Hello Gmom! Pushing back against loneliness in end-of-life care

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Hello Gmom! Pushing back against loneliness in end-of-life care
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Hello Gmom!: Addressing loneliness in end-of-life care
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After suffering a debilitating stroke, Barbara, my significant other's grandmother, was left disabled, bed-bound, and mostly non-verbal. We visited often, and were with her when she passed earlier this year. For Christmas, I built her a web application to be a window into the life of her granddaughter. Now that she’s passed, I’m hoping that the project can be a foundation or inspiration for others to build tools that bring them closer to the people they love. This small project--a 5 computer and some “off-the-shelf” technology--increased the quality of life for all of us.
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Coma Berenices
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warning had so there's 2 for you and 1 for me of the 2 for you or this talk involves discussions of terminal illness and death and the emotions that surround those things are specifically loneliness and guilt all through the lens of end-of-life care if that's a heavy subject for union you just about I totally get it will not offend me will not hurt my feelings if you need to do something to give you a bit of emotional distance look at your phone jot notebook cross-stitch I am totally into it I've been there too of the 2nd counter warning for you is that I do have 2 videos In this talk 1 of them has audio it is captions and it's kind a dark for lots of reasons but it's there and if something goes wrong with the video it's of the captions can help us with the content and in the 2nd video later later and doesn't have audio but if you experience any kind of like motion related knowledge of or discomfort and I'll give you a heads up for those videos start there only about 30 seconds each and I'll be talking through them as well becomes a warning from a is Please fall off the stage the I pay so when I talk it's how I can deal with the anxiety of being on the stage so you see me getting parallel perilously close to the edge so arms of no gender OK so please take care of yourself do what you need to do I want to be safe I want you to get something out of this I want us to be here together cool sir thank you use
1st and foremost to Brenda she's sitting here in the front row on a talk about her a lot I think you bread for so many things and thank you to the organizers of conferences a really hard and I along with a couple other folks organize a conference in Seattle or talk about a little bit so we we get how hard this is they've done an amazing job so and again thank you to all of you who've Start through encounter this very last session I want to tell you a story I took this photo in July in Bermuda I was with Brand and I wanted to hear the story of how we got there we were in Bermuda to fulfill Barbaro's last wishes which was to have her ashes spread in Bermuda where she had lived most of her adult life somewhere to tell you the story and her here to tell you but my family essentially about making things that matter and about holiday gifts I say a story about fighting win you gonna lose there's no other option is going to lose elementary serve a 5 dollar computer which is my prof for this talk which I left in my backpack so It's OK
1st before you go I wanna talk about this word I a speech impediment which is why certain public speaking and so when you hear me start our own words a little bit it's the combination of nervous and T. I physiological impairment this word is really hard for me and it's really important in this discussion but that consonant with that hard I after like that many messes me up every time so I'm say the 1st under the hottest it's like a road block inferior to get around it so on account of 3 menus all the colleagues say it together though help me again so 1 2 3 did I can dignity dignity dignity barriers of it were in time others were lot so I'll probably struggle with that of his agenda because they don't have it and i'll just ramble we're going to meet some people we're going to talk about loneliness and guilt experiencing loneliness and guilt through the lens of caring for someone who is terminally ill Our a talk about the difference between soothing in solving Our talk about how to build the right thing more specifically how to know what to build when it's time to build something and then measuring the impact of what you build and we're going to close with a short discussion on what you do what you do when you lose the fight so that means some people verses made money is generally you know that you saw it on a website Our program a teacher I live in Seattle I really like tattoos and records if you want and talk to me later I always on talk about how to use the records I help run a little conference you probably haven't heard of work made this crowd he might have it's called open source and feelings and it's exactly what it says on the 10 and I'm the least important person in the story and it's the person privileged enough to tell it this is
bread she is more important to choose a software engineer specializing in building delivery engineering choose a crafter she's a runner she's a gamer and most importantly she is the kindest person I've ever known so also my girlfriend my partner my best friend we live last loving together for 4 years thing going on she's here today in the world just sitting in the front row hybrid about
yeah renders a round of applause she lives with this this is Barbara Renz grandmother she passed away in May other she remains the most important person in the story to the central character this is our 1st video is it's awkward to me to be the 1 telling Barbara story when her of relationship with Brennan is obviously much stronger much more significant and so we talked about this wanting to give brand of voice in this presentation we settled on a video to to to do so so this is brand talking about what made Barbara such a special person and again like we tested this earlier we had to really crank the audio up so let's prepare and it's about 30 seconds long was if it works is the least of all a woman I issues amazingly intelligent woman
but she was his independent headstrong instead I've yet she she
was a vast matters I can also describe my grandmother as a bad answers on of that's a commentary grandmothers but I want to believe it is and it's a shame that video so dark because in brings are adorable chill all rows of and I was like My opportunities to share with you so if you see pictures of Rosa later please come do it but but yeah Barbara was a test and it's worth talking about
this is this is what makes Barbara about issues born and raised in the eastern United States on the playground she spent most of her days but I'm not gonna do to us a group a new jersey in emigrated to Bermuda in the 19 sixties she emigrated after a bitter divorce and the thing that drove her was this desire to have her own career can be in charge of does destiny there was something her ex-husband adamantly opposed and frankly the rest of her family opposed so she lived and worked in Bermuda until her retirement in 1991 to work from early in the banking and hospitality industries and the title manager rests leasing contrasts she was joined in Bermuda a few years after emigrating by her daughter and then some time after that but I was born Brennan describes Barbara as her role model as her tireless cheerleader as her best friend her 2nd mom and Barbara is responsible for instilling a in brand of belief that success in empathy not exclusive concept Michigan achieve anything she desired or hard work dedication kindness perseverance and it was Barber's career of working with computers and frankly managing teams of men that inspired brand to go on to engineering herself brand eventually immigrated to the United States and settled in Seattle which worked out really well for me and after retiring Barbara followed his as she aged she needed more help getting by with day-to-day living so bring range for her to settle in Seattle eventually end I enter an assisted-living facility and they began this routine of daily phone calls and visits these women these amazingly strong women followed each other across continents and decades each supporting each other in kind as the situation demanded each determined to be there for each other on December 12 2012 Barbara suffered a series of ice Chemex strokes that's within a blood clot somewhere in the body usually the leg seperates and travels the circulatory system landing in the brain the result was a complete loss of her ability to speak the a complete loss of sensation and control on the right side of her body leaving her out she could sit in a wheelchair but then had the strength to move it herself and so she was really spend most of her time she lost her independence essentially overnight after the stroke Barbara needed 24 hour care so Brenda range for her to enter a facility to provide that care nursing home and that's a robber lived for 4 and a half years brand visited and those visits were hard some days the connection between brain and body were strong and Barbara could speak a little and was with Brennan and it was a little bit like old times we could talk and laugh and catch up more often bottles frustrated angry the inability to get her body to cooperate to vocalize the thing she was thinking and feeling and they made at work they developed a I surprisingly elaborate system of gestures and pointed looks and communicate in volumes would just expressions as the kind of communication that you have to grow up with someone to have some visits were really bad once a month maybe once a quarter brand would find Barbara agitated and confused you have woken up having forgotten why she was there where she was why she couldn't move why she couldn't speak is terrified and lost and it wasn't until brand would arrive that she would come down and bring would have extremely unfortunate of job of explaining to Barbara what happened where she was why she was there and how long it had been bring them a sugar-coated she always told her the truth and I immensely respect that and well wasn't too harder or to scare or it was too to be honest and hold through person she loved most but was picking a scab once I entered the picture I began visiting as well IT usually visited once a week typically for an hour or maybe 2 and over time a pattern emerge we are creatures of habit parents are like this I make really good coffee as some my special skills you wanna be my friend you wanna live in Seattle you wanna come the branch I'm a great coffee Brandt is an accomplished baker and so we would McCarthy put it in her special China that we rescued from storage and take a science guns or maybe a upon to really liked by and we would sit and talk we will talk about the weather we would talk about work because Americans like to talk about work and we talk about anything we could think of in an attempt to engage her to draw out make feel connected to us but eventually without fail the dialog with faults we apply our phones to shore photos is is the best we can do to give her a sense of what our life was like of with our bus ride look like a job where office look like about what our home looked like and we get have actually taking more pictures just so we have something to share with her when we visited Brennan was also a really good at talking with her asking questions to draw out typically these yes questions because that's what Barbara can manage most of the time but I would suspect that effort that's hard and after about an hour week cleanup giver hugged we loved her and say goodbye in doing research in this talk I came across so
many stories like Brenner and barbarous this 1 stood out to me a doctor run John as she was dollar of road in the New England Journal of Medicine about a friend of theirs who also suffered a stroke very similar to Barbara and after the stroke doctor she was started keeping a journal in which they described both the object of observation of the friends decline and eventual death and the subjective experience of watching someone you care about died this quote resonated with me because it felt immediately accessible there were those times and Barbara's room that I couldn't handle the weight of the visit I can handle the of the frustration over the difficulty and so I pull out my phone had read Twitter for a couple minutes but they we've all been there probably not quite so dramatically but these are excellent escape devices he also said that this something impossible to watch someone you care about slowly lose their connection to what makes them human it's something else to watch someone you love go through that and so there is this is what I wanna talk about so it seems unkind to leave and painful to stay strokes cruel they're all those of our essential humanity our dignity as people they take away our agency and control over our environment but they also impose upon the people we love an impossible burden on bob side is monotony loss of agency disconnection and a widening gulf between her and the rest of the world on brand side is is unshakable feeling that she can't do enough for Barbara but there's always something more she should be doing of feeling frustration or board during a visit and then being really angry at herself for feeling that it was a spiral so the young though the connecting emotion there is isolation loneliness I'm Barbara side because of this literal disconnection Aldebaran side feeling like she's alone and managing this impossible situation more research this is the last a promise some doctor early Akron act writing for The Huffington huffingtonpost talks a lot about loneliness of Dr. Vanek is a psychologist that studies the physiological effects of grief in this article which are provided Bitly link their count on they study that reviewed about 40 years worth of research on loneliness was called loneliness and social isolation as risk factors for mortality at the title Fourier published in March of 2015 and perspectives and psychological Medicine Foss talk about the settlement so this is a review of academic research on loneliness and art in controlling for all possible confounds Dr. connect showed social isolation measured social isolation corresponds to a thirtyish per cent increase in a likelihood for metallic put more simple year much more likely to die if you're lonely die from what is 1 of those confounding factors for which you can control Dr. Burnett recounts 3 really remarkable things about this study what is the scope but as I said this was a very this is a review of a large body of work 70 scientific publications covering about 3 million participants over a couple of decades years and years of follow-up the 2nd is who was affected young people or more likely affected by this more likely to have an increase in their work tally they're likely mortality because of loneliness OK but young is defined as 65 and under so most of us but this is this is the the real me that we found no differences between measures of of object and subjective social isolation was it mean it means that feeling lonely feeling isolated is as dangerous to your health as being objectively observed as I don't know how you objectively observe someone along with a cells to me but I certainly felt lonely I know what it feels like to know that there is this demonstrable increase in risk related to that it left me feeling like I need to do something loneliness and isolation will kill you brand fretted being away from Barbara yes because of medical concerns is she healthy issue OK but more so because of the these ideas of loneliness and isolation losing what remained of herself over time grammar struggle to get through each day as well and began to fill this progressive heaviness and visits like we're purgatory waiting for the inevitable I was frustrated because I can't fix this and engineer I want to fix things right I wanna like documented tested fix it and publish effects on no 1 else has to go through this ever again that's what I want to do but I can't all I can do maybe just maybe His make it a little bit better I don't know how they thought about it for a long time and have something and observation that eventually became an idea and I would like to take you through my thinking will here because all my idea start the same way the measured on a lunch problem hard to imagine imagine having a talk at lunch at all that hard to imagine no this talk was excellent talkers beautiful talk was perfect this is like the prototypical taco by which all other tokens must be judged I really wanna tell brand of this talk she be mad at me if I did tell her about this talk like it's bad goods willing to sorry this is the audience at dissipation part what do I do that will fun take a picture and digitize my talk of mathematically there and I sent it to burn and in a few seconds later she is ecstatic they have shared with her the perfect talk that's me but sense that's how we do it in 2017 that's me in my family we text we don't Facebook None of us have figure out how Snapchat works we text we're never gonna call each other the fact that this makes phone calls was completely incidental to be removed from a device I would know we test that's great that's how we talk but how's it Hello Barbara and Barbara get text right like when she could be a part of this and that was it that was it
what if there was a way for Barbara to be added to our con conversations for her to consume this stream of information that we exchange everyday what if I could tag her in a conversation just like I would anybody else in the family my I began a race possibilities was probably you know me as isn't surprise you I was gonna go way overboard and dramatic my 1st thought was a building lecture Phoenix App I'm unemployed in the cloud and it will handle a million billion concurrent connections because we have a really big family the 3 of us OK so I'll use electron and probably react because that's what to do and all build something that could be compiled and installed on every platform will put on a toaster a little laser right I will build a laser so powerful that I will carve my talk texts into the face of the moon and every time she was outside at night should be reminded of us bolstered by the source but also kind of intimidated I do what I always do I turn you 3rd a community but people I turned to friends I turned to blog posts I turned to conference talks to help me understand how to turn this idea into something actionable and this is what you had to say John Island is an engineer at New Relic in Portland he is a wonderful person and this is the advice he would give you on just about anything you wanna buy a car to support don't get a dog to be boring what amazes be also might be important use tool that you understand well that's all the boring problems so you can focus on bringing value to the users that's marketing spree speak bring value to the users would really meant something to me this time the 1st time just be boring guzzle so that's which I think about every single time I typed rails new but makes sense right from building something for print grammar nasal use my grandpa's framework right or he's saying here is that rails is a known quantity it's well understood documented it's stable there's of big community out there that can help me if I get stuck make sense some user VN we use rails and that informed so many other choices for me right like Raleses public output something RESTful so I need something and in terms of a U. device that can consume a RESTful interface and that's probably a browser well that's a browser building channel CSS and JavaScript and that's cool I really like those things so it form those the choices I mean to put it somewhere that has like a runtime the rails can be a part of so DigitalOcean droplet ranks that's what we do I love you d that's cool I feel good into housed in a building what he didn't know was held to make a text message show up in a browser I've seen it right I had gotten all kinds of marketing text messages that are had their origins in browsers but I do know how to do it but I knew someone who did I met Greg at Steele City Rudy in its 1st year anybody ever got was still city remain and Pittsburgh and it's a little much help organize I showed up a couple meetings of drag is a developer edition here and a developer advocate at Twilio the accompanying specializes in telecom integration with modern applications and he has a really smart dog really cute really smart and he taught his dog to step on a button and trait he did this so that the dog would turn off the lamp at night and you have to you have but to do it brilliant less brilliant when the dog would turn the light on a 3 1 in so he said what else can I do with this have a dog knows a step on it but what I put this button Tarjan you know they're doing know has a webcam the webcam since the text it's as a dog the steps on a button to get a tree and gets in a mess and I thought if you grant can teachers don't taxi can probably teach me any good as a really helpful article it had the bones of what would eventually be my solution about it is a really nice guy so now I had a framework I knew what I was going to do use tools understood focus on solving my problem it turns out that in NASA's just the data format and I in engineering making data formats talk to each other is kind of what I do all day every day so the 3rd piece of this I started with a little bit was so houses help grandmom and getting lost in this engineering whole how does this helper so I'm a front and a generic and a user study user studies are really fun anyway with the extra fun when the somebody you love Barbara had some challenges J. extremely limited mobility not just the fact that her right side was largely paralyzed which shit low dexterity with her remaining hand so holding a device wasn't really gonna work short-term memory impairments and dementia made learning curves just and possibly stick Jews largely disconnected from the world around her it was hard sometimes to get her to be interested if things are to hold her attention I should have a lot of difficulty speaking which how many people were thinking like a voice augmented you I because a Lexus something-or-other right like I thought about it I thought like that would be but it's it's right out the window here there's a whole segment of the population for whom you eyes will never be accessible at suppressing so what bar have going for should really good eyesight for her age and better than mine actually I wear corrective lenses and she did not and that's great and she also hated her television and that was great she hated network TV especially I don't know how much time you spend in American hospitals but there's so many TVs and this seemed like every 1 of them was turned to a news channel and hejust cells like making a bad situation so much worse the lesson was important because I was planning on replacing her television enhancing fine enhancing the television with this because of this some ways governor what was it yeah as a pi 0 which is like this though the lake little cousin of the Raspberry Pi it's a 5 dollar computer diskette a 1-gigahertz single-core processor 512 megs of ram 2 micro USB connections of mini HDMI 5 dollars more processing power than a lot of light at the college the amazing he can do all kinds of stuff with them and it turns out with a little bit of caution happily run a browser the new models the model these actually have Bialy and Wi-Fi right on board so they're like Reddy they're they're marketed for IOT stuff and that made sense for me because I was building an IOT device so my the goal was to replace her network television with a constantly connected self updating message streaming service composed from earlier talk approaches here's how it works is a little
washed out but the arrows are really the most important part where start with this blue arrow on the bottom left horses phone that's me centered NMS to Twilio phone number about from Twilio the 1 dollar 2 alleles received that bundle of an state and restructured as an HTTP POST which it's going to post over to my web server Hello Jean mom that's the 2nd marginal blog that's running in DigitalOcean's club and 1 of the smallest in the biggest drop drop droplets and then once it gets that post is gonna restructure it and 2 adjacent blob because transforming data formats is what I do all day in string over a Web socket to that Pi 0 which I duct tape to the back of her TV and it's gonna show her the text now because it's a web socket this this red arrow this two-way communication so I can send a little note back to the web server Witelson a little note back to Twilio which was in a little note back to my phone says Harry grandmom Gotcha text Sisley realigned that K. right will thumbs up
it is a real these this is the screen in her room again sorry it's it's so dark hour a handsome couple on your left is Britain I had an arcade in Oregon and this is what wooden brand snapped this photo with the phone so we went to an arcade and hit send and a show up in a room like this I'm sorry this is the 2nd video I caches as some so barbarism iPhone like anybody else this is just the IOS messages app there's nothing special about this type a little note in the hygiene at sea goal Segal's of Linux conference in Seattle I gave a talk last month telling your story we can context so it's send her that is had sent a great had model and very quickly I get a 200 OK because of the help her I think and HTTP status codes there we go back to the screen or a couple of seconds later there's the text there's a couple things going on here they're worth mentioning the go back to the user study there was no photo in the text right was an SMS versus and and so the system you have a handle both in the absence of an attached photo data and show this very handsome picture of me the she would like have something hold onto about who was talking to her I I read a lot about typography and looked at different ways to make things more readable for her and this is kind aware we landed this is a font phase called charter it's available for free is really high readability I was created around the same time as helvetica was and is a really interesting history if pi biography is something you find interesting branded this really cool thing with her where are she created things in different type sizes and held them around the room I gotta to talk about what she could see in what she couldn't has helped us to the interface a little bit to her capabilities of a couple of the interesting things about the system there
was a responsive layout like responsive design but not because we'll be looking at it on any other kind of ice but because in the masses come in a variety of shapes you can take tall pictures you can take wide pictures I really like taking square pictures some difficult and I had built a system that you have a display those and I just leaned on what I know about responses designed to do it the system was smart enough to reject those if you got gram on so number you consider me messages there was an approved list that was manage both of the 2 allele level and at the web server level a thought some people are malicious and know how to like format a post request right so there was an accepted send list and that was all checked before anything got streamed over the Web socket website that's a amazing they might get displaced by server sent to the server sent events like I hope they don't because especially in Rails 5 action cable made it so approachable to building with web sockets that a little bit Eligius object sitting on the front that responded to those messages in new how and then injected new message into a queue a separate object built from that it was nice really nice in terms of things a lot added http to Red Lake built a little IGeneX where configured did HEP it's really hard you have to go the config file Fein-were says http input to after it that's about 80 per cent of the work to switch to http to so if you haven't please look into it it makes everything better everything better also compiled or create my own SSL certificates using Let's Encrypt and the instructions and documentation available from them were really great so that was little deal droplet that generates fresh certificates every 3 months and installs them and send me an e-mail me no that's OK just in case someone snooping on my texts that are publicly available it's amazingly stable with my client connection of 1 of the the thing that would disconnect that Web socket as it turns out after observing for a while was her DHCP lease expiring so wrote crime job to reboot the pie once a day so she would get a fresh DHCP please a really the most important part is that it was tuned to her capabilities right like we built that interface for her and it worked for this little system I gotta go faster also time this'll system from Twilio a phone number a rails API 50 line the job script made things better to make things better for Barbara to make things better for us to capture in the forefront of our thoughts gave us a way to feel connected we didn't have before and when we were thinking of her maybe there's a cute dog on the bus there you're just stressed out at work printed center I could send a something we get that little 200 OK and she like maybe we made her day a little better this is probably confirmation bias but I believe that her cognition improved a little bit after receiving the device it was a Christmas gift this past year which means she got in January software and she was excited it
took a little bit for us to demonstrate what was going on this is the 1st photo we my sticking my are mounted took a selfie this center to where I go we love you when that photo popped up on her screen the look on our faces but she was happy in a priest reply she loved little notes she was the 1 who always put a little note here lunch box and I'll send you something which he was thinking about you and this was like rekindling reconnecting to that past is so much better than network television so much better OK let's wrap in May of this year Barbara suffered another series of strokes we were with her of both when the stroke occurred and when she passed about a week later is she left behind this a legacy of determination kindness grit all traits that her granddaughter bodies but now that she's gone I don't know what to do with this thing I mean obviously talk about it but it's obsolete right like so many other things I've made its deprecated that's OK it's still the best thing I've ever shipped in 15 years of professional making software like this is the best thing I've ever shipped so I'm hoping that maybe just maybe I can encourage you to do something similar serve a couple of closing thoughts right now I guarantee it someone you love has a problem you can help with maybe you can solve it maybe you can't be solved they can definitely be you can make it better we're uniquely positioned in time and space to do something about it some of us I have no doubt will solve a huge population threatening world-changing problems no doubt most of us will create a lot of financial value for others the honor and the not enough of us will take a step back and build small things that make life better for people in love I wanted to that everything is in a product in fact I don't think I think most things shouldn't be a product there is no ethical consumption under late-stage capitalism and love it I get to stand on a stage and say that but we are going to eat that said not everything needs to be a product worry less about whether your idea your side project you'll love letter can be prioritized I'll admit I was really surprised I could find something on the market that did this I found some Wi-Fi-enabled photo that nothing they gave us that sense of connection we crave nothing they gave us like a remote way to alter the contents of what the screen was shown so I had to build it when I tell people what this project it really common responses you should kick-start there to serve what I still don't know proudly being nice to your grandmother you can't kick start that but if I thought of building a product 1st I never was shipped anything if I had ships something it would not have been what she needed it without entombed for her for all individuals and not everything needs to be made generic the nursing severed Grauman's amazing and we can learn a lot from people doing the work they give so much of themselves to protect and bolster whatever humanity and agency the residents have I know I be that into the talk but it's worth pointing out the were a constant presence in her life and were there with her when we could be and I'm extremely grateful at some point most of us are going to face this kind of adversity perhaps be us but has our agency removed perhaps to be someone we love for all the need someone to step in for us do whatever you can to give relevance and dignity to the people in your life thank you we
the allow everything's open-source by the way
including the Internext configure and all the articles I used about working with SSL and making DigitalOcean work with all of that so it's I use that into next configured other projects only really happy with it so it's all there that's a great question of presence of what was on the screen between text so I forgot to mention this we had a a queue of messages and so it would cycle through the queue and we did a lot of UX study on what was the appropriate display rate for that and how many messages should be in the queue and this is kind of dark but of some of her memory impairment held here because messages were often fresh to her of a special issue Nafta slapped like a message might be new again and so we originally settled on about 40 messages typically representing a week or so and about a minute each it was taken over the question was a bit of support group text could we see see her it was technically possible but I never figured out a good way to display of threaded message given that the device had to be so passive in terms of its consumption we were really worried about overloading it with an information Pearl so I would love to solve that problem but I don't know who else this projects for thank you so
much and
this and and so


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AV-Portal 3.20.2 (36f6df173ce4850b467c9cb7af359cf1cdaed247)