This #ActivitiesStrong Executive Edition discussion is led by Charles De Vilmorin and Karen Love, Executive Director at Dementia Action Alliance. We hear from two individuals living with dementia who describe their experiences and how COVID-19 especially impacts people living with dementia and how they are managing:
Experiencing early signs and symptoms
Getting a diagnosis and moving on to live proactively
Finding purpose and meaning in life
COVID-19 and learning how to manage this strange new world
Charles: Welcome everyone, it’s a deep pleasure today to welcome Karen Love, the executive director of the Dementia Action Alliance to today’s Activities Strong webinar. As some of you might remember, she came back in October and it was one of our most well-received webinars. So we’re very excited to have you back Karen. And so today the title of a discussion is going to be living with dementia during COVID-19, and there’s no better way to learn things from people actually going through dementia. So it is an honor to have both Mike and Terry. Mike, I want to personally thank you for being here with us today and welcome to today’s presentation. Same thing for you, Terry, thank you very much for being with us. It is an honor to have you both. And Karen, thank you for facilitating this. About today’s webinar, it is an executive edition and that we’re doing in partnership with our media partner, Bridge the Gap. Back in December, we started doing a special track towards executives in the senior living industry, as a way to elevate the discussion about resident engagement and person centered care. The idea being that everybody is welcome. And specifically we want to make sure that we’re inviting the executives to the conversations. So if you are one of these executives, such as an administrator, an executive director, or somebody from a corporate position in senior living, we want to pause and also thank you for attending our webinars because it means that you and your organization values the work of activity and life enrichment professionals. As I mentioned previously, Karen is the executive director from the Dementia Action Alliance. My name, as I mentioned before, is Charles De Vilmorin and I strongly believe that old people are cool and obviously that our industry is activity strong. Talking about activities strong, this platform was launched by Linked Senior as a way to acknowledge and educate and empower activity and life enrichment professionals. Some of you might be familiar also with our work that we launched five years ago now, the old people are cool campaign, as a way to celebrate everybody in society and also make sure that we all dignify and respect the older adult. In terms of background, just so that everybody is aware, Linked Senior is a resident engagement platform for senior living. We are the only platform in the market that has their work published in a peer reviewed journal, where we have been shown to increase quality of life, clinical outcomes, but also financial outcomes for organization. And if you’re interested in a conversation about Linked Senior please feel free to contact us.
About these webinars, we launched them three years ago because we understand that team members in assisted living, independent living, assisted living memory care and nursing homes often have trouble accessing education. And obviously with COVID and the pandemic that we’ve been going through since March 2020, this has been a huge need, which we recognize in doubling the amount of education we provide. As you can see, we’ve been blessed with fantastic speakers, including today. And this page is also an invitation for all of you to consider the fact that a lot of our speakers are there because of a request or a suggestion. So if you know of somebody that we should invite or an idea that we haven’t covered yet, please feel free to reach out and suggest that to us. Now, as we continue building the activity strong platform, we have launched a partnership with Time Slips that started late January, the same week as activity professional week. And we have been building with Time Slip, five weeks of creative care that you can implement and enjoy with your team members and your residents in your community, and some of you have been amazing at implementing these. So if you don’t know what I’m talking about, or if you want a refresher of what is going on, I see that Megan has shared the link in the chat. Please feel free to use some of it or all of it. It is a free resource for you to use in your community. Now this creative care five week period is about to end in I believe about 10 days and we will soon be highlighting some of the work that you have done, you the audience, because we’ve had amazing stories. And so if you want a chance at being highlighted, please take a second to email us either a picture, a video, or even if a story, and we will make sure to review it and possibly highlight a number of these stories. So please, again the email is from Megan here and she’s also pasted it in the chat, feel free to reach out anytime and share your stories. And the last thing I’d like to share is we had been doing a Facebook live event every week on Monday at 1:00 PM to give a recommendation or ideas about the coming week. And so the next one is going to be on Monday, February 22nd at 1:00 PM Eastern. So head over to our Facebook group and we will be having one session and believe it or not, I will make an appearance with Andrew from Time Slip and him and I will be sharing more about this coming week. So with that, a little bit of background on who we are and this current program that we have. And so it’s again with immense pleasure that we welcome the Dementia Action Alliance and Karen’s work. So Karen, I’m going to let you ask me to move the slide and I’m going to turn off my video so that all of the attention is sent your way. Thank you, Karen.
Karen: Hello, and thank you. We are delighted to be here today with you all and I’m just enjoying all of the different written chats. It looks like most of the country is freezing, so it’s good you can all get together safely beyond that, for me to watch this zoom. So I just wanted to give a little context so that you know where I am coming from. I’m a gerontologist and I’ve worked in the field you mentioned support and care now for 40 years. And during that time I learned a lot of things, and one of the most significant is that if we help enable and empower people early on so that they can be proactive, it really does impact their symptoms as time goes on. So while we’re creating a better society in which to live with dementia, we specifically provide hope and help to individuals and families with information about how to live proactively. So we believe that dementia symptoms need to be better understood and accommodated as a disability. Cause as soon as you think of it as a disability, you think, oh well what supports does that individual need? It automatically moves you into a strength-based mindset, that the symptoms are supported and that they are fully included in everything we believe in the disability world’s mantra, nothing about us without us. And to that end, our nonprofit organization has the national advisory board and they shape and inform absolutely everything that we do. So there are a lot of things that are still not where they need to be. And stigma and misperceptions, the myths about living with dementia such as; people can’t learn new things- well with advanced dementia symptoms, people aren’t going to be learning calculus, but very much so especially in the beginning, it’s really healthy to stimulate their brain. We provide a platform for voices, a way to connect people and look proactively, identify beneficial technology, and advocate person in relationships on your practices. So this is Richard Taylor, he was one of the first people in the United States who spoke up. He was living with Alzheimer’s disease and unfortunately died of throat cancer, but he said help enable me not further disable me. And that is a really important rallying cry. He standing there with his granddaughter, who always brought him joy and enabled him. So think about if no combinations had ever been made or the astrophysicist Stephen Hawking, here is a picture of him toward the end of his life. And all he physically could do was move one finger and blow. He had the ability to use straws to help manipulate things. But science just kept coming up with ways that could accommodate him so that he could continue to function at his highest level. We need to take that mindset and think about how we support people living with dementia and accommodate some of their changing abilities. Just a little bit of, I know it’s busy and I don’t expect you to read it all, but just gives you a little bit of a graphic that there are lots of things that our organization does to connect and have people linked together. And now without any further ado, I want to get into a wonderful conversation with Terry and Mike. Both of them are on our national advisory board and are very familiar and excellent speakers we’ll learn about. So at first question, Terry, could you briefly talk about what symptoms you were experiencing that led you to seek a diagnosis?
Terry: Thank you. My first symptoms were, the very first thing was passwords. I just couldn’t retain it. Then it was just steps as far as procedures and following instructions to completion that was becoming more difficult. And also as far as not being as clean as I used to be, I was turning into a pack rat, cumulating things around the house, and it says I will get to that never happened. And so then losing important documents such as my passport, driver’s license, then I knew that there was something wrong.
Karen: Thank you. Mike, how about you? Could you tell us briefly about your experience?
Mike: For me it was symptoms that actually showed up at work, more than they did at home. I was a lead technician for a large telecommunications company and I was also a trainer for new hires. And I actually found myself going to some of the people I had trained how to do the job and asking them how to do my job. So I think a lot of that had to do because of the stress of my job. But it showed up more at home believe it or not with behavioral changes in me. I was always an easy going guy, loved to fish and quiet and types of things. And I was becoming quicker to anger, what I call going from zero to 60 like that. There was some forgetfulness obviously, but I just wasn’t the same person I was before and my wife had noticed it. So we started seeking answers prettier early on, actually in my late forties.
Karen: Thank you. Terry was it easy to get a diagnosis?
Terry: Not exactly, because when I went to the doctor the first thing he says, maybe you’re going through menopause. Maybe it’s your thyroid because you’re too young to have what I think you have. So he wanted me to wait for six months, see if there were any differences and, in my behaviors or have things gotten better. He thought perhaps I was working too many hours, which I did. I worked, I loved what I did and my work weeks were beyond 50 hours a week, but what really got the attention and after six months, and I checked in with him was because I was at a railroad crossing and I got confused as to what to do. So that was one thing that really made them think about all you did. And I actually had gotten out of the car. The other thing was, but that was enough when I just told them that. But it was just getting more current as to you not retaining or losing interest in the things that you love. And I didn’t want to be embarrassed, not remembering people’s names or what they just told me when I was in a role that I needed to know people’s names and not forget them. So after that, he ordered the test and made the recommendation for a neurologist.
Karen: Thanks, Mike, how about you? Was it easy for you to get diagnosed?
Mike: Absolutely not, it took a long time and when I say a long time, I’m like I wish I could pinpoint exactly, but I know it took well close to two years, if not over two years. And again, because of my age, like I said, I was in my late forties when things started happening. The first thing I was told was that it was depression, so I was sent to see a psychiatrist and a psychologist, and we went through that process. And of course that takes a while, only for things to, you know, weren’t getting better. And then I was told it was stress, and then I was told, well maybe it’s Lyme disease or all these crazy things until we finally got to a point where everybody has what we call, what I like to call our an aha moment. And I mentioned earlier, how behavioral changes were happening at home. And one of them happened to be, I’ve been fortunate to be blessed to still be married, this April will make it 40 years. But my wife and I had a disagreement or a challenging conversation as I like to call them. And I woke up the next morning and got a cold shoulder from my wife, not understanding why, which really kind of preceded her to get even a little more upset because she thought I was just blowing it off. But when she told me about some of the things I had said and what the conversation was about, it really hit home and it made us go back to the neurologist and say, listen this isn’t, there’s something more serious going on. So he finally started doing testing, other testing that led to MRIs, pet scans, spinal taps, neuropsychological exams. And then all those things started coming back, this probable Alzheimer’s, probable Alzheimer’s until we finally got the diagnosis of younger onset Alzheimer’s when I was 52. Three years after my diagnosis, my initial diagnosis, it was changed to lewy body dementia with Parkinsonism. Because even that diagnosis of Lewy body is very difficult to get, because there’s subset symptoms that occur that I won’t go into great detail right now just cause we don’t have a whole lot of time, but yeah. So the diagnosis was changed and it’s not unusual for that to happen for people with a dementia diagnosis. A lot of people even have mixed dementias and don’t know it.
Karen: Yeah, I think that’s probably a surprise. People just think you guys go to the doctor to get your diagnosis, but it’s a really very complicated convoluted process for most people. So Terry, after you were diagnosed that you experienced grief?
Terry: My diagnosis was for the younger onset Alzheimer’s I was 58 at the time. And as far as when I was given the diagnosis, obviously it was something none of us want, but what can you do about it? And for me, I had a brother-in-law that had Alzheimer’s. I really didn’t understand it that much, but I had had the opportunity to research it a little bit, to know how to communicate with him. So I just, when he gave me the diagnosis, I cried a few moments. And then I told him that all I wanted or my biggest fear was not being able to talk. But during that process, all I wanted is that when I got to the point that I didn’t know anyone, did I hope that I was Richard Simmons and my mind that that’s where it will take me to, and that I would hope that I will be that person and my purple tutu and my shoes, golden shiny shoes, and just hope I can have the whole center come and join with me and dance. And we’d be Richard Simmons thinking I would be interesting. So that’s how I handled it after getting diagnosed.
Karen: What about you Mike? Did you experience grief after getting diagnosed?
Mike: Absolutely. For the first, initially and again, when we got the diagnosis given to us by a neurologist who we had known for a few years, like I said, very nice gentlemen, we still have a great relationship. But he sat us down, said here’s what all the test results show. Pretty certain you have a younger onset Alzheimer’s, here’s a medication I’m going to start you on. I want to see you in six months and he walked out the door and that was it. So, you know, we had the same preconceived notions or stigmas of what we thought Alzheimer’s or dementia was; it only happens to old people. And in a year or two I’m going to be in a nursing home somewhere or this, that and everything else. So for the first five or six months, I was really hiding under a rock. I was already depressed. I went into a deeper depression. I was still working but that’s all I did was work. I would work, come home and crash because it took so much out of me. And like I said, that was about five or six months until Cheryl said enough is enough. And I joke with people and say, she probably said it a little bit differently, but you know, we’ll keep it clean, kick me in the pants. But she’s had to play doctor Google and she started searching for places to get answers to questions about what we could expect, you know, support groups, who could we talk to? Things like that. And so it wasn’t at least for the first six months afterwards that I was experiencing serious grief. And even today, I still grieve. I grieve a lot of things that I can no longer do, things I used to be able to do in minutes that could take me hours or days or I can’t do it all. I’ve had to give up my independence, my driving. I mean every so often something hits you where you realize that you’re losing your ability to do certain things. And you know, that grief kicks in all over again. So I don’t think it totally ever goes away, but you know I do try to be as cheerful and optimistic as Terry; I try to stay positive.
Karen: So Terry, when you got diagnosed, did the doctor or somebody from his or her office, did you get all kinds of information and support?
Terry: Oh no. When you received the diagnosis, your doctor informed you, well unfortunately you have early onset Alzheimer’s, get your affairs in order and enjoy your life, check and see where you are as far as in your retirement and things like that. We can give you some medication, there is no cure for Alzheimer’s at this time, but it will slow down the process for you. And I’ll see you within six months or either a year, I can’t remember, and that was it. Now, if we were to rewind it and have this disease, what I would have liked to have heard, and which is really helpful for those that follow us with this disease is to give us hope, to give us resources. Where do you go to find people that are just like yourself? Where do you go? Or what can you do? But now we have had to personally learn that we’re not going to die in 24 months because that’s the mindset that we have, that we’re going to die within the next two years, that we’re going to die within the next five years and then year six right now. And to give us them just to lead you to get busy, don’t sit home because I’m giving you this diagnosis by saying that you have all Alzheimer’s and you accept that. I hope that the doctors say, hey, you got Alzheimer’s, there is no cure. We’re working on one, but in the meantime, I want you to get out there and do everything that you can, the work that brain and produce more brain cells. That is what you have to do is to give people hope, to not say you’re going to die to not take it like that’s all I can do, there is nothing more I can do. All of the things I used to do. I’m losing my job. Hey, we have it, you can’t just sit there and feel sorry for yourself and even though each day is a challenge for us, you just gotta have that hope. And we hope that they include that when they talk people in the future.
Karen: That’s really wise counsel, and do you think that being proactive, being positive, being active and engaged, do you think that has helped you these past six years?
Terry: For me, it helped me because in 15 I’m diagnosed with Alzheimer’s and 16 I’m diagnosed with cancer. So I couldn’t just sit there and just like, oh my God, what else is coming? And to me with the Alzheimer’s part of it, of you losing the person that you are it’s important that you have to fight for your future and if you know anyone that has it you see yourself, like, I don’t want to be that way. I only have a certain amount of time, I don’t know that tomorrow I don’t know who I am. And then as we go through this process, you just have to, you have to be positive, you have to be engaged. So you don’t feel sorry for yourself. And if you forget, so what, who cares? You know, I mean, it’s things when people look at us to get that stigma, oh, it’s nothing wrong with you, but you don’t know if I have my clothes on. Right. You don’t know what I can do in a bathroom. You don’t know what I can do as far as cooking or can’t cook. Unlike Mike is a chef, but it’s certain things that we expire in having this disease. And it’s certain things that we go all the way to the bottom.
Karen: Mike how about you, do you think you’re being so active and proactive, do you think that has helped your symptoms over time?
Mike: Yeah, absolutely. You know, like Terry was saying, you know what we wished we would have heard from the doctor when we were given our diagnosis. And the thing I like to think of is, what I believe anyways is the number one prescription doctors should be giving a person with a dementia diagnosis is social engagement. It’s not a pill, don’t get me wrong, we’ll take our medication. We know it’s important, but staying socially engaged is key. And I truly believe in doing that. And a lot of other things I’ve been doing over the last few years is what’s kept me able to be able to do or continue to do the things that I’m doing now. I have a lot of favorite quotes and a lot of them come from movies, and one of my favorite movies is Shawshank Redemption. And a quote from that movie is “get busy living or get busy dying” and I’ve chosen the good busy living. That didn’t happen overnight, it took a while, but you know, what I learned is that I can still learn new things. I can still do some of the things I used to do before, maybe not just in the same way. But most importantly, that I have a voice and hopefully I plan on using that voice for as long as I can, especially to dispel the myths and stigmas associated with dementia. I mean, a doctor came up to Cheryl not long after my diagnosis and said, I’d be in a nursing home within three to five years in July or big year seven. So to that doctor, you know, sorry guy. But it just proved to me that even they are not a hundred percent sure that everything that’s going on, they’re still learning about this too. And you all say, if you’ve met one person with dementia, you’ve met one person with dementia, nobody knows how long or how fast the progression is going to be from person to person. So what are you going to do with your life between point A and point B? And for that for Terry and I, and a lot of folks like us it’s to get busy living
Karen: Well and tell me a little bit about, maybe the audience would be a little surprised at the fun things that you all are doing as you get busy living, you know, before you got diagnosed. Mike for example, you talk about you are a cook. Now are you a chef?
Mike: I wouldn’t call myself a chef, I’m probably a glorified home cook. But I have learned that I love to cook, I have a passion for it. Pretty much everybody that’s had dinners with us seems to enjoy them pretty well. So I guess I do get a lot of compliments and that makes me feel good. I’ve learned to paint different, all types of art. I’ve always been able to draw, but never took on painting until about, about three, four years after my diagnosis. So I paint, I draw and do a lot of gifts that I give to people. I learned how to do video editing for podcasts, for DAA. So I was doing all the video, post-production work for the different podcasts that we have. I’m not afraid to take on something new and just try it. I mean, what’s the worst that can happen. You know, hopefully I don’t blow myself up out of the house, but other than that I’m usually pretty safe and pretty careful. But I mean, it’s just because you have dementia doesn’t mean your life ends tomorrow. You still have a good quality of life that you can live and hopefully you use that time to educate other people about what it’s like and if they have friends or family, hopefully, maybe it changes their opinion or mind of them, then hopefully you will have done something good.
Karen: Well thank you, Terry. I know both of you all are national speakers and you know, you are so good at it. People must think you’ve been doing this your whole life, but that’s something you’ve taken on right? That’s new.
Terry: Yeah and speaking up, doing advocacy and bringing more awareness to this disease and more importantly, to change the stigma to not judge us. I mean, we still have words, we still can think it’s just that we have processes that we lose along the way, but we still want to stay engaged. We still want the medical field and others or how they view us as being a person, not being someone that has no value, because we do. We can’t do all the things that we used to at that level. But like I write that’s when I started doing more of the writing and I try anything, whether I can do it or not, at least I try. And the latest thing I’m learning is to learn guitar, but I’m not doing too well because I’m not musically inclined, but it’s just something I’m going to do. And so I’m just saying that it just gives us the courage. We’ve learned courage and we just do whatever pops into our mind at that moment.
Karen: I love it that neither of you are putting any boundaries on yourself. So, clearly others shouldn’t either. I don’t think most people realize how much stigma there is in society about living with dementia. How has that affected you, Mike you want to go first?
Mike: I mean we could have taken the whole hour just talking about that. It hits you in so many different ways. I mean, one of the other things I do is I volunteer at my local senior center doing tech corner. When I had first retired from work, I stepped into the senior center in the town I was living at the time and asked them who they had doing their tech and they said, nobody. So we started a group, they called us Mike’s Google gals, and I now have a lot of adopted grandparents, which I love. But you know, when I sat down at the table with them and they saw this guy who was probably not senior and they would ask me, oh, you’re just helping to volunteer and I would say, well, no I’m actually retired. And I have younger onset dementia, I can only help one person at a time because I can’t multitask and usually the look on their face was like, wait a minute, but you’re going to help me with my technology. And I’m like, well yeah. I mean, so there’s those types of stereotypes. And another one I had posted something on Facebook just about a week or so ago when another celebrity was diagnosed with Alzheimer’s and usually the old headline always reads ‘so-and-so celebrity battling Alzheimers’ and it just rubbed me the wrong way again. And it’s like putting up the post when another celebrity is diagnosed battling Alzheimer’s. My battle is not that I have dementia, my battle is what people think of me because I have dementia and it’s all the stigmas associated with it. It’s not just about memory loss. I mean this, so you could go down a whole laundry list of different things that people don’t stop to think about when it comes to the form of dementia. And the number one thing for me is that it’s not just Alzheimer’s. Alzheimer’s does take a majority chunk of the metro umbrella, but there are actually over a hundred or a hundred different types of dementia.
Karen: Yeah, thank you. I’m looking at the time, so I wanna give some questions. We still want to get to Terry. Could you maybe share with us all today what are some of the symptoms that you’re currently living with and how do you manage that currently?
Terry: Currently the symptoms have increased, and what I mean by that your short-term memory kicks in where someone where you’re really bad, where when you first went to the doctor is because you couldn’t remember things, but now in your window memory shortens, and that can be quite irritating for your family. And especially for us, because after a while, you’re like didn’t I tell you, I already told you that didn’t I tell you Deborah was over there and didn’t they tell you not to leave the door and it goes on and on. And those simple things are you left the water on or I’m like, your keys were over there, you know? And that becomes your world is that everyone’s like, didn’t I just tell you that. And that’s when it gets into how strong while it’s so good to have a good family base where they understand you and that they can understand that you might not get it, that you need to talk a little slower to us now. Or we might have pads, thank God for the electronics that we have. So we don’t run them totally crazy about reminding me of this and remind me of that. And so all of that is different, but I think that through this walk, it gives us purpose to say, hey, we’re not going to go down like that. No, I don’t remember what you just told me a few minutes ago, but I better just make me a cheat sheet that’ll work for me. And that’s kind of like what we do, we make a lot of little cheat sheets, so we can try to stay as independent in our thinking as we can. And that’s where the engagement comes in at.
Karen: So Mike, Terry is living with Alzheimer’s, and you’re living with Lewy body dementia. What symptoms are you managing right now?
Mike: With Lewy body, it’s called a roller coaster. It’s really a roller coaster because the symptoms can ebb and flow for days at a time, months at a time, or even within a day. So I could go from being really great up here to all of a sudden I’m down on a low and that low can be any myriad of different symptoms. It could be confusion, depression, anxiety, I have severe sleep disturbances issues, one call REM behavior sleep disorder. Where what happens if for a person who doesn’t have it, when you fall asleep, you get into that REM state of sleep and your brain actually sends a signal to your body where it paralyzes your body. So when you’re dreaming your body’s pretty still, with RBD I don’t get that signal. So I act out my dreams and they’re always confrontational dreams. They’re always fighting somebody, chasing somebody, somebody’s chasing me or who knows what. So I’m kicking, punching, screaming. My poor Cheryl’s been bruised a number of times, I’ve fallen out of bed, knocked over the night stand and then walked into a wall. There’s times where I don’t get sleep for 48 hours straight, just because I can’t sleep and that’s even with taking sleeping medication. But you know, depression can kick in and even during this whole COVID when COVID first started. Even like after the first two or three months, people would say, oh, how are you doing? Is everything okay? And they would say, yeah, I’ve been stuck at home. And I was like, hey dude, welcome to our world. Okay, because this is us 24/7 pretty much. For those of us who are at home all day, because we have a spouse who’s still working or our kids are grown up and moved away, you know, we’re staring at the same four walls, 24 hours a day. So what are we going to do to stay active and engaged? So what happens is, especially during COVID, is like I’ve been out of the house maybe two or three times in the last month, period. That was it. And so it exacerbates your symptoms. You know, my depression gets worse or my anxiety will get worse, my forgetfulness, like I said, isn’t as bad as someone with Alzheimer’s, but the biggest challenging conversation Cheryl and I always have is that she’ll say something to me, but my brain doesn’t process exactly what she’s saying. So I either hear it differently, or I have to keep asking her to repeat what it is she’s trying to say. And I love baseball, so three strikes and you’re out, you know, if I have to ask three times or if I don’t understand it after the third time, there goes the light switch. You know, zero to 60. So there’s a lot of behavioral things that go with it. But again, we try not to let it dominate us. But I can’t sit here and lie and not tell you that I deal with a lot of anxiety and depression as part of Lewy body.
Karen: Well, thank you. Both of your courage and openness is just so remarkable. Terry how about you living with dementia symptoms during COVID. How has that impacted you?
Terry: Oh, that’s been really difficult because traditionally I would go back and forth to see family members out of state in Illinois and Wisconsin. And for the whole year of 2020, like most of us, we haven’t been able to go anywhere. And through that, you start slipping into depression and you have to try to catch that the best that you can, but you’re going to have those days. Those boom days, and then with no sleep. Cause I don’t sleep like maybe three hours I’m up every day until about four or five in the morning. Then my other half is getting up and you’re up for the rest of the day. If you want to get two, three hours sleep period, no matter what type of medication. But I can’t remember what day it was. It was a 15 hour drive for my middle daughter to come and get me because I was just climbing the wall. I just wanted to see them and also I wanted to do a follow-up visit medically, but it’s hard. But what can we do because some people still, but I got a chance to see them and I’m like pumped up, you know? Um, cause I’ve been here for about 48 hours but it’s hard. It’s very hard. That’s one of the most difficult things for us not to be able to see family and friends.
Karen: So that leads us to another good question. How can family and friends, how can they best support you? What would be most helpful, Terry, we’ll start with you, and then go to Mike.
Terry: I think that something as we are having a little bit of, give us a little bit of room to know that we’re different and just knowing that they are there for us. And when we’re asked, we don’t ask for much just for them to understand that we’re not who we used to be, but just give us a little room, but it’s really important to have a family that’s supportive of you. To understand so if you’re saying something, they have no idea what you’re talking about, just going along with us but don’t crowd us. Let us think if we can think if we have an idea, listen to it and just accept us for what we are, because we need our family, we need our friends. And when we don’t have either, we feel it’s detrimental to us.
Karen: Mike, how about you? What would you want?
Mike: I echo a lot of what Terry just said. It’s just letting us be who we are and don’t forget who we were. I mean, we understand that we have symptoms and things that may feel like you’re being personally attacked. And what I tell people all the time is dementia is a disease, not a personality. So if I say something cross to you, like you can almost guarantee that that’s the disease talking, not me personally. But what the best thing you could do is just encourage me to be who I was before or even better yet, do things outside of the box. You know, you asked her earlier about public speaking. I had never done any public speaking in my life until I got involved with the Alzheimer’s association in DAA. And because of that, I’ve been on national boards, you know, directors and tasks. I was on a task force for the National Academy of sleep medicine. I’m on a national task force for the geriatrics, something I can’t remember the whole acronym. I’m actually on the Alzheimer’s Advisory, state advisory council for the state of Massachusetts. I’m actually fighting for myself and a number of people to try to get the COVID vaccine to people with a dementia diagnosis. Because right now in a lot of states, that’s not even being listed as a comorbidity. So you have to wait your turn in age and especially for people under the age of 65, you’re talking in the middle of April. So I’m actually working with one of our state senators and state representatives in the department of health and elderly services to try to get that fixed. But I would’ve never been able to do those things had I not been encouraged to speak out. And again for me, it’s almost a personal thing. It’s like, yeah, I’ve got dementia, but let me still show you what we can still do. And there’s a lot of voices out there that need to be heard. So encourage them please. The last thing you want to do is stifle them or talk about it in the back room or whisper about it.. You need to talk about it, just get it out in the open and talk about it.
Karen: So there are so many different questions that I don’t want to limit time for people to be able, but one person has asked, do you experience more symptoms at a particular time of day, is one part of the day better than another? Terry let’s start with you.
Terry: I would say probably earlier in the day, I’m more chipper and more energy than towards the end of the day because you don’t get a full night’s sleep. So by the time evening comes, you’re a little more irritable and you want to shut down or you do shut down. It’s not that you want to shut down, you just shut down and you’re pretty much empty, meaning you’re not responding quickly. You’re getting irritable, become irritated. So mornings are better.
Karen: Mike, how about you? What time of day, or is it constant all day?
Mike: I mean, definitely what Terry said. You know, if I did get a couple hours or a few good hours, sleep, in the morning is definitely better. As the day wears on, it wears on me a little bit more and more. And the other thing is overstimulation is a major no-no. I know for me, and a lot of people who have dementia and that can come in many, many forms. I mean, just think about going to a restaurant and you’ve got 15 conversations going on in the restaurant, TV’s blasting with ESPN or some game or something or other. My brain can not process all that information. So we actually go to a restaurant, I bring ear plugs with me. I didn’t bring them to family outings just because being overstimulated just sends me in other directions and I just shut down. So even things like that. So I’m even careful as to things I watch on TV. I definitely try to stay away from politics, which has been really hard lately, but I’m working hard at it.
Karen: Another one of the questions is, do you have any issues with your vision?
Terry: I do, I need to see a doctor like ASAP. I don’t know what I’m waiting on because I’m beyond the reading glasses, but yes, it does affect my vision.
Mike: And for me, it’s it’s depth perception. I mean, I walk into walls and bruises on my shoulders, broken one of my toes walking into nightstands or walls or things like that. So it is definitely depth perception to a certain degree. But it’s also one of the things I didn’t mention is hallucinations. And one thing I have learned going through this whole process is that when people hear about hallucinations, they automatically go to visual and hallucinations actually affect all of your senses. So the majority of hallucinations I get are actually auditory and smell. I actually smell fire or smoke when there’s nothing going on or even touch. You feel like somebody is touching you and there’s nobody there. So it’s more than visual.
Karen: Charles i see you’re back on, do you have some questions?
Charles: Thank you, Mike and Terry, I cannot tell you how moved I personally am from hearing your testimonials. You know, Mike, at the beginning of the session, you talked about this idea of prescribing social engagement. I don’t know how much you know about the origins, but the origins of all people’s activity from life enrichment directors, that is what they love to do is to help people with purpose every day. So I’m sure that a lot of people are really inspired by some of the things you’ve said and both you Mike and Terry, you’ve mentioned this idea of encouragement for new things. And this is what activity in life enrichment people love to do, which is to encourage people. In your case, Mike, this idea of cooking, the computer skills, even the public speaking, this is just amazing.
And Terry, your words about patience, every person on the line, I can tell you they know for a fact that if you have patience how useful it is. But the thing that I love the most about what you said, Terry, is this idea of finding purpose. So, you know, Karen, you asked me if I had a question I love to ask both Mike and Terry, what would be your request or your word of advice for people in the audience now that I’ve shared a little bit more about what they do, you know, what is your word of advice to help them continue helping people find purpose everyday? Do you have recommendations or have you seen things that work particularly well for you?
Terry: I would say the one thing is don’t assume, let that person be who they are, listen to them, let them, if they have some type of ability or skill, whether it’s music or singing, not to just flop people together like in a gallery and everyone’s doing puzzles and things like that. But let them do things that’s engaging. If you have an outside, let them go plant, let them talk about things, let them talk about different subjects that they like to talk about and get some ideas on what type of activities that they want to do, or that they can do that you may not even know that they can do it, but it’s just the fact that letting that person know you’re important. Even though you have this journey, you still matter. Tell us something that we should do, which is what you just asked me, include them.
Mike: Yeah, I love what Terry just said. And one of the things that was in a slide that Karen said was nothing about us without us. And so engagement can take many forms. Engagement could be somebody, I love to do paintings and drawings. And I love to give them as gifts to people because I feel like I’m giving them a piece of myself to somebody else’s a gift. That’s a form of engagement. It could be, obviously just think of all the senses, it could be smell, it could be touch, it could be getting your hands in some dirt. Or whatever it is that’s meaningful to that person that’s engagement. And the worst thing that somebody could do is to argue or disagree with a person who has dementia. Because trust me, when I tell you, you are never gonna win that fight or argument. That’s never going to happen. So if you’re trying to teach somebody something new and they’re trying to do it a different way, follow them. You know, one of the challenges we had when we first moved into our new home is my wife who was very thoughtful and trying to set up the kitchen draws the same way they were in the old house. And I kept reaching into certain draws, looking for certain things and only going to have to look for them and other draws. And we finally had a conversation and said, instead of me having to conform to how you put things, why don’t you put the things where I keep looking for them so things get moved around that way, if it’s muscle memory or whatever it is. So hopefully try to use that frame of mind when you’re engaging with the person who has to mention no matter where they are in the progression of the disease.
Charles: Thank you both Mike and Terry,it’s been an honor to have you both. Karen, thank you so much for helping us, your work is amazing. And to the audience, to every single person in the audience, I highly recommend that you seek out the work of the Dementia Action Alliance to better understand what it is that Mike and Terry and every person that has dementia is going through. Like Mike said, when you’ve met one person living with dementia, you’ve only met one. So in order to explore this world, please consider exploring the work of the Dementia Action Alliance. Karen, thank you so much, Mike and Terry again thank you so much to everyone. A quick reminder, as we are almost at the time, a quick reminder about ongoing creative care collaboration in partnership with Time Stamps. If you have any questions about it, please feel free to send us a note or consider visiting this website. And as a reminder, this Activity Strong webinar is part of a series. And we have a number of very exciting webinars. All sorts of different topics, some of them are listed here, most of them are actually listed on our website. So if you want to sign up and I want to point your attention to the fact that we are finalizing our 2021 virtual summit, which is a whole day event held on June 22nd. We’re going to have amazing speakers and amazing initiatives. And as always, everyone is welcome. Karen, thank you for your work. Mike and Terry, it was an honor to have you and continue having fun every day. Take care, everyone.