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

Doing the Right Thing Does Not Always Come Easy

Today, I wrote a letter resigning from the board of Dementia Alliance International. This was a very difficult letter to write, it was one that came after weeks of wrestling and wrangling with a lot of things. I have in a number of recent blogs wrote about having a heavy heart and having things weigh heavy on me, and that I was being called to get grounded, to get reconnected with myself. Part of that meant allowing myself the time and space to hear that voice that guides you if you quiet all the noise and chatter that comes at us constantly. To allow our inner voice to be heard. It is not always easy to do, we bargain and even try to reason and justify things to be the way we want them to be even when that inner voice is trying to tell us something different. It’s been a lot of emotional turmoil. But today I resigned because I knew it was the right thing to do. It was the right thing for me, which means it is also the right thing for the organization. We can at times believe they couldn’t manage without us, whether that be a job or within an organization, we can at times let our own attachments to it cloud our vision, make our selves feel like we need to be there we need to stay, they need us to stay, or it needs us to stay. But if we peel away all the things that convince ourselves of and truly hear the voice that should be guiding us that voice that comes from within, then we would know when it’s time to step aside make room for others to step in and up, and allow ourselves to do things in other ways and avenues that can be just as valuable. We must also look at how things are impacting our overall well being and when things start having to big of an impact on our well being we have to be willing to take the step back.
It is all of these things, like the perfect storm colliding, that brought me to make this very difficult decision. I never spoke to anyone about it, I never talked it through with anyone, for i knew that if I did my decision could be clouded or changed, and I needed to be clear and listen to my inner voice.
I love DAI and all it’s members and all that it represents,I have spent three years on the board, working hard, I have spent longer trying to represent DAI well in every interview I have given, in every article someone interviewed me for always giving DAI credit for lifting me up, helping me find my voice, for helping me be a better advocate and a better person.

I am and will always be grateful, I am still a member who will work hard to represent support DAI in every way I can, I will just be doing from a place within the membership not from within the board. I can still use my voice wherever and whenever to promote DAI, I can still mentor others, I can still encourage others to get involved. I just won’t have the operational component as well. it may in fact turn out that I can be more effective as a member than as a board member.
There is a lot happening for me, health wise, personally, and I have had to take stock of how much I can reasonably put in and where and how. Scale back in some areas, do things differently in others, stop some things altogether. But one thing I have come to realize of late and when listening to my inner voice is that I have not been giving enough time to myself, too my well being, to doing those things that fill my heart with joy. If I don’t give as much time and devotion to myself as I won’t be able or have anything to give to things like DAI.
I wasn’t even sure what I was going to do or if I was going to do anything but I new if I listened, I would know what to do at the right time, That voice came to me clearly at 945 this morning, and by 10 I had written my letter of resignation and sent it to the board members, and as soon as I hit send, I knew it had been the right thing to do. Next month is the AGM, it’s the perfect time to set the stage for new faces to step into roles on the board. It will be exciting to watch and see as they help carry DAI into a new era. I will always be around to assist, to mentor. I have the greatest respect for the organization and the people within it who have brought so much to my life, and I say thank you for all you given, I truly hope whatever small part I have had that it has and will continue to leave a positive mark.

It’s time for me to think about what my life needs to look like for me for the next while.


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

As the Familiar becomes Unfamiliar

This saying really struck a chord with me today, this morning. Yesterday as I was taking Pheobe for her little drive, one we have been doing many times for many years, I had to stop because I realized that things didn’t look. Familiar, and they should, it was startling, it also made me pause to think about the day before I walked by a couple people who were sitting on a bench, they didn’t seem familiar either, but as I went by, they called out to me, by my name, asking how I was that it was nice to see me, I have no idea who it was, they seemed familiar, but I could not connect them to anything that would or could help me know how or why I know them. One more thing of many happening

So seeing this message along with another that was in my in box this morning, had me doing what I’ve been doing a lot of the last few days. Looking within, re-evaluating how much I can still manage and do, and how much do I want to do.

I have tried really hard to be a good and strong voice advocating for others, to help lift others up, to be a good mentor. I hope in some small way it has helped. It sometimes we have to look at ourselves and we have to do a self review. It’s a hard thing to do when you’re wanting to still try to do much, but it’s important.

It is also important because living with a terminal and progressive illness there comes a time when as much as you want to do so much to help others, you have to start looking at what you are doing for yourself. I have due to the pandemic lost over a year of being able to try to do some of the things I wanted to, it will likely hit two years before that will change much. It’s been hard on me, harder than I normally talk about it’s getting harder, especially with more changes happening. So it is time I put myself back into the equation. What do I need/ want for what’s left for me, and can I find a way to merge the two, or is it time for me to quietly slip off into the distance. There is much for me to contemplate, but it will ultimately have to be whatever I feel is going to allow me to continue to having my peace and joy each day, and lately it feels like there is to much weighing to heavy.

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

Beyond Words

Yesterday I had the privilege of taking in a webinar presented by Dementia Alliance International, the presenter Dr. Kozhi Sidney Makai, delivered a presentation so powerful, that when it ended I heard from many who said they burst into tears when the meeting ended.
I have been fortunate enough to hear Dr. Kozhi Sidney Makai before, but this presentation came at a time when many of us whether we were attending as a DAI member, a guest or a professional, needed to hear this powerful message. It had such an impact on me I am still struggling to put it into words, what I can tell you is that when it is loaded onto DAI’s YouTube Channel, it is a presentation you will want to take in.

It came it seems at the perfect time, it’s sort of like that perfect storm is taking place, so much happening in the world, the pandemic, health lockdowns, political unrest, much uncertainty for people, alarming rates of homelessness, even organizations seemingly competing with each other instead of working together for the greater good, looking at how they can help each use the strengths each have to ensure the best outcomes.

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Bring in this powerful presentation, for me personally, it came at a time, when amidst many changes in the effects of my illness, I have been struggling, feeling ineffective, feeling like no matter how much I try or want to do its not enough. Dr. Kozhi Sidney Makai’s presentation reminded me that Rome was built brick by brick, and for every person we touch through our work to make things better for all we do are building something brick by brick. He reminded all of the importance of DAI, in the world of Organizations in the Dementia Arena, the uniqueness and the amazing strength by those involved in DAI, to establish, maintain and grow this very global organizations, to see people from so many countries coming together to support each other, to build better communities, within our Dementia communities. DAI has a done what no one else has been able to. I was reminded that no matter how small my part in DAI is, it is important. I was reminded that for each person we reach whether we are reaching them individually or through our organization, we provide a ripple effect. That ripple will continue to spread.

I have so often said in my writings and interviews the DAI was life changing and life saving for me, yesterday’s presentation was affirmation of that. I am proud of the work being done, I am proud to watch so many of DAI’s members who go on to do incredible work in their own communities, cities and countries, for thats the ripple effect, 100% without a doubt its DAI’s crowing glory, watching all those incredible people doing so much. DAI has helped many go from broken to thriving, watching people find hope and purpose and then going out and spreading it further.

So to be reminded of the importance of doing and reaching even one, was an important message today, at a time when I was wondering how much longer could keep going. I was reminded that I just have to do what I feel I can, and it will be enough, and if I can mentor and help others along their journey, it is enough.

Each piece and twist and turn, every hard day, builds my resilience, builds my ability to make it through the never ending changes we must face when living with Dementia. It also leads to reminding me of all the other pieces and places in life where this is true.

I have many thoughts swirling from this presentation and I can not wait to share at our support groups, and beyond. I’m sure I will be be digesting and absorbing much for days to come.

My heart is filled with Gratitude and Thanks to Tamara Claunch for bringing Dr. Kozhi Sidney Makai to us, to DAI, for being so unique in the world of Dementia, for always striving to encourage and support members, and never ending appreciation of and to Dr. Kozhi Sidney Makai for bringing such an important message to us.

as a foot note: you can find Dr. Kozhi Sidney Makai’s books on Amazon

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

Frozen

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I feel like I’m frozen, stuck, unable to put thoughts into action, thought yesterday was Sunday, it was Wednesday. Not navigating things, having the thoughts but unable to put the pieces into place to actual turn the thought into actions or into tasks being done.
Swirling about, feeling like I am being ineffective, unproductive, not being able to start or complete anything, the executive function part of my brain seems to be stalled at the moment, organizational skills have disappeared. Strangely the thoughts are all there but the ability to do is missing. Sure makes me appreciate those days of clarity, those days of doing things as I would have in the past.
It erodes your confidence, your self esteem, these are the hard bits, the bits we often don’t talk about, the hard stuff, the changes we feel, others may not notice, but we do, sometimes these are blips, they come and go, just like the blood flow is at times good, somedays the function is good sometimes not, this week it has been the worst it has ever been.
I am still considered to be doing well and managing well, but I can tell you this stuff is hard, it erodes and eats away at the very core of who we are. I know many who are having changes in their abilities at this time, I wondered how much of it may be from a delay of some sort of the effects of covid, of our worlds changing so much in how we do things, or did things, our isolation, many areas coming out of lockdowns, others deeply entrenched in them still. Although for many pieces and parts for those with dementia we have been living a life of more isolation since diagnosis but that was truly and is in fact much more so since covid, yes we used zoom etc long before most, but other areas of our lives have been greatly impacted, and sometimes I think we have not acknowledged that to the point we should.
I have been working hard trying to make a difference for others living with dementia, advocating, doing all I can, but in all honesty, and if I’m honest, I don’t know how much more of the fight I have in me before I just want to withdraw and stop all of it. It’s getting harder and harder, and when little ever changes, seeing some kind of tangible change would likely give many of us a much needed boost to keep going to keep fighting. It’s doubly hard when part of your brain has all the thoughts of what you want to do and the other part wouldn’t unlock enough to allow you to actually do them, it’s exhausting.
Or maybe it’s just this new piece of abilities changing and disappearing that I need to settle into, I’m not sure at the moment, my mind is like a bouncing ball these days, thoughts bouncing around, nothing ever coming of them, I hate feeling so unproductive.
They say growing old isn’t for sissies, I can tell you living with dementia will test you unlike anything else, battling ones own mind, then battling all the compounding medical challenges that present.
If I was able I would be somewhere near the ocean right know until all that is going on in this brain and body came to a new understanding with itself.

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

The Wrecking Ball

There are times, there are moments that stop you in your tracks. That was me at the start of this week, you know when your doctor calls you for an in-person visit when they are doing phone visits these days, things are somehow going to be different. You try to brace yourself, you try to convince yourself that it’s nothing to be concerned about. Yet somehow you know, you feel it in your gut, you know your doctor, you know, you just know.

So the first thing you see is the letter from the specialist that starts with the words, this is a situation where it is better to be lucky than good….and you know, beyond the good the bad will be coming, and he goes on to say that he is happy with how my cpap is maintaining me through the night. Yup, that’s the good news, the silver lining, ok well it’s something. Then comes the “regarding her remaining complicated medical issues.”

Some things were not surprising to me, and knowing all the difficulties these last ten or eleven months have presented me with, I knew in myself that there have been significant changes. Yet somehow and I don’t know if it’s just me or others with dementia, I have lived with this sort of ideal that I have been doing fairly well especially being that I am now moving into my 7th year since diagnosis, so knowing they said 3 to 8 years, but fully believing I could give myself a lot more and maybe I somehow can still have a few more. Add in the new piece regarding my lungs and repiratory issues that have been a challenge since March, upgraded to severe, shit, you can’t figure out how or why, when you have worked so hard at exercise, nutrition, all the things your supposed to do. The inflammation componenant that has been so worrisome, and there it is, Myositic syndrome, this rare, sometimes, you just feel like someone let the wrecking ball loose on you.

For all the research for all I have done, it is yet another little known component that can be part of vascular dementia. It is why I have the fatigue, why my lungs, my vocal abilities, my issue with my arm, the intermittent rash on my face and the muscle issues everywhere in my system. I didn’t see it coming, somehow, I felt like I would just somehow through all the hard work get back to feeling like I was managing with my dementia very well. And then the change in my prognosis comes, even though dementia is a terminal illness, I was considered stable within those parameters, in other words doing well. That has now changed from stable to ” very guarded”, there really is no words needed to say what that means or says. Yup the wrecking ball hit full on.

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Physiotherapy is a must, my walking coach is a must, many more bits and pieces have to be looked at now. It’s very difficult because the specialist says my body is ageing prematurely, is it dementia driving it or all the other complicating bits, the truth is we will likely never know, and how quickly it will age is unknown but the last year’s setbacks have not been a good indication. Sometimes the pain is unbearable, but I soldier on. There are no magic pills or potions. The hardest part is on the outside you don’t see it, I still look ok, so people disbelieve you, it is hurtful. The invisibility is at times welcomed at others not, especially when you know people whisper and talk behind your back, because you don’t look like you have dementia or any of the other devastation and destruction that is going on inside your body.

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My quality of life is starting to be impacted more and more each day. But I believe with my strong will and attitude, I will learn to live with for as long as I’m given to do that. That I will continue to advocate for others, so that after I am gone, maybe someone else won’t’ have to deal with some of that stigma. I am writing about this deeply personal new chapter, not because I want or need anything, but so that maybe just maybe it will help others to see that you can’t always see the many many layers of things that people living with Dementia deal with, we not only have to deal with learning to live with our dementia, but we still have all the other curve balls life throws at us. So maybe just maybe this will help others see that judging because someone looks ok, is not ok.

But right now, I am mourning, yes mourning, it’s a huge loss, its a lot, it another part of me that I am losing. People often overlook the losses faced with Dementia, they add up and they can have a very real and negative impact on our overall well being and quality of life if we don’t acknowledge them, this is a case where I must take the time to allow myself to be sad, to feel the fear, and the agony of facing another huge hit. I will try to take that time so that I can get back to striving to have the best quality of life I can in any way I can.

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

A Difficult Post but Compelled to Write it

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The year 2020 ended and the year 2021 has started out like no others I can recall in my lifetime. There have definitely been trying times, scary times, and events, that none of us will forget. But none of us expected that as we started 2020, like most other years, putting our plans in place for the year, vacation planning, career planning, general family and house planning, the things most do as we move from one year to another, that things were about to change in unimaginable ways.

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No one saw what was coming in March when the world we knew would come to a crashing halt, how we would spend months in our homes, our work lives changed, how our children received their education changed, our health care workers worked tirelessly and under unbearable stress levels, we watched countries worldwide trying to manage the siege of the pandemic of covid 19.

We moved into summer when we became hopeful, yet apprehensive, we ventured out within our own neighborhoods and provinces a little more freely, we let out a half sigh, all the while bracing for what may still come. And come it did, fall came numbers of covid, started to climb, it seemed we had somehow become complacent about how serious the pandemic really was.

People worried about the economy, but the bigger worry was if too many get sick, and the hospitals can’t manage the load, the economy will crash anyways if people are sick they can’t work, so either we let the economy go sluggish for a time, or roll the dice with human lives.

There were and are many that have conspiracy theories about it all, but if we look to science and to the past the story is there.

I then watched as the USA, tried to navigate an election in the middle of a pandemic, we had some provincial elections here in Canada which all ran smoothly and almost seemed effortless.

I then watched as a sitting President ran amuck, created fear, and turmoil dividing a nation. I sat and watched as 2021 unfolded, a pandemic out of control, along with the President of the USA. I watched in horror as people were encouraged to fight, even though the election had been proven to be won. I watched a man whose only apparent thought was for himself and his huge ego, with total discard for the American people. I then watched as the very next day, in trying to distance himself from something he incited, he said that those who did this would be punished. I wonder if all those being arrested thought that he would come and save them, those of us watching knew he never would. He was and has been grandstanding since the election results first started to show he had lost, his ego needs to be fed, even at the cost of the country.

Please know these are fully my opinions, I don’t generally talk politics, I don’t understand how someone can jeopardize their own well being and their families for the sake of one political party or one person. I never align with any party, I listen to all and then decide who I will vote for. My way is neither right nor wrong, it does however lend itself to be thorough and thoughtful about who and what I am voting for, it is my belief political parties change along with the people in them, so I make my decisions based on who and what actions I see. So I struggle with the fact that someone would feel so compelled that they would deface and attack the very country, they say they are fighting for.

And I don’t want to get into a debate about it. Its simply me expressing my view as my heart broke and I sat and cried watching things unfold.

I had to start a meeting today, saying Politics was off the table, it was heartbreaking because I know it’s on everyone’s mind, there are some places where its acceptable our meetings aren’t, we have learned the lessons of the past, political views can be very volatile, even in the best-intended situations. Yet I knew for many it would do them the world of good to say it, let go, but doing so, could cause discord and hurt and cause members to leave due to divided views. These are not the easy moments of being the host.

My reason for writing this post is because whether we are US citizens or not, what happened the other day, impacts us all because it shows us how very fragile our own countries can be and what we believe in is. When people do not agree to disagree put stil put their differences aside because its best for the greater good or in this case the country, awful things happen.

This event along with the pandemic has shed some light on some serious issues we have in our societies regardless of where we live. I have many friends in the USA, I worry about them, I worry for them and their country and pray that going forward it can be in a way that provides room for much peace for all. I watch in our own country people who want to grandstand and sensaltionize things, to feed consipacy theories because it feeds something within themselves, without thinking or caring about whether what they are saying or doing is whats best for the greater good.

I’ve cried a good many tears through this year, for the friends who have lost loved ones, some to other things some to the pandemic, alot of losses, I’ve cried many tears for those I know who are struggling so much with all the isolation, I have cried for all those in the care homes, whose suffering we can’t imagine. I’ve cried watching the Black Lives Matter, I cried watching things unfold the other day at the capital in the US. But I also know that I live with alot of hope, that things will improve and maybe we will come out with a better world for us all.

I hope for all of us the pandemic has taught us that we need less, that material things are of little value, but relationships are the most valuable, that we must take care of each other, do a better job of taking care of our seniors, of our earth and of each other.

As the next few weeks unfold we will all be watching in hopes that all that has happened in the US can end with a new era being brought in, with healing and peace prevailing. Yes 2021 has started out with some of the worse of what we would ever want to see, but their is hope, their is light, if we remember to be grateful to be kind.

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

Mental Health,Dementia,Covid and Me

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Our mental health is and should be something we all pay attention too. I always have, I go seek help, when and if I feel I’m faltering, whether through my doctor, counselling or by attending my dementia Alliance International On line Support Groups or other mental health options there are.
My mental health is at the top of the list when I do my daily check-ins with myself, it’s something I do every morning. Since our first lock down in March due to covid, and because of being ill for months, it has been extremely important that I keep my mental well being locked after.
Many don’t know how or what to do to look after there mental health, because a large part of society has been running in high gear, running to work, running to meet up with people for dinners and coffee dates, shopping, running to the gym, to all kinds of things signed up for, running kids to all kinds of things to keep them busy, so no time to actually stop, and just breathe and just be, to hear your own thoughts, think about your happiness and well being from the inside. And then the world as we new it stopped, ( this is for me just another stoppage, my world as I knew it stopped with my Dementia Diagnosis), so maybe for me it’s another of those often unseen gifts our dementia gives us, we have already had to readjust our whole being, learn to adapt to a new way of life but for many, all of a sudden they don’t know what to do with their thoughts, we were too busy in the past to hear them, now they are paralyzing us.
We have many months ahead of us that are going to challenge us all, maybe in ways we can’t even imagine, so I know that keeping my Mental Health in good condition is vital to coming out the other side of this as good as when it started.
This starts with keeping myself focused on the things I can do, not thinking about the things I can’t do right know.

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Living alone makes it more important, there is no one to have a coffee with and talk about things, to help keep each other in check, so doing so myself is truly not an option but a necessity.
I look for things I can do everyday, often just little things, and even though I have recently felt and realized another round of brain slippage ( my term for more cognitive challenges due to my dementia), so a lot more of the things I could easily do are now much more challenging, I’m running into more of those things daily, so I have to manage them find new ways of doing things or be frustrated and upset all the time by them. I choose to manage them.
Lots of people struggle with this because we are so used to doing certain things, we think we don’t want to or wouldn’t like doing things that are not part of our norm ( again the gift of my dementia, everyday takes adapting, adjusting, reconfiguring, ), so winter is looming, instead of trying to maintain doing things as in every other year, we have to do this one differently, maybe that means putting up the Christmas in November instead of December, or having Christmas in January instead of December ( I did that one year out of necessity years ago, it was and still stands out as one of my most amazing Christmases.) my tree went up yesterday, today will be doing all the bits around that. Listen to music 🎼 instead of the news, The news can overwhelm us, we don’t need it every day, with technology you can get the pieces you really need when you’re able to manage it, we don’t need it coming at us for an hour or two every day.

We must find things that will keep our minds and our hands busy, the two things that together can really impact our mental health, things like adult colouring books jugs as puzzles, painting, drawing and yes even writing, is good for our mental health, and I can hear the sighs, of I’m not doing that I can’t do that and that’s just BS from many, but don’t knock it till you try it, you would be surprised at something as simple as putting a puzzle together or colouring a picture can change your mindset.
I realized that I was really going to have to ensure I had those things on hand for the coming winter. My walks can continue, also good for our mental health. Try baking or cooking something new, sew, work in your shop or garage building or fixing. And stay connected, do the old fashioned phone calls, do video calls or zoom calls. Connect with people that you often wonder how they are but are always to busy to pick up the phone and call. Texts are great, but the sound of another’s voice is so much more up lifting.

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All these things help keep our mental health in good shape. So has we all try to navigate a rapidly changing environments, and how we go about living, instead of being angry, instead of worrying about conspiracy theories or how about we focus on doing our best and our parts to help lift each other up, be cheerleaders for each other, maybe we can’t do it face to face but we can and still have the ability to be a light that shines in the dark days, together instead of fighting each other and arguing about how bad it is or isn’t maybe let’s put our energy I do ensuring we are doing our part to keep our mental health healthy, and that of all those around us who may need that simple phone call, so as we move into 2021, things may be different but we can still be standing strong.


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

Managing during a time of a Pandemic

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I am extremely isolated these days, partly because I’ve become more isolated and being in solitude over the past few years, that became a real thing not this fall but the fall before, there was a day that forever stays etched in my mind, and from that day on friendships vanished, others took a noticeable hit.

Maybe people think I wouldn’t notice the change, but I like most with dementia feels things at an unbelievably deep level, our intuition and our senses are very acute.

So I know the day it all changed, and I have learnt to come to be ok with it. The pandemic brought about a whole new level of isolation, lock down happened , I spent the better part of the last nine months being sick, once things opened up again, I still was not comfortable to be out and about, only going for necessities,

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I loved having social distanced coffees at the park, that was always a treat and so enjoyed those visits. People bubbles expanded, mine did not, my bubble is less than six, I would be hard pressed to count up to six who are part of my bubble. Am I being overly cautious?

Perhaps I am but after getting sick in March, laying in bed for weeks, and for the next nine months having my body endure what I call intermittent attacks on it, my lungs, my kidneys, my liver, my heart, my skin, it’s been unending, a few good days or even a week here and there but overall nine months of being unwell, spending more time in bed than out, at times not being able to leave my building because the stairs were unmanageable, and on the days I could somedays only managing to walk a half a block, this from me the walker, miles and miles everyday. Fighting huge amounts of inflammation throughout my body, fatigue that makes my fatigue from dementia seem like a cake walk and believe me it is anything but.

Overly cautious?,maybe, but my health can’t take to many more hits, is or was it covid or not? I don’t know if many people will ever have correct answers, testing not done in early days, not accurate enough testing, to many unknowns. I will take part in a trial when it starts here, but even antibody testing is not fool proof, the latest is that it may show you have antibodies to covid, but there is now more than one strain, so antibodies don’t necessarily mean you are safe, and they don’t know if you in fact can’t contract more than once.

So overly cautious maybe to some it would seem that way, but for me I fight hard to stay at the level I am because I live with Dementia (although declines is happening), and i to am aware of that. I am fighting hard to not be swallowed up by my illness, to try to maintain some quality of life for a couple more years, so if I fight that hard to have that living with my dementia why then would I not fight that hard to protect myself from COVID-19.

I know there are many who believe in conspiracy theories, I know there is many who think they aren’t going to follow the rules. I wrestle with understanding it, wearing a mask is a simple thing it’s a very small inconvenient thing, but it’s something we can do if not for ourselves for others, I wear mine because I don’t want to be responsible to get anyone sick, I don’t want anyone to go through my last nine months or worse, and for so many it’s far far worse. My heart breaks for the baby who in the very province I live in was brought into the world by emergency c section, because the young mother was having to be placed on a ventilator, and not even aware that her baby is born and healthy, and the hardship on her spouse and family. I know some people can’t take it serious until it becomes something that effects them or theirs. I know everyone is entitled to their own thoughts and feelings on the matter. I have always thought of others first and that is still true today, and I can respect others thoughts and opinions.

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My only hope is that we can all think about our others enough to all do our part, if we all do the things we know we can to take care of ourselves and our families, and yes this means doing things differently, thinking outside the box, getting creative, then we can get through this, but if we don’t if we all act like selfish and entitled spoiled peoples then the collateral damage may be more than you really wanted to pay.
I spend my days with my little dog ( Pheobe), I am so grateful I have her, she is great company and brings me great joy. I spend time cleaning drawers and cupboards, I’ve upholstered some pieces of furniture, I’m going to try to make some cushions, I only watch snippets of news, so that I keep my mental health in check, I socialize via a video calks and zoom and phone chats, with those who can and want to maintain relationships. I stay busy with advocating, working with research groups.

I learnt how to think outside the box while trying to form and build a life while living with my dementia, so maybe I need to be grateful for that, while I watch so many struggle, because they have yet to learn how to focus on what they can still do instead of what they may not be able too during this pandemic, for many the things they can’t do will be for the short term, months perhaps even a year or so, but for many of us we already have had to make those changes but for us they are permanent.
I hope everyone can find a way to stay well, stay safe, and be grateful for all that we still have.

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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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Christine Thelker © 2020 Dementia For This I Am Grateful Silver Linings Stress

Finding the Silver Lining

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Sometimes we get buried trying to stay afloat when our brains are fighting the constant fatigue and the brain fog sets in, sometimes we have to not fight it and go to bed, its self-care, its frustrating, but we learn that if we keep pushing we may end up doing more harm to ourselves and then recovery is even longer.

These days, I think about so many who are struggling on many different levels. The world is a different place right now, for all of us whether we have dementia or not. As we go through unprecedented times with Covid 19 and all that it entails, as we see very abnormal weather patterns affecting the world, as we see our local and global economies changing, its at times hard to look for and find the silver linings. Especially given the fact that life doesn’t stop, people still get sick, get diagnosed, wait for surgeries and procedures. People still have to put food on the tables. Yes life is still happening, but the silver linings are still there, we just have to focus more on them than the hard stuff. We will manage the hard stuff, it won’t be easy, we at times will feel like giving in and giving up, but we in the end will come through the other side.

What we can hope for is that as our new world emerges, its a little softer, a little kinder, that we see those silver linings and grasp onto them. The simple things, like being able to hug your children, to go for a walk or hike in the woods, go for a bike ride, enjoy the sound of children’s laughter, enjoy each other’s company. Take more time to help each other, help the neighbors, check-in on those you may not have seen or talked to in a while.

Our world has been turned upside down, everyone lives with a level of fear of the unknown, so acknowledge that we are all a little more on edge, give each other a little more grace and forgiveness, patience, and understanding. Something as simple as a warm hello can make the difference in someone’s day, its true that kindness matters. I talk to many and most if not all are feeling just a little off, some can’t identify why, others feel like they are on such unsteady ground, they don’t know how to maneuver through it.

Staying connected is harder with social distancing, but we should still be reaching out, have a social distance coffee in the park, don’t be afraid to open up and share the fears worries, and concerns.

For those of us with Dementia, who by nature of the illness ( although I don’t believe that, I believe it is by nature of people choosing to make it ok, to walk away, to not work to include then to accept and understand the person living with dementia) (but that’s for another blog), end up being more isolated than many of us would choose. Our support groups become increasingly where we feel connected, and understood, where we don’t have to work so hard to be, it was said at one of our meetings today by someone that they don’t want talk to other people anymore because they except me to be the way I was before and I’m not, so I’d rather just be here where everyone excepts me how I am today. That’s a big statement it speaks volumes to how people with dementia feel. it’s sad, however at the same time but not at all surprising. Those of us that do a lot of advocating are often heard to say ” I have Dementia, but I am not Stupid”. So our get-togethers with our friends and colleagues whether they are on zoom, video calls, messenger calls, video calls, are extremely important. We need the connection. The loss of our ability to go to conferences and to work with the various Research groups we work, which provided us stimulation, purpose, and social interaction all ceased, so our actual social interaction ( face to face) for many of us is very very limited.

We must keep striving to stay connected during these coming months, even though things are challenging us. If there’s one thing that those of us living with dementia are good at its adapting. And Adapting to an ever-changing world at the moment doesn’t have to mean bleak and despair, we can and should look to the silver linings, things like our DAI online support groups, and webinars and most are learning zoom, we have been using it for many things for a long time. It’s one instance where we don’t have to adapt we are already there. Silver linings just look they are there.