Categories
Uncategorized

Have we learned any lessons

I’m sitting here at the beach looking down the valley at the smoke looking out at the water I probably shouldn’t be out but I am having a coffee watching the ducks bob along and I’m wondering have we really aren’t any lessons.

I’m wondering since there’s been less activity both at the shores of the water edge and on the water with less people tossing garbage polluting the waterways although sad that it’s because our forests are all burning up and we’ve lost towns and communities will this reprieve by this time next year have been enough to help our waterways.

Photo by Pixabay on Pexels.com

Will we have a learn to respect on my hands and our waters and all that nature provides us for without it we can’t survive and yet we disrespected so much and have for so long has this year been enough between Covid and it is continuous rampage to our unprecedented heat waves and our fires in another corners of the world floods and all kinds of devastation how we learn the lessonsWill we have a learn to respect on my hands and our waters and all that nature provides us for without it we can’t survive and yet we disrespected so much and have for so long has this year been enough between Covid and it is continuous rampage to our unprecedented heat waves and our fires in another corners of the world floods and all kinds of devastation have we learnt the lessons.

It weighs on me more than most people can begin to understand my connection to it sometimes I don’t even understand but I know I have always been very connected to it I have always had a great deal of respect for it for our forest for a rivers or streams and it’s been very hard this year to see what’s happening to it all and I just don’t know if enough have learnt what they needed too.

Its much the same with the advocating at work with dementia and around dementia it bothers me greatly that for 30+ years people have been advocating and were still talking about the same things, as all those before us, the typical, stigma, language, lack of resources, and the list goes on should advocacy not have moved on to different things by now. Oh yes there is the evolving pieces being advocated for like rehabilitation, better pre and post diagnostic supports, human rights, and more, but why has the messages not been heard, acted on, why is it so hard to get actionable and tangible progress made. It feels like it mostly comes down to it being controlled by the big players and it’s all about money. And just like our basic society and the mess it’s in money and power seem to control if and when the right things will or can be done.
I don’t generally talk politics or religion, but there is so much political unrest in the world as well, again driven by money and power, and even right here at home a Federal Election just weeks away, I have heard people saying they don’t like either leaders of our two main stay parties, so typically we go back and forth electing one then the other, for decades know people unhappy, well I am going to think outside the box and I hope others do as well, this time I’m voting for the third of four parties, I’m going to think and go outside my comfort zone. I think about the saying, and I just heard it again the other night about advocacy work, but it applies here too, and that is “ if nothing changes, nothing changes, or if you keep doing the same thing and keep getting the same results at some point you have to do something different. In this case if we keep going back and forth between the same two parties then we will get the same things, so opting for leaving the comfort zone, voting for a party we’ve never given a chance too, the other two parties have made such a mess of this country over the last number of decades, that putting someone totally different in might shake the others to go back to the drawing board. Voting someone else in at this point in my opinion couldn’t give us any worse, in the short term anyways.

Photo by Lukas on Pexels.com

My mother used to tell me when I was growing up that I was born in the wrong era but I should’ve been born in a different time than I have was in living in a different time than I am and the longer I spend time in this world the more I believe she was right.

It’s quite likely why so much of the time I feel like I don’t fit in because truly I did belong in another time but I’m here and I try to walked along as best I can although that becomes more of a challenge all the time.

I feel and think so deeply and with so such emotion and I see things in different ways than other people and I can’t and don’t understand why that is except it maybe that’s a gift that was given to me, and maybe I shouldn’t question it. I do know that this point in time and with everything sitting so precariously I keep saying that it’s like the whole world is operating on some kind of tilt like it all earth itself shifted on its axis.

Things will be different going forward that I know for sure will they be better I don’t know I only have to believe that they will, too believe that somehow the people on this earth have finally learned that they were given a gift in all the other earth provides us and that if they don’t take care of it they will be the cause of the human extinction, we will cause our own destruction we will cease to exist only because of our own doings we will become our own undoing. So things will be different, better or worse maybe things will ride out being this way for a while. Exactly as we’re living now mostly in isolation also having to distance from others having to spend time and quiet contemplation maybe all these things are meant to have us stay this way until people do get the message until the lessons are learned but whatever and however I just know things will be different in the coming time not this year I don’t think. I’m just riding this year out. I just know things will be different in the coming time not this year I don’t think so I’m just riding this year out. I think things will also be very different for me personally going forward in the coming time and I don’t know if it’s better or worse either, but I do know it will be different . I don’t know what the path is it’s going to be laid out before me but I know there’s going to be a path very different than the one I have currently been on I just have to embrace it and I to trust that as much as I belong in a different era and as much as I was born at the wrong time in the wrong place that I will end up being exactly where I meant to be and maybe there’s a reason why I was born and was placed in this era at this time and maybe this next path will reveal a lot more. I have complete trust in God or the universe or the spirits or the angels or whatever you prefer to call it and I am going to be on the path that I meant to be on I just have to be patient and sit back and wait and it will all be revealed in its time right now it’s just a time of quiet time for me and I’ll just try to make the most of that quiet time.

Photo by Kaboompics .com on Pexels.com
Categories
Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful Living well with Dementia Silver Linings Uncategorized

Christine Thelker’s Memoir of Living with Dementia: For This I am Grateful

Christine Thelker’s memoir, For This I am Grateful Living with Dementia is a first-hand account of her experiences getting a diagnosis and living with dementia
— Read on alzauthors.com/2021/06/22/alzheimers-memoir-christine-thelker/

Categories
Uncategorized

Brain Health Awareness Month


I originally wrote this blog back in Sept of last year, but today I am running it again with a new piece added, it is Brain Health Awareness Month. I am acutely aware of this, I am also aware of the importance of looking after my Brain Health. Even though I cannot change my Diagnosis of Vascular Dementia, I can look after it, and look after all the other important aspects of my Brain Health, which include, rest, sleep, relaxation, de-stressing. Being mindful of the importance of finding joy, being playful, being present, being part of nature. Part of that for me means that I have scaled back on some things, doing others differently, exploring some new things, spending a lot more time enjoying the simple pleasures one can find on any given day. One of the other things I have recently come to realize is that although I live with my dementia everyday, there is some days I don’t want to do Dementia, and by that I mean I want my totally free days, that I don’t have to talk about it, I don’t have to work on any aspects of it, I don’t want to even think about it. No its not running away from it, its about allowing oneself the opportunity to just have a day, just a day like anyone else has, put it on the back burner so to speak. To have conversations that are about other aspects of life and living, because yes I am still living, I still have hopes, dreams and desires, and it doesn’t matter that my dementia may in fact rob me of the opportunity to complete much of it, or live much of it, what is important is that I still have those things. I want to sit around the campfire, and reminisce and laugh till it hurts, or maybe cry, but I want to do it all and at times I want to do it all without my Dementia taking the front seat.

That is taking care of my Brain Health, and for each and everyone of us looking after our brain health may look totally different, but looking after it will give us better days, the ability to perhaps enjoy more of those “Free Days”. I hope each of you take the time to take stock of your overall well being beyond just your diagnosis. We always talk about how we are more than our Dementia, but many of us forget to live all the parts and pieces of who we are, so I encourage you all to take a look and remember who you are, what you like and enjoy and remember to live life for all that you are.

Post from last Sept.

This image has an empty alt attribute; its file name is ivjk4775.jpeg

Our dementia is always with us always there, we not only live with it we advocate about it, we work with many groups and organizations trying to make a difference in the lives of others living with it. Those are extremely important things, they provide us with hope and purpose, sometimes others don’t understand how important that is.

While others have careers, clubs and organizations and hobbies that give them purpose, many have family, children and grandchildren, That play an extremely important part in the day to day lives they lead. They happily bring us up to date on all those things, because they are important in their life.

Yet very often they don’t offer us the same consideration, they spend less time with us or none at all, because they don’t want to hear about dementia, yet they are missing understanding the importance of allowing us to update them, can you imagine the reign over horror that would sweep over someone if we stopped seeing them, or limited it because we were tired of hearing about their jobs, their husbands, kids and grandkids, those oh so important pieces of their worlds, can you imagine, we would be thought of as terrible people yet that is exactly what happens to many with dementia.

Wouldn’t it be nice if instead of shunning and not wanting to hear we were given the time and space to update about our dementia that
then allows us time to enjoy life’s moments with our friends or family, camping, walking, enjoying nature, going for a drive, finding joy together in being together, having coffee, having laughter, even having tears at times.

Those are our dementia free times, the updates are done we get to enjoy the moments. Those are the very things we need the most and yet so many end up spending too much time alone, being isolated, not being included because people don’t want to hear or talk about something. You wonder if they are even aware or think about it in the very realistic manner of what they are doing.

This image has an empty alt attribute; its file name is img_1070.jpeg

I live for my dementia free ( not free), times, I wonder if it is perhaps partly because a lot of people live at a superficial level, without even knowing it. In fact it is how most people have come to survive and cope, but once diagnosed people living with dementia live their lives looking through a different lens than others, things come into sharp focus. We somehow gain a different perspective and gain a different outlook.

It saddens me greatly in the many discussions around why people become so isolated, and to hear over and over that it’s ok, they’ve become used to it, and yet you can hear the sadness and to me, it most certainly is not ok, and I doubt I will ever truly get used to it, learn to live with it yes, get used to it no.

it is true that people with Dementia become very good at being adaptable at adjusting their lives to manage all the changes they go through, this is one of those pieces that they should not have to and when we start educating everyone and teaching people to look at how and why they are treating someone with dementia in that manner, perhaps it can be one thing that has been an unnecessary hardship to adapt to disappear,

It’s yet another piece where we desperately need to help educate people, not only about dementia but about how perhaps their response to it contributes and does further damage to those already trying to find positive ways to live with a life-altering diagnosis.



This image has an empty alt attribute; its file name is 561f21ff-8a1b-4dd0-82b2-9f7a04c8be2f.jpeg
This picture depicts what friendship should look like despite Dementia
Categories
Uncategorized

The Day After

Photo by Thought Catalog on Pexels.com

Making a big decision, making a decision that for every bit of you that knows it’s the right thing for you to do, yet it still is breaking your heart into a million pieces, but for your own well being you make it.
Knowing that this was not down in anger, or discourse of any kind but done from within a place of self care (and self care is not a selfish act), It was something required mind, body and soul.


I slept for hours, but it was restful sleep, something that hadn’t happened for a long time. The next day, was a very quiet day, in solitude, and then I hit the wall, the wall that makes you cancel everything and you know you can’t even talk to anyone. When you’ve been running with too much stress, often self created because we put so much on ourselves to try to do and manage so much in an attempt to do good things, but we forget ourselves in the equation, and then one day you just have to stop. If we are lucky enough we stop before we are stopped,My health has taken the hit, I can ill afford to push those limits unless I’m willing to sacrifice whatever life I have left. Push myself to another stroke/ heart issues, I am unwilling to sacrifice and jeopardize my already compromised system, I am wanting to have a quality of life for whatever life I have left, that means being honest with oneself even if it means your heart is going to break.


Hitting the wall meant I needed to be away from the computer, the texts, phone, emails all of it. So yesterday was 9.5 hours out in the woods, where cell phones don’t work, where the only sound is that of birds, frogs, leaves, water, 230 kilometres ( or 143 miles) travelled yesterday, hugging trees, chatting with the universe dusty dirty, yes this is restorative, I will rest today and tomorrow I will be doing the same.


You see doing what was right for oneself does not always make it easy or mean that it doesn’t hurt, but it can and should guide you through to healing, so that you can then rebalance and find ways to still do much of what you love just from a different seat. It’s actually good to sit in a different seat at times, changes the view and perspective, actually can keep you from becoming stagnant and ineffective.
I slept a very solid 12 hours last night, feeling like I am taking the right and necessary steps to rejuvenate and heal. Feeling grateful for all those that understood how difficult and heartbreaking my decision was, and for the support. It will help as I move into rebalancing, for it was those very people who I represented sitting in that seat, and they are the very reason that I knew it was time to make room for someone else to sit in it. Selfishly I could have stayed in it, but out of love for all those I was supposed to be representing, I knew it was my time, because being in that chair really had little to do with me, for I was just a vessel for which things would/ could/ should flow. I do truly believe that sometimes a persons best work can be done on the ground floor, so this where I will be for now. It doesn’t mean in time I may not be able to offer to once again take another seat, it just means right know my well being, mind, body and soul, could be the only thing that came into the decision, and thats not an easy thing to do, we try to bargain with ourselves even, but in the end, your body, your heart and soul will guide you, you just have to be willing to take the steps.

I am going to miss much of what I was doing, but I will also enjoy just attending many things without the responsibilities that come with being on a board. My view will be different for sure.

DAI is such a big part of me and it still will be, hopefully always will be, but I need to be as big a part of me as that. I have scaled back some other things I was doing and revamped some other areas, and over the next couple months will focus a lot of time and attention inward and a lot of time and attention of finding my spark, I feel like I have lost my spark, and I will find it again I just have to have the time to do it and the only one who can me permission to put the time and energy into myself is me. This has been a difficult time.

Photo by ud83dudc34chuanyu2015 on Pexels.com

I also had to make the decision to break down and buy some depends briefs, for when I leave the house, not an easy thing to do at this age, but I will settle into it. I decided better to do that than suffer the embarrassment of having a flood while out somewhere. It wouldn’t matter much out in the woods, except that I don’t want to be uncomfortable.Vanity is not something I can afford at this point.

Today is spent quietly at home with my dog, making the preparations for tomorrows day out in nature, there are a lot of preparations, one has to be ready for all things, extra food and water, extra clothing, shoes, first aid supplies, you must always be prepared to survive if you get stuck out in the woods, so know that I am mostly ready, I will just relax, until its time for a nice hot shower before hopefully another restful sleep. And a couple other Photos from the day. Tomorrow will be another day of no cells, no wifi, or internet, Nothing is more needed right now for me.

Categories
Christine Thelker © 2020 Dementia For This I Am Grateful Living well with Dementia Silver Linings Uncategorized

Underwater Exploring

So I hate that people think that dementia is all about memory loss and the inability to do or learn things. We may not learn in the same way, but we learn, we may not do things in the same way but we do things.

People with dementia are anything but stupid, in fact, quite the opposite, people with dementia are inventive and adaptive, it becomes necessary as a way to live with the disease. We become very creative in finding ways to do things we once did with perhaps ease, but know its a struggle. Others may shake their heads watching us, baffled at the hows and whys of the things we do, but the important piece is that we do. We enable ourselves instead of disabling ourselves, often people with dementia are disabled instead of enabled because people assume that because we can no longer do something we once did, or at least we cannot do it in the way they believe we should, that we just should no longer do it or attempt it.

I don’t believe people are doing this disabling on purpose, I believe they think its kinder to take over and do or stop us from doing because it is often difficult for them to watch the changes in us and how we do things.

So in fact it becomes more about them and what’s best for them than about what’s best for us. There may come a day and time when we need that level of assistance and we all need assistance with certain things. I know there are some areas that I am struggling with more and I in am need of more assistance with. But that doesn’t mean I need assistance with everything and we should always be encouraged to do as much for ourselves as possible.

So this video illustrates one of the things I do, I love water, I love photography. People often ask why I take so many pictures, well pictures trigger memories and events and places and feelings associated with the picture. So this video is some underwater pictures I took with my little underwater camera while walking in a creek, while on a camping trip with my sister and niece.

For me, this is living in the moment doing things that bring me joy, they may not be award-winning photos but they remind me of things I love. It brings me happiness to take them, then put them into a video ( I struggle with this part but after many days eventually get through it.) Building power points, presentations, were something I did with great ease at one time, it is no longer that way, and it’s ok, it doesn’t mean I should stop or stop trying. It doesn’t matter if its other people’s standard what matters is that I still try. What mostly matters is that I am still trying to live my best life despite having Dementia.

Categories
Uncategorized

Human Rights, Ageing and Dementia: Challenging Current Practice

Todays blog is a video of my friend and colleague, Kate Swaffer, challenging us all to think about human rights, ageing and of especially about dementia as a condition causing acquired disability, in the context of challenging current practice. For the purposes of the video, Kate says, she was asked to talk about the key messages she had hoped the audience would take away from her presentation at the ADA Australia conference, in 2018.

It is because of People like Kate, like Christine Bryden, Richard Taylor, James Mckillop, that I continue to advocate, they have worked and given so much of themselves, and I feel I have a duty as person living with Dementia to do mine.

Categories
Christine Thelker © 2020 Dementia For This I Am Grateful Uncategorized

For this I am grateful

This is my first official blog about my book, on my new website. Well, it is also my first website! After my recent book was launched, it seemed fitting to set this up! Being diagnosed with dementia has been full of up and downs, and in writing my book, my hope is that the daily realities of living with younger onset dementia is helpful for others.

About my book: I remember going home to an empty house to try to digest my doctor’s news, “You have vascular dementia.” I thought to myself, I’m only 55 and I’m already a widow, the worst thing that could ever happen to me. But during my career working in Dementia Care, my co-workers and I had always felt that getting any type of dementia diagnosis would be the worst news a person could receive. Having witnessed the progression in so many people, I knew being a widow was nothing compared to what I was going to have to face. I soon discovered those past experiences would, in fact, help me forge through the coming losses.

The diagnosis itself was not the worst of it, finding no help or resources was. I had to try to figure out ‘what’s next’ on my own. I got my affairs in order, and came to terms with the fact that my career and the life I had known both were gone. I gave up my home, my car, my ability to drive, my hopes, and my dreams. 

Yet a stubborn streak remained in me. I decided, ‘I’m not done yet,’ and made it my new motto. Then I set out to find help, to find my new self. My search led me to Dementia Alliance International. At DAI, I found hope and purpose; this was life-changing and life-saving. I stepped onto a path of a whole new understanding of dementia, advocating, speaking engagements, and learning that life can be beautiful, even with dementia.

You can buy a copy of my book here…

Categories
Uncategorized

I’m not done yet

This is a recording of my keynote speech made at the ADI Conference held in Chicago in 2018. I’m definitely not done yet!

My full speech notes are on the Dementia Alliannce International website, available here…

Categories
Uncategorized

The thoughts from within

Image source: Christine Thelker

So this is my second first blog for my new website, so spent the last few days wondering what I should write about. Lots of different things have been roaming through my brain. Yesterday I was driving across the province I live in through old communities, back roads and byways instead of the busy main thoroughfares of today. It made me think about a lot of things, like how I feel like I’m somehow shrinking, becoming smaller and smaller in this world, I thought about how we all end up one day just a pile of ashes in a little cardboard box that’s handed off to anyone ( if there is anyone) who wants to claim us as theirs. Just a cardboard box and ashes, that to me means all the more reason to put such effort into today, being present, finding joy, despite my diagnosis, to live today, for tomorrow may be my turn to be the box of ashes. 

Wow that’s quite the path of thought while driving, maybe all the historic towns and buildings made me think about who were the people from then. But I have been thinking about the life cycle a lot. 

Other things on my mind, is the crisis in Long term Care, no Covid, did not create it it’s been there for a long time, everyone just always felt justified in reasoning that it’s not that bad, wonder if people would feel that way if they were sent to live like that for a month? And why do me need more meetings, more reviews, we need to start rebuilding our care homes, make them small housing units within communities, staff would end up with more job satisfaction, less stress and bullying, they would feel like they are making a valuable difference to someone’s life, instead of feeling like “ it’s the best we can do”, buried under mountains of paperwork which have created zero improvement in the quality of life for those living within the confines of the walls, small 6/8 bed units, that enable instead of disable that encourage involvement, that has adequate outdoor space that is secure but encourages people to enjoy fresh air, gardening, all those things a vital to quality of life. Turn the long term care homes into rehabilitation units for drug/alcohol, turn them into day care, turn them into housing for the homeless, and those who have mental health issues who were recklessly tossed onto the streets years ago. Let’s not fix the disaster has it is let’s not waste millions looking at what we need to do, let’s get back to putting some good old fashioned common sense and values into it. Let’s start providing as part of our medical planning, more Occupational therapy, physio, rehabilitation programs, in the home, let’s help people enable themselves, instead of putting them into facilities where they immediately are no longer able to even make themselves a cup, let’s encourage them to help one another, have staff working with them, to better their lives not shorten them. From food to programs that are designed as if the elderly and people with dementia are stupid, and do and provide meaningful engagement. Let’s also throw out the old image and understanding of Dementia and Alzheimer’s, let’s start showing how much people with Dementia are still capable of, let’s give them the resources to thrive, let’s stop making it something people fear, and hide, this promotes the rapid decline in those living with rather than having them remain valued members of our communities, that still have much to contribute. Let’s start by working with people living with dementia to help design impactful and practical training for all those in the various medical fields, let’s make it mandatory for anyone working directly with dementia clients to have specific dementia training that is relevant. Let’s just start over and let’s do it right. Let’s stop trying to fix something that is so badly broken and start doing the right thing. It’s long past time. The last four days my voice is going wonky  again, never know if it will return, it scares me, trying to use my voice while it still allows. 

Categories
Uncategorized

Welcome to my new website

This is my new website, and I’m thrilled! Admittedly I’m also in awe of Kate Swaffer, and her unending support and willingness to help, as without her I would have still been sitting in a frustrated heap, angry at myself for no longer been able to put these things together. So a huge shout and heart felt thank you Kate, a dear friend and colleague, and fellow activist and advocate, for making my vision a reality, and for knowing me so well. 

My book was released on June 30th of this year, and my first official book launch and signing was held on August 12. It was a great success and even though having to be very creative due to COVID-19, and ensuring we were in compliance with all the health Ministers’ rule, I’m grateful to all those who attended. 

It was surreal and for the weeks after my book was released until this last few days, I have been on an emotional wave that was unexpected. But then it was explained to me, we all can and do many things in life, but most often we only allow ourselves to be vulnerable to a certain point, but when we truly open up and make ourselves completely vulnerable it takes on a whole new level of being and the emotions that go with it are something only those who have been willing to go there can understand. 

People think you should just be happy, excited, proud, but instead you’re scared, apprehensive, nervous, sad, and yet somehow excited and proud too. It has, as all things do, taught me more about myself, that we are ever evolving, ever growing, and ever changing. 

We question ourselves; we question who we are today. 

I have had to learn to trust myself, to love myself, even the hard parts, and that’s a journey unto itself. In publishing a book, you become fully exposed, whereas most of the time we as people expose parts of ourselves we are ok with sharing, the rest, simmers within, unwilling to become vulnerable, we like the safety of the canons we create for ourselves to live in, being vulnerable you open yourself, to ridicule, to jealousy, to people unwilling and unable to maintain relationships, because they are not willing to stand in your vulnerability for fear they may have to become vulnerable, it uncomfortable. I didn’t know or expect any or all of this, when I released my book which was done with nothing more than a desire to help others, to bring light on a topic most fear. 

It wasn’t about recognition, glory, or receiving accolades, it was simply to make a difference. I have spent the last few weeks working through this immense amount of emotional toll going on within myself. 

Yesterday when driving down a windy country road, I suddenly felt myself smile. I thought to myself, you’re going to be ok, you’ve got this, this has changed me, made me even more aware at how much of a difference we can make if we are willing to use our voice literally or in the written sense, if we are willing to be that vulnerable.

It IS, and I am!

And it is who I will always be for as long as I am able. I hope you enjoy my new website, as I endeavour to showcase how even after a diagnosis of dementia, I am trying to live my best life.