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Published November 8, 2023
Are you familiar with the symptoms of Alzheimer’s? Neuropsychiatric symptoms, or NPS, are mood and emotional symptoms of dementias and other brain diseases that are often overlooked and under-treated. This Alzheimer’s Awareness Month, we’re amplifying the voices of those experiencing NPS.
Today, we’re joined by Terrie Montgomery, a friend of the alliance, a patient advocate, and someone who, after receiving a dementia diagnosis, has committed her voice to ensuring that Alzheimer’s patients have access to treatments and care and that there’s a nurturing community for everyone.
Hi, everyone. Welcome to This Is Growing Old, the podcast all about the common human experience of aging. My name is Lindsay Clarke and I’m the Senior VP of Health Education and Advocacy here at the Alliance for Aging Research.
November is Alzheimer’s Awareness Month, a time to celebrate the resilience and courage of all people living with Alzheimer’s and other dementias. It’s also a time to raise awareness of the unique challenges that Alzheimer’s brings beyond memory loss, including other neuropsychiatric symptoms. For those of you who are unfamiliar, neuropsychiatric symptoms, or NPS, easier to say, are the often disabling behavioral and psychological symptoms of dementia. They can include apathy, depression, anger, dementia, anxiety, and more.
Today we’re really fortunate to be joined by Terrie Montgomery, a friend of the alliance, a patient advocate, and someone who after receiving a dementia diagnosis, has committed her voice to ensuring that Alzheimer’s patients have access to treatments and care, and that there’s a nurturing community for everyone.
Terrie, thank you so much for being here with us.
Thank you. Thank you for inviting me.
Well, I want to start off by having you share with all of our listeners and viewers some of the neuropsychiatric symptoms that you’ve experienced and when you first started to notice them.
I would say after having it for a while, or when you first get that first diagnosis, you sort of freak out and wonder what if you become a little paranoid. You’re thinking the worst before even really understanding what the disease is. That’s like your first warning. It’s like, “Oh my gosh, what am I going to do? I’m going to be totally this way.” So you have that anxiety to think the worst without even living with it for a while.
But after being with it, I’m in year eight of it, is that now you do have that anxiety. You do have those moments where you can get depressed, where I try to keep myself happy in some kind of way or make some jokes, but you can find your way where you’ll dive, where you will feel down, and you have to bring yourself up. You can’t stay there. It’s just moves that we go through that we really can’t change it, but you’re going to have it. I don’t care how happy you are, but you have to pull yourself up. And so that’s part of my journey of what I’ve experienced is sometimes you feel yourself taking a dive, but I prefer to be happy. Sometimes you feel the anxiety. It’s like, “Oh my God, what about, what if?” And you got to sort get over that. Just keep going. If you fall down, just get back up. Dust your knees off. Keep going.
Yeah. Well, I really admire you for that attitude and just to keep going and stay happy. And I think one of the things that we talked about, so this last summer, we filmed together and you shared your experiences with dementia and neuropsychiatric symptoms. And it was part of our Shake the Stigma films. Why do you believe it’s so important that we’re shaking the stigma when it comes to neuropsychiatric symptoms?
I am glad to see that happen because so many times just having the disease, it’s a stereotype of how people view us. Some of us, before we had a diagnosis, probably have never seen a psychiatrist. Some of us never really shared our life. But then once upon getting this diagnosis, you have to… People talk to you, or you go to your doctor and they talk to you and you go to your neurologist every year to get analyzed and things like that.
But it’s really important for people not to say, “Oh, well, they have Alzheimer’s. Oh, they have dementia. They don’t count.” Like, we don’t count, but we do count. We do have emotional feelings. We do have those moments where some people need to tell us, “Maybe you need to do something to release that stress,” or whatever. So just because we have what we have, it don’t mean that we don’t get those out of the ordinary feelings that others would get, that we are feeling depressed. Are we feeling rejected? Are we feeling irritated? Are we feeling mad because people look at us in a different light and we just get frustrated and blow it? Me, myself, it’s like whatever. It is just talk through it. Find something that we can do to calm ourself and not be embarrassed to talk about it.
Yeah. And that’s what we were really hoping to do with those films, and a previous film that we’ve done that really talks about what neuropsychiatric symptoms are. And they really are medical symptoms of Alzheimer’s, just like memory loss, and the cognition changes that I think a lot of people think about when they think about Alzheimer’s and other dementia. So for people to understand what these symptoms look like, feel like, and that they are medical symptoms and that some of them can and should be treated, it’s really important.
And you mentioned talking with a psychiatrist. Why do you think people living with Alzheimer’s should be talking with mental health professionals?
And that’s so interesting. I spoke to a psychiatrist for the first time last year. Or was it even earlier at one of my employers where there was a lot going on? But in that scenario, you have all this frustration where you have things that you remember. You have things you no longer remember. You have things that are new to you, whether it’s in your relationships, children, as you get older, as you’re moving through this disease. You got all of these things in your head and you’re like, “Oh, I’m feeling like I’m crazy.”
But you have to admit, have someone that can talk to you and talk to you normal, not talk to you because you have dementia in some type of form and you have Alzheimer’s, but talk to me for me because you never know what has happened in our lives. We could have had something that happened to us that wasn’t so nice years ago in our lives, and somehow we’ll get stuck on something, or something will trigger us to go back where we’re back afraid of something.
And when you are noticing that you are staying upset, or you’re staying irritated, or you are losing patience, it’s time to see somebody. And see someone that won’t judge you, like, “Oh yeah, it’s just your Alzheimer’s. You have that part of the disease.” No, you want someone to talk to you and understand you for you to share, so they can give their evaluation of how we are, just like we may need some psychiatric evaluations or some psychiatric conversation to see what type of personality we have. And the only way that we can learn better to deal with ourself is to talk to a professional.
It’s not embarrassing. It’s not like somebody has to say, “I got to see a shrink.” it’s a private thing. If you want to share that with someone to get someone else to go, good for you. And if you don’t, it’s your private secret. So I don’t know. I just know having this disease has made me, I’m not afraid of anything. I’m really not.
But I think it’s so great that you talk about how you benefited from talking to a mental health professional. And not only is it about talking, and having someone who can help you understand and address what you’re going through, but oftentimes with symptoms like sleep disturbances or getting agitated, there are certain symptoms that really can be treated and make things easier. So I think that’s really important. You’ve touched on this a lot already, but your passion, your resilience, so inspiring. What keeps you going after receiving your diagnosis?
Well, when my journey started in 2015, it’s like, “Okay, you have early onset Alzheimer’s.” “Okay.” And then that next year, before I even understood what that was, I had cancer back to back. And so when you have that, I’m like, “Well, I have Alzheimer’s, now I got this?” I just can’t do that because it’s years to live. However long it takes for this to happen or that to happen. I just learned to accept what happens to me and keep it moving.
When I first had my Alzheimer’s and I really didn’t understand what all of those steps were that you had to go through, and it just sounded horrible. And so when I got the cancer, I was like, “I would rather die with the cancer than go through all these steps with this Alzheimer’s,” that’s how I thought at that time. But then my children told me, “You’ve always been brave. You’ve always been bold. What’s the problem? Why would you just say just let cancer do what it wants to do?”
But I had to really think on that because it was the shock of receiving a diagnosis of what Alzheimer’s look like. And then the next year you get what cancer looks like. And you’re like, “Let me choose here.” But I’m glad that I was able to have good doctors, and have a good family, and to listen and to not assume what to fight. So if you can fight the Alzheimer’s, and you can fight the cancer, then if you’re going to fight the cancer, then please get back on the other side and fight the Alzheimer’s. So for me, it was just one of those things. I guess is the religious side. The mental part is like, just go for it. Just have faith. Just do what you got to do, fight it. And so I’ve been fighting every since.
Well, and you are bold, and brave, and a fighter for your personal journey, but also for other people living with Alzheimer’s. Why is patient advocacy so important to you? You’ve become a really fierce patient advocate. Why is it so important to you?
It’s important to me because whatever I experience, if it’s not fair, I want to point that out, that to make it fair for all patients. Don’t categorize or associate all of us as being the same, because we’re not. We can sit there and talk to you, sing a song, do everything, sounds like we’re perfect. But then if you see us 30 minutes or three hours later, you’ll be like, “Huh?” Because we go through different cycles in our brain, and all of us are different. Where we may have score high in communicating and maybe score poor in congregating. Some people likes to be alone, but it’s not good to be alone. But we all need that one-on-one time, but it’s just beneficial.
What was the question again? I’m sorry. Sometimes I could go off track.
No, that’s okay. It was really just why is patient advocacy so important to you? And I think you touched on that, but if there’s other points you want to share, please do.
Yeah. I think because sometimes people are biased on how they look at us because they may feel, “Well, you have Alzheimer’s,” and they treat you like you don’t realize you have other things that’s wrong. Whether it’s mentally that things that are going on, whether it’s personally, whether it’s a change of life that you just so happen is going through at the same time that you have your Alzheimer’s.
And so all of those things that normally happens to us, we have to understand that we are worth fighting for. If we come to you and telling you that there’s something else wrong with us, we want you to help us get better. We realize that we have this disease, but this disease does not have us until we’re all used up. So we want to be able to still fight, to still see if we can be out there for a cure, to still be there, that we can be there for research, to still be there to make us be important, but don’t treat us as this populations that it costs us much to keep this person alive. That’s not fair, because now this disease is happening to people in their thirties and forties. That’s not fair. So if you’re not going… Treat everyone the same.
Yeah, I love it. Well, so to that point, how can our listeners, whether they have someone in their life with Alzheimer’s or other dementias, or just want to show up for others, what can people do to really help?
I think that it’s not this big secret when we have these that is wrong with us. When we go to the doctor, I always think of, “Well, I’m not the only one that’s having this problem, doctor.” Or I may share, “But what if I lived in the rural areas?” so something like that. “Can you make sure you pass this on to your students or to someone that knows about this? Is there any way that we could get communication out there for them to know that they can trust and talk to the doctor, for them to know that they still should have their mammograms and all of those things that they need to be tested for, to make sure that just some of us know that’s able to see a doctor, but also those that don’t have any communication with doctors.”
I’m just hoping that when we see a doctor or we share something that’s going on with us, that we be that advocate for people who has no voice, that we be that person that say, “But doctor, what about, have you thought about this? What about if we want to participate in the clinical trial? What about,” to get more information out there for us and for others to know.
If you have this disease, find out as much as you can. Talk as much as you can. Prove as much as you can. Ask why as much as you can. Don’t just sit there and say, “I got this disease,” and wait to die. No, start that clock and start living your life. Volunteer. Ask questions. Why not? Do all of the things that is possible. And take them by the hand and say, “Do you have any more room for me? I’ll help. What questions do you want answered? What questions do you want to ask me? What about my neighbor? I’ll bring in some of their questions since they have no insurance to go anywhere.” We start a partnership, we start whatever, because it’s a network to care for others too.
Well, Terrie, that was, I feel like really good advice for people who are living with or living with someone with Alzheimer’s, but basically for anyone for any diagnosis. So I know that everyone listening will be really inspired.
Before we wrap, we have two questions that we ask of everyone who comes on our podcast. And the first is, when you were little, what did you imagine that growing older would look like?
Oh my goodness. See, for me, unfortunately, I was the only child on my mom’s side. And I really didn’t play too much as a kid. I was doing teenage stuff where kids… I really didn’t have too much of a playtime as to what it would be like to play, to be a kid. But if I say it now that I have what I have, as I progress, I focus more on being a kid because I did so many grownup things when I was a kid. When the other kids would be outside playing and stuff like that, I’m doing stuff, making the grocery list, getting things like that. And I was like 10 years old, 8 years old, between 8 and 12 doing things that most teens would do or adults would do. But that’s how I was raised, unfortunately. So to answer the question… What was that question again?
Well, you did. No that really you’re living out your childhood fun right now, right?
Yeah. And so now, for someone to be older, and how you would like to be a child, I’m having a ball of my life. I do whatever I want to do, whether it is change my hair. I don’t have to ask permission. I just do it. And if it doesn’t make sense to anyone, it makes sense to me. If I want to try out all the candies, even though I don’t eat sugar, even though I may want to go in and play Double Dutch, jump in with some kids, the grandkids, “Oh, let me play with you.” Play ball, learn to swim. I still haven’t done that. I almost drowned twice.
But I feel that on my journey that I think more of the fun things to do as a kid. My grandson had gave me this little bracelet that was like a lizard, I don’t know what they call them, but they connect together like a little animal or something that I was wearing. I said, “Oh, thank you so much.” It was like, he gave me a million dollars. But it’s just those fun things that you get to do with the kids and things that, your songs, whatever, just have fun. And I don’t mind how old I am, I just want to just have fun.
Yeah, I love it. Well, Terrie, it is just always a pleasure to talk with you and an honor to share your story. And I want people to go and watch your full film that we did earlier this summer. So people can go to agingresearch.org/nps to see Terrie’s film and some other advocate’s films. And learn more about what neuropsychiatric symptoms are, because I think that that’s a lot of the battle here is having people even understand what those symptoms are.
And so thank you Terrie for joining us.
Well, thank you for the opportunity. Thank you so much.
Our pleasure. And for everyone listening and watching us, thank you for joining us. If you are interested in listening to more of our This Is Growing Old podcast, you can find us wherever you get your podcasts. Have a good one.