer's disease. So that was kind of a a a neat. I I mean, I loved the work. It's and it's hard. And having those conversations with the loved ones or the the spouse, you know, it was just so she every once in a while would just say it's just so hard. I'm just losing my best friend every day. And so for her to have the opportunity to kind of take a step away and go have. Lunch with friends. It was really a great. Thing to be able to do. So again, those home health agencies can be really beneficial the other. Piece is the lifespan respite Grant which is offered through DPHS and that can be applied for online and there's some funding. One of the most difficult things with securing any sort of respite for folks is finding a person so that can be really hard and there's not necessarily through the lifespan respite. Like there, there isn't necessarily an answer for for that piece there, but there is some funding, so hopefully people have a neighbor or family member or somebody who can maybe jump in and assist. But there is some funding where they can access. And through the lifespan restaurant.
Margaret Mullins
I have a question that this might be from Melanie or either of you. How many memory care facilities do we actually have in Montana?
Melanie Williams
I am not totally sure memory cares are, you know, private. More for profits. They're a little bit harder to track. Nursing homes or maybe a little bit easier to track, although they are closing in Montana, we just lost two more. I think in the last six months we're down, we were down to 100 beds about a year ago. So I also have a staff person in Missoula who is at a facility and they showed him a wing of beds and said, but we don't have staff and so they can't open up that wing. I think to Kyle and I, that's why this whole idea of getting in front of the disease and working on the prevention piece and then also for. Me if you are diagnosed, how can you stay in those earlier stages longer? It's so critical because those facilities are struggling right now and I don't know what the answer is and so maybe saving those for the more severe cases, the very late stages and hopefully take the burden off of them so that they are focused on those who really need it. Right now everybody does, but I think it's because we don't have anything in place. It's like we I talked, we talked about this, so. People in the dementia journey think they can do it and they do it as long as they can. And then there's that breaking point where all of a sudden they're like, I can't do this another day and all of a sudden they want or need a place right then at that moment, because it's crisis moment, you know, it's it's gotten out of their control. And so how do we help them along the way? So that maybe they have things in place before then and they're not reaching that moment of crisis where all of a sudden it's like, oh, my goodness, I I can't do this another day. And then there's nothing available. How do we put more support in place throughout the entire journey to help them? So they don't burn out or they have more tools and resources and they know what to do to help throughout the journey or just keep people in the earlier stages longer so that we're not getting to that point where we're in a crisis point in Montana right now, there are no beds available. Almost every memory care and nursing home person I've talked to lately said we're.
Kyla Rock
And those are tracked as far as some of that, the quality assurance kind of that happens as far as the state isn't concerned does happen through senior long Term care division. And so they do kind of track how many, yeah and I but as far as a specific number, I'm not I'm not sure either, but one of the things I also. And I wanted to piggyback off of what Melanie was talking about with what we can do to kind of get in front as well as to us kind of stave off some of that progression. So folks are staying in the earlier stages, those healthy brain. Things to do, 10 things to do to keep your brain healthy can also help when people do already have the disease, I mean. We were at. A workshop in Butte and the springs has a memory. Care Center at their facility and one of the things they were talking about doing is they really try to make sure that they get some physical activity for their residents during the day because it can help alleviate some of those. What Melanie talked about earlier, the Sundowning and some of those things that can happen at night for folks that can really help, again healthy diets and things like that. There's other research to show that that can. Have a significant impact on how your brain functions. Again, whether you have the disease or not. And so those are those are important factors and things to keep in mind as well. But yeah, that is those the beds are tough and then if they do find a bed, the other piece is that financial impact on the family, they're extremely expensive, they're not covered by. Insurance. And so that's that's the other really difficult piece is the financial burden that the families kind of. You.
Mackenzie Jones
So I have a I have a couple of follow up questions about the resources that were mentioned. The 1st I before we met today. I went through the ALZnavigator just to see what it was like and so a ton of resources are provided I. Was talking with Kayla earlier about how. Uh, talking about end of life care and planning for that is really uncomfortable for many people and I I found that there's a ton of legal. Resources on how to create A will how to create power of attorney. Anything that you need help with. I found that on the old navigator and one of the questions that seem to come up multiple times when you were putting in what you needed or what information you needed was if you or a loved one. Identifies as LGBTQ, and I wondered why is this in information important to know. When gathering resources.
Melanie Williams
I'm not sure what specific questions you were being asked, but we are putting a lot of focus on the LGBTQ plus community. There's a lot of fear of seeking medical help, of seeking support, of even reaching out. But I know as an association, that's definitely. First and foremost on our minds is that lack of social support that most people have and being afraid to reach out. For help.
Kyla Rock
I just wanted to add just a couple of things. As we all know, there are marginalized populations and LGBT Q folks are certainly part of that. So I think it is really important to to make that we are making a concerted effort to address some of those needs within this population related to Alzheimer's and dementia, because there is a fear. And it's still happening today because people are living as who they are. And as we all want the freedom to do. And so it's it's important that we are making concerted efforts to make sure that we are meeting the needs of these populations.
Mackenzie Jones
Thanks Kyla. Also on the website there are numerous amounts of information web pages in addition to the old navigator. How would you recommend? People navigate the website if they have an idea of what they want, but don't know what it's called or where to go.
Melanie Williams
I would recommend they reach out to the help line first. What I love about the help line is they'll also send some hands on material in the mail so they can direct them more specifically, but then also give them additional brochures or Flyers or information specific to what they're looking for.
Mackenzie Jones
Thanks, Melanie. And for listeners, it's a 24/7 helpline. The number is 800-272-3900. Is there any other information regarding the helpline that Melania or Kyla you want to talk about?
Melanie Williams
I try to encourage first responders to use it. I encourage. Staff at assisted living facilities to use it. Neighbors, it's not just restricted to the person living with the one they're caring for. Anybody can reach out.
Kyla Rock
As well as, I just wanted to add also been people who have called in about themselves. Yeah, about some, you know. Certainly another. Like when they say yes for.
Melanie Williams
Mm-hmm.
Kyla Rock
Anybody and everybody to call and have those conversations and ask questions if they're not comfortable doing that with, you know somebody they know this, this is a great place to go.
Mackenzie Jones
So kind of going back, I am really interested in what compassionate communication looks like and how that plays a role in supporting a person with Alzheimer.
Melanie Williams
When we communicate with somebody with Alzheimer's, we always say feelings over facts, so we're not there to correct them. If they say it's Christmas tomorrow, it's not our job to tell them no. It's July 25th. It's just to enter their into their reality and maybe discover why they're talking about Christmas or maybe Christmas brings good memories. For them, and you know, it's something that makes them feel good. So really entering into their reality, trying not to argue with them or tell them they're wrong. Their brain really can't find that information anymore. There's cellular death in the brain that has taken place because of dementia. And the neurons are not able to synapse and get that correct information into their brain. If they're going outside in the middle of winter and they're dressed like summer, of course we're not just going to say, ohh, go ahead and go, but we're going to find creative ways to say, you know, I think I'm going to grab a coat. Would you like a coat, too? It seems like it might be a little chilly and, you know, try to enter into the situation with them. It's all about compassion. It's all about coming from a place of love, not correcting, not judging, meeting them where they're at. When my mom thought that I looked like her daughter, I went with it, for one thing, when I told my mom would look at me sometimes at the end and she'd say now, who are you? And when I told her I was her daughter, she would just burst into tears. It devastated her to not recognize her daughter, and so I tried to avoid that because I didn't want her last month to be spent, you know, devastated that she didn't recognize me. So I just say, well, who do you think I am? And then I'd go with whatever she. Said so, it's really about their quality of life and also we have found that we can deescalate behavior starting with communication sometimes. You know, if you argue with them, they don't know how to argue back or they don't know how to process that. So then they start acting out and they might punch or they might hit. My mom had never hit anybody in her life before. But she showed up one night for dinner without pants on at the assisted living. And I'm not sure how she was approached, but however she was approached, she didn't like. So when they told her to put some pants on, she hit the person. Because she would have never hit somebody before, but she didn't know how to respond to that situation. And so she reacted with the behavior. And so coming at it, you really have to know the person, though, and know how they like to communicate and know a little bit about them, to really come back to that point of communicating in a way that will. Deaf glade behaviors de escalate stress and anxiety and keep them calm because ultimately at this point in time, that's what it's all about. It's quality of life. Life they will never come back to that lucid point. There might be lucid moments, but they're not going to get their mind back. We don't have anything right now that will bring their mind back. And so we have to meet them where they're at and communicate from a place of compassion and love.
Margaret Mullins
I hear how important it is to have. In the face of all of this, and. That the effect it must have on you, the importance of having some levity and moments like you experienced with your loved ones, that that's really important to be able to fit yourself into their scenario and be able to go with it. And I have heard. That from other people. As well, and I feel like. That's one of the most important. Now skills, we can learn more. Yeah, 8 navigate someone with Alzheimer's.
Melanie Williams
It can backfire though. One time I sent my mom flowers just because, so she thought it was her birthday. So she was mad that nobody remembered. It was her birthday. Definitely about entering their world and putting our ego aside. I learned that that was one of the biggest things I learned with dementia is I had to put my own ego aside when we went out to eat. I went shopping. You know, it wasn't about how we looked anymore. It was about moms experience and making that the best it could be, and she might address goofy compared to how she used to dress, and her hair might not have been as calmed and nice as it used to be. But you know what she was having the time of her life, and that's all that mattered to me. And I didn't get hung up on her hair. I wasn't one of those that was like, we can't go out in public looking like this. I'm like, you know what? We're having a good time. That's all that matters right now.
Margaret Mullins
Absolutely. What else did we not ask that you wanted to share?
Kyka Rock
There are some. Legal clinics that happen for BPHS and then there's also helping people walk through that the end of life planning PLA's. You know, some of that, that type of work. And again, MSU extension is really is certainly great you're source. They also have a lot of information. They publish things called Mont Guides and there's a variety of of information and specific topics that they have included on those as well.
Margaret Mullins
Also, for listeners, we will have a list of these resources on our website for talking health in the 406, so we'll include ones we know about and all the ones that you've mentioned here today.
Mackenzie Jones
Thank you for listening to the talking health and the 406 podcast where we are one community under the Big Sky. We are your hosts, Mackenzie Jones and Margaret Mullins. We'd like to thank our guests, Melanie Williams and Kayla Rock for sharing their story and providing resources to support caregivers and individuals with Alzheimer's disease and other dementias. If you would like more information on what you. Today, visit our website at talkinghealthinthe406.mt.gov if you haven't already, Please remember to rate, review and subscribe with that, I'll closeout with the wise words of Melanie's mom. We sure are complicated creatures, aren't we?