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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

Racing towards the end of 2021

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November is quickly coming to a close and I believe many people are looking forward to having 2021 behind us, I wonder how many of us have actually taken the lessons we have been given. 2021 feels as though it has been a particularly hard year for so many in so many different ways, or maybe its just that we are more aware, paying more attention to those things, I am not sure. I know for me it has been a difficult year, I have had years in the past that have had tragedy, heartbreak, and those times but this year, it has somehow felt more difficult, maybe because we have had almost two years of covid-19, we have endured so much in the way of catastrophic events, and it feels like we are not through the worst of it somehow. Amidst all of this, health challenges, complications, not only for myself but for many others, the year has somehow gone by in record time, like we are in warped speed racing to get too and through to the end of it.

Is it that we are all hoping 2022 will dawn brighter, with so much of the worlds crisis somehow being resolved by the start of a new year. I am hopeful, how about you? I am hopeful that 2022 will see us become kinder and more compassionate and more human. I am of the opinion, that we somehow lost track of the importance of the human element in things, in our race to have bigger and better and more. We stopped looking after our earth, the animals and all that nature supplies us with. Kill the bears, kill the coyotes, kill the wolves, we don’t want them in our neighbourhoods, kill the other animals for they are worth money for their hides and husks and parts. Yet it is us who is on their land, we have encroached into their space, yet we somehow have felt justified in it all because we somehow allowed ourselves to feel superior. We are know seeing that with our seniors, they are disposable, instead of the invaluable pieces of our society, whose wealth of knowledge is so undervalued. They ( this includes me by the way), have become a hinderance, a burden. We are doing it with our most vulnerable, those with disabilities, our homeless, our people who are laden with mental health and addictions. These are all an indication of a society that has little value for life, that is of course unless it is our own, if it impacts us then we want and expect someone to do something because we should not be inconvenienced. These are the things that have made this year seem much more difficult for me, they weigh on me, I wonder what more can I do, I want to be part of the solutions, I am not interested in being part of the problem, I don’t want to sit and complain, I am hopeful that the dawning of a new year will see a renewed mankind, one where life is valued above all else.

Ok onto other things, I have not been writing as much as I did in the past, it is more challenging these days. My health at this state means I have been spending more time in a lying position to keep the blood flowing with greater ease to all areas, I have an inflammatory conditions effecting me, but each day I wake up, I am happy, i am truly grateful for each day, no matter how much I struggle in the day, regardless of the pain, and lately pain is a huge issue, at times it is so intense it takes my breath away. But again I am at a time when our health care system is in total crisis, I am blessed with a great team of doctors who do not let me fall through the cracks.

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So although this last week saw me bedridden for the best part of the week, a few short moments of getting out to walk a block or two, then back to bed, I am still going to my Pilates every week and my physio, some days its all I can do to get myself there, but it is an important part of my well being and I am grateful to their willingness to work so hard with me. I am feeling such inner – peacefulness, in part it is because no matter my diagnosis, not matter that things are progressing and changing I still continue to look forward and do the things I can that keep me and my life going in a forward projection.

I am looking forward to spring, I have submitted two abstracts for Alzheimer Disease International Conference in London, England for April, I am looking forward to being part of an in person panel in Calgary Alberta in May, I am looking forward to perhaps an in person in Toronto or some other location in March of 2022, with the Canadian Consortium of Neurodegenerative on Aging ( CCNA) These are all things that propel me in that forward motion. If in fact any of these things can happen, everything depends on covid19 at the moment, and of course my own health abilities.

I am enjoying and hope once I regain strength again from this set back, to my continued work with Dementia Alliance International, also to my work with Dementia Advocacy Canada, to help ensure its continued growth in Canada. Helping at my local and National level is as important to me as the global advocacy work. Making sure our Human Rights for those living with Dementia are upheld. I have other projects, working with Age well, working with Google, all of these things are positive. Although at times it feels like nothing is happening fast enough, it is all things that keep me moving in a forward fashion. I do not want to end up sitting depressed and waiting to die. It would be easy to fall into that fighting pain and continuous ongoing changes, but instead I give myself permission to rest when required, to only do in a day what I can manage for that day, to know that if I have to miss something its ok, I can catch up, that I have to put my well being first so that I can continue to move forward. This is how I stay positive, and as I sit writing this and the snow is falling outside, it too gives me hope, hope that with every winter there will come a new spring. This snowfall is the start of the next storm coming in, I hope that everyone stays safe. I am waiting for my car to come home, but it is held up in the supply chain issue, so I am not sure when that will be, put its tucked in safe and so I can manage and know that it will be ready when it is meant to be.

As November comes to a close, it will be a new month next time I write. As the new month unfolds I hope it brings with us all a renewed sense of hope, and I hope you all find ways to feel the sense of wonder of the season.

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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

Random Rambling

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I am admittedly struggling on some levels, which I will talk more to later in this blog. First however I will tell you about my recent events, last week, I had another ( the last one a couple months ago saw me in the hospital for 5 days), episode of severe pain very low abdominal pain, followed by profuse sweating and feeling like I was going to throw up, trying not to, face in the sink dosing myself with cold water, the next thing I know I wake up on the floor, I managed to get to my bed, didn’t call for help, hospitals are busy enough with covid etc, as are the ambulance services, figured I would just lay there, hoping I would be ok. I slept on and off, stayed there until morning, had a couple of very quiet days after that, trying to once again slowly regain strength. Yesterday was finally that good day again. Follow up will happen on Tuesday with the Doctor, but given the stuff they are currently looking at with my blood flow issues to my muscles etc, and the impacts to my lungs, and other organs, I am of the thought that this too is related to that. Happening once could have been a one off, but happening twice is indicating something else. I am bad for not getting myself to the hospital I think in part because I know it usually equates to a fairly long stay. It is not my dementia that is the problem it is all the complicating issues that are there, the dementia is actually the part I can live with comfortably, for I don’t care if I forget things, I don’t care if I have to find new ways of managing day to day. I have managed to rearrange my life to accommodate all those things, but dementia is about so much more than memory loss, and for me with my dementia being vascular based, the complications for me are immense, those things are a problem for me, they are the things I struggle with the most. The blood flow issues, the issues with organs, kidneys, liver, heart, etc, because of blood flow, issues with my vocal and swallowing abilities, the fatigue, on and on the list goes, those are the concerning factors. Thats why I wish people had a better understanding of Dementia, because it is so so much more than people are aware of. But each day I wake up I say Thank you for another day, I am grateful that I am still here, I sit in deepest depth of gratitude that most cannot fathom.

Last night, was another piece of my dementia that people don’t understand. I spend last night, not asleep but not awake, it’s like being in a trance, like some kind of hypnotic event, it doesn’t frighten me anymore, but I am acutely aware that somehow my body is sleeping and resting, yet my mind has been transported to other places, thoughts are so clear, I can see things, understand things, my eyes are open, its un-describable to most, such a strange sensation, a happy sensation. I actually was able to see this blog completed during that process, even though I had not even started it. An altered state of being, most won’t or can’t or refuse to believe those things happen, it does not happen often, but when it does I can see that I am neither awake nor asleep, I can see the thoughts. I remember travelling through my thoughts, coming to some realizations, thinking about how I had to come out of that place as daylight approached, I remember at one time it being 342 am, but then I continued in my thought traveling, time traveling, I came back into the real space and time at 543, I got up made my coffee and thought about the night, I wondered if I may be more tired today because of not sleeping, but its not that I wasn’t sleeping, because I also wasn’t awake. It is a beautiful place to be when I’m there, happens infrequently but peaceful when it does. I also woke to knowing there is some things I need to do.

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The first thing I did was talk to God, ( or whoever you call it, the spirits, the angels, the universe), I talked about knowing that I was and am lonely, lonely for the companionship like that that I had with my husband, someone that you just like as a person, someone you just want to spend your time with. I talked about knowing that I was pretty sure I was not but here to just be alone, so I asked for helped in bringing the right person into my midst to change that, to set up the circumstance that would allow for two souls to meet. I am not lonely in the sense of being sad, or depressed or struggle spending time on my own, thats not it, it’s at a deeper level. I am also looking for my forever place, I am grateful for where I am it is safe, it comfortable, we have a sense of community here, as there are only 10 units, but it is not my forever home and I am deeply aware of that. So my my heart and soul is looking for its forever home.

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I am also really focusing on my spring plan, its a forward motion, and they may tell you that you should get your affairs in order that you should prepare for the end when you are diagnosed, but truthfully they should be telling you to get busy living until the end. So for me keeping things in a forward motion is the best way to ensure I et busy living instead of getting busy dying. So I am busy putting my plan into place, and I am so thankful for those who are willing to help me in my planning. If I die before I can do it so be it, if I try and fail, it doesn’t matter, what matters is that I am not sitting waiting to die. I am excited for my spring plans and as it comes together, I will write about it.

The next thing I have to talk about is a conversation I had with a lovely lady who I have had the pleasure to become acquainted with I who I now call a friend, someone I have yet to have to pleasure to meet in person, but hope to in the future. I have talked very openly to how I feel about the use of technology the good and the bad, and recently with our events in this province, it became abundantly clear to me that we have set ourselves up for catastrophic failures and inabilities to manage if there is ever a system wide failure and how possible that is, simply events like Russia shooting down satellites that caused debris to create a dangerous situation for our communication systems. We are so reliant on technology now I am wondering if we have crossed a line of becoming too reliant. Our gas pumps are computerized now, how banking, our medical systems, even our vehicles are so highly computerized now the possibility of a complete failure scares me more than most anything. Nope not spending my life fretting about it, instead doing what I can to ensure it would be as minimal as possible for myself. I know most people think that it could never happen, but as in all things often that is our own need to sit in a false sense of security. I think those who are living off the grid are really trying to avoid getting caught in the mess when it does happen.

But back to my friend, she was talking about the use of robots in certain settings, like care homes, which everyone knows I am opposed to, unless they are being trained to clear tables, do laundry, do paperwork, but I am adamantly opposed to them being used in any capacity that involves direct contact with patients. My reasons are many and long, but my friend Debbie summed it up well when she sent me a quote to use here and a picture that truly sums up what a robot cannot do. So Thank you Debbie for your words and your friendship: here is the quote in full: I have taken out the name and location for privacy reasons.

“Christine, This is XXXXXXXXXXXXXXXXXXXX   Her family took the picture and did a family tree (a little on the back).  Tell me a robot can do this!  To all those techy people who think robots are the end and be all, tell them for me and you can quote me,  “BALDERDASH!”

A picture tells a thousand words this is Debbie and the resident taken by the family

This has been a long post today, I will end by saying it really is a pleasure to share my thoughts and my journey with you. I hope you all stay well and have a good week.

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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

Understanding Human Behaviour

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Once again we have been hit by a natural disaster in the province where I live. British Columbia Canada for those that don’t know, was hit we a heat dome, and then devastating forest fires this summer. We are now in fall heading for winter and have been hit with a storm system that has brought unprecedented rain fall, so after all the drought and heat, the unusually high rains saw our grounds give way to extreme slides and wash outs, rivers and streams flooding, highways cut off, train tracks washed away. People trapped between washouts, the loss of life, the emergency continues. It is a time of great sadness seeing all this happen to the province, I was born and raised here, I love this province. I hate seeing people hurting, scared and wondering what next and when will it end. Whether you are impacted directly or indirectly, it is stressful and causes anxiety and fear for many. We likely will never fully understand humans and the behaviours seen, but we can at least remember, when things are difficult, and people are stressed, tired, scared and anxious they often exhibit and do things in ways they normally would not. We must remember instead of responding with anger we need to show understanding and patience.

I am praying people will remain kind. I have heard and seen much of people pointing fingers trying to look to blame, but that is wasted energy. Mother Nature doesn’t give a lot of notice, and she loves to somehow deal us with more than we were expecting. Like we somehow have control. Mother Nature, gives warnings, like we were notified for many days that this storm was coming, so we should have been as prepared as possible, then when it hits and hits hard like this storm, we at least were prepared as we could be. Humans have this burning need to believe we can and should control everything, Mother Nature reminds us we are not in control of all things. It is always hard to watch the aftermath of Natures wrath, at best we need to show extra kindness, offer help where we can, be extra patient. We are a resilient bunch here, we live where we can have extreme conditions, but the things we are seeing know are getting worse that the things we have seen in the past, larger scale, this is climate change, many don’t want to admit its real or happening, but each and everyone of us have a role in it. I believe living here we should never venture out even for what we would think is shorter trips like 3 or 4 hours, without our emergency kits, winter kits, summer kits, depending on the season. We live in a province of difficult terrain, with many miles of nothing in between and if things happen we can get stranded, a four hour trip can quickly become a day or two or more. I have travelled much across this province in all seasons, I was taught growing up to be prepared, yes lots think its a pain in the butt to put these things together, but get stranded just once and you soon realize how important it is. I have heard people say why didn’t they do more if they new the storm was coming, why is taking, so much time to get to people, yet things mobilized and happened as quickly as it was safe to do so. The work continues, and as much as we want ( them) to do something or more, we also all have a big roll to play. We need to be better prepared, have enough supplies at home to get by for a week or two, have emergency candles, water, etc. On the other side of things, this year has shown so much of the goodness that still exists, people pulling together to help however they can, it helps restore ones faith in mankind, when we are inundated with all hate, violence, racism and things we hear about every day. It keeps me hopeful of brighter days ahead.

I sat down last night and cried for our people, our province, our country, this year feels so much more challenging than last year, the year isn’t over yet, winter isn’t even here yet, but I know people here now how to survive, these are challenging times, its hard to see our province hurting and being damaged, its hard to see how people are struggling, hard to now your loved ones are being directly impacted.

I wonder at times, when people think someone should be doing more how prepared are we all for the likely hood that one day our whole communication systems could be impacted. When the internet goes down wide scale, when bank cards don’t work, automation is great until it isn’t, I worry we are so used to just being able to access anything and everything that we are losing the ability to survive as people did in the past. Progress is great, technology is great, but it does not come with out a cost, and perhaps the biggest is the loss of basic life skills, that far too many don’t have and aren’t taught. Life skills, survival skills, these are things we should be teaching in our schools, yes computer classes are important in this day and age, but life skills are invaluable no matter how much progress is made in this world. I hope that this year has instilled in all of us a desire to know and learn more of those skills.

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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 Musing of Thoughts


This morning, enjoying that first coffee, just letting thoughts free flow, from here to there. Its been a nice weekend thus far. Yesterday was all about getting stuff done, today will be all about relaxation.

As the thoughts free flow one of the things I am thinking about today is the upcoming holiday season. I have noticed many I know have and are already decorating, some started before remembrance day. Many have told me they really feel the need to this year, they feel they need the pretty lights and decor, maybe because there is so much uncertainty for people on many fronts.

While I think its fabulous that people recognizing that it is something they need and are honouring it, so often we feel we cant because its too early or it too this or that, but seeing people take more and put more attention to their needs , instead of being so busy to even think about what it is they are needing is a great thing. Every day is truly a gift, we should more effort into knowing and honouring what is that makes us feel good and bring us joy.

One thing we all need to do is also allow ourselves and others to honour and feel their grief, their losses, at this time of year we often have an expectation that they somehow put their grief aside because this is supposed to be a happy time of year. But perhaps if we honour the grief, the loss, it also allows room for the joy and happiness. Grieving may be about a person but it may also be about other losses, work, home, health.


These types of losses are real and we need to allow people to grieve them as well. By giving people the space to grieve helps them in their journey to healing as they discover who they are know becoming. Losses change us, at the deepest levels, that often are miss understood by those who have not endured those losses. But just as we need to honour and do the things that bring us joy, make us feel good, in those deepest crevices of who we are, so too must we honour the grieve. It does not mean we cant find ways to bring joy into the mix, find ways to honour that someone, or something. most importantly don’t judge people wherever they are on the ever moving line of the emotional train. Instead of trying to pull them out of it, try asking them about what they are feeling, about the person, or about whatever other loss they may be feeling or thinking about. Talking about that someone or something is often what someone wants more than anything, so please remember give them the gift of helping to remember and honour them.

Also a gentle ok, maybe not so gentle reminder that many with dementia find the holiday season challenging, its not that they don’t want to take part that they don’t want to share in the festivities, but they may need to do it differently, shorter periods of visiting, smaller groups, ( it is for many difficult to follow and process conversations when to many people are conversing). This little tid bit should help you make it more enjoyable for them, perhaps a quiet corner, away from the larger group, where a few people could converse with the person living with dementia, have some gatherings earlier in the day, luncheon meals versus dinner, maybe with those most treasured, more focused on the person with dementia, talk about memories that may trigger great memories for them. Even many of us who are still considered high functioning still need those earlier in the day events, smaller groups. We still want to see people, enjoy the holiday season, but for many of us late afternoon our fatigue ramps up, our cognitive abilities decline, and for many of us quiet time is what we need.

My Christmas will again be spent alone, well not totally alone, with my dog, its been it seems years since I’ve spent Christmas with anyone. I used to love to do lots of decorating and baking and cooking, the later two are by far more challenging know so I don’t really do it anymore. if and when i do things are done in steps and stages over the course of days. Nonetheless decorating i still love although that is scaled back by 100 times of what it was.

Today I will dig out what I have left and perhaps work on making a wreath to hang on my deck. maybe I can be ready to start decorating around the 25th, it takes me a week to fiddle about and get things so I’m m happy with it, so I like to have it all done by December 1st. so that I can enjoy it fully for the month. I really enjoy sitting with a cup of tea with the lights going , and my music playing.

Christmas past

So as we move toward another week, I hope we all kind take a few minutes today to think about what little things we can do too allow others to enjoy the upcoming season in ways that are truly reflective to who they are and not make it about the commercialized season that we have been lead to believe is how or what it should be.

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

Remembrance Day and Helping To Share some Great Things

Today is Remembrance Day Nov. 11th, I hope for many it is a day to remember our history and all those who have been part of it. For it is all those people and events that have helped shape each and everyone of us. Even if we, like myself have never had the chance to meet my grandfather, he fought in the war in Germany, he never returned home, we were never able to discover if he was taken a prisoner of war, or died fighting. mother and Uncles and Aunts lived their lives, never knowing what happened to their husband, father. A man whose role in my life, an important part of who I am, and should have seen me sitting with many happy memories spent with my grandfather, instead, only stories shared by my mother and grandmother, which were few, it was to painful for them to talk about.

So I never had the opportunity to meet him, my grandmother and my mother and Uncles and Aunts lived their lives, never knowing what happened to their husband, father.

Let us Remember - Lest We Forget - Blog - K100

But on Remembrance Day and many other days throughout the year, I think about him, I wonder about him.

I think about all those men and women, who were mostly actually very young, maybe 18, many younger, who were not given a choice as to whether to fight or not, this was looked at as their responsibility to go fight for the benefit of all others. So I think about how many mothers went without watching their sons and daughters, grow into full adulthood, that never got to see their child have children of their own. I think about all the wives who never got to experience the joys of bringing children into the world with their husbands, to the women who never got the chance to marry. I think about all the brothers and sisters that went through life without their siblings. All those sacrifices so that you and I could enjoy our lives today.

We have recently been asked to take a vaccine for the greater good, a small cry to the sacrifices made by so many, a small ask when you put it into perspective of all those who gave so much more.

So for my grandfather and my uncle who spent years in a concentration camp, who despite is life altering injuries, went on to work, give to his community, help others, played a very very large roll in my life, who looked after my grandmother until her death. I remember, I shall always remember, I shall always think about your sacrifices when I am asked to make seemingly small ones. I shall always remember it is you who helped shape me and my family to be who we are today.

The second part of my blog today is two fold as well, there is to things happening that are of great importance to me, so I am showcasing them both here. Both of these Organizations, Dementia Alliance International and Dementia Advocacy Canada, are great examples of how working collaboratively can and does create is such a positive outcomes. It is one of my top asks/wants is to see more of this happen and I believe these two great Organizations are well on the way to showcasing to the world how doing this benefits all with Dementia.

For Dementia Advocacy Canada, this fund raiser will allow and finally see the Organization to become a registered Not for Profit, this is an important step as the Organization grows so it can continue all its important work here in Canada with all levels of Governments, to ensure Dementia gets the attention it deserves. So please take a read, donate if you can, volunteer your time if you can to one or both of these organizations, they both deserve our help. Become members, and if nothing else please share both of these events.

DAC LAUNCHES GOFUNDME CAMPAIGN TO ENSURE FUTURE SUCCESS!

For over 2 years Dementia Advocacy Canada (DAC) has built membership across the country and operated as a true grass-roots organization with a volunteer team comprised of people with lived dementia experience and care partners. It has achieved remarkable success in influencing a Canadian Dementia Strategy, participating in relevant research studies , educating, informing and assisting individuals in navigating the healthcare system. It did this with no budget and relied entirely on volunteer goodwill.

In 2021 DAC undertook a strategic review and a branding exercise with external pro-bono consultants. The next logical step is to formalize and incorporate as a not-for-profit (NFP) organization. Funds are needed to cover legal fees, registration and start-up expenses. Once established as a NFP, DAC will be able to solicit funds for general and specific programs, with the ability to provide tax receipts for contributions.

But we have to start somewhere and that is why your initial financial support is requested through this GoFundMe campaign. Please help us establish DAC on a more solid foundation so as to better serve the needs of an ever-growing community. In his 2021 book, Neglected No More, Medical Globe & Mail journalist André Picard has painted a graphic picture of what awaits us if we do not act. The time is now!

The attached link to a GoFundMe campaign has been set up in order to finance these start-up activities.

Please review this request and contribute if you can, then circulate the link below, far and wide, to your networks to allow us to attain our modest goal of $5000 (unfortunately tax receipts are not possible with this platform)

DAC LAUNCHES GOFUNDME CAMPAIGN TO ENSURE FUTURE SUCCESS!

For over 2 years Dementia Advocacy Canada (DAC) has built membership across the country and operated as a true grass-roots organization with a volunteer team comprised of people with lived dementia experience and care partners. It has achieved remarkable success in influencing a Canadian Dementia Strategy, participating in relevant research studies , educating, informing and assisting individuals in navigating the healthcare system. It did this with no budget and relied entirely on volunteer goodwill.

In 2021 DAC undertook a strategic review and a branding exercise with external pro-bono consultants. The next logical step is to formalize and incorporate as a not-for-profit (NFP) organization. Funds are needed to cover legal fees, registration and start-up expenses. Once established as a NFP, DAC will be able to solicit funds for general and specific programs, with the ability to provide tax receipts for contributions.

But we have to start somewhere and that is why your initial financial support is requested through this GoFundMe campaign. Please help us establish DAC on a more solid foundation so as to better serve the needs of an ever-growing community. In his 2021 book, Neglected No More, Medical Globe & Mail journalist André Picard has painted a graphic picture of what awaits us if we do not act. The time is now!

The attached link to a GoFundMe campaign has been set up in order to finance these start-up activities.

Please review this request and contribute if you can, then circulate the link below, far and wide, to your networks to allow us to attain our modest goal of $5000 (unfortunately tax receipts are not possible with this platform)

This is the second piece of todays events. Dementia Alliance International as you likely know by know is the Organization that I credit with saving my life. They helped bring me through my darkest days, they helped me find hope and purpose once again. They still give and provide so much to my life, their peer to peer support groups are vital to so many, and having arms of the peer to peer support groups in so many countries helps ensure many more will have a place to find that hope, purpose and peers who can truly engage, share and learn from each other. I am thrilled to help with this newest arm, the DAI Canadian Social Support Group ( DAI-CSSG). Rose Ong and I will host this group and encourage others from across Canada to join and take part. It is free, but one of the best support groups for those living with Dementia.

I am also thrilled that this is another great example of two Organizations DAI and DAC working together to promote and engage people to take part. This will ensure so many who otherwise may not know of this great support group that they are not left at home. The sharing of this information is important. So please if you live in Canada, know of people living in Canada with Dementia, please have them join DAI and attend our free peer to peer support group. Also join DAC, membership is free as well, there is much both of these organizations can offer you, and who knows, you may find new hope and purpose and ways to help and engage, that will be fun, up lifting.

So again I encourage to take a look, donate, share, join, get involved, its time Dementia take a front seat here in Canada.

I hope in closing today, you have and take the time today to reflect to give thanks to those who have given so much and that you consider giving or yourself whether it be in donation of time or money, and to remember to be kind always.

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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.