Abledon Air, major sponsorship was given by Green Mountain Support Services, empowering neighbors with disabilities to be home in the community. Also sponsorship was given by Washington County Mental Health Services, where hope and support come together, and Champlain Community Services of Vermont. Hello, and welcome to this edition of Abledon Air, the one and only program that focuses on the needs, concerns, and achievements of the different label. We would like to thank our sponsors, Green Mountain Support Services, Washington County Mental Health, and Champlain Community Services. With us to discuss the importance of growing up and helping a relative with Alzheimer's is Dr. Brett Campbell. I'm Lauren Seiler. I'm Lauren Seiler. Let's get ready to ask questions. Thank you for joining us on Abledon Air. Thanks for having me. So we're talking Alzheimer's today, and tell us a little bit about what is the definition of Alzheimer's disease and how your family dealt with it. First of all, with the doctor, that's a PhD in a totally different field. So I'm not any sort of medical expert on Alzheimer's. My experience with it is having been the caretaker, the primary caretaker caregiver for my mother for the last year and a half of her life while I was watching her succumb to the disease. So to define it, again, I'm not any sort of medical expert, but it's a disease that's eating away at your brain. How so? Well, someone showed me one time three scans of brains, and it was color, and the red areas showed the active areas in the brain. And with a child, you had almost kind of a Swiss cheese thing going on, different areas of the brain active. As we grow into adulthood, those red areas expand. Well with cerebral palsy, for example, I have cerebral palsy, it deals with the cerebellum of your brain, that part, and nerve endings and neurological stuff. So go ahead. Well, just to finish, the third image was the brain of someone suffering Alzheimer's, and it was very much like the child's brain of the smaller. The only difference being those are going to get smaller. And that was when I realized, when I saw that, that my mother had always been very immaculate in terms of taking care of the house and such, and now she was leaving a lot of crumbs behind, and we had an ant infestation. And I would try to talk with her about, let me get her to remember to put, and when I saw those scans, it made me realize, she's all done learning. She's all done learning, and changing behaviors. So I had to just learn that I had to work a little harder and be more accepting of limitations. And it's funny how life cycles are bookends, because in this case, the child was becoming the parent to the parent, you know, switch roles. So the parent was regressing. Back to a child. Yes. Very much so. Okay. So when you say that, what exactly does that mean? Well, I don't know for certain, but I would estimate that my mother's level of cognition and cerebral activity was on a par perhaps with like a five-year-old. What? A five-year-old. Uh-huh. So she would call you mommy or daddy? No, no, nothing like that. Nothing like that. She still was aware that I was her son. But for example, when her sisters, my aunts, came over to visit one time, and we've known them for years, and my mother was taking them around to different rooms, almost like a kid would give you a tour of the parent's home saying, this is Brett's room, and this is my room. When she was in the last month of her life, going back and forth between what was then Rowan Kortner's thing home and the ICU at CVMC, she was in the ICU at CVMC. I had, yeah, she fell while she was not in my care and broke her hip, and that complicated things and brought them. She died about within a month or so, the accompanying pneumonia and these sorts of things, and when I got the call from the hospital where she was staying, basically she was in a assisted living facility for a two-week stay. While I was checked into Brattleboro Retreat for a few days for the exhaustion and the depression of watching her losing her mind for a year and a half, things like waking me up at three o'clock in the morning, telling me I had to drive her to work at a local business here that she'd never worked at, and she thought she was an employee there. She worked at stores right next to it, and she had a friend that worked at this particular store, and I had to try to convince her it was three in the morning by having her look out the window and see how dark it was outside, but sometimes she would have difficulty remembering what day it was. Would she think, okay, so as Alzheimer's to a point, as a person with Alzheimer's, are they considered mentally incompetent? Oh, I would think most certainly, yeah, with my mother falling and breaking her hip, by the way, I googled, they said, I always heard the term the beginning of the end, then I later heard medical staff people call it the old person's best friend, but yes, definitely. In fact, part of what I was dealing with sometimes, I hate to say, was keeping her protected against phone call scammers that wanted- What exactly is that for an elderly person who doesn't- Well, there's one that was a national publication that I won't name I had otherwise previously respected, but they did the old scam of send you a free book, and if it's yours, if you like it, you can pay $20 and keep it, or otherwise you can return it, and I only found out about it later when they called or sent another, and I was like, we'll send it back to you, you know, just other- There are people out there that pray on the elderly. In earlier days, the blanket term for whether you might have had Alzheimer's or Parkinson's or some other dementia coming on, they would call it going senile, and there are people who will take advantage of the folks that aren't in charge as much anymore of their mental faculties. Life is book-ended, you know. We come in helpless. Going back to being a child, so she was regressing. Well, I'm taking care of her as a middle-aged adult. She wasn't diagnosed with a disease until she was 83, and this was back in 2013, the year that she passed, and backing up to remember a little bit, it's been a while since I was reading and researching about Alzheimer's while I was taking care of her, but apparently it's a matter largely of neurons, plaques and tangles, they call them. They can get disconnected, and if some of them snap in a certain way, they will tangle up, so you're getting all kinds of misinformation. The human brain is much more complex than people can understand. Because the brain acts as a computer, and a computer with feelings. So if the person is tired, right, overworked, tired, going to get sick, that type of thing, some people, you know, because going to Alzheimer's and retirement per se, some people think, oh, I must work seven days a week to make ends meet. You know, I shouldn't take a break, but in actuality, people need to take a break, because otherwise you're going to turn around and get sick, and end up to the point where can you comment on stuff like that? Well, certainly, that's one of the things I mean to advocate for the most is the... What did your mother do for working for her mother? Well, I think before I was born, she was doing administrative assistant or what they called secretarial work back then, and then the era that I was born, it was quite common for the men and the fathers to go to their work, and many of the mothers were at home taking care of the home and spending a lot more time with the children, raising them. She returned to the workforce to part-time in various retail stores after my father passed away when I was 18, and I think that she did it. The extra income, I'm sure, certainly helped. I think it was just sort of a social outlet for her that way, too. One of the things I want to advocate for, again, is that they leave so many people... If I hadn't been there for her, and I'm the middle of three sons, I'm just the one that ended up being single my whole life, and the one who, when my father did pass, she relied on me, I think the most out of the three. My younger brother was too young, and my older brother was dealing with some issues, and so it fell to me, and then as she got sicker, I left a place I had in Northfield to move in with her to take care of her. When I first moved in, she was still lucid enough that we could watch Jeopardy together and talk. We could carry on adult conversation. It was when she had this, apparently, mini-stroke or small stroke in March of 2013 that I read the same thing from a woman professional writer who wrote an article. My mother was getting a magazine, the AARP magazine, American Association of Retired Persons, I believe, and there was a woman who wrote an article, and it was the exact same thing. Love, her mother had a stroke, and this kind of triggered a chain reaction. Well, you've got to think also, as far as medicine concerned, let's take history, for example. When people had strokes way back in 1800s, 1900s, or Alzheimer's or brain injuries or problems, doctors were first, they were first coming up with antidotes to this. With Alzheimer's and Parkinson's and other things related to it, Alzheimer's is really no cure for it. Is there? I have not read or studied it as much detail since my mom passed, and as somebody who would like to... Was she losing her memory? Oh, absolutely, absolutely. Remembering dates, places, and all that. That long-term memory is much more intact. That's an excellent question, and one of the things I was going to allude to before was, I was very lucky. I never faced the day of going to visit her in some facility or other, and her asking me the heartbreaking question of, who are you? I think on a couple of visits there between the hospital and Rowan Court, I think at first she may have mistaken me as just another staff person there. I mean, I was visiting her one time in the ICU at the hospital, and I told her, you're in the ICU in the hospital, and she's like, I am? Just no. Is it physiological deterioration of the mind itself? What exactly is that?  There was, was it on one of your earlier shows that a person said? Yeah, it can make you, from the lie down for, yeah.  The Vermont Center for Elderly Independent Living, for elderly services, came on and spoke about Alzheimer's and heart attacks and strokes. But yeah, the person becomes tired. Yeah. As for cure, I don't know. I've heard some rumors along the way. I've heard some, you know, I haven't seen. The one fact that I can recall when I was doing some research, and so this is six years ago now, was that right now the estimate is that one out of eight people over the age of 65 will get Alzheimer's. So one out of eight, that puts it at 12.5%. By mid-century, they're estimating that it'll be one in four, doubled, up to 25%. People are living longer, right? And these bodies of ours are built to last only a certain amount of time. So yeah, the mind deteriorates. They become like children again. Somebody has to take care of them. I was lucky. I had some really nice assistants from the folks at Central Vermont Home Health and Hospice, and also some wonderful assistants from the folks at the Council on Aging over in Barrie. And thank goodness for Project Hope because that was a place where the scant work that I could do, I was so busy taking care of her, the scant work. I was like substitute teaching here and there. At one point, when she first was diagnosed with it, and I was taking care of her and didn't really have much steady work at the time, I went through what for me as a fiasco of trying to learn how to be a life insurance salesman. I got suckered in with, I'm sorry that's not speaking well of the life insurance industry, but not the line of work for me. I'm a teacher, not a salesperson. But so you take a financial hit, right? At the end of taking care of her, I was financially, emotionally, spiritually destitute. There was a time that I was living essentially out of her car. I was teaching writing classes at Norwich in the morning as an adjunct professor, and there were times that I was parked in my car in a Norwich parking lot because I had no other place to go. Setting an alarm to wake up on time to go teach my eight o'clock class. One of the things I want to advocate for is- So you were a professor at Norwich? Part time, a while back. This means that folks can't work as much. We don't have We're heading towards an epidemic or a pandemic of it anyway. 25% of the population now. We're living longer and our diet is different.  Unfortunately, I have too much of one also. My father did it. He died when I was 18. I could only imagine what it would be like if he had lived along with her and gotten Alzheimer's too, but they're also from the generation that's the first to have refined sugar and white bread with very little nutrition to it and such. In one article that I read, I think in a Discover magazine shortly after my mother passed, some medical professionals were calling Alzheimer's diabetes type three. So I can only imagine it's like saturation of sweets and such through the brain. I have to pay attention certainly to what my diet is. My mother was a crossword puzzle person up until the last one. Okay, she had it. Will you get it? I have no idea. Is it trickle to the family members or the family chain? I don't know. I don't know. I don't know whether it's genetic that way. I think it's possible that it could be genetic certainly and bio environmental as well. And will I get it? Gosh, I hope not. At one point I asked the counselor if I'm in student loan debt for my doctor and such and I was saying to him, well, if I get Alzheimer's, do you think he'll excuse me from having to pay the balance on my student loan? And he said, I don't know, but I don't think you'll care. I wouldn't know what was going on at that point anyway. So will I get it? I hope not. Is there a chance that I could get it? Most definitely, most definitely. It usually sets on in earlier years, but I have met people who have had parents or loved ones who have gotten started developing it in their 50s or 60s. The all I can tell you from firsthand experience is the heartbreak. How so? You love your mother, right? Yes.  Of course you still do. Could you imagine staying with her and watching her losing her mind a little bit more each day? Could you imagine coming home from doing substitute teaching at the school? And my mother, because my aunts had come and visited and told her about an upcoming high school reunion for her in Hardwick in June. I think this was April at the time, but she was convinced that that she had to be taken to Montpelier High School this Monday evening because she had a high school reunion. And I was like, well, she has this idea in her head because her aunts introduced her to it. I think they even gave her a little printed piece of literature about it. And it got to the point the only way I could convince her that that reunion was not happening that afternoon was to call her sister and put her on the phone with my mother. And my mother's like, well, I guess I'm wrong. Does it affect family in different ways? Sure. In other words, you feel one way, your sister's might feel another way. I have no sisters. I'm sorry? That's okay. It would have helped me understand women a lot better, I suppose, if I had. But, and I don't mean that derogatory, I just mean that as one of my own shortcomings. The, yes, it affects the entire family. It's like alcoholism or an addiction that way. It's, you cannot love someone like that and not be affected. I went into such a deep depression afterwards. And I have, I have what's considered caregiver PTSD. You don't get PTSD, caregiver post-traumatic stress disorder because you're in a battle. Usually we talk about the military personnel coming and having post-traumatic stress disorder. They're not the only ones that stuff. If you suffer a significant enough trauma, you will very likely have a post-traumatic stress disorder. Well, I mean, my wife has PTSD due to World Trade. I'm sorry, to World Trade Center. Oh, that's right. She was there. Yeah. On September 11th. So you're suffering PTSD from taking care of your family members? I'm trying to understand this. Well, let's go back to your mom, okay?  You still do. Yeah. How would you like to be living with her and taking care of her? It would be very hard. Yeah.  You wouldn't have a life and you'd be getting eaten inside.  He passed away, but it was very hard for us as a couple to see him whittle away. Mm-hmm. You see. So I understand what you're saying. Yeah. Yeah. Yeah. Yes. So that's the, I mean, one time I was in a very long conversation with a woman who was a psychologist. I can't remember. She might have been coming to talk with my mom via Washington County. She may have been connected with home health and hospice. I don't quite remember. She may have been with counsel on aging. But I had a long conversation and she said, you're in a battle zone. When I was checked into Brattleboro Retreat, I slept almost solidly for 24 hours. I did not realize till I got down there that I had been running on adrenaline fumes for several months. I just, I had to keep, keep, keep going. There's a song back in the 70s. I forget who. I have to look it up. It's called Running on Empty. Jackson Brown. Yeah. Yeah. And sometimes people live for that song because you can't just run on fumes.  You have to eat. You have to drink, stay hydrated appropriately. You have to get enough sleep. Some people talk about Alzheimer's for a minute, but some like marathons, okay? They're married to, oh, I must get that gold medal. I must get this. I must get that. I must try harder. You know, boxers do the same thing. But some of Alzheimer's is still back in, you know, olden times thinking, oh, I have to go to work. I have to do this. I have to do that. I have to do that. When will they stop and say, okay, now it's time for rest? You know, could you clarify for me who they are? People in a general. Okay. And people, what I mean by people in general, when I said, I said, I'm going to say it again. When people say, oh, I have, like you said with your mother, she thought she was going to work and you were taking her. So they're regressing back to Wembe, right? But there needs to be more services. Absolutely. That's why I'm here. For Alzheimer's. Yes. That's largely what I'm talking about. Yeah, go ahead. I'm sorry. I'm just thinking. Go ahead. Don't apologize. It's, yeah, I'm glad that you are, because this is something we need to do a lot more thinking about because it's, again, it's... What happens to the elderly person, like for numerous times, for numerous years, back in New York, I did shows on what if a person's family member dies, a parent, where does that leave the child? Mm-hmm. Now, you know, how does the child get taken care of through the state? Does the child get taken through the state because there's nobody to take care of the child? So when does that leave you when you don't have help? That's okay. I think this is something I've thought about if this is answering your question. I think it is. Go ahead. Okay. I was available for my mom. Okay. Just this, you know, out of the three sons, I was the one... Like you can't do everything. Right. Yourself. But here's what, here's why I'm going with it. Both my brothers have been married, have offspring, have kids. So for someone like me who's never married, doesn't have any kids, if I get Alzheimer's like you asked earlier, what becomes of me? We're leaving it, we're leaving it to home care. We need facilities built. People need jobs. We need facilities built. There should be more professional, more compassionate professional service. When my mother was, excuse me, when my mother was in the ICU. Excuse me for a second. So it's like PDSD. If you were, okay, let's say my wife was in the Army Navy Air Force. I don't think she can be all three at the same time. I'm just saying. Okay. Let's say she was in the Armed Forces. Yeah. You know what shell shock is? Mm-hmm. It's the older term for PTSD. Okay. From like World War I or II. Okay. Yeah. Alzheimer's, I'm assuming, is similar. I'm not saying it is, but it might be coined as similar to shell shock. What I mean by that is that forgetfulness. Okay. Mm-hmm. When you're forgetting, I'll give you an example about my mother.  Mm-hmm. Okay. Plank stare. She didn't know who I was. My grandfather, the same thing. That shell shock, if you will. Mm-hmm. Just forgetting, like, forget, like, you know, a blank stare. Mm-hmm. Nothingness. Well, okay. That's what I meant by shell shock. If you get shell shock, when you get hit like that, shot or something like that, and you're having PTSD, but you're learning that taking over your mind. Well, in this case. I think that one of the differences between Alzheimer's and PTSD would be that... I said it was similar in certain circumstances. Alzheimer's would be actually a physiologically degenerative disease of the mind and the central nervous system. Now, somebody who has a trauma of some type. I think afterwards can be physiologically affected. When my mother went into depression many years ago after my father died, I was very young, but I believe it was explained at the time that the grief continued, the depression continued. Can you say for a moment? This would have been 1978, 79, 80, going over through those years. And you start producing hormones and chemicals in your brain. In Dorfins? I don't know for certain. They were just saying that she had now started producing some sort of hormone or chemical physiological that was keeping her locked in depression. We have so much going on up here. We talked about, I said 200 billion cells. I'm going to say right out, flat out right now that applying for help through social security disability are mental issues. They are extremely biased against helping individuals with mental issues. If I were missing an arm or a leg, that might be a little different.  One which computer scientists and computer programmers and such stand in awe of because it's much more complex and 200 billion. Let me ask you this. Have you ever worked with a computer that has never had a glitch, that has never screwed up in some way or other? No. No. So if our human minds are that much more complex and complicated and so many things put together and I'm saying this I hope for the benefit of viewers out there, for folks who can't understand like someone who like me who suffers from bipolar type two that has a heavy depression element to it and it drains me of energy and some people. Sometimes we're extremely tired, correct? Yes, excessively so excessive fatigue and I have to rest more than I want to and I get angry because I want to be able to get up and I haven't been like I used to teach scuba diving I haven't been in about four years. It robs and to come back to our original topic Larry I think a lot of perhaps latent health disabilities that I had cerebrally have been triggered more by this incident of taking care of my mother and going through the caregiver PTSD and well I do take some medications actually but I don't have to say what I was not going to I will everybody in this world needs medication Well I think everybody in this world should think about meditation and then medication if we can change the way we think sometimes that changes the way that we feel. Pharmaceuticals to piggyback from pharmaceuticals with the killing of people they think because you have you we're going to need another show if you get me going oh yeah if you have a hang nail oh you need medication you know that's another that's another topic well go ahead I'll just say quickly how disgusting our healthcare system is when you're making profit off other people's misery and suffering and just put it there okay I'm sorry you said back to Alzheimer's Alzheimer's was your mother on medication for this? My horror hospice or something yeah they started to give more I mean she had diabetes as well and that's why I think there may be a link between this and the Alzheimer's and I think at first she was to help with the sugar levels was taking a medication I believe it was called Metformin but in the end for well over the last year of her life I was having to give her insulin shots and nobody else in your family would help they helped in different ways sometimes they help just by financially giving some money to help out if they couldn't give time and I have two brothers they have different lives that I do different responsibilities and different ways of coping with loss dealing none of us grieve the same or handle it the same way yeah yeah yeah and I have I'm sure at least one of those brothers that's raised in the the macho world of men can't cry we live in a society where it's okay for for males to get angry to deal with issues but they must not cry and women it's okay for them to be sad about issues but they must not get I remember growing up my father if I cried my father said oh I'm gonna give you something to cry for you know so we were never able yeah go ahead something has to be done about this I have I'm going to reach out myself again to Alzheimer's association you want to give the number and I can do that would you like me to do that can I finish what I was about to say go ahead sorry I would like to make myself available as some sort of spokesperson for having a pretty good education being a pretty good communicator I'd like to think nobody knows words I know the best words well so there's one guy I know who knows the best words better than I do but we won't mention his name but I'd like to be able to be out there as someone who's been through this who can articulate and advocate for people who are going to be in this similar situation or those who are in it now it's left to a friend of mine was a nurse up in Alaska for a while and she came back and I told her about having taken care of my mom she'd already passed and this woman said you know it's great what you did because she saw so many elderly people in the hospital there never a visitor just forgotten just yeah or for some reason I would um I'll tell you what it took its toll on me as I said emotionally physically that if I had it to do all over again this was my mother I would do it all over again I would just try to do a better job than I did the first time and now I'd be happy to give you your contact information first of all I am not in any way shape or form in an official representative of them but I just want folks to know that this is out there as a resource source for them there is an associate at Alzheimer's Association of Vermont and the website is www alz.org backslash vermont all lowercase I think they call that a backslash is there a number www.alz.org backslash vermont entire word written out all lowercase and you can reach them at this phone number of<PHONE_NUMBER> okay the number for the number for um the number of website for Alzheimer's Vermont is www.alz.org backslash vermont uh b e r m o n t the full word or<PHONE_NUMBER> that number again is<PHONE_NUMBER> this puts an end to this edition we would like to thank our sponsors Green Mountain Support Services Washington County Mental Health and Champlain Community Services thank you Dr. Brett Campbell for a PhD for joining us I'm Lauren Seiler I'm Lauren Seiler see you next time for the next exciting edition of Abled and on Air coming up in a couple of weeks the University of Vermont has a graduate certificate in disability studies we will find out more about that through the University of Vermont and thank you for joining us on Abled and on Air I'm Lauren Seiler see you next time Abled and on Air major sponsorship was given by Green Mountain Support Services empowering neighbors with disability to be home in the community also sponsorship was given by Washington County Mental Health Services where hope and support come together and Champlain Community Services of Vermont