It is projected that by 2050, 16 million people in the US will be diagnosed with Alzheimer’s, requiring 80 million caregivers and generating total costs of $1.1 trillion.
In observance of World Alzheimer's Day (Sept. 21), we're revisiting this "From the Vault" episode of Big Blend Radio featuring Trish Laub who discusses her book series, “Comfort in Their Journey,” that provides practical guidance for providing care, including for Alzheimer’s, through end of life. The series includes, “A Most Meaningful Life,” “Peaceful Endings,” and “Through the Rabbit Hole.”
Trish Laub is on a mission “to help others see that even with Alzheimer’s the possibilities are limitless and a meaningful life is possible, that death is due its dignity, and that everyone deserves compassionate and dignified care.”
While providing care for her parents, Trish found that there were hundreds of books and resources offering advice, but none that made the information easily accessible or provided usable solutions. The “Comfort in their Journey” book series is what Trish needed: forthright information and answers to everyone’s questions on topics that no one wants to talk about.
More: https://www.comfortintheirjourney.com/
[Music] Hello and welcome to Quality of Life Radio, hosted by Lisa and Nancy, editors of BigBlendMagazines.com. Hey everybody, while the gong is spoken and that means you're here listening to Quality of Life right here on Big Blend Radio and very excited our special guest today is author Trish Lobb and Trish is on a mission with her book series. It's called Comfort in Their Journey. She is on a mission to help others see that even with Alzheimer's the possibilities are limitless and a meaningful life is possible that death is due, its dignity and that everyone deserves compassionate and dignified care. The Comfort in Their Journey series includes a most meaningful life, peaceful endings and through the rabbit hole. Trish also hosts presentations and workshops based on the books as well as consulting services. I encourage you the best thing is to go right to her website because if you are going through this as a caregiver or know someone going through this or anybody how many people don't have a friend or family member or you know just as someone you know that is going through this part of Alzheimer's and being a caregiver so the website is comfort in their journey.com she has so much on their tips you can watch videos and also contact her through there so welcome Trish how are you? I'm fantastic thank you for having me. Hey now did I get your mission right? Yes you did. I'm like this is well so strong mission and it's it's interesting you know we talk about Alzheimer's it seems that it doesn't seem like it's going away. Alzheimer seems to be on a on a growth cycle unfortunately. Absolutely the projections for 2050 are actually staggering with the increase of it and the rate at which it's the rate at which diagnoses are increasing. And yet they don't know why or how with all some how it happened? No it's interesting every day during the time when I was taking care of my dad I stayed away from that kind of information very strongly and when I decided to go into this project it was you know I was very clear that my mission is to help people who have already been diagnosed but on the fringes through social media I do see different articles and it does seem like to me anyway that the number of articles being published in regard to kind of different theories on it now of different things that might be causing it that I think the the research is opening up to move away from just the tangles and the tau and all that into what lifestyle things could be affecting it so I think you know they don't know that is the truth they don't know and they don't have a cure. There are some people who say that it can't be treated I believe that my dad's treatment was effective. That's interesting so it was effective and so this yeah your life kind of went through a whirlwind change ending up as caregiver right as a prime caregiver to your dad and your mom. Yes absolutely I had moved across the country with my husband because he had retired and we'd always want to live in Colorado and it was about 48 hours later that my dad went into medical crisis and for yeah it was it was pretty crazy a five-day skill rehab stay turned into 63 awake 24-hour shifts and whoa he was over medicated mismedicated. Alzheimer's is very very particular. You make one little change to a regime and things can just go into full board tilt very quickly so that happened very unexpectedly. Wow wow it's interesting because there's dementia and Alzheimer's and people say it's the same thing. To me it's there's the I think when you we look at any of this even if it's cancer you know the heart disease we've been in several situations you know in life with maybe not always been the prime caregiver but we were caregiver to my step-grandfather and he had a stroke and he was living in Mexico him and my grandmother and he's from the Guernsey the Channel Islands and was partially deaf he didn't understand anything anyone was saying and he did he was not the nicest person let me just put it politely like that and none of it I mean he was yelling at everybody it became this nightmare of trying to understand we're trying to understand we just like drove down there and basically all hell breaks loose you know and so I think this is what's so important with what you're doing is if you're not prepared you don't know anything about it you know whether it's Alzheimer's or not I believe that and obviously Alzheimer's is what you're focusing on this too but we're as a caregiver suddenly in that role I mean you're now dealing with the medical situations the doctors and how to follow up on doctors or do you follow up and what are they talking about and they don't give you that much time and oh yeah and then it's like oh wait a minute now you got to play insurance now what happened is to your job at this point you know all this and what's happening emotionally that is the biggest thing I've seen and I have a friend now going through this as a caregiver the emotional strife of this is really hard it's really hard on people so I really really appreciate what you're doing in this to go into that that world wind of that phase and then be able to share it you your books make it down very simple for people going through a situation and you talk about that also on your website and your videos that people don't need to read the entire dictionary and they don't have the time during this kind of crisis. No when I first started writing the books and I spent three years trying to talk myself out of this but when I first started writing I had a couple people say well you know there's all these resources available and there are and especially now on the back end of the trip I'm realizing that there are fabulous websites and groups and organizations but I you know my world blew up and I didn't have time to find them nor did I the big thing was I didn't know the language you used to find them and so I specifically wanted to gear the books towards people who are already in crisis although they're valuable to people on the front end so that they can get prepared so that you know for example the table of contents are very very detailed so someone can go in and read a two or three page sub chapter without having to read all of the text before and after it you can read the books front to end you know front to back but they're really designed to be reference books quick guides. Yes so people can pick it up at at what that point of need is what about when people are prime caregivers versus going through that changeover of do I put them in a nursing home or not do you see that happen that kind of conversation happen? I do and that's a tough one and I will say what what my mission was is is to provide guidance for people so that no matter what choice they make they have some information there so you know I am not somebody who can tell you whether you're a loved one should be kept at home or put into a medical facility or a residential facility or residential community rather sorry so nursing home is not the right words now so that's one of their nursing homes oh okay there's many different there's kind of a differentiation between like a senior retirement community or they'll call them you know continuing care retirement communities and I just saw my own kind of refer to a medical facility versus a residential community but yes there are definitely nursing homes the definition of a nursing home and the purpose of a nursing home and when a nursing home is used has changed very much in my lifetime which is you know six decades but so what I what I hope you know what I lay out in my books is if you if your families dynamics are such that you can keep someone at home these are things to consider if you've reached a point where that's no longer reasonable and feasible for a variety of different reasons you know financial work other commitments whether you have children then I try to lay out some of the questions to ask when you go to a medical facility or to a residential community oh very important very very that's that's one of the toughest challenge or toughest decisions that a caregiver has to make yeah because I think there's that you know like in a husband and wife situation for example there's going to be that oh we'll never you know do that to each other we're always going to stick by each other to the very end and then if there's like a guilt or like even if you need to do something because it's the best decision to make for someone's health or well-being or all kinds of reasons there's like an emotional guilt to it and then there's a lot of confusion so when you talk about that kind of that crisis thing happening um you know all time as patients there's a confusion where they just there's my grandfather my great my great grandfather my mom's Nancy's grandfather died out of fear when they took him from home yeah to a medical facility because he was so scared and he just died right there within 48 hours moving moving people after a certain point in their lives is very very challenging there's a much higher morbidity rate for that yeah so it's it's very difficult to do I mean sometimes you just have to do it but it's it's challenging yeah definitely do you think the Alzheimer's and dementia is the same connected dementia is an overarching set of diagnosis set of symptoms and Alzheimer's so think of an umbrella and then you have Alzheimer's you have bluey bodies you have vascular dementia there's something I have read that there's as many as 100 different forms of dementia whoa and so Alzheimer's is it accounts for about 70 percent of all dementia but to me to be really honest it doesn't matter to me which one it is yeah I mean you know my grandparents age you know their era they just brought their grandma home to live with them and they never labeled it and sometimes I think you know getting the to be as specific as a specific disease does help with some medications and some treatments and management but sometimes I think those labels well with Alzheimer's in particular that label is attached to a very very unfounded and negative and detrimental stigma so sometimes I think labeling things can can be a detriment now your first book is is a most meaningful life that's that's your first book that you wrote right and so that kind of goes from your story your family story it goes yeah it really probably I give us a little bit of background on my mom and dad who they were as people but then it really kind of starts when my dad was diagnosed and when he would actually have been diagnosed for a while before my mom told my sisters and I because of that stigma she didn't want us to think that he was less and so he was around 80 when he my my mom told us because we had to start being kind of preemptively you know seeing that he was safe watching out for safety he wanted to go someplace we just had to kind of find a way to go with him or you know just kind of be more aware and so she felt she had to tell us at that point but he lived you know he was treated prior to that and from the time I was told about his diagnosis he was treated for 12 more years oh wow the average life expectancy is somewhere between 10 and 20 years post diagnosis hey so then it really becomes how do you have the best quality of life for everybody involved including the patient the loved one going you know with Alzheimer's that could not have been better said yeah I was that hit that no right on the head yeah make people comfortable understand what they I mean that we were having this conversation the other day about you know if you know one of us got dementia Nancy and I you know we always talk about this what happens if you know we always have to wear a mother-daughter business we always have these backup systems and you know you're a business owner too with that your other projects too and you have to do that and we were talking about that it's like well you know I know that we are big on being out in the outdoors in nature and so are we going to remember that part of us like okay so she was saying well like if I get like you know that then you need to wheel me out into the park or something and we're going are are you going to remember that are you going to have that sense where does that boundary come or that that connection I should say not I think you just said the word it's a sense so with Alzheimer's it's not that they there's a lot to me there's a lot of misconceptions about it they don't lose their memory they don't forget everything my dad was actually creating six months within his past saying he was creating new memories and I have been told that wasn't possible he absolutely was he was meeting new people remembering who they were some of our caregivers but more so than a memory of being like in nature it is what they what they quote-unquote remember is the feeling it gave them the joy the joy and so somebody might not remember that they went hiking or they went we're out in nature a lot but you take them out in nature and they have that emotion that sensation absolutely so as caregivers you got to remember what brought people joy if it's music absolutely play the music see if they you know tune into that that vibe you know if you know they love jazz play some jazz you know absolutely everyone needs to go outside you know open the windows have some birds and flowers I mean that brings everyone joy doesn't it well and if you think about it when we start keeping people indoors they don't get vitamin D and there's a very large depression rate with any kind of chronic illness and we've just started keeping the people indoors where they're not getting any that some on their skin and their face and and all of that so yeah definitely if if at all possible and they're willing take them outside and that my mom you know because I wrote one of the books about my dad and all timers I mean people assume that that's all we dealt with my mom had stage four cancer oh I'm sorry and so it was the same type of thing we would take both my mom and my my both my parents lived to be about 90 before either one of them really I don't consider Alzheimer's being sick before they went into medical kind of crisis and so my dad went into it and then six months later my mom ended up with multiple life-threatening things at the same time so we really did get hit unprepared um you know we had to do full-time care for both of them but we would take them both outside on nice sunny days and heaven in the sun and soak up that warmth exactly I think that's and this was all in Colorado right yes beautiful Colorado it's a what a magic state you guys are way up and your mountain passes and I had had a few words and a few words oh I'm sure I know I was like don't take me now I'm not ready no some of those passes I won't go on no so you know when people want to wheel me out don't do that yeah no no but I think you're right to your point it's important to do what they were um whether it's Alzheimer's or stage for cancer what brought them joy before so you know my dear family they brought grandkids over and so you know my parents always enjoyed that um my dad it's interesting for Alzheimer's I always say that people you want to continue to reinforce the memories they had so we had a variety of different techniques and approaches to that we had a photo frame that played all the time and we had photos on the wall and they were all labeled and things like that but also go back to again back to what people love so for example the one story is that my dad we had caregivers and a caregiver came to the house with this orange like you know a child would play with this orange ball and I I was bad and I thought he's not gonna play with that and she threw it to him and his hands flew up and he caught it and he threw it back and I think it was the second or third time she did that he started weaving it around his head in between he had played basketball in college uh and all that basketball skill was still in there all we had to do was unlock it yeah that's that's the interesting thing too I've seen that um in different situations with friends and family members and um where you go in and especially because a lot of times a caregiver it's like one or two people and the person being cared for then it's you're kind of locked into a pattern like you were saying no patterns are good but then everything's the conversation may stay the same so you need somebody else to come in from the outside to kind of jolta memory um and have a different conversation because sometimes that brings something up that everyone's forgotten about yes you know and the caregivers are a lot of them are tired um that's the important thing too is how to um caregiver hairs really go through a lot it's exhausting and emotional so um I think you know not only having the information can really help clear that but um they need they need to take care of themselves too absolutely absolutely I think you know when I say we weren't prepared my parents did as much like legal document preparation as they humanly could have done my mom planned to take care of my dad and not have my sisters and I help and you know they had a plan it just went wildly out of control very quickly um but I think you know for the care give for for anybody now I mean the statistics are right now one in three people are caring for a family member well that's going to go higher so we're looking at almost a hundred percent so what can people do planning it could not be more important um plan but then on the flip side of that once you're in it you know exactly what you're saying I always say that the patient the loved one the person you're caring for is likely taking medication so what is the caregiver's medication and for me I know exactly what that is I have songs I can put on that will shift my mood I have I teach a fitness class at the top for 20 years that is requires when I teach it requires my full focus I can no longer have my brain and caregiving so it might be a cup of coffee or yoga or walking in nature or anything but for caregivers to really know what it is that that brings them back to a place of peace exhausting there's no way around that yeah it's exhausting and somehow just give yourself a break somewhere you know get help if you can you know then look that's really important I I mean I think my sister's and we all had to learn to ask for help we're very self-sufficient hmm ask for help as a caregiver I mean your trust me your your friends and your family and your network are out there clueless most of the time and how to help you just ask that's that's really true and if you're overtired you're not communicating well right and I have girlfriend that lived in Illinois I had moved here from Illinois she would just send me like a gift card to some some food place and it could not have been more valuable because sometimes that gift card made the difference between me eating and not because I just I don't know why I could afford to pay for the food I just I don't know why sometimes driving home late at night I would drive through with this little card and it just made me feel good and it made me eat yeah you know that those little things are like little reminders and to let you know you're not alone absolutely absolutely so even when people remote can just send a card or you know a text sometimes is great just thinking about you or and that can make the biggest difference in a day I agree with that I think that's it's like when someone does pass you know what do you say what do you do you never know what to say when someone says hey I've got cancer it's like oh now how do I handle this on the other side I want to do something but do I you know what do I say you know I always somehow go to humor you know just kind of it's oh yeah yeah no someone will say hey I've got stage four cancer I'm like well we better have a party and there you go it's not a good thing but to me I'm like we better party now you know well and actually that's really positive and that's one of the things that within our home we we had kind of a well it was more than an unsaid rule because we had nine people on the weekly caregiver schedule one of which was myself and one of my sisters and then we had seven other caregivers coming into the house and everybody knew the role was everything had to be positively stated or the approach had to be positive so you know you said hey have a party but I think one of the most valuable things I learned from a PA that's in palliative and hospice care the sentence is how can I help you exactly what can I do to help you I like that because I think for years I spent my time guessing it wasn't someone needed and that's not always the most valued it could just be move the pillow exactly it's exactly move the pillow I do blower water what about because of communication and the power of touch is also something so people know that they're still alive and loved and not you know because your body's changing you're looking different when you're when you're not well maybe losing hair you know all of those things so you need people need to I believe that physical touch I'm not a touchy feely person really at all but sometimes you just give someone a hug or just smile touch just hold their hand or touch them just that there is an energy that can give people more energy it's kind of like you know plugging in a battery you know it's absolutely a part of touch I think that's important for like my mom who had stage for cancer but it's even more important for people with dementia because again it's how you make them feel and that feel is literal so at some point my dad not did not lose the ability to speak but that is not uncommon with dementia at some point and so that touch is critical it's absolutely critical I mean you are literally you know exchanging energy with somebody and um we had a we had two sorry I just got some name I threw we had two we had twin 23-year-old young men who came and did awake nights with my dad towards the end of his life because he wasn't sleeping and I was not there that night but I got a phone call immediately that he they would come in and they would get him ready for bed and he never watched baseball but baseball was on in this caregiver 23 years old sat down and he held my hand dance hand through the entire baseball game oh sweet and my dad just sat there and beamed and it's that connection yeah absolutely that is so and you don't have to be a big hugger it can just be putting your hand really lightly on their arm or you know one of the things I see that gets lost very quickly is just look somebody straight in their eyes yeah I was gonna say that because that's a connection you're seeing into each other's souls you know absolutely but I've seen as and Nancy know we're talking about this too because you know we knew you're coming on the show and you know we're all like and we've both seen it in a friend um you know where you can almost see a shift like they were here present remembering things and you as you're talking all of a sudden there you can like literally see a shift in the brain through their eyes it's it and then all of a sudden they've gone to a different place I don't know yes yeah so I had a ritual when I came into my parents house um first of all I would stand the door and I would just literally take a second and let everything in that outside world stay behind me and when I walked in I had to be completely and totally present and I would my dad was usually in the family room my mom was sitting in the same it was a small area and I would put my hand up and wave at my mom and she knew what that meant and that'd be besides hi she knew I'll be right there mom I'm not ignoring you and I would walk over to my dad and I'd get down on my knees and he was in his recliner and I'd say dad look at me and he'd look at me and I'd say whose eyes are these because I look exactly like my dad like exactly I'm the female version of my dad and I'd say whose eyes are these and he'd look at me a little confused I said do they look like your eyes and I was like laser locked on his eyes and you could see the moment he went got it oh that like I had him the rest of the day all I had to do was get in and and you mentioned kind of the shifting away of things I mean my experience with with both my parents as they got close to their passage was that you know all the earthly things just fall away but especially with Alzheimer's um I just watched my dad was very jovial very happy guy um great guy but you know he had his irritants in life triggers things that you know he was just under his skin those all fell away and I really feel like that's interesting well it's interesting I feel I feel like I saw his soul yeah I know that sounds kind of wacko but no no I saw the essence of who my dad was as a person because eventually the stuff that you know the human drama that we create goes out the window because yes you know of time maybe we maybe that's the first thing we start we stop remembering you know you know I think you know um with a real loved one pass away a few years back and um he was he was my bass player in the band you know and um that we had and of course we had our little romance and it was a good romance and then it didn't work out that way because I wasn't having children and getting married during the normal thing you're supposed to do I'm going on the road I'm traveling you know so our luck wasn't that strong enough to you know first what we all had in on our mind you know our goals in life but um you know so we there's quibbles and you know there's things you drive each other nuts with right and when he died you know those became some cherished moments but those things just go out the window you know and it was a very unexpected death and um it just when you when you think about all those little things that we have those annoyances and um like you said those triggers they really do start to fall away and I think that it's you know when we talk about the different stages of life when you go into the elderdom and um you it is a new chapter and it's about looking at okay there's that quote I think it's a Buddhist quote that but this isn't um the end of the world this has just turned the page into the new chapter and you can start again every single day you have that ability and I think it's interesting when things like this happen in a family um we become a caregiver your whole life changes and it's scary it's freaked out it's all of that and then all of a sudden you start acquiring new skills you start looking at things in a completely different way so I'm not saying that it you know it's a good thing and it's a fun time but there are some positives to this absolutely yeah I wouldn't I mean I will say and I have said I think I said in one of the books yeah it was more challenging than all of my life experienced the 54 years combined you know I had children and stuff children and I've been married and divorced and you know my fair share of stuff it was more challenging than that but I would not trade it for anything um you can thrive through that situation um it is possible I mean I it can be an invaluable experience and and there I say there's jewels in the process with both my mom and my dad there were jewels there were things I got to see because I was there as a caregiver that I would have missed had I not been a caregiver I mean they're memories that I will have forever that and they were things they weren't planned they just it was an interaction between my mom and my dad or you know something goofy that happened and I'm not saying it's all fun but I'm saying there's there's good to it on the other side of all of this I think the hardest part either yes it's emotional to go through this with with loved ones but I think our medical system completely sucks with what what people have to go through I've known other I could say stronger I'm sorry that was hilarious yeah but you know it does I mean well uh let's just say this our current medical system and let me put a little backstory to this my family has always been ridiculously healthy my mom had a knee replaced my dad at angioplasty other than that we didn't have any experience in the medical system the medical system does not serve the patient no the medical system medicine is a business and in many many many ways it does not serve the patient or as you said it sucks it does because there's no fault it's like you'd think the amount of money that some areas there's no money you know I know doctors like you know all their money is really going to the insurance to keep their facility open there's all these different things the pharmaceuticals now they're having a joyride but the system itself you know I know a friend going through thinking it's like to get a test result it's a call and call again make a patient go there not have their appointment or sit and wait for 10 years next to someone who is who's going to give you something here let me give this to you you know it's my presence and then it's like the medication and it's so confusing I I you know I was telling a friend that was going through a lot of stuff I was like you need to take a tape recorder and record it you need to record let's get one of those little hand helpings and record everything they say you need to do it and let them know you're doing it and let's talk to doctors on shows about this and they're like that is a good thing it also snaps people to be aware we took a spiral notebook to every single appointment we documented we documented my parents from the hospital I'm glad you brought this up because this is really important we had a general notebook that you know went to doctors plans stuff like that whenever a parent either parent and at one point they both went within a couple days of each other went to the hospital we labeled a new spiral notebook and it was that medical episode but we did not leave our parents side in the hospitals my mom my dad clearly because he had you know he needed advocating for and my mom when she first went in the hospital was so ill she couldn't advocate for herself but we wrote down every single the name of every person who walked in we wrote down every single sentence that was said we highlighted we passed the book off to the next sister so absolutely record it write it down take someone with you they kind of if there are two things I could say in regard to your bringing up the medical system at some point I really believe I don't know what age this is but I believe in gerontologists they are specialists in elder care that's the kind of doctor you want the other thing is patient advocacy it's kind of a hot topic right now but because I think that the medical model and I'm not commenting on the practitioners the medical model is broken is not working for the patient I highly recommend that people have patient advocates and they are actually board certified patient advocates that you can hire okay so this is this is not just see the entire medical process for the patient so did okay so they know what's I didn't even know you could go to that level with it this is oh yes this is really cool last year I think it was yeah I think it was a year ago march they they had I forgotten the name of the actual organization or board but they had a test and they issued board certifications to 149 patient advocates in the world and they I think they've had the test again this year someone can be a patient advocate without being board certified they just need to know how to navigate the medical world um but you know it's even bigger than that because the medical world is broken and we now have hospitalists but your PCP your primary care physician is not part of that hospital anymore and so the biggest liability is when someone gets discharged to go back to whatever their residential living community or situation is whether it's home or a community or another sort of medical facility like a skilled rehab that's the biggest liability right there and a patient advocate can help navigate that and make sure that the balls don't get dropped in between yeah exactly I think you know like um my great my grandfather excuse me Nancy's dead he had he was on so many medications at one time uh-huh and that at one point he couldn't walk because of his breathing and then he would be on steroids and stuff and he just became like quite a monster and would pick up a couch and throw it across the room oh and so this was this it was crazy land and there was no one helping you know my my grandmother here she is with six kids and he's gone nuts you know literally and the and the you know they couldn't even operate on him for his heart they actually he was actually the he was televised his his um surgery was televised they put him on an acupuncture thingy and moved the table while they were doing the surgery because they couldn't put him under and uh and he's a strong dude man he's he's like strong German-Hungarian stock German-Hungarian Austrian depends what year yeah I know that stock yeah yeah that stock if we're all that stock right so she he's all like you know like that and um eventually we were all say like he died of a heart attack but it was because of all the different medications and now they wouldn't do it but I just watched a documentary on it is happening that oh absolutely nations are still getting because one doctor's not talking to the other doctor and somebody over here will do something and yet here's this big medical record system that you can't do this you can't even be admitted well have you fill out this form it's like how many times do I have to do it and yet they don't really it so it's kind of this messy area and people are ending up on drugs that they shouldn't even be on or or can't get off of them if they're not doing well and that's absolutely true but then go even further the incorrect diagnosis so you're taking medication for something you don't even have I just read an article on that today but that is exactly what a patient where a patient advocate could assist the person they should be able to go and you know have enough skill to question some of these things or go to multiple doctors and say hey does this seem right here you know one of our goals was to have both of our parents on as few medications as possible if they were not critical to their quality of life then they didn't take them because you know think about this the pharmaceutical companies I mean they come up with I have nothing bad to say about any of these industries in the sense that you know we have life-saving medications I yeah have life-saving we have some of the best medical technology and surgeries in this country and I mean in the world and so it's it's that's not the problem so there is no way that a pharmaceutical company can take all of the medications and test the kind of actions and the side effects of putting you know x number of them together so you have a patient who's now on 10 medications who's tested that and so family and caregivers really need to that's one of the things that was very helpful for us we would write down when a mechanic medication started and several times we figured out that my dad's side effect was from a specific the addition of a specific medication but because only because we had those notes and we had tracked it Wow you know that's that's the important thing because there are side effects oh yeah and some to you know like look at blood pressure right blood pressure medication you can't just get off of it no you can't you need to have this you know long cycle in it there are so many recalls on blood pressure medicine i don't know if there's a decent one out there there are so many recalls and so many negative effects it's like just we all need to go for a walk in the park yes calm down as i yell at the y'all this up you know i feel like that Seinfeld episode with George Costanda's dad going what's his name i can't remember zeba do you go serenity now yes i know exactly what you're talking about you know i feel we've gotten to and then so you know and there is that calming part no matter what in the medical system that's the other part so here's the caregiver trying to keep track of this doing all this and it is so confusing you end up living on google trying to become your own doctor know what's going on and then not not frazzle the patient because you don't want them to get scared you know right that's that part just keep them yeah yeah it's i think the biggest the biggest responsibility for a caregiver really isn't the care it's keeping track of all the information it's being organized with all of the documents you need and that's not just medical ones i mean at some point you need legal documents from the person and um you know insurance documents and things like that so really setting up a system to manage all the information we live in a world of information even running the household you know even running the house is you know it's a mortgage getting paid you know and how is the mortgage going to get paid what if you know so well yeah absolutely my sisters and i had to divide and conquer i manage the over i oversaw the the daily care but i managed the medical care but you know my sisters did the insurance and the legal and the financial stuff and we all you know when i say we managed it i would say we were primary on something but we all kept the other ones up to date on it it took three of us to do it and so you know we had to become highly highly organized we had to become highly efficient in communication because i couldn't spend the work you know i couldn't do an awake 24 research eight more hours and then update my sisters and there were no more hours in the day i know and then one day you walk out and go i haven't brushed my hair for five days and oh you know yeah for me to take a shower and that happens because you know yeah when um you know my step grandfather uh he what we we still don't know what happened to him we don't know but they took things out of him in mexico and that's all i know and and there's a little jar with these little pink things in it and he is telling us all to shut up i'm trying to talk to the doctors and he decided women can't talk to doc i mean it got and we i didn't we didn't know him really you know because they just got married and apparently he had diabetes and a heart attack and stroke before i never told her before they got married hello that's fun to find out later oh yay all this drama went down in mexico like crazy and talk about you have to pay cash oh my this was like over 20 something years ago and you know we were drawing cash out of the atm and then if you took it off a credit card i mean we're trying thousands of dollars they would stitch on 20 to 40 to 60 percent surcharge at that point oh my gosh it was a nightmare we went through literal hell and you know he didn't understand what was going on and trying to stop us to from talking to the doctors and it was like we need to take you back over the border which is what we did we actually got him back to Guernsey where he belongs island there because you know he was partially deaf they don't under i mean they're accent so thick they don't understand yeah you know um but he really needed that care and understanding and um you know we didn't know what he could do couldn't do we didn't know yeah and you don't just take him out you know so um i will say this there's a good you know dr Jackie she's on our show dr Jackie Obani she's on our show every month she's a cardiologist an electrophysiologist in world traveler she's always you know traveling is great but everybody and make sure you have medical insurance you know international traveler's medical insurance when you go over no hospitals know your things because you never know when an episode is going to happen and it's just a you never know and it could be with anything so i just want to put that out there because it could have saved our butts and your books would have really helped us at that point can you put them in spanish for a while he's not one of my skills but you know but i wouldn't i wanted to touch on this because you're obviously an amazing communicator know you've got background in developing computer systems so you've got that mind that can go through the stuff that is completely tedious for a lot of us like going through and you know i'm a Virgo so i'm very organized do this do that put it in everything in its little order you know annoying i'm annoying let's just say that and yet you've also got this um creative part that you and i think creativity and systems go hand-in-hand they do with founding a national dance education company and a non-profit prevention theater company to help at risk teens tell us a little bit about that is that something still going on or um well no that was back in the 2000s to 2010 i had i've done a lot of different things so i was a systems analysis and designer for a couple decades and then i managed to dance studio i wanted to be home with my daughter and i ended up managing a dance studio and the owner of that studio and i co-founded the national dance education company and what we wanted to do in the dance world there are a lot of um competitions and they go and they pretty much purely dance and we wanted to address all the other skills that someone who wants to be a professional dancer needs to have the life kind of skills um you know the thought about creating a plan before you just quit high school and move out to you know California to make a big in hollywood um so we did that for several years and we had people come from um actually somebody came from France uh but from you know across the country and then that same business partner and i started um the prevention theater and that was really cool um i did that for about five years and it was completely and totally life-consuming and then i said you know this has got its feet now so another group of people kind of took that over and um that was fascinating we worked with the writer and we worked with uh just a wide range of teens and um it was very interesting because some of the teens had never really experienced any part of another teens experience and so what the writers did was they wrote a collective story and um then that group of teens performed that collective story to high school students and it was very very powerful there had been a kind of an iteration of it many many years ago called good vibes and ben bering had been a part of that and then this iteration was called ready it was um oh boy i've forgotten what it even stood for but ready arts and education and it still exists in some implementation back in Illinois but it was fascinating it was one of the most powerful things i've ever seen and i did that for about five years and then stepped out and moved into some other projects i've kind of reinvented my life every uh ten years and now you're on this other journey here hopefully everyone have comfort in their journey which i think is awesome and also everybody she can kick your butt she's got a black belt she's a black belt instructor so um you know i was just thinking like how many times are you looking over the doctor going like you know what i could do to you now well it's an a fitness modality but i know i just yeah well you know what though i i shouldn't i don't mean to dismiss that at all but it does that particular modality in that practice and everything does really help with um it helped a lot over the years with being able to walk in and manage a situation in a calm way and make it clear that we're not leaving till this is resolved and things like that yeah definitely you have to have that balance because it it's so easy to get so mad at it you know um you know i've had a week of absolute every technical thing in the world and you really get upset and then it's like why are you giving it the energy because i feel like it just keeps snowballing because of that so i feel like when you can do things you know martial arts dance music um all of that it has a way of bringing back the focus the center the core meditation and that's why even when we're taught by you know playing music and things like that i think that's so um music is is so powerful and so healing that i think when um it can help the patient and the caregiver and change the mood i mean if you have to clean the house put on some rock and roll man yes the old school rock and roll man if you know we want you know have a good time have a good time with it you know so but i really i want to thank you so much for joining us here on big win radio it's such a pleasure and really really appreciate what you're doing and helping people through your books and speaking presentations um everyone comfort in their journey.com is a website you can go to everything from there get the books everywhere amazon all those places you know where to go for that but i really encourage you to just go directly to the website because you've got a lot of information on there just to get people started and and the people you do help people so they just contact you and say hey um you know do you help people around the country or specifically in Colorado anywhere anywhere anybody i can connect with they can give me a call and we can chat for a few minutes to see if there's something i can help them with and um yeah awesome awesome well we got to play a song for you awesome yeah we love to play music for our guests and we chose this because it's uh from borgo brian borgo everyone if you go to borgoband.com b-o-r-g-o borgoband.com the awesome musician going through his medical struggles and uh keeping very positive and he keeps releasing music and he's just a fantastic singer songwriter and uh creative just a just a genius with it but we first met him with his album Be Kind and he's been on our show two times after that and i wanted to play the title track to be kind that's i think it's one of our favorite songs to play on the show but it's also a reminder to be kind the first words are be kind to yourself and i think that's something caregivers have to remember to to be kind to yourself and to everyone we have to all be kind so that will make it smoother so here it is be kind don't forget keep up with big blend radio just go to big blend radio dot com our shows air sundays through fridays and you can access all the different places you can listen uh right there on the website thank you so much Tricia it's been a real pleasure thank you i've got a lot of fun talking to you be strong for yourself and everyone else be strong come on be there for each other take care of each other and be kind yeah come on reach out your head and hold the head that's reaching out no what i'm talking about what you say about each other is real reflection of your uh yeah come on yeah play for each other play with each other and be kind what you say about each other is really just a mirror of your mind you got to be strong pay for each other find a way to help each other to survive big way for each other it stay with each other and get high remember what you say about each other is really just a mirror of your mind pray for each other play with each other and be kind you got to come up pray for each other play with each other and be kind wow don't pray for each other what play with each other and be kind yeah pray for each other play with each other and be kind pray for each other play with each other and be kind pray for each other play with each other and be kind pray for each other play with each other and be kind pray for each other play with each other and be kind
Trish Laub discusses her book series, “Comfort in Their Journey,” that provides practical guidance for providing care, including for Alzheimer’s, through end of life.
