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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings

In the words of a great Dementia Friends and Warrior

I am posting this piece written my friend and fellow advocate Jerry Wylie. Jerry and I both sat on the board of Dementia Alliance International. We were blessed to have to opportunity to meet in person in Chicago at the 33rd annual Alzheimer’s Disease International conference. and although we already had built a friendship via our meetings and DAI work, the bond formed once we met in person will be everlasting. I am honoured to have his friendship, to see all the incredible things he does and has accomplished for so many living with Dementia. Today I read his words and new instantly exactly what he was speaking of and that I had to share it so here it is with his permission.

People often say to me “I can’t tell you have Dementia” which should be a compliment but, it’s frustrating, like “why do I constantly have to explain my disease”.
You see, I have MIXED DEMENTIA (Lewy Body + Vascular) so, I can appear normal at times. The chart below will help you understand, my journey is not, a smooth ride

When it spikes up, I often ask myself if I was just imagining that I had Dementia? When it takes a deep dive, I feel like I am ready for, “almost ask” for being placed in a memory care home. Add night terrors and hallucinations and, you get a truly, terrifying roller coaster ride. My wife sadly gets to hear me say, “I want to end this”.
It’s tiring, confusing and relentless but, I survive by doing my best to help others and by falling on my faith.
Yes, I am getting tired and yes, it’s progressing but, I am a Dementia Warrior. We don’t stop.

Thank you my friend for allowing me to share these important words. Thank you for the being such an inspiration and great advocate.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings

A Good Start to Another Week

I’ve made some new rules for myself as of late, one being that I can only watch or listen to the news on the weekdays, and only once per day, either in the morning with morning coffee, or in the evening. There is so much on the news that can overwhelm us and cause us to end up feeling hopeless, for some it causes depression, and or anxiety. I like to know what is happening both locally and globally but find less is more, if something really important is happening I can tune in for updates, but otherwise I can focus on the positive things in my life, things that I can do, things that are within my control. I can speak out about other things when I feel I should. I can do my part, and I try to do that to the best of my ability and then leave it for God, the universe or whoever you might think needs to manage it. This has been working well as of late, I feel more peacefulness about me again, which is very important to me.

I have been also been given certain days to my advocacy work, it is so very important to me, but I am also giving myself permission to have more non – dementia days. I know I don’t ever really get a non dementia day, I live with it, 24 hours a day 7 days a week, but some days I need to focus just on regular things, like the beautiful November we are enjoying at the moment.

Having the ability and strength once again to enjoy some nice walks that are more than just a block. Being out walking and discovering whats new in my area, and I can do those things safely without putting myself at risk where covid is concerned. I also allow myself days where I have non covid days, where I don’t look at the numbers, I don’t talk about it, I just enjoy my days. I know how to be and keep myself as safe as I can, I cannot control what others are doing. I know its likely to be around for a long while yet, so some days just need to be free of covid discussions, etc.

Allowing myself these things without piling guilt on myself, which is something we all seem to be good at doing. Feeling as though we should be doing more, that theres so much to be done if we don’t stay on it 24/7 then it must mean we aren’t as committed to it. Yet in fact it is the exact opposite, when we give ourselves permission to rest and relax and give our brain a rest from all those things, we are giving it and ourselves a chance to recharge. We all or at least those of us living with dementia have learnt that our battery ( brain) drains and is depleted easier than in days gone by, yet somehow we still expect to do the same amount and more. So when we give our brain the time to recharge, and giving it things that are joyful, taking beautiful pictures, being out in Nature, laughter with friends and loved ones, it actually usually rewards us with the ability to do some of our work at a better and higher level. It has taken me a long time to settle with all this, yet at times I still must remind myself its ok, it does not mean I am less committed, but on the things that I want to commit to I want to be able to commit and be productive and be fully present.

So the weekends are mine, Friday through Sunday, to play, to relax, to rest, to recoup so that as I head into Mondays I can start the week off fresh. Like this morning, waking up refreshed, it’s 10:17 in the morning, I have already accomplished mush of my to do list, shortly I will head off for my Physio/pilates integration program, I love the program and the benefits I am seeing and am grateful to be able to go once again.I have learnt to take my responsibility to myself with has much importance as my commitments to the other areas of my life.

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I was recently reminded that we must live until we die, not wait to die for it is what we do in on all the days in between that matter, for we will all die, bing given a terminal progressive illness like dementia, does not mean we should not longer live, just the opposite actually we should be living and doing all the things that matter to us, in ways that make sense for us. Live like you were dying for in fact we all are despite having a diagnosis or not.

So I hope that you can all find ways to embrace this new week we have been given, look for ways to bring the balance you need and want without guilt, without feeling like you don’t have time, without feeling like you have things that you have to do.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings

The Importance of the Words we use

I wanted to share this important piece as we always talk about the use of language

People’s words and actions can actually shape your brain — a neuroscientist explains how 

Nov 17, 2020 / Lisa Feldman Barrett PhD

We humans are a social species. We live in groups. We take care of one another. We build civilizations.

Our ability to cooperate has been a major adaptive advantage. It has allowed us to colonize virtually every habitat on Earth and thrive in more climates than any other animal, except maybe bacteria.

Part of being a social species, it turns out, is that we regulate one another’s body budgets — the ways in which our brains manage the bodily resources we use every day. For your whole life, outside of your awareness, you make deposits into other people’s body budgets, as well as withdrawals, and others do the same for you. This has pros and cons, as well as profound implications for how we live our lives.

Your family, friends and even strangers contribute to the structure and function of your brain and help it keep your body humming along.

How do the people around you influence your body budget and rewire your adult brain? Your brain changes its wiring after new experiences, a process called plasticity. Microscopic parts of your neurons change gradually every day. Branch-like dendrites become bushier, and their associated neural connections become more efficient. Little by little, your brain becomes tuned and pruned as you interact with others.

Some brains are more attentive to the people around them and others less so, but everybody has somebody. Ultimately, your family, friends, neighbors and even strangers contribute to your brain’s structure and function and help your brain keep your body humming along.

This co-regulation has measurable effects. When you’re with someone you care about, your breathing can synchronize, as can the beating of your hearts — whether you’re in casual conversation or a heated argument. This sort of physical connection happens between infants and caregivers, therapists and clients, even people taking a yoga class or singing in a choir together.

If you raise your voice or just your eyebrow, you can affect what goes on inside other people’s bodies.

We also adjust each other’s body budgets by our actions. If you raise your voice or just your eyebrow, you can affect what goes on inside other people’s bodies, such as their heart rate or the chemicals carried in their bloodstream. If a loved one is in pain, you can lessen their suffering merely by holding their hand.

Being a social species has all sorts of advantages for us humans, including the fact that we live longer if we have close, supportive relationships with others. Studies show that if you and your partner feel that your relationship is intimate and caring, that you’re responsive to each other’s needs and that life seems enjoyable when you’re together, both of you are less likely to get sick.

And if you’re already sick with a serious illness, such as cancer or heart disease, you’re more likely to get better. These studies were conducted on married couples, but the results appear to hold for close friendships and for pet owners too.

We also get sick and die earlier when we persistently feel lonely — possibly years earlier, based on the data.

In general, being a social species is good for us, but there are also disadvantages. We also get sick and die earlier when we persistently feel lonely — possibly years earlier, based on the data. Without others helping regulate our body budgets, we bear an extra burden inside.

Have you ever lost someone through a breakup or a death and felt like you’d lost a part of yourself? That’s because you did — you lost a source of keeping your bodily systems in balance.

A surprising disadvantage of shared body budgeting is its impact on empathy. When you have empathy for other people, your brain predicts what they will think and feel and do. The more familiar the other people are to you, the more efficiently your brain predicts their inner struggles. The whole process feels natural, as if you were reading another person’s mind.

But there’s a catch — when people are less familiar to you, it can be harder to empathize. You might have to learn more about the person, an extra effort that translates into more withdrawals from your body budget, which can feel unpleasant. This may be one reason why people sometimes fail to empathize with those who look different or believe different things and why it can feel uncomfortable to try. It’s metabolically costly for our brains to deal with things that are hard to predict.

A hateful word may cause your brain to flood your bloodstream with hormones, squandering resources from your body budget.

No wonder people create so-called echo chambers, surrounding themselves with news and views that reinforce what they already believe — it reduces the metabolic cost and unpleasantness of learning something new. Unfortunately, it also reduces the odds of learning something that could change a person’s mind.

We also regulate each other with words — a kind word may calm you, like when a friend gives you a compliment at the end of a hard day. And a hateful word may cause your brain to predict threat and flood your bloodstream with hormones, squandering precious resources from your body budget.

The power of words over your biology can span great distances. I can text the words “I love you” from the US to my close friend in Belgium, and even though she cannot hear my voice or see my face, I will change her heart rate, her breathing and her metabolism.

Or, someone could text something ambiguous to you like “Is your door locked?” and odds are that it would affect your nervous system in an unpleasant way.

Your nervous system can be perturbed not only across distances, but also across centuries. If you’ve ever taken comfort from ancient texts such as the Bible or the Koran, you’ve received body-budgeting assistance from people long gone.

Books, videos and podcasts can warm you or give you the chills. These effects might not last long, but research shows that we all can tweak one another’s nervous systems with mere words in very physical ways that go beyond what you might suspect.

The power of words is not a metaphor; it’s in our brain wiring.

Why do the words you encounter have such wide-ranging effects inside you? Because many brain regions that process language also control the insides of your body, including major organs and systems that manage your body budget.

These brain regions are contained in what scientists call the “language network” and guide your heart rate up and down. They adjust the glucose entering your bloodstream to fuel your cells. They change the flow of chemicals that support your immune system.

The power of words is not a metaphor; it’s in our brain wiring. We see similar wiring in other animals; for example, neurons that are important for birdsong also control the organs of a bird’s body.

Words, then, are tools for regulating human bodies. Other people’s words have a direct effect on your brain activity and your bodily systems, and your words have that same effect on other people. Whether you intend that effect is irrelevant. It’s how we’re wired.

Does this mean that words can be harmful to your health? In small doses, not really. When someone says things you don’t like, insults you or even threatens your physical safety, you might feel awful.

Over time, anything that contributes to chronic stress can gradually eat away at your brain — this includes verbal aggression, social rejection and neglect.

Your body budget is taxed in that moment, but there’s no physical damage to your brain or body. Your heart might race, your blood pressure might change, you might ooze sweat, but then your body recovers and your brain might be a bit stronger afterward.

Evolution gifted you with a nervous system that can cope with temporary metabolic changes and even benefit from them. Occasional stress can be like exercise — brief withdrawals from your body budget followed by deposits create a stronger, better you.

But if you are stressed over and over and over again without much opportunity to recover, the effects can be far more grave. If you constantly struggle in a simmering sea of stress and your body budget accrues an ever-deepening deficit, that’s called chronic stress. It does more than just make you miserable in the moment.

Over time, anything that contributes to chronic stress can gradually eat away at your brain and cause illness in your body. This includes physical abuse, verbal aggression, social rejection, neglect and the countless other creative ways that we social animals torment one another.

It’s important to understand that the human brain doesn’t seem to distinguish between sources of chronic stress. If your body budget is already depleted by the circumstances of life — like physical illness, financial hardship, hormone surges, not sleeping or exercising enough — your brain becomes more vulnerable to stress of all kinds. This includes the biological effects of words designed to threaten, bully or torment you or people you care about.

When your body budget is continually burdened, momentary stressors pile up, even the kind you’d normally bounce back from. It’s like children jumping on a bed — the bed might withstand 10 kids bouncing but the 11th one snaps the bed frame.

Simply put, a long period of chronic stress can harm a human brain. When you’re on the receiving end of sustained verbal aggression, studies show you’re more likely to get sick. Scientists don’t understand all the underlying mechanisms yet, but we know it happens.

These studies of verbal aggression tested average people across the political spectrum, left, right and center. If people insult you, their words won’t hurt your brain the first or second time or maybe even the twentieth.

We are free to speak and act, but we are not free from the consequences of what we say and do.

But if you’re exposed to verbal aggression continually for months or if you live in an environment that relentlessly taxes your body budget, words can physically injure your brain. Not because you’re weak or a so-called snowflake, but because you’re a human.

Your nervous system is bound up with the behavior of other humans, for better or for worse. You can argue what the data means or if it’s important, but it is what it is.

It’s the fundamental dilemma of the human condition: The best thing for your nervous system is another human and the worst thing for your nervous system is another human. Scientists are often asked to make our research useful to everyday life, and these findings about words, chronic stress and disease are a perfect example. There is a real biological benefit when people treat one another with basic human dignity.

A realistic approach to our dilemma is to realize that freedom always comes with responsibility. We are free to speak and act, but we are not free from the consequences of what we say and do. We might not care about those consequences or we might not agree that those consequences are justified, but they nonetheless have costs that we all pay.

We pay the costs of increased health care for illnesses — like diabetes, cancer, depression, heart disease and Alzheimer’s disease — that are worsened by chronic stress. We pay the costs of ineffective government when politicians spew vitriol at one another and make personal attacks instead of having reasoned debate. We pay the costs of a citizenry that struggles to discuss politically charged topics with one another productively, a standoff that weakens our democracy.

As our society makes decisions about health care, the law, public policy and education, we can ignore our socially dependent nervous systems, or we can take them seriously. Our biology won’t just go away.

Excerpted from the new book 7 1/2 Lessons about the Brain by Lisa Feldman Barrett. Copyright © 2020 by Lisa Feldman Barrett. Used with permission from Houghton Mifflin Harcourt Publishing Company. All rights reserved.

Watch her TED@IBM Talk here: 

ABOUT THE AUTHOR

Lisa Feldman Barrett PhD is among the top 1% most cited scientists in the world for her research in psychology and neuroscience. She is a University Distinguished Professor at Northeastern University with appointments at the Massachusetts General Hospital and Harvard Medical School. Dr. Barrett was awarded a Guggenheim fellowship in neuroscience in 2019, and she is a member of the American Academy of Arts and Sciences and the Royal Society of Canada. She lives in Boston. Visit her website at LisaFeldmanBarrett.com or follow her on Twitter at @LFeldmanBarrett.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

A Time of Change

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Tonight we change our clocks back an hour, or at least most of us do. There is a small little area of British Columbia never changes the time, the rest of us do it every year at this time and then again in the sprint. In earlier times it was done to give farmers as much daylight as possible to work in. I suppose one could say it was a good idea years ago, although I am not sure even that makes sense to me. I believe at one tome people worked by the sun and the moon, they hunted and fished in accordance with the seasons, they planted and harvested the same way.

Somewhere in there western civilization decided that changing the clocks was a better way. People have long said it is very hard on their systems, it is a time of more accidents, all kinds of evidence to show that perhaps this was not the best choice, yet it still remains. They say its to help farmers, farmers have high powered equipment with massive lighting systems that they can work whenever they want, so that no longer is valid.

Every year we go through this debate if wether we should put it to where it was before man started messing with it and leave it there. We then here how we can’t unless the USA also agrees, if we went ahead without them it would create havoc for the airline’s. This is also something I don’t believe, they deal with varying timezones all over the world.

I believe its another classic example of how policy and beuacries can make things far more difficult than they need to be. Man has become so good at over complicating things. We can live how we were intended, If we need to operate during the other times we have the capability to. We have lights, we have alarm clocks, the time itself doesn’t have to change. These time changes effect me, I find them very difficult. Not all countries change, and some countries like in Canada, not all areas within it change.


So it appears that it is more about what certain people, certain corporations and companies want than what is actually best for people. It seems that for far to long, money, power, greed as been allowed to dictate what policies are upheld, what ones are changed. So many of the crisis we are facing are happening because of commercializations, money, power and greed. It has created a world that every day becomes harder to be part of, but I can hope for change, I can hope for a better world.

Onto other things, it was a crazy week, many twists and turns, a broke down car, hours sitting waiting for tests at the hospital, although I found that time enjoyable, i engaged in conversations with others, saw a old colleague and had a nice visit, the hours actually created an opportunity for me to have face to face ( masks of course), social distance of course, but face to face interactions, social engagement, human interaction, which as been so lacking living alone. My car repaired yesterday, an enjoyable impromptu walk through our down town. The longest walk I’ve been able to manage in about a year and a half. I must say I am impressed with the changes happening in the down town area. Some great phone conversations, participating in the Radar Summit in Saskatchewan, and working with some great organizations, striving to make a difference.

Time is moving quickly it seems,

another day ends, another dawns.

Falling behind, catching up, or just drifting along.

Go to bed, get up, go to bed,

where did the time go,

what did I, where did I go,

my oh my, what did I do,

it disappears as fast as the time.

My mind like time is often just gone.

This is my attempt at writing poetry, I am trying to do different things to help my brain hang onto to whatever abilities it can.

Daylight has dawned, time for another coffee, I hope you all have a great weekend . Don’t forget , whether we like it ir not, its that time for us to turn our clock back.


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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Brighter Days

Not every day is sunshine and roses, some days it’s hard for many to get out of bed, myself included. I am often asked how I stay so positive, its a hard question sometimes to answer. I am not always positive, some times I feel frustrated, angry, and just plain sad, some times I feel like I am being swallowed up by never ending grief. But that is not every day, sometimes it ebbs and flows through a day, from happy moments to absolute despair. For me it is not at all about being positive every moment of every day, surely I would end up in complete depression trying to master that, but rather it is about accepting and acknowledging all the different emotions I feel and being unapologetic for feeling the things I do feel.

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Society spent years telling us to suck it up, or dry your tears and get over it, instead of embracing all those different emotions that allow us to be whole and complete. When bad things happened we were told to put it behind us, things weren’t talked about, leaving us today trying to help people understand and deal with all the unsolved traumas and how they impacted and still impact their lives. Feeling sad is ok, failing is ok, winning is ok, being happy is ok, feeling angry is ok, feeling frustrated is ok, it is what we do with all those feelings and how we learn to channel them that matters.

So when people ask me, I am very honest that not all days are easy, not all days are good, but that I try to acknowledge where I am and then find it easier to move on and I do try to do a “grateful list” one in the morning and one in the evening.

I don’t want to get stuck in all the doom and gloom we hear. I try to keep it in perspective, for example, climate change, yes in my opinion it’s very real its something we all need to take seriously, do I think we all need to do our part, absolutely, if we don’t we will be the ones to blame for the destruction of mankind. But I don’t let it overwhelm me, I do the things I can do, the little things that can make a difference. I pick up trash and bottles and cans when I am out exploring, I recycle and reuse and repurpose everything I can. I am very careful with the water I use, I only do full loads of laundry, I only run a full load in the dishwasher, I try to purchase things that are not in plastics, its not always possible but I do what I can. There are lots of little things we can do, so it feels positive, it doesn’t take on the doom and gloom aspect.

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Then theres the opioid crisis, the homeless crisis, the health care crisis, those to can overwhelm us, put us in a state of depression if we let it. I live in what some say refer to as one of the worst areas of town, I however feel like I live in an area that offers many conveniences for me, no it is not perfect I really need a space where I can have a small garden area, where I can get my hands and feet in the dirt, its grounding, its healthy and its one area that I am lacking, but instead I have a house full of plants, they give me good clean air to breathe they offer beauty on even the dullest of days, I sing and dance to them, sometimes I’m sure I can hear them shutter ( hahaha), its important to have things to care for, yes I also have my dog, who showers me love, and we care for each other. I don’t ignore the crisis right outside my door, I donate what I can to the soup kitchen, I take any clothes, boots, shoes etc that I can, and the biggest thing I can do, is acknowledge those who are living on the streets, say hello, tell them to stay safe, tell them to have a nice day, offer them a little bit of basic decency, acknowledge that I know they are there, that they too are people.

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So many things we can do, again they may be small things, but if we are all doing small things it can all add up to a big difference. I can and do advocate not only for those with dementia but for the homeless for those caught in the opioid crisis, I advocate for changes and I mean actionable changes in our health care system. Yes it seems endless at times, at times I wonder if any of it is worth it, I too am human and I too have those thoughts, but I do it, this allows me to live more fully, live in joy, live in gratitude. There is a desire in me to live centred in this place of peace. Peace within myself, to be able to live a peaceful life despite all the things going on that tell me I shouldn’t be.

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I have taken up trying to read again, I haven’t read for a few years for it left me in a state of frustration, not because I couldn’t read but because I no longer retain what I read. But I always loved reading and have some books that I really want to read, so I challenged myself to work through the frustration, and know I am reading again, I am reading a book right know called Dancing with Elephants its a great book I am really enjoying it, although I couldn’t tell you what I read yesterday and last night, I can tell you the joy it brought me to make a cup of tea and curl up with a book, thats the important piece, not whether I process or remember it but that I am enjoying it in the moment I am doing it. If I read the same book over and over then some of it will eventually go into long term memory and stay there, allowing a memory or discussion to bring it back into focus. This is the gift of Dementia, having the ability to find ways and working through things to continue to do things that matter, that help me have a great deal of peace. I don’t fight my illness, I work with it. Its a a wonderful thing to be able to look at it and see the gifts it has bestowed on me instead of just the devastation. This has not been an easy place to get to, it has taken me years, I work at it everyday, but somehow most days it doesn’t feel like that hard of work, not like in the beginning. In the beginning I was sure I would not or could not survive it, let alone live with it, and thinking about that, feeling a sense of pride in myself for making it this far, for not quitting, for not giving in, for finding a way to live a life of peacefulness, to learning to embrace it all. I thought about this last night and fell asleep with a smile on my face, and I awoke this morning feeling like although the weather may seem dark and dreary outside today, I feel bright and cheery.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

November 2021

Its a lovely clear beautiful morning, I was awake at five a.m., morning coffee is tasting somehow extra smooth and rich this morning. October came and went so fast, life is happening so fast it seems, which seems odd considering restrictions from covid 19 still abound. Yet somehow here we are in another month, a step closer to another year winding down.
It seems I am so in touch with how things make me feel that somehow my awareness of things around me is so heightened, in the past of example I likely would not have given thought how things may or do impact me. I was so busy just being busy, thinking I needed to somehow prove myself, to maintain all that society thought I should. It left little time to actually be in touch with the inner most parts of me. I appreciate having the time to go within, to explore, its not always easy work, we have to walk through fear, but on the other side of it I find myself able to love who I am, I no longer set myself up for failures, to unnecessary expectations, I can love myself on my good and bad days, to see that even on my bad days when my illness causes and challenges me that it is still a day to celebrate.

Living more honestly with myself also means that I examine things, I think about the impacts of things, and one of those things of late is the use of technology in our lives. In many ways it’s fabulous it has done so much to help not only those of us living with Dementia but to everyone. Somehow though I have been examining all the different aspects, looking at things through a lens many won’t or don’t. This does not win me any popularity contests, I don’t do it to cause harm, or upset people. It’s almost like its another one of the gifts bestowed on me with my Dementia, like my love for writing, and I do believe it is a gift, to be able to look at something, see all the good it can and does do, but to also see the harm that can come if we cross certain lines. I work with and on some very interesting and good things that are technology based and have the ability to really help many, I have also been watching and seeing many things come to light that can if used in the right setting perhaps be ok, but put into the wrong settings can do harm. Yes I say can do harm, because it depends on how willing we are to look at the harm that can come, to acknowledge that and alter how and when we use certain types of technology. Yesterday I read an article written by a esteemed Doctor, who talked about how technology can be a very dangerous thing if used in certain health care settings, he was referring robots used in situations where they are actually replacing a person, doing different types of things that would normally be done by a person who while doing them is doing assessments that can only come from hands work with patients. I then watched 60 minutes where they did a program that showed the alarm has been sounded on the use of technology and robots and the damage that can happen to mankind on a bigger scale than most are wanting to think about or look at. I am and have been sounding the alarm, but still believing there can be many aspects of technology that can do great things.

This does leave me feeling like at times I am standing alone in some aspects of my advocacy work, perhaps because some don’t have the ability to look at all the different aspects. Maybe because they fear they will be somehow respected less, they don’t want to be the ones who stir the pot. I am not sure, but I am not advocating to win a popularity contest, nor am I here because it’s I have nothing better to do, or because the perks are so grand. I advocate because I live with Dementia, I believe in contributing and trying to make a difference, and in doing that at times, it means I bring things up that no one else will. It also at times made me question how much longer I can keep on advocating, it’s as rewarding as it is exhausting. It seems to be really hard right now, maybe partly because the whole state of the world seems to be in disarray on so many levels.

On Wednesday I will represent Dementia Advocacy Canada and speak at the RaDar conference In Sask. which is hosted by the University of Sask. The Radar event is specifically around Dementia and the Rural outlook and impacts felt by those living with Dementia in Rural Communities. I am really looking forward to this, it is something I feel needs to have more resources put into. I will speak about Human Rights and Dementia, another topic that has to be kept being brought to the forefront, years of people talking about it, little movement in the ways that really matter. But we keep trying, we keep keeping it in the forefront as much as we can.

Friday I will be meeting with our MLA, a week that will exhaust me, but hopefully will be steps to do more locally, provincially and within Canada, which I have always hoped to do. I will continue working with DAI in all ways I can, they will always be an organization that I will promote and value. I have submitted my abstract for the 2022 ADI conference, and continue to work with Agewell and CCNA. Somehow somedays it doesn’t feel like enough and yet in my heart I know it is enough, in fact I know that no matter how much we do it is enough.

So as November unfolds, reminding myself that remembering the most important thing is to be happy, to find the joy, to live each day, to remember the biggest lesson Dementia has taught me and that is to live today as best I can, for today is a gift, today is meant to be lived, that I may have a terminal and progressive illness, but until its time for my life to end, and it will, I must live, be present, not to look to the end for the end will take care of itself, but I will miss out on the most important pieces if I don’t remember to live each day that I am here. To remember to focus on the things I can do and no matter how many times I have to adjust or change how I do things to focus on the things I can not on the things that may be coming, or the things I may not be able to do at some point. So Today I will be grateful that I managed another day, in good spirits, with a good day winding down, after a great start to the day.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

A Repurposed Life

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I have been working at repurposing things in my life, to use less, some of it out of necessity, some out of a want to simply life, start getting ready for a whole new chapter, reinventing my life on all levels. Some days it feels like there is a stranger living within me, somedays it feels like I am becoming at long last who I always strived to be. I am a complicated being and have become more complicated with the diagnosis of my vascular dementia. At times learning to maneuver all the challenges and changes it brought has and is difficult, some times frustrating, other days its so rewarding, some days feels like I have finally arrived, left me feeling grateful for the diagnosis, other days I hate it with every fibre of my being. But it has brought me to where I am know in this world of repurposing and refurbishing my life.

Repurposing has many different aspects to it, I have been taking clothes that I normally would wear only in certain seasons and finding ways to incorporate them into wearing anytime, this has allowed me to significantly cut down on how many items of clothing I need. It also lets me use them to the maximum of their life span. It has turned out to actually be fun, and yes I often look like that eccentric old lady going down the street, but that in itself can be fun, it makes people smile, and it seems that spreading a little cheer is something we all need to see more of.

I have also been using a skill which I had forgotten I even had that my mother and grandmother taught me in my young years, and that was to repurpose things in our house, whether a piece of furniture, or a pot or pan, finding ways to use things we have in different ways, how to not go buy things at the grocery store instead all of my cupboards and fridge and freezer have had an inventory done, I’ve been using what I have on hand to create a meal, and I must say I’ve somehow managed to come up with some pretty simple but good meals for myself. I am admittedly in part doing this out of necessity, rising costs are impacting my life, high rental costs, high costs for utilities, food. I was not expecting to be where I am today, but life took a complete turn with my diagnosis, but despite that, I am grateful in many ways that it took me to be here where I am today, my life is rich in many ways, just not in the ways that allow for a luxurious life, although luxury comes in many forms, and when I stop to think about it, my life is very luxurious. The reason I am doing this is because it feels good, it feels good to know the impact I am having on our mother earth is minimized by doing simple things and living simpler.

The other reason is all part and parcel of repurposing my life. I am analyzing everything, what I am doing, what is feasible to continue doing, changing how I am doing some things. this includes my advocacy work, giving up some pieces, refocusing some, in some things doing less, in others stepping up to do more, in some things letting them go altogether. This comes in learning to work through those moments where we somehow pile the quilt on ourselves ” that we should do more”, “that we should do better”, “that letting some things go will be letting others down”. So learning to be kind to ourselves so we can give more to the things we choose, and yes its ok for those things to change and be adjusted, it is in fact what helps keep us fresh, keeps us moving forward.

So we have to forgive ourselves for things we somehow make ourselves feel are not enough, because in fact they are enough. And yes many times people don’t like it when we change, when we do things that are different and not quite in line with how “we’ve always done them”, or what is the expected and accepted norm.

Today I had some incredible discussion and one of the things I was told, was it doesn’t matter if you are only helping one person with what you are doing or doing it on a global scale or community scale, one is no less important than the other, and that is actually healthy to change it up. It was great words of wisdom from one I admire a lot.

I am building a plan, not fully knowing if my health will allow for it to be realized, but I will continue to work on my plan through the winter months, and if God willing my health allows I will un-hatch the plan in spring. I have nothing to loose, if my health doesn’t allow, then at least I have kept exercising my brain throughout the winter working on the plan, and figure out what can and should be repurposed and brought into the next phase. If my health can maintain enough for the plan to hatched or not, it will and can never be for nothing, for I will have learnt about myself and many other things while building this new and repurposed life. I may have dementia, and things may be continuously changing and my abilities continue to change, but I will continue to challenge myself to use my abilities to have the best quality of life for myself as I can. I am grateful for those who are in the background helping me to obtain that, my circle is very small now, but those who have stuck around or showed up during this crazy journey have made a huge difference. Thankfully, the accept my worst days and brain fog, where having a conversations is challenging to my best days, they laugh with me and not at me, as one thing I have learnt is to laugh at myself, it feels much better than being angry about the situation or crying and being depressed about it. They are so good at not judging but instead embracing my lust to ride this journey out as fully as I can. Always watching and ready to jump in should I need help, but allowing me my independence, and my right to live at risk. For that I am eternally grateful.

I watch and look around at whats happening in our world and I feel so very deeply about whats happening, and I feel things so much more deeply, it impacts me more or maybe its just that I am more aware of its impact on me because I am more in touch with that part of myself, but I have also had to put a lot of that into a manageable piece as well, I can’t take it all on. It doesn’t mean that it doesn’t matter to me, but again repurposing my life so it can reflect the things that I can manage.

I am waiting to see the speech pathologist, and for some other tests from my internist2, my vocal abilities and swallowing abilities change sometimes many times in a day, but I am grateful that I have such great care, and that I have not lost my ability to write, which I am thinking more and more is such a gift that I received through my dementia diagnosis. And in closing I will leave with this thought, no matter if you have dementia or not, we all have the right and the ability to redefine who we are, repurpose our lives to be what we want it to be instead of what society tells us it should be. What about if we rethink dementia, what about we focus on the living piece not the dying.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Robots, Human Connection, Anger and Human Decency

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Last week was a tough week in many ways and on many levels, so tough i actually tried for three or four days to write and found I was unable to, even though everything was in my head I could not get it onto paper, it was like being frozen, so things kept replaying in my head, it effected my sleep. Very little upsets or bothers me to that degree anymore but this week was different. Things effect me differently than they used to, many things have no real impact but things that do and they are generally something that makes me feel some type of emotion.

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I went to the store to pick up a few grocery items, I was standing in line with my few items, an elderly couple ( likely late 80’s were ahead of me, another lady about my age behind me, we were all wearing masks, we were all being respectful, we chatted, suddenly a middle aged man came at as yelling at the elderly couple, running into me, almost knocking me over, which ended up almost causing a fall for the woman behind me, he kept yelling at these people that they shouldn’t be in that line, he did not apologize for running into me, one of the workers saw this and went to open another till, she asked me to come to her line as I next, but the belligerent man was still yelling, so i said very clearly, perhaps you should take this rude man, because apparently he feels he is more important than the rest of us, and moving him along so he can be out of the store will allow the rest of us to finish or shopping without putting up with anymore of his belligerence. The elderly lady was crying her husband upset, the cashier upset, everyone in the line ups upset. I talked to the lady, she was apologizing, I assured her they had done nothing wrong and it was ok. The cashier got the man out, I told the lady behind me to go ahead of me, they all thanked me for speaking up. By the time I went through the tills I was left wondering what was happening to mankind. I know people say its because of covid, I believe that to be an excuse for many people, they somehow use that to give themselves permission to be mean, unkind. It shows peoples true colours, because covid or not you know exactly what you are doing when you behave in those ways. I then came home to read that one of the council members had put forward a motion to get rid of the people parked in town with their Rv’s. People are living this way out of necessity, not for most by choice, these are not people who are snow birds, these are people who cannot afford to live and pay rent so are trying to live the only way they can without ending up homeless. But people don’t want to look at them parked along the street, so let’s make them move, well where are they too move to. So I wrote in to suggest that instead of pushing them further into despair, we might try to find a location, to allow them to park and be safe for the coming time, perhaps then the people with the resources could assist to help lift them up would have an easier time getting to know them their story and what could be done to help them. Again I was deeply disturbed by how willing people are to discard others, as long as they don’t have to see it, like the human at the very core of it has no value. It makes me feel we are walking a very fine line as humans.

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This leads me to the most disturbing part of the week and it haunts me. I turned on the news something I rarely do anymore, and there was the the story about how the use of robots in long term care is somehow a good thing. So here are some of my thoughts on this. And let me be clear there is many many great people working in Long Term Care, who given a healthy work environment, a healthy life/work balance could do an even more phenomenal job than what they already do under dire circumstances.

While I am a strong advocate that technology has many important roles in our daily lives, in this instance, I have grave concerns about the impact of these robots not only on the residents but the staff as well.

When I first started out as a Care Aide I chose to work with seniors because I enjoyed the bond created between the residents and myself.  The staffing levels and nature of the job meant I had time to create a connection not only with the residents but their families as well.  I was happy to go to work because I felt I was making a positive impact on the lives of our seniors. 

Slowly, over the years,  this nursing career that so many were proud to be in was undermined by the desire to save money at the expense of the very people we were charged to look after.   The team work that had created a homelike environment became a thing of the past as permanent and full time positions were deemed too costly.  Casual workers meant that connections with family members and consistent care for their loved ones was no longer happening.   This resulted in barriers to family bonding with staff and lack of confidence in the care being given.

Staff were also impacted.  As the job became more task oriented they were unable to fulfill the reason they got into this line of work – to care for their patients.  Let me be clear here. This is not because staff didn’t want to care, it is because they no longer had the time to care.

The direct result of all of this is the staffing shortages we see today. Nursing is not a profession that many people want to go into or have the desire to stay in. Today, staff and families often view Long Term Care as hostile, uncaring and toxic.  The impact of this is felt daily by the residents. 

This brings me to my concerns about advocating for the use of robots to facilitate contact between residents and their family. 

We all know that this pandemic has highlighted the already fragile state of senior’s care in this country.  This on top of staff shortages, task oriented job mandates and lack of consistent care means that residents are already not getting enough human contact.  Using the robot in this way will just take away more of what little human interaction residents now receive; interaction which is well documented to be vital to the well being of those residents.  

Using robots to fill the gap from staff shortages does more harm than good.  It exacerbates the long time issue of putting Care back into Long Term Care.

If this robot technology is used in the way it is proposed it will give the policy makers a license to ignore the severe staffing needs and not enhance human interactions with the residents.  It will further encourage isolation and disconnect between the resident, the staff and the families.  

Perhaps a better use of this technology would be to create a system where nursing staff can, by voice, use the robots to do their charting/ paperwork that they are burdened with, instead of doing it manually.  The precious time saved could be better spent creating and maintaining human bonds. 

Human interaction is VITAL to life.

Other than those things it is a new week, I was so shook up by all these events I could not even write. This week, I am taking time out from a lot of things to focus on self care, my vocal abilities are really challenging right now and along with that the added piece of difficulty swallowing. Admittedly it is somewhat frightening wondering if this is going to settle into one of the new platforms from which I will operate for a time before the next step down in this process hits. So I’m mid week in another week and am looking forward with hope.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

Thanksgiving in Canada

This weekend it is the Thanksgiving weekend here in Canada, I know in the USA they celebrate Thanksgiving in November, I am not sure about other countries. So Monday is actually Thanksgiving day and a statutory holiday for us, so people enjoy a long weekend, many have their last camping trip, others travel to enjoy time with family and friends. There was a time I too would have made the trip to spend with family, but now I spend it quietly with my dog. I find larger gathers to noisy, to hard to follow conversations, two or three people would be ok beyond that , its exhausting, mentally. Covid has also hindered the ability or want to put myself in harms way., restrictions, not knowing who is vaccinated and who is not means in order to protect myself I spend more time at home, and out walking and exploring with Pheobe.

I have much to be grateful for, many things to give thanks for, I try to live a grateful life each day, being present and aware of the many things and ways I have to give thanks for, thanksgiving is a good time for reflection and check in to remind ourselves of all that is good in our lives. Those who are in my life are indeed my greatest treasures, having the ability to meet and work with others around The globe to advocate for others, to try to help bring change about for many. To have a a safe place to call home, to have the companionship of my little dog. To still be maintaining my independence, to still have the ability to move about freely without aids.

I left this sitting for a couple days, today is Monday, the actual Thanksgiving day, today was a good day for me in comparison to yesterday, yesterday was challenging, fatigue, pain, brain fog, found me spending a lot of the day in bed. Allowing my body to rest as it needs to though definitely allows me to enjoy the good days more. Pheobe also had a better day today, and we did a lovely walk and drive, enjoyed seeing all the Kokanee ( thats a land locked salmon), in the creek that runs through town, in 16 years of living here i have never seen so many fish, a good sign, the benefits of the quieter world, less impact of man, we saw some turtles sunning themselves, and just enjoyed the sunshine, it was cold only 9 degrees Celsius, but i can actually function better in the cooler temperatures as does Pheobe so a really nice day for us today. Although that outing exhausted me, so my new normal is being happy if all i manage is one thing a day. I’m excited for my new rehabilitation program which will begin on Nov. 1st. my physio portion has already started, and I am thankful that I have such a great health care team. I am feeling grateful that I have managed to maintain staying independent and yes I have had to work hard, but because I’ve been willing to do my part my health care team has been willing to work hard on my behalf as well. Overall much to be grateful for this Thanksgiving. I hope where ever you were this weekend, celebrating Thanksgiving in Canada, living in a country that does not celebrate a thanksgiving day, I hope your weekend was pleasant. In closing is pictures of the lovely day today including of course my co pilot pheobe. You’ll see the fish and turtles

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Good Grief Living well with Dementia Silver Linings Stress

No Longer Fitting in

I am feeling lost these days, feeling lost because I am finding myself more and more to be living in a world that I no longer fit in. At times I wonder is it that part of my dementia, or is it because it seems my view and understanding is so vastly different than anything else I am hearing or seeing these days. I keep trying to figure it out but I am now finding that i have to not think about it to much, it causes me stress, so best just leave it be, whatever the reason maybe what matters is that i am acutely aware that I am living in is becoming increasingly difficult for me to function. I truly don’t know where I belong at this point

I am always trying to find a place or space away from people, the chaos of society, the noise of society. The constant shrill of police, fire, ambulance, people yelling, vehicles, I sleep with two fans on but still often the noise wakens me. So between the noise and choas, and all the anger and hatred, I have become more and more isolating so that I can function.

Today I went farther afield because its getting harder to find that solitude close to home as it seems more and more people are wanting to be out in nature. pictures of todays outing below, one area I was in had such a serene and peaceful energy, I spent and could have spent much mote time there.


I am trying to manage through the winter at which time I will make some new plans for my next chapter, i need a place and space that will give me a small area to dig in the dirt, where i can plant and move things about, a small space but i need outdoor space, my place i am in i am grateful to have, but because I am living so isolated my space is very important for my well being. In some ways this place ticks a lot of boxes, in the downtown core, I have the ability to walk to the store, the doctors etc, but those things are becoming less import than finding a place that is quiet and peaceful.

This could likely be one of my last outings as winter and the cold temperatures arrive. i will be keeping an eye over the winter how not having nature to escape to impacts my well being. i will also be continue to looking at whether it is in fact my dementia or the environment around me making me feel like i don’t belong or more than not belonging just don’t fit in.

Today begins Canadas Long weekend to celebrate Thanksgiving. I hope where ever you are you have a lovely weekend and its also remember to spread love, joy and kindness. I am leaving you with the beautiful sun setting last night.