 We made it, it's a new season of programming at the library, so glad to have you here. I'm Michelle Singer, I'm the adult programs coordinator, and um... You guys are matching. Well, we did that on her video, really. She's in the shoes. Tiny bit of housekeeping, you know there's a restroom in the back, there's also some water in the back if you need it. Thank you to Orca for taking us tonight. We're so happy to have Jane down here with us tonight for to read from her book, All Time is King. It's so cool to hear that you have such a history with the Kelly-Covered Library. Welcome. Actually, I think it was my grandmother who was president of the library and then my father was president of the library for many years. Well, welcome to the Kelly-Covered Library warranty. What can I say? Anyway, as I was telling Michelle, my father gave me a key to the library and I used to come in on Sunday afternoons by myself when I was in high school. Don't tell anybody. Anyway, thanks everybody for coming. And I'm... I thought I'd see all kinds of people I knew given that I grew up here, but I'm the journalist. Do I think you're the only one who knows? I think. Anyway, thanks for coming. This Alzheimer's Canyon was actually written by a co-author with my husband, Skye Yardley. He had dementia and he chose to write about it. When he was diagnosed in 2016, he was 66 years old in an otherwise perfect health and it came out of the blue, no family history, and he just dove into this instead of being in denial like so many people are who have dementia. He wanted to know everything about it. He read every book that the Burlington Library had and we were living in Burlington at the time. He talked to people about it. It's a tiny picture on the back of the book, but I knitted it in his brain hat and he would wear it and people would say, oh, I really like your hat. I should have brought it. Anyway, he'd say, well, let me tell you about my hat. I have Alzheimer's and people would say, oh, okay, goodbye. Or they would say, oh, God, my mom had Alzheimer's or my wife has Alzheimer's or whatever and it was a conversation starter. And then he just dove into writing and we had a blog and the second year after his diagnosis, we went on a nationwide speaking tour speaking at 25 Unitarian and UCC congregations and doing workshops and sermons until he wasn't able to anymore. He just wanted to be out and he wanted to find his people and he was so honored that at almost every congregation somebody came out and said they had dementia whereas they hadn't felt comfortable telling anyone before that. So he was very proud of the work he did and then as his illness escalated, I found I was unable to take care of him. I had been, my first career was as a registered nurse and I had worked in a memory care facility so I was like, yep, I can do this, no problem. Except he started having hallucinations 24 hours a day and he really liked to wake me up in the middle of the night to tell me about them. They were generally happy hallucinations. He was, in the daytime especially, he communed with nature. The trees had names and they talked to him. He writes about it in the book, the flowers. I mean, it was like, it was really amazing but he would wake me up in the middle of the night to tell me something and then he would go back to sleep and I wouldn't and I got so, I wasn't getting any sleep and we were living in a duplex in Burlington with our son and his partner and Sear, our son said, you know, I'll tag team with you and we can switch nights and it just escalated and Sear finally said it. You know, I thought taking care of Skye would be all right but I didn't realize it would involve not sleeping. So we knew the Arbers in Shelburne which is a memory care facility has a respite program where people can stay for two weeks to two months to give the family a break and Skye and I had gone on a tour of the Arbers when he was early diagnosed but we went back for another tour, spent a day, he went to activities, we had lunch and he said, sure, you know, I'll do this so you can get some sleep. You know, I'll go for a couple of weeks and I was like, thank you. I'm going to lay on a beach and read novels and drink cocktails and get some sleep and he went into the Arbers on March 10th, 2020 and you all know what happened after that. So not only did he stay there for the rest of his life I wasn't even allowed to see him until the end of June and that was six feet apart outside Mastin Gant and you tried doing that with somebody with dementia, it doesn't go over well. So the last year was hard. He died in February of 2021 and I was allowed to be with him the last three days when he was dying but the pandemic kind of screwed things up but Skye was extraordinarily happy at the Arbers because he wanted to find his people and there were his people and the staff loved him and he loved it there. He never asked to come home. He never tried to escape. He just settled in and at that point he didn't know our home was our home so he was lying there because he never, you know, that was home all of a sudden and the staff told me a wonderful story that so at the point he was at the Arbers besides all the hallucinations he had reached the point where he physically couldn't take care of himself. He couldn't dress himself. He couldn't beat himself. He was in diapers. He walked with a shuffle with his head down but if he felt a staff member was agitated or upset he would walk up to them, stand next to them calmly and then turn and say, okay, can I help you? And they were like, this is the most amazing thing ever that he could sense that even though he couldn't do all those other things and they felt like they learned from him that they took up doing that with the residents who were getting agitated so it was like, oh, Skye did it. Good things for the world. So anyway, after he died I organized the blog stuff and myself a publisher at Woodstock and that was great and they had a wonderful graphic designer my daughter Dana and Dana's good friend Marisa was my editor it was very exciting, it was a great process and it's called Alzheimer's Canyon that was Skye's metaphor one way in and no way out and he wrote 11 episodes of the Alzheimer's Canyon parable about this guy that finds himself being flagged off the highway so I'm going to read that first episode of Alzheimer's Canyon and there's some salty language just to warn you Alzheimer's Canyon, the arrival WTF, this redded off-ramp isn't on the map or the GPS either and actually there's no choice the huge reflective barrier informs me that the highway ahead is closed road ends this grubby detour is my only way out of here sure enough, there's Dr. P wearing a highway patrol outfit directing traffic making sure I get off the interstate now kind of a pain in the ass because I've been making good time up on the four lane across the high country the driving has been easy spectacular at times road and country, maces, buttes, purple mountain majesty you know all that stuff the road signs out here tell you the altitude when you enter the next town and I've been enjoying how I've been effortlessly climbing up and up without any perceptible strain on the vehicle nice but now this detour, WTF indeed I mean planning my trip I knew that Alzheimer's Canyon was in the area but I just wasn't all that interested it's an old person destination, right? and whatever else I am I sure don't see myself as elderly but again, there's no choice I know Dr. P isn't going to let me camp here on the interstate exit he's got to keep the traffic flowing Dr. P gives me a friendly but authoritative wave as I pass by it's only as I'm gaining speed on the narrow bumpy pathetic excuse for an off-ramp that I notice that the other highway signs say one way, no U-turns approaching Alzheimer's Canyon drive with care watch for slow-moving vehicles I checked and this road I'm on isn't even on my fold-up map the canyon itself is on the map though and if I read it right the thing is phenomenally huge especially compared to the skinny track I'm on to get there this approach road is pleasant enough if a little lonesome good thing is posted for one-way traffic because there really isn't room for anyone finally a huge billboard lets me know that the Alzheimer's Canyon Visitors Interactive Center is just ahead also parking lots one through 275 good afternoon how can we help you ask the smiling AmeriCorps worker behind the counter well I guess I could use a map or a guide or something I respond of course we have these guides to the canyon itself also accommodations will you be camping in your RV I don't have an RV just my own little car I only got here because of a detour on the interstate well yes we have options here for you for instance you could try the homeless encampment in area B past the dumpsters they may have room for you under a piece of plastic they're always getting new sheets in over there or if you prefer the hotel they have a spot is $12,000 a month or maybe there's a waiting list I really don't know well actually I was trying to work some of the interactive exhibits over there and I think they might be broken or maybe I'm not running them right oh you're fine they don't do anything unless you're a caregiver the attendant grins unless you've got grandma out there in your RV I don't guess you're a caregiver so since you aren't I guess you're a sufferer and we really don't have anything for sufferers but I don't have an RV well if you're in the market we have a good selection of generally used motorhomes right now in area E well can I just look at the canyon while I'm here of course that's what this guide is all about oh yeah I saw that one I couldn't make any sense of it the only English words on it said start here exactly it tells you everything you need to know start here sure sir but where right where you are but wait how did I find the overlook the vista whatever don't worry you already found us we're all set now she's grinning again but I'm getting irritated with this whole Alice in Wonderland routine look have you even got a guide in English sir of course it's in English you read it yourself no no no no you've got a big pile of typos here young lady see it says start here and the rest of the map is blank no trails no landmarks nothing I can't even use my compass it's totally useless sir if you're anxious I'll get you a prescription in the meantime you may want to get started started doing fucking what man I'm ready to be out of this place well sir everyone's path is different we can't predict what yours will be like except that it's all downhill from here so anyway it goes on to have so many adventures and I'm sorry that you know the muse stopped at episode 11 but it really in retrospect it followed his path even though he wrote it early on in his first year after diagnosis so anyway let's see what else can I offer did he write all the chapters up to a point he wrote most of it in the beginning I wrote maybe the first year I wrote two or three things you know from my perspective as his paths and he wrote until a year and three months before he died and at that point he wasn't able to dress himself or bathe himself or get into bed by himself but he could still write it was pretty amazing it took him a while but he could do that writing or dictating or how was he doing that typing on his computer the last couple ones were dictated well there was the one when I asked him questions and that was dictated but the very last one he wrote he wrote himself yeah here's a and some people who have early stage all summers have read this and said Sky nailed it according to their experience that he really described it well so this is a little short funny one Sky and I both are avid gardeners we've gardened our whole adult life so this is what happened when he tried to garden it's called Demented Logic a couple of weeks or so ago I decided to plant some fall spinach in the garden I had some space and the weather was still good so after checking with Jane I bought some seeds and prepared a place for them because I remembered being forgetful lately exclamation point I carefully followed the planting directions on the packet including marking the area with good sized steaks and then I waited and I waited some more and more these brand new seeds were just not coming up despite frequent watering I think and good wishes not a single one but I remember I was so careful making my rows laying the seeds in there just like the package said to do now thanks Sky read those neurons up what exactly do I remember doing getting out the seed packet yes pulling out the rows yes placing the seeds at the proper depth yes covering the seeds mmm no now wait maybe I did plant those seeds I mean it would make sense if I did after all I did all the other steps I think but it would also make sense that I didn't after all there was not a single spinach plant to show for it the memory trace for that short activity does not seem to still be available if it ever was if I try hard call it up no well maybe perhaps common sense a cognitive skill now slowly but steadily dwindling away can help it used to when I was faced with puzzles and mysteries the first step in applying common sense is to gather reliable data paying particular attention to new or unusual or odd information in the case of the missing spinach the fact that not even one of the seeds germinated might be important what else well I seem to remember several of the key parts of the story numbers one through three I have a continuing set of thoughts I will call remembering quote these activities and number four complete blank and watering that wasn't even on the list again so what it felt like maybe I could trust my perceptions my little memory of this little event or more exactly my non-memory of a non-event I sure wanted it to all make sense logically it could make some sense maybe especially in a demented world spani coped up anyone? he's very funny he's very funny he did he had a great sense of humor did you figure out what happened? with the spinach? yeah I think he just didn't plant seeds I don't know or he could do like bird seeds things like spinach seeds I don't know you know whatever it's like whatever we had no spinach that's okay we lived with that but you had to you know what I learned was that you had to be prepared for anything to happen because you didn't know anyway he didn't have a tendency to wonder if that was not one of his thank god no only once I caught him going out the door in the middle of the night he was worried we were in this duplex in Burlington with our son and his partner and he was worried about Emma he wanted to go find her and he was headed out the door in the winter at 3am he was dressed though that was when he could still dress himself but no he didn't wonder thank god but he did eventually he always loved riding his bike riding his bike brought him a lot of peace and Burlington has great bike paths so he spent a lot of time hanging out by the lake and riding his bike and it was really tough when he was unable to ride he didn't have the strength to ride his bike anymore so he took up going on walks and one time he went out for a walk and he was gone for a really long time and I was like what has happened and I got a phone call from our dentist's office and he was lost but he recognized the sign at the dentist's office that was the last time he took a walk by himself but that was only about a month or so before he went to the harbors so yeah he loved the he loved the natural world so he died when he was 68 he was 70 and it turns out on autopsy that he had both Louis Body Dementia and Alzheimer's Dementia because they can't really they can only they can't give an official diagnosis until they do an autopsy and so that was the explanation for the hallucinations that came from the Louis Body side as opposed to the Alzheimer's side he was always cheerful then my brother he was oh thank god he was he didn't get a lot of people get angry or anxious he got anxious and this was well Carolyn you knew Sky but Sky never had an anxious day in his life until this happened I relied on him to keep me calm because he was a very calm person and that was the hardest part for him getting anxious because he didn't know how to deal with that so what kind of work did he do he was a family mediator and I think that's that still was with him at the Argers that he knew he could read people and help with conflicts solving conflicts he was really good at that thank goodness it helps to have somebody in the family that does that one that I wrote so I took up writing more the last couple of years this is called night time shenanigans last night in the middle of the night Sky reached over and padded me then abruptly drew his hand away oh I'm sorry he said I thought you were Jane I am Jane oh good he said and went back to sleep night times are always an adventure around here these days and preparing for bed has become a new experience Sky no longer remembers how to get ready for bed so I've made him a written checklist brush teeth pee take melatonin take off clothes get into bed take off glasses put glasses in glasses case put glasses case in bedside stand drawer I haven't yet had to supervise teeth brushing and peeing but once those tasks are done I do have to escort Sky to his side of the bed he often can't remember where and how to get into bed actually the get into bed activity is much more than that I have to direct Sky something like this sit on the side of the bed swing your legs up onto the bed sometimes that's in the wrong direction so I have to be ready scoot your butt down and I point toward the bottom of the bed when he's far enough to lie down I no longer tell him to lie down because then he continues to scoot his butt down I've learned to say now lie back once his head hits the pillow I cover him up remove his glasses and stow them safely away he no longer trusts himself to do this step and I hope he goes to sleep and stays asleep I never know the melatonin has decreased his nighttime physical agitation and attacking and some nights he sleeps through the night and wakes up at a reasonable hour then there are the other nights two nights ago he woke me up at 4 a.m. to tell me we had to go outside and dig up the water line but it's still dark we can't do that now but we have to the water main is broken there's a tree down on it whatever it's dark we can't work in the dark I'm trying to play along but we have to if he insists check all the faucets I get up turn on all the faucets the sound of running water does not seem to soothe him the water is fine no no we have to fix the water line I try something new we're in a city public works will take care of it we're in a city? yep and on and on we went Skye get more and more agitated about the broken water line and despite me holding him speaking to him soothingly either playing along or giving him facts nothing worked I gave up how about some coffee I asked that sounds great Skye and at 4.30 we were up for the day coffee in hand the lights on and me reading from the online New York Times finally soothed him even though the story was about Iran in our almost-war he had his first nap at 8.45 and mine was at 11 expect, be unexpected I'm curious have you found like playing along is the way to go or debating is the way to go no playing along is the first the topic is to play along playing along unless it's something dangerous and then you need to divert the person like when he was going out the door because something was wrong with Emma I had to tell him that Emma was okay and lead him back to bed but yeah, no you play along I'm glad I have a theater background it's all about improv really you know that's a common trait or experience with others or that's a new topic yes and that's what the professionals are being taught now is don't ever argue with somebody just go along with it unless I say it's a safety issue great, thank you the last year at the Arbor's he would call me frequently but he was always traveling and he was calling to tell me where he was and what he was doing and he was in Paris or he was in Ontario he was in New Orleans he was in White River and he was about to get on the train and come home and he was always so happy just tell me about where you are he loved to travel it was something he did a lot he could easily call you yes, because of the pandemic that was how the staff was handling family and contact so the staff had a phone for the residents and so they would call me he didn't dial he had lost his ability to use his phone or his computer a year before that and it sounds like I'm just thinking where my mother is they locked everybody in the room they could not leave the room for a year all the meals were brought after the COVID the Arbor's had people could move around freely but nobody could come in they could leave your room the Arbor's has two wings and they did people had to stay in one wing or the other wing I have to give them a lot of credit because they were so used to the families coming in every day to help them and then it was just the staff and luckily nobody ever got COVID there it was incredible does he talk about in the book how we first noticed that things were starting to change I talked about that I think it's something we all worry about right and I described this in the book he started worrying about his memory in 2012 but you can go online and take these tests and he would take it and he would do fine and all the recommendations about eating well and exercise and blah blah blah and he already did all those things so he just chalked it up to maybe he wasn't really paying attention and it wasn't until 2015 when I realized he had lost his spatial abilities and we were avocational carpenters at that point we had built five houses and we volunteered in New Orleans after Katrina helping people rebuild and this was happened at Dana's house this guy and Dana were laying flooring and I could hear Dana I was in the other room painting and I could hear Dana saying sky that's not how it goes this is not how it goes and I thought sky doesn't know how to lay flooring like he's laid a lot of flooring and at that point he was encouraging him to get tested Dana started encouraging him to get tested he lost his sense of direction he couldn't back the car up it was just really weird and it wasn't until we were renovating with duplex in Burlington with our son and his partner and we were doing all the carpentry work and sky realized he couldn't do carpentry work anymore and he's like okay I'll get tested because that was something he had done for 40 years and it was all mental inability not physical he would take a measurement and he would write it down and he'd go out to the saw horses with the lumber and he'd pick up the skill saw and he would have no idea what to do yeah in 2018 we managed to build a house I was the brains and he was the brawn basically carpentry work and he carried lumber and helped push up walls and we managed to do it and we'll need to talk about the progression a little bit say more my brother has dimension and I'm thinking about him because he's in Mexico you know how it progressed with him possibly well everybody's different and with sky he seemed pretty much himself except for you know losing short term memory he's still a long term memory do you have anything to offer about how it went I mean that you guys used to play cards a lot and then he couldn't play cards and you go hiking but then he couldn't go hiking I think it's surprising how many things we do in our lives are mental activities so like the act of hiking he was physically strong enough to do it but was just like there's a rock and another rock and I'm supposed to figure out where to put my feet around these rocks that's too hard to do I can't move my feet because my brain can't figure out how to navigate the trail and I'm like oh hiking is a purely physical activity but no it's also mental so I don't know I think I mean I think it goes back to uh she just did some sermons and she just wrote the follow up dementia sermon about how you retain yourself like yourself self who you are until the end and that seems to be true that like this ability to mediate conflict and to tune into feelings and like I visited with sky two days before he died and we like sang songs together because he and I have done that for forever and those things stayed but like reading maps and losing the spatial awareness and how to play games and I think yeah I don't know I think it was those more practical but he don't even really care about practical things like this was a man who had to feed himself on a piece of bread and cheese and an orange just and like wander around and meet people like that was more interesting dealing with finances or like logistics or like you didn't care about logistics I don't know and more and more anxiety I think the progression of that too he knew he knew us till the end which I think is very unusual but I was certainly very grateful yeah yeah he did you think the anxiety comes from I'll say therapy unknown if you're losing your sense of memory that you're concerned you don't you're afraid I would be afraid of what I don't know that I used to know but you get anxious yeah yeah he would and like Dana said like hiking wasn't just hiking like all of a sudden you know and once he started having hallucinations he started having double vision which made that worse and he blesses heart once he was diagnosed he no longer wanted to drive long distance he was still driving down in Burlington and we had talked about that like you know when is it going to not be safe for you to drive anymore and there's a thing I don't know if I maybe I have time to read it where he had a hallucination while he was driving here I'll read it voluntary driving ban has it finally arrived sorry the end of 53 year driving career and is career the right word? yes I think so I'm having no trouble at all remembering the excitement of the year I was 15 the year I came eligible to take the test for my learner's permit for some reason teenagers in Massachusetts had to wait not until 17 not until 16 15 and a half was good enough the waiting was interminable in my case and besides it felt like there was some kind of magic going on okay I was too young to drive and the next day it was okay I just had to take a multiple choice written test and a vision test and then I could climb behind the wheel of the family Chevy Impala a tank of a vehicle if there ever was one is this really fair to the other drivers on the road? I mean the ones who knew what they were doing I had collected a lot of semi-useless book knowledge about cars and motors I was all over my two magazine subscriptions popular mechanics and mad back then I was able to identify every American car by its radiator and could tell you more than you needed to know about the evolution of tail fin design and placement and hood ornaments fascination, fair or not fair the process of getting behind the wheel rocked and split open my world I remember realizing I remember realizing that my driveway was intimately connected to virtually another road in all of North and South America I just needed to make the correct turns and keep behind gas suddenly my traveling options seemed boundless realistically though I wasn't going to buy all that gas and I didn't even have a car but that didn't stop my horizons from expanding then I stumbled upon a most elegant solution to the gas and car limitations hitchhiking you know this is late 60s early 70s unfortunately I can't remember my first ride but it was the first of many hundreds of encounters that served to consistently define how I understood and appreciated this American world, amazing world I was the American boy taking off in a car to find himself it took over a decade for me to afford my own vehicle but I got there eventually parlaying my love of the roads and unpredictable adventures into paying work sorry this is the part that gets emotional that involved a weekly round-trip truck route from northern Vermont to Boston and points in between best of all those roads led me to Jane my amazing life partner an out-care partner I had a restaurant and he delivered my produce fine romance anywhere making the transition to not driving should have been easier though I haven't noticed hood ornaments in decades a car is no longer the key to enable access to a more wonderful world a car is a car but have I mentioned the hallucinations and how about the double vision it doesn't happen all the time but enough to get my attention the last time I drove I slowed down for a pedestrian making her way across the city street I tried to make eye contact as we met but in the literal blink of an eye she smiled and vanished when I got home I told Jane that was my last time behind the wheel as time goes on the hallucinations and double vision come more often here's an example sitting safely in the passenger seat I noticed two tractor trailers right in front of me they're shouldering side to side into each other and I can't understand how they can keep this up without one of them at least going into the ditch sure enough the one on the right suddenly lurches rightward and plows through the woods without slowing a bit the truck on the left is bashing and crashing into whatever there is to crash into on the interstate I tense and dreading myself for a fireball of disaster which never materializes these experiences and others like them make it clear that my driving days are done besides Jane became the principal driver once Dr. Alzheimer came on the scene really this change is another example of a practical sensible adjustment to a permanent new reality still it hurts sometimes it was not easy being the driver when he would like to hang out with me about these trucks about to have an accident there were no trucks on the road it was just us so that was you know the hallucinations and double vision he couldn't play the piano anymore because of the double vision which was really hard for him because he loved playing the piano so he just had a great attitude he had a fabulous attitude thank god for small favors this was hard enough to handle if he had a bad attitude I hate to think I know you said what was the span of time when it really became an issue 21 into the long two years? he was diagnosed in the summer of 2016 and he went to the Arbers in March of 2020 and died a year later yeah did he write was it just blown away that he could write and have a sense of humor like did he do a lot of writing before he was diagnosed people a lot of people ask me that he was a really good writer but he he went to Amherst for college dropped out with a semester to go via therapy like people did in 1972 and I think he was right that he was channeling his Amherst professors that people were going to criticize him and I remember when he took up because before this he didn't really like if we went on a trip he might keep a little journal or send people emails he wrote a few sermons but he really took up writing seriously like he and his girlfriend at the time lived in Iceland for a year in 1976 77 and he you know wrote a whole memoir thing you know about I've got to write this stuff you know what I still remember anyway but he wrote really well and I'm glad he finally got to do it because he really loved with an amazing sense of humor a complete amazing sense of humor yeah no it's you'll laugh and you'll cry just like me other questions was it a solace or therapeutic to you to go through this process with him of writing well see I'm the writer this is my fourth book so writing comes, it's one of my joys it comes easily to me and I've kept a journal since I was 16 and you know writing is what I do so I was really glad that he wanted to and so I held back you know so that it was his work so his name is on the front of that strange way now it's both of us co-authors not just me was there any family history other relatives you know not really but both his parents had neurological diseases his father had MS his mother had narcolepsy and his sister has MS and so I just wondered if there was a neurological weakness though nothing in the other generations you know his aunt died in 20 when she died 2017 and she was 92 and she died from being old oh so yeah no it was a complete mystery and his doctor at the Arbors the Arbors had their own doctor and she was fabulous after the autopsy we had a long conversation but it was like nobody knows why this happens it's a mystery yes in the first thing that you already talked about Dr. P who was that that was Dr. Pettilbury yeah I'm wondering for people who are just learning or maybe getting into this year's book a good kind of a user's guy if you will hey here are some things to prepare for well I like to think so and I did and I did write a sort of Jane this guy's helpful hints about how to deal with dementia diagnosis it's a pretty good list of like what to do and what to expect like getting financial affairs in order talking with doctors about all your care directives I like that the book is the personal experience but then at the end there were like those like practical things to do too right you know I learned a lot from this email I'm a publisher I didn't even know that hallucinations were part of the disease and so just hearing about that but not only learning about that but then reading his actual experiences with the whole chapter where he describes the garden gnomes that he's talking to it's just it's like this you know beautiful sad thing yeah he was so frustrated that the rest of us couldn't see all the garden gnomes I want to talk about your garden gnomes I was like really yes garden gnomes I love them were they good or are they mischievous no both mischievous yes it really makes me wonder though what is this disease you know it's attacking your brain but are there other worlds that you're holding like he was in a different reality he was in a different reality where is that reality it's really quite an interesting trip I sometimes wonder if folks with dementia in previous times we've already had this language were classified as shamans or mystics or spiritual leaders of some kind who were accessing other planes in some way I guess so but I'm experiencing Alzheimer's with my mother and I'm just so in awe of the writing and my mother was such an avid reader and she can't read I mean she can read but she can't pertain and she doesn't understand meaning and yes guys it was so so painful for him when he couldn't read anymore because he loved reading yeah when he mentioned he would comment about the traveling somewhere was it in reference to past travels or this was completely fabricated like he's never been to Germany he traveled extensively so most of it made some kind of sense but when he told me he was like in Northern Ontario I don't think you've ever been to Northern Ontario I've been to Northern Ontario it's not a recall of an actual experience it is a dream state it was something like we spent a lot of time in France and so one of the calls was he was at Charles de Gaulle airport and he lost his passport but I get him a new passport it was like sure right after he got diagnosed we went to France on a long planned trip and because he lost his spacial reasoning he couldn't read a map he couldn't figure out how to use his metro ticket but he was fluent in French and he could still talk to everybody in French you know like that retained whereas my French is terrible and that's so interesting how somebody's brain that still works really well and other parts just go away and you don't ever know from person to person how that's going to manifest my brother was like that he spoke five different languages and we went out to breakfast with him and there was a Greek with a waitress and he started speaking Greek out of the blue there you go the brain is a mysterious thing completely what's the financial aspect of it that was pretty uncomfortable the financial aspects the harvest cost $10,000 a month and that's just the room fee you know medications, diapers other stuff is on top of that and one of the things I said in the helpful hints I mean as soon as he got diagnosed I started a special savings account because I knew someday it was either going to be home care or placement somewhere and that was going to cost money you know if you're poor you can it'll be covered by Medicaid but if you're not poor you're going to cop it up and he was really at one of the phone calls he called me and said I'm trying to figure out how to do some kind of like barter thing here to cover the cost of me staying here some kind of volunteer work he said you know because it costs $300 a month to stay here if only he was nothing wrong with him out of the blue he just turned 66 and you know we were busy having a life traveling and we were spending winters in New Orleans still helping there in summers in France and I was like oh wait we don't get to do that anymore now any support groups that you guys were a part of excellent question no I asked Dr. P I was hoping that was in the book it is I'll tell you briefly what happened I I asked Dr. P at the visit point and what services do you have at the memory clinic I don't know he said this is a man who had run the memory clinic for 25 years he said maybe you should get an appointment with a social worker I'm like okay you can get an appointment with a social worker which took six months because they had one social worker for 800 families and she apologized once we got to see her no we don't have any support groups here so we found a support group for couples except they it was five couples and they had been together for five years and we weren't accepted as new people and so we started our own support group and we we did that for four months but it wasn't successful because the people with dementia didn't want to talk about it the families wanted to talk about it and Skye just was desperate to meet other people with dementia to talk about it so we finally gave up that and he and I both ended up on zoom support groups of people across the country there's a program called dementia mentors and so he was on a weekly zoom until he didn't really understand zoom so he didn't do it for that long and he found it a little it was more like a social club and he really wanted to talk about hey we're dying and actually he wanted I went through several therapists and I didn't find anybody I liked I found a therapist for him who said she specialized in elder care and dementia and he wanted to talk about dying and she said I'm going to talk about your life you're going to have while you're still living and he's like I want to talk about dying and she wouldn't go there so that was unsuccessful but I was in a wonderful caregiver support group that met on zoom we met once a month and that was a lifeline for me and then it's other retired ministers who were caring for somebody not necessarily with dementia but cancer or purposes and as I say some of us have graduated and we started a grief support group for the people whose spouses have died there's also a lifeline that's once a month on zoom it's really great to be with other people who lost their spouses there's so much in common even if people died from different kinds of diseases and situations so yeah hopefully I know there's a new support group that's run this is in Chintin County like I don't know what happens in the rest of Vermont but the social worker from the Arbor's has started a support group outside of the Arbor's separate from the Arbor's it's something assessed really needed completely I did an event yesterday in Palmford and they said that there's a really good support group down there at one of the nursing homes down there yeah you mentioned earlier something I learned tonight the two different types of Alzheimer's there's different kinds of dementia Alzheimer's is one kind it's the most common kind of dementia Lewy body dementia is another kind that's not as common and Sky had both which is highly unusual with the other there's also frontotemporal lobe dementia vascular dementia and then people with Parkinson's and ALS, Lou Gehrig's disease also develop dementia yeah the differences are in how it affects your memory and in what parts of the brain it attacks and how it affects in the brain the biological changes in the brain yeah after any medicine that was derailed there are a couple medications that may delay things in some people and Sky tried one of those and it made him mildly ill so that lasted a week and he said no more and he kind coming up with more stuff but nothing really has been shown to really work he was and well it reminded me of for those of you in this room who have been pregnant it reminded me of the first trimester of just queasy all the time and whatever new you're going to grow up and feeling exhausted so we're like yeah, there's no more of this sure bear upon bear thank you bear upon