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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.

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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.

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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.



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This picture depicts what friendship should look like despite Dementia
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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.

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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.

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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.

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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…

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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…

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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. 

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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.