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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.

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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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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…

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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.