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

Tired but not in the way one would think

My soul is tired, my heart is tired, physically I am getting stronger every day, it has been an exhausting 11 months, trying to regain so much that was lost during my illness unrelated to my dementia that struck in March. So although I am regaining physical strength, it is my heart and soul that are feeling a real deep sense of tiredness.

I feel bad because if I feel this tiredness in my heart and soul I can only imagine what my mentors and those before me must be feeling. Although we are very good at lifting each other up and encouraging each other to not quit to not give up, at times our souls, our hearts become so tired it’s hard to keep fighting, and fighting for things that should not even be relevant today but, yet years and years of advocating have done very little to change things.

Point of tiredness, an example if you will, back in December, maybe November, forgive my recall of dates, times, etc are not very good anymore, but I was attending a meeting, of an organization I was happy to take part in and be part of, I thought we could see some great things within our community. I still believe that to be true. But at that particular meeting someone from the Alzheimer Society here in BC did something, likely with no thought beforehand, that has left me and my soul tired. It affected me to the point that I have sat down to address it multiple times and couldn’t, I also couldn’t attend the meeting yesterday although I tried, I couldn’t bring myself to, this makes my heart tired. I often can’t talk about those things at the time, and my word-finding is more difficult, so I write about how things make me feel. So what may seem like nothing to most was huge and is one of the things those of us who advocate trying to make others understand and change.

So at this moment, I was asked in a chatbox, if I felt that nutrition and exercise played a role in dementia. I stated that I did and that there is much in regards to that knowledge. The person from the Alzheimer’s Society jumped in stating there was no scientific evidence to that end, totally discounting what I had said, making me feel humiliated and shut down. Then I sitting feeling angry but knowing it is never a good idea to respond when feeling anger. It was and is upsetting that over and over again we have to fight people who think they have all the knowledge when truth be told, they are merely paid employees of an organization and only know what that organization holds to be their truth unless they are willing to look outside the box from which they are fed. I could have responded and asked if she has ever bothered to actually do any research on it if she had ever bothered to go the World Health Organizations site and read what is there about this very topic if she has gone to any of the medical journals that are showing more and more the role the nutritional and exercise component plays in helping people maintain and live well with their dementia. This is not her area of work within the Alzheimer’s Society so not sure what she was basing such a statement on. But to discount someone else’s view, and leave someone feeling humiliated is totally inappropriate. It is why I always say at these types of meetings words matter. Had she asked me to elaborate on why I felt that to be true, it would have changed how I was left to feel. But this type of thing happens far to often.

The second thing I have run across recently, which in many was fabulous was attending a film festival hosted by Dementia Advocacy Canada, there were four short films, all of which were great and evoked a lot of different emotions. there was discussion after about the four films and I felt it was a great discussion, unfortunately, there was not enough time for some deeper discussion no fault of anyone’s time is precious and I hope at some point maybe we can have a further discussion around some points that were really glaring to me. It’s something that we see over and over again, and I am not sure if I believe any longer that in my lifetime, we will see this change because it has been advocated for so long and yet it continues.

The films and the filmmakers did a terrific job in what they did, I don’t want to take away from that and the organizers of this event did a fabulous job putting it together and bringing it to light for all of us. However again we see or I saw maybe no one else did, maybe because I am tired and my heart and soul are tired I saw it, maybe because it is an area I advocate very hard to change I recognize it. There it was four beautifully done films, but again all done around the more aged, those in a later stage of dementia, feeding right into the stereotyping that we fight so hard to change. The underlying stories were great the points they highlighted terrifically, but it also keeps the stereotype and the stigma about what dementia looks like going.

Again I am grateful for those who made the films, to those who put the film festival together, but it sure highlights why we are tired.

Those of us living with Dementia are trying to be heard, trying to help those who want to help us, who say they want to learn from us, and many do and are, and for all those I am grateful.

But still, I am tired, we have had many discussions lately ( those of us living with dementia), about how so many, even many who are close to us, don’t believe we can learn new things that we can and do have the ability to retrain our brain in how to do things we once did but lost the ability to, and if we do and can then it must be because we don’t really have dementia. Yet for all of us, we are as my friend Janet says “our own lab rats”, we are the ones trying and proving not only to ourselves and each other that we can and do adapt and learn new ways to do old ingrained habits, from simple how we put our socks on or tie our shoes to the more complex how we manage to shop, and cook, etc. Somehow despite all the adverse ways knowingly or unknowingly that people affect us we keep fighting for change, for understanding for a better way forward.

Even for me, because in conversations I have such trouble putting y thoughts and words together, I write, its a gift my dementia has given me, it has helped me find a skill I did not have before so that I could still express myself that otherwise I no longer can. It is the gift that I will be ever grateful for, even though I don’t know when or if it will be taken from me either.

It’s all exhausting, and I’m grateful to all those who advocate as well, they are the ones that keep me going.

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Advocates Advocating Christine Thelker © 2020 Dementia Event For This I Am Grateful

Wars, Depression, and Pandemics

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There are moments in time that change the world for those living in that particular space of time. Things like wars, depression, and pandemics, and here we are in 2020, again in one of those spaces of time, the world has been hit by a pandemic.

This has and is creating havoc for all, fear, uncertainty, apprehension. None of us like living with the unknowns, we have become creatures that like to control. We have also become creatures who exhibit a lot of self-interest and carry a great amount of entitlement. We became a society that has based ourselves largely on materialistic ideals, bigger, better, more, more, more.

I hear people talk about their rights and that the lock down’s happening are against their right, they want to shop, to buy whatever types of goods they want when they want. That’s a frightening thing for me, they say they are worried about businesses surviving, and that they don’t want anyone controlling what they can do and when. Yet when you peel back the layers that’s exactly what has happened, people were controlled without realizing it, big business, commercialism, brainwashed people into believing they needed things, had to have the latest greatest of this that, and the other thing. That we needed to buy the next greatest thing out for our kids because Sally’s parents down the street were making sure she had, they convinced us to climb onto this fast-moving conveyor and run to have more, that we no longer could sit and relax at home, we needed to shop at all hours of the day and night, all days of the week.

So truly now that there is a pandemic, and we are being told we can’t do those things ( totally unnecessary things), that keep people in debt, stressed, and only keep the big players making more and more money, people are are willing to or unable to see the very thing they are fighting ( being controlled), is the very thing that has happened.

Hearing people say things like Christmas will be ruined is most unbelievable, Christmas was never supposed to be about shopping, and scrambling and robbing people to have the best gifts under the tree. Hearing that just confirms to me how truly sad the state of being we as humans are in.

Wars, depressions, pandemics of the past, have shown us that in order for us to thrive we must first face adversity and change. We are in a great time of change. We are at a crossroads, are we willing to forgo the human element, do we care more about our right to indulge ourselves in commercialism, that we are willing to refuse to do what we know will help and protect ourselves and our families? Have we become the society that has placed such little value on human life? Have we lost the ability to do what we must for the greater good? Yes, some businesses will not survive others are thriving, new ones are finding their way, others are adapting to new ways. We don’t want anyone’s business to fail but we must not let commercialism take precedence over taking care and looking after our very beings. For if we fail to look after the people the businesses will not survive anyways.

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I was on the same trajectory as everyone else, I rode the conveyor along with everyone, that is until my Dementia hit, it was like being swept away in a tsunami, being washed ashore in unfamiliar territory. Through that, I started to have to survive the multitude of losses, and they keep coming. But I have survived the many changes and challenges, and know as I walk through the uncharted time of walking through a pandemic, I know have a new uncertainty, trying to keep myself safe, knowing if things get really bad that I could be one of the ones if I get sick who end up being triaged and not getting the care because of my diagnosis.

Yet I don’t and can’t live with that fear, I have to look at doing all I can to stay safe, and in doing so it means I am also doing all I can to protect others. I am determined to come out the other end of the pandemic, and yes there will be an end just like war, depressions, and other pandemics there will be an end. I have to stay positive, I live alone, I have no one to help keep me calm, to help me destress, so I have to work hard at keeping myself in a good place mentally and as physically well as I can.

In past times, they did not have the ease of news any time of day or night, or the briefing by our public health, people heard through newspaper and through other people bringing the news from other areas and new what to do, and they did what they needed to do. It saddens me that we know have to be told and when told we want to create unrest over it, instead of pulling together and doing everything we can to help all get through this time.

This means I look to the future, and hope that as we move out of this we come out with a world that is less hurried, less about greed, more about helping, caring and making the world a brighter happier place. Where we place the value back on the human being instead of $$$, things and stuff. Where our elders are looked up to and everyone ensures they are looked after, where we can walk down our streets and around our neighbourhoods feeling safe and knowing our neighbours long before a catastrophe happens in our lives or theirs. Where we hold the door open for someone, where we are not to busy to stop and help.

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Yes, those things still happen, we see people pull together to help, most of us have felt the kindness that can and does surface, but I hope after this pandemic it becomes the norm. I hope we go back to The small mom and pop businesses thriving, I’ve never liked big box stores. I hope as and when we come out of this pandemic knowing full well life will be forever changed because of it and because change is part of life, we see the human piece be the piece that super cedes all else.

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

Waking up Happy and Grateful

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This morning I woke up to receive the go-ahead to share and post an interview done last week by Hanh Brown of Boomer Living, they have published it now so I am happy to share it with you all. I really enjoyed this interview and have since been asked to take part in a virtual event in December that Boomer Living is doing and I will be doing a short speech. I take all of these interviews, speaking engagements, and the work I do very seriously, I also understand the importance of being my true and authentic person in all these things.

I do it for no other reason than to try to bring awareness, change, and hope to others, to make a difference. I don’t want to waste my life feeling sorry for myself, wallowing in self-pity, using my eneg=rgy in all positive fashion, helps me live my best life, despite living with Dementia.

So I am grateful for those who have helped me in my pursuit to help others, by promoting my book, doing interviews, providing me speaking opportunities.

I know the day will come when those things will no longer be possible. I can hear in this interview, how my dementia is changing, I hear my mistakes, dates wrong, the hesitation in speaking trying to find and formulate the words, yes, I see them, I hear them, I live with them. But I do not let them stop me from my desire to be a voice for those who have or cannot use theirs, I think about all those people each and every time and try to right by them. I feel a sense of responsibility.

No there is no glory, no accolades, there is no need for those things, if it was the goal to attain those things, I would have taken up acting or singing or something. This is about contributing in a meaningful way during my time here.

Life is short and fleeting, to know that when the end is here I have done my best to make the world a little better in some small way, means that I have lived, and that is enough.

Thank you, Hanh Brown and Boomer Living, this was a beautiful start to the day.

You can listen here:

https://www.youtube.com/watch?v=6ikuvQ02iN4 https://apple.co/3fyacft, https://bit.ly/3nKd386

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Christine Thelker © 2020 Dementia Event Stress

Feeling for Friends in uncertain times

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I live in Canada, but I have many friends to the south of me, many friends that live in the USA. Many people here in Canada have connections to people in the USA, and for most even if they aren’t connected they are watching today. Canadians have always paid attention to what’s happening south of us because we now what happens there impacts us here.
But more than that this time we are watching and worrying because of the all to real fear of civil unrest or even civil war, depending on how this election unfolds.
I won’t weigh in on the political aspect, per say, but I will say it has caused me to become somewhat dismayed and disappointed in humans. I cannot wrap my head around the fact that people get so entrenched ( brainwashed if you will ), that they will behave in manners that are unthinkable to me.

Oh I believe in the right to protest ( peacefully), I believe in using our voice for change, but when we become so entrenched in basically I will call it right or left, that we loose our ability to think and behave first and foremost as a good and decent human being, then we have truly lost something. I have watched grown men and woman talk and behave in ways that all I can think is dear god I hope they aren’t raising children.

The unrest is frightening for those of us watching, if you look back at history all great countries fall, is this one of those times? I worry about my friends and their families they are good, kind, hardworking people, they have the stress of a pandemic that is out of control there, and they have the election.
I was brought up in a time when we didn’t discuss politics, you listened you learnt and you decided who you would vote for and you quietly went to the polls and cast your vote. Most husbands and wife’s didn’t even discuss it, they respected the right for them to each vote on their own, they respected the sanctity of their marriage, so it was a topic that was off the table. I after watching the behaviour of people who taught themselves as “ good people”, am wishing that was still the way it was. That people went about their lives being good and decent humans, who went and voted on voting day, knowing if the vote didn’t go the way they hoped they would have the chance to change it in a few years and then they got back to the business of being good decent humans.
They say things always get worse before they get better, perhaps that’s true, they say whatever happens south of us is going to have a big impact on us, political parties rise and fall, and I just hope and pray that it doesn’t create in us the inability to be decent human beings above all else.
So to all my truly wonderful friends south of the border know we are watching, we are thinking of you, we are praying decency wins.

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

Bringing the conversation to you

Hosted by Noelannah Neubauer with Special guest Janet Douglas

A very special event that will enlighten uplift and bring insight to all those working in Dementia, to those living with Dementia and all those who have been touched by Dementia.

You will hear from Noelannah as a researcher, and from Janet, a person living with Dementia and others, about the importance of sharing information and how Dementia is not what is percieved by many.

I so look forward to talking and sharing parts of my book, hearing the prospectives of Noelannah and Janet, and others who may wish to share.

the link is in the invite….. MARK YOUR CALENDARS

Thank you to Noelannah and Janet for all your hard work

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

The things that make the hard days easy

Today the above event was announced, today I did a 45 minute interview with David Harvey of Dementia Dialogues, that will air on November 9th. Yesterday my neighbors called an ambulance and I spend the day in hospital having X-rays, Scans of my head, Ivs running, multitude of medications given, many tests run, you see I’ve been unwell since the 29th of September, yesterday another event ( that’s what I call them, because was it a true TIA, one of the many silent strokes I suffer, or a combination, does it matter, a major stroke didn’t happen because of quick responses, today my internist called I have to be at cardio/ pulmonary at the hospital at 815. I’m hoping to be home in time for a 10 am meeting with the Canadian Consortium of Neurodegenerative on Aging ( CCNA). I’ve missed a lot of things over the last month, that never makes me feel good, but I still have been pulling up my big girl panties, and try to manage one thing a day.
That’s hard for me, it’s hard for many of us with dementia when our brain and bodies aren’t letting us do all the things we want and hope to, or to do them to the caliber we want from ourselves. The others I have met with dementia, the other advocates I have come to know all seem to put high expectations on ourselves. We truly need to learn to applaud ourselves more for how much we really do get done. We also need to allow ourselves down time when we need it, after all we do live with a terminal illness.

The thing is people like Noelannah Neubauer and Janet Douglas who have worked so hard to put the upcoming event together while I was and am doing all I can to turn the corner once again in my dementia journey. I’m battling for another decent run of functioning.

People like David Harvey, people like Kelly here in Vernon, who is putting together a similar event on December 15th, more details to come later, these people who not only support my efforts to make a difference for people living with dementia, they inspire me to keep going.

Having a reason to keep pushing forward is important, it’s important for everyone and for many of living with dementia having that purpose pulls us through the dark and hard days. It at times seems that it would be easier to give in to our illness, but feeling that way that doesn’t feel good, so it’s not an option not yet any ways. So for now I’ll spend what energy I have working with my much loved Colleague Kate Swaffer and DAI, I’ll continue to work with CCNA, with Alzheimer’s Disease International, with TREC, and with Agewell, and others, in an effort to see real change.

I will continue to do all I can to look after myself as best I can, and I will be grateful to neighbors who check on, to friends that drop and run to do what they can when I endure another downturn or hospital visit.

I will be grateful to those who are giving of themselves to help and give of themselves so that I can continue to use my voice.

I hope you’ll join us on November 12, for what will be an enlightening and uplifting event.

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Christine Thelker © 2020 Dementia Event For This I Am Grateful

My next book signing event

Thank you to Remax Centre City Reality and the Gathering Tree Restaurant for sponsoring me and this event, so looking foreword to Seeing everyone

Please join me at my next book signing event September 15, in Valemount, BC