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

My UFA guest piece

blogs.ufv.ca/chasi/2021/01/22/guest-post-living-with-dementia-during-covid-19/

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

Being Brave and Advocate to Advocate

Today I’m writing about two things, the first being about being brave. I had to learn to be brave after my husband died 15 years ago, I was young, it took a lot of bravery to wade back out into the world, to re-invent who I was, to build a new life a solo life. It was not at all what I wanted to do, I wanted to hide, I didn’t want to do life on my own, but finding my way to be brave, I eventually did, or at least felt like I was.

Then came my Dementia Diagnosis, again, my world was shattered, again, not wanting to do this journey, again having to face that the only way was with bravery. So finding my brave side scared much of the time, I put on the brave armour and sought out a new life once again, again as when my husband died, I was no longer the same person, dementia diagnosis did the same thing, how could it not, life as I knew it ended that day. ( I believe with 100% certainty that if and when we finally see the delivery of diagnosis change and provide the support given to others with serious illness and when we start helping people live with their illness instead of telling them to get ready to die, we will then have the ability to have our lives change at a slower rate and we can grow into living with our illness) but at this time that is not the reality, you are told get your affairs in order, there is nothing we can do. ( Those of us living with the illness now that is not the reality, there is much we can do, much that can help slow the progression, much that can help us live independently and maintain our lives for longer.) But instead, we are left to figure it all out on our own, which usually means a time of depression, fear and anxiety, but most ( sadly not all) find our way and find our way to brave our new reality. I have never met a more resilient and brave bunch.

I had to be brave again, this time on a much lesser degree, but still having to find the will to be brave enough again to wade into unchartered waters. I think maybe the pandemic will find many finding themselves in places that require them to go beyond what is comfortable and try and do things that require them to be brave. Today was that day for me, I managed one haircut in over a year, for me, who’s hair is baby fine, ( always has been), growing my hair to any length is near impossible. So today with inspiration from Susan Macauley and encouragement, I summoned up my brave and I cut my hair, After the first chop of the scissors, it was actually a freeing feeling, total abandonment. The results are the picture at the top of this blog.

I love it, it feels great, I was elated. Yes I know all the hairdressers out there are cringing, but with an immune system that is compromised, living in my bubble of one, means a trip to the hairdresser was not and likely will not be in cards for me for a long time to come. So I feel uplifted knowing that if I just am brave many things can happen.

Secondly, I want to talk about the advocates and all the great work they do. There is no glory in it, there is just the knowledge that maybe you can help make a difference for others.

It does provide hope and purpose, which is important for anyone, it is rewarding when you meet someone who is struggling and you are able to support them to finding hope and purpose. It is rewarding when you see any small and usually, they are small incremental changes happen. It feeds that part of ourselves that we all need and want to feel that we are of value, that we are contributing to society in a positive manner.

It also makes us vulnerable, if we are not willing to follow the scripts many organizations want us to we can be subjected to some hurtful discouraging remarks.

This is when it becomes so evident just how important our fellow advocates are to us. It is far more than just discussing the issues, planning what’s next. It is about friendships, laughter and tears. It’s about picking each other up when we no longer feel we can keep fighting for the change we so desperately need. It’s about being each other cheerleaders when we get those small wins, and being the mentors to those diagnosed who join us in using our voices and it’s about being that shoulder when we feel the weight of it all sitting on us.

I know I could not continue doing what I do without the support, compassion and caring of all those advocates I stand with. I only hope that I can give them as much as I have received.

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

Trying to Understand and Being Somewhat Afraid that I Already Do

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For days now I’ve been sitting thinking about and trying to understand why it seems so difficult to get organizations to work together particularly dementia Organizations. there are organizations that do some things very well, while others do other pieces well, but instead of working collaboratively, there are very few and very seldom where they work for the betterment of those living with Dementia.

The point, in fact, last year before the pandemic I was at our local Alzheimers meeting for people living with Dementia. As a person living with dementia, I can tell you that although they try, there is nothing about those meetings that make me want to attend, other than the fact that I like the people, but those meetings are dismal at best. On several occasions, I brought forward the idea to introduce or zoom meetings so people would have an alternative to the only once a month meetings and it would enhance the local meetings because people could meet others in various areas, and would have much to bring back to the local group. It would also fill the need for those who needed more than just a monthly meeting. This was not at all well received and there were no further discussions, I have since then brought it to various levels of which there was no interest.

So then I would wonder why? What would stop them from actively looking at how they could collaborate and together bring more to the quality of life for people with Dementia.

So then a couple days ago I am sitting at home, and they call to tell me that because the groups have been cancelled for almost a year, that they were going to try to put together zoom meetings if they could. I just about fell off my chair, here we are already having something in place, and it won’t be considered, so again I am asking myself why? So all those people had no supports all this time during the pandemic, when had they looked at what we did, they could have partnered with us and those people could have had support until in person would happen again. It breaks my heart, that people’s and Organizations’ egos get in the way, of truly helping support people living with dementia.

We don’t need to nor should we be reinventing wheels that are already in place no matter which organization, instead we should be working together to optimize and help each other. When this finally happens we will see true change for people living with dementia.

They could make it out to be too complicated, but it’s not, we find often things are over complicated unnecessarily. I go through many different scenarios and pictures in my mind, many different conversations with myself about all the why’s and why not’, I cannot come up with a could reason.

And then the light bulb moment, this has nothing to do with what would work and enhance the quality of life for people living with dementia, this is about money. It is about the fear that they may lose funds, by all those who donate to them, if they are engaging with other organizations. If we look at how much of the funds raised actually trickle down to help those actually living with Dementia, then it becomes clear.

There are some organizations that are trying to work and collaborate with each other with great success. But breaking through the old school way of doing things is a huge challenge and unfortunately, it is why we see so little change after years and years of advocating because sticking to the old school thought process and ways, is what brings in money.

It is why the stereotype and stigma still remains, it is why we have yet to change how the education facilities deliver their programs around dementia. It is why we still see human rights violations around dementia.

What we really need is a conference with people from all the various Organizations sitting at the table to look at how and what we can each contribute, and get to the business of actually bringing some tangible results for people living with Dementia.

They say money is the root of all evil, but truthfully it has the ability to do a lot of good if it is used as and for what it is meant to. One thing that Covid has shown us is that a lot of those fancy office buildings that eat up such a huge chunk of money that so generously gets donated, is really not needed, so maybe its time to rethink, how these Organizations are operating, and reallocating funds so they actually have to ability to do they good they were given to do.

We cannot nor should we sit back quietly accepting that it’s the way it is, it’s time to open up the box, colour outside the lines and find new ways so that we finally see the change that is years past due.

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

A Slip of the Cog

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In the earlier part of fall, I had new testing, or is it new if it’s done every so often, maybe not new just retesting at the Kelowna Clinical Trials. They test various areas to see where you are being impacted the most and what areas are seeing the most changes and or improvements. At that time, most aspects I have been holding steady, and by that I mean no significant decrease since my last tests, but the area that controls things like my ability to recall had taken a significant hit. Yesterday, I was once again tested, not at the same place this is testing 5hat is done every year and half approximately, it is a 2.5 hour testing done via telephone, again in many of the ares testing, and I can tell you cognitive testing is exhausting in itself.
Well the area that manages things like my ability to recall has taken another hit. I knew I have had more difficulty with it but do the degree it is now effecting me was quite unsettling. Most people don’t realize how much of their time they spend recalling things in a day. If you stop and think about it just about everything you do involves recall of some type, from the simple, where you keep your socks, to the more complex recall of things, people and places and events in your life.

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This all takes me to why I take so many pictures, they trigger memories, in essence help me recall things, events, places and people that I otherwise no longer could. At times they are what helps me build time lines, however even that is becoming more difficult. What usually happens is that looking at pictures will spark a particular feeling, anything that I connected with at some type of emotional level, good, bad, happy, sad, whatever the emotions, will help trigger the memory. Sometimes things like on Facebook will come up with a photo of a memory, it then sends me to go looking through photos to piece together what that memory is supposed to be. I can no longer tell you exactly when I ended up off work, when exactly my diagnosis was, but I can tell you how I felt at those times, I can no longer tell you when I sold my house or where I went to from there, I can tell you how I felt selling my house.
Which brings me to where I ended up again today, looking at photos, recalling a time, a place, a trip, one of great significance for me,


My trip down the Oregon Coast. With my beautiful little car which I miss dearly, and my girlfriend, who I also miss dearly, but as with all things life changes, and we must adapt, dry our tears and forge ahead.
This trip was significant because I had just recently been diagnosed, I was a lost soul in search of answers in search of who I was know and who I would become. It was a time to breathe, to exhale, to try to calm the fear that was running through me. Which of course comes with a dementia diagnosis when you’re told to get your affairs in order that nothing can be done. You are swallowed up by fear, all I knew was what I had worked, end stage, late stage dementia. Not one person I knew had an inkling about early onset. Going to the ocean was my place to figure out how to breathe again, the ocean or water of any type really is and always has been a favourite place for me to be, always where I felt the best and at that time I needed to be somewhere we’re I could somehow find a way to feel good. My girlfriend was the perfect travelling companion, exploring beaches up and down the coast.


It’s still a place I go to on my hard days like today, struggling with the realization that for as well as I’m doing there is more challenges that I deal with,it impacts me everyday, and I can’t run from it, I can’t hide from it, I feel it’s impact every day all day. It takes time to settle in with the realization that there is this new normal, somedays it’s hard, so you take yourself to a place where it felt good, this trip is one of my go to places. It was a journey to absorb something few can imagine being dealt, but it became a trip filled with beautiful moments and memories, of healing of letting go, of figuring out oh to be.

I will always be grateful to my girlfriend for going on the trip with me, I will always be grateful that I did what my soul needed me to do.
Today had been hard, it’s been an emotional day, it’s been a day of once again trying to be ok with things that’s not ok, but unchangeable, so you dig down deep be grateful for all the ares you are holding steady, and once again tell yourself tomorrow is a new day.

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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

A New Way

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January 4,2021, the first Monday of this new year, I’m sitting watching daylight unfold, the snow is falling, enjoying my second cup of coffee, sometimes I think I enjoy the second more than the first.
Todays snowfall is in stark contrast to the beautiful warm sunny day of yesterday. I’m glad I took the opportunity yesterday to get outdoors with Pheobe. We went for a short drive, stopped to have a walk, the sunshine felt good, and I must say that normally I really struggle herein the winter months because it’s so grey and we see so little sun, but this year we have been blessed with mild temperatures and lots of sunshine thus far. so although we are to be in our bubble of just our households, for me that means my dog and I, the weather has given us the gift of being able to get outside with greater ease, and times seems to be moving rapidly.

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I’m not making any hard plans for 2021, instead allowing the year to unfold as it’s meant to, often times we try to force things to happen as we want them to or think they need to. This year I will allow the year to be what it needs to be for me. I will listen to my instincts, I believe where I need to be and what I need to be doing will come to light without forcing the many thingsI think should happen.
I have lived mostly in the here and now since my diagnosis, yet somehow still had to feel like I had many things that I “had to” get done, or accomplish. I am much happier and content to just be at this stage. It doesn’t mean I won’t be doing the things that are important to me, things that bring me joy, things that give me purpose and provides hope, it just means I will be doing them differently. I will not be putting so much pressure on myself. I never realized until recently how tired and fatigued all the work I have been doing had made me, mostly because I wasn’t stopping long enough to recognize it. Even while having serious health battles for the last 11 months, I pushed myself. I have stopped pushing. I have stopped because my health says it’s necessary if I want a few more good years, and yes even though my dementia progresses, even though I have new health challenges, I still can maintain a good life, mostly because I choose to and attitude is everything.
so I’ve stopped pushing my body to it’s limits, instead I listen to what it’s telling me. I will continue to do the things I do, but without pushing, if I’m not up to a meeting I will excuse myself without quilt, if there’s a project I feel is to much for me I will sit it out, no more overloading, the price is to high.
Last year was extremely busy, Covid-19 added to that, contrary to what we believed, that it would slow things down , the world learning to use zoom actually increased the number of meetings and the ability to push more projects forward.

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The slow down between Christmas and know allowed my body to exhale, it has done my health a world of good, it has given my brain the ability to relax, not fight to keep up and manage, it allowed my body to rest, the calm the quiet has shown me and allowed me to recognize what my body has been trying to tell me. My quality of life depends on whether I chose to listen to it or not.
So this year, will start another new normal for me, one in which I listen to my body, to hear what my soul is saying, and let life happen. I’m not sure what it will look like, I’m not really concerned about that as I believe it will be as it’s meant to, and somehow I feel like I will be happy in it.

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

Its New Years Eve 2020

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Yup, it’s New Year’s Eve, most people are making plans with their bubble of people, that’s what we do in 2020, we do things within our bubble, that’s become life during a Pandemic. Some people complain, some people outright refuse to do the right thing. But many are doing the right thing and New Years’ will be within the safety of their homes, how lucky we all are to have the safe confines of our homes to go to.

I am in the safety of my home, going to soon enjoy a dinner, traditional dinner handed down to me by my grandmother and mother, my little dog Pheobe has already had hers, she felt quite content. I felt the urge to write this before settling in to have mine.

I’m not making New Years resolutions, I gave that up years ago, making promises few manage to keep seems counter productive to me. Instead, looking at what was good, what good I have done over the last year, thinking about how to enhance that for the coming year. Making a list of all I have to be grateful for.

Hoping that as we move into 2021 we all continue to do what we must until we come through the pandemic, and they we do it with kindness. I hope everyone stays safe, I hope we all work towards doing a better job of looking after each other and our world. I hope everyone finds a peaceful and less stressed way of life. I hope everyone feels loved and gives love. I hope all find and do things that bring them joy. Happy New Year to you all may blessings abound in 2021.

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

A Happy Brain

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Something strange is or has occurred, just in the last number of days, yesterday I took great notice of it, but today I totally marvelled at it. I must almost guiltily that the last while with this new added piece of autoimmune dysfunction that I have been dealing with my brain and my dementia has almost taken a backseat.
suddenly today it is back at the forefront, not for what it’s not doing but for what it is doing, and it’s left me trying to figure out why?
For some reason I am very clear headed, the fog that surrounds my brain normally is gone, it doesn’t feel as thick or heavy, my vision is cleared, my brain feels light and happy. Sounds strange doesn’t it? Feels very strange, like somethings missing. I’m not having to fight to have a clear thought, I have been able to manage things like putting together and cook a lovely meal albeit done in stages and steps over several days, but still I haven’t managed any of these things very well for a good long time.

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Tonight I sat looking at my lights on my Christmas tree, contemplating what on earth is happening, I thought about my last week and how a phone call from my doctor and my specialist just before Christmas had me reworking yet again how I am doing things. This came about not because of my dementia but because of this autoimmune piece that is affecting and they are trying to unruffled. But could those changes be somehow helping my brain? I am having less trouble managing my day to day skills, I am able to organize myself ( well ok still not. Like I would in the past) but still better than have been for quite a spell. I’ve also not only paced even my simple tasks differently, I have also had a lot less going on, no meetings, no zooms, or very few, and they have been the more social variety. Not pushing myself, letting my body rest when it wants, all the noise and business of the world left far behind, music everyday, singing and dancing in the comfort of home. Only walking for shorter distances, when my body can manage it. Have all these things allowed my brain to find a happier way to be, has it made it simpler for me to do the things I want to, because it’s not struggling to manage things it simply no longer can? To have the fog lifted, to be given this clarity and sense of peacefulness, contentment is a gift. I don’t know how long it may or may not stay this way. I wonder if when the New Year sees all the activities and meetings start up again, will it overwhelm my brain again., will it cause the fog to return, to fatigue what is at the moment a happy brain.

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The dementia is still there, the struggles are still there, but to have a brain that feels light, clear and happier than it’s felt for a long time, feels so good. It makes me wonder if I will have to evaluate how much I’m doing going forward. After all if this quitter existence allows me a better quality of life hadn’t I better but some value and thought into that. Time will tell, in the meantime I shall enjoy that the curtains that have been drawn across my brain for so long have been opened at least for know.

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

It’s a Wrap

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Another Christmas Day has come and gone. Christmas came so quickly this year, which seems in opposition to what one would think. We would think that time would be dragging, living amidst a global pandemic, but for me it feels like the accelerator has been pushed and time is going by so fast that I’m still months behind somewhere. I keep hearing people say I just want this year to hurry up and be over, and yet once time is gone we can’t get it back. I would like the pandemic to be over but the the changing of years on the calendar isn’t going to automatically bring that about. It will be the collective effort of mankind, or not.
People have been stressed about having to be within their own family households for Christmas, many broke the rules, many not caring as long as they had the Christmas they wanted. It made others stop to consider the many who spend Christmas alone every year, and to think about and understand what that has felt like for them. I am one who lives alone and normally spends Christmas alone.

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Everyone one was extremely worried about having to zoom, with family instead of in person visits. Yet when you think about when we were young there wasn’t the ability to do visits on video calls, and that was just a mere 20 or 30 years ago. We were asked to change one Christmas and something incredible happened because if it.

I actually had one of the nicest Christmases I have had in recent years. People driving by to drop off baking and treats and gifts, greetings across the parking lot, seeing warm and friendly faces as they pulled up, Christmas Day normally spent alone had me see many people to share laughter and coffee, share traditions and joy, I had more people spend time in my living room via zoom, and FaceTime, something that had not happened in recent years. So although I was alone, in the physical sense I did not spend Christmas alone at all, I spent it with friends from near and far, family in Alberta, friends in Scotland, England, eastern Canada, the US, even Australia, ending with a fabulous visit with a friend in Texas, they were lovely visits, my day flew by, I wasn’t alone.

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So while many looked at having zoom Christmas as a negative for myself and likely many others who are normally alone, it was a positive. These visits were heartfelt, they were personal, it was sharing and caring. Seeing someone’s face light up, seeing their families, hearing their voices, seeing the beauty in their decorations, the heartfelt laughter, sharing stories of traditions and memories. It was like a warm hug that other wise would not have been received.

I received an email from a dear friend who lives in Scotland, whom I admire very much last night after our visit yesterday and to hear how it was as good for him as me was so heartwarming.
The silver lining in the midst of a terrible pandemic shone brightly for me yesterday and I won’t forget this Christmas, and I won’t forget, not for what it wasn’t but for what it was.
That’s a wrap.

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

A Mixed Bag of Random Thoughts

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I actually thought I had written this blog, but apparently I wrote it in my mind but not on paper. I didn’t realize that until this morning settling with my first coffee of the day I thought I would check it before hitting the post button. Except it wasn’t there, it was all formulated in my brain, but the action to actually write it didn’t connect, this is Dementia at work. Thankfully for some strange reason, my brain has decided to hang onto it so it ends up here.

It’s a quiet time, it’s Christmas Eve, tonight I will make my little turkey dinner for my little dog and I, I grew where Christmas tradition saw us have our dinner, open gifts, and then off to church, we never had Christmas Stockings we had Christmas plates, by our beds that were filled with candies, oranges and little baked treats. Christmas Day was for sleeping in, relaxing, tobogganing, playing in the snow. So I will have my Christmas tonight.


I have been blessed with people dropping off baked goods, vegetables, and gift bags and baskets, I’m grateful to all those who thought to remember that I’m alone at Christmas ( not because of the pandemic ),just because I am alone, its nice to be thought of, and although its just drive by drop offs just seeing your faces for a few minutes lifts the spirit, you have all touched my heart with your thoughtfulness. If it was possible I would have you all here for coffee to help me eat all these beautiful baked goods.

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Healthwise, as most know I’ve really had challenges since March, and not with my Dementia, although my last testing was not great, It showed my recall has gotten significantly worse, short term memory is worse, but I’m still managing quite well, you become good at adapting and learning new ways to manage the shortcomings.

My other health challenges that began in March, have brought us to now., a call from My Doctor on Tuesday afternoon, all my inflammation markers are high, they know I don’t have an infection or any kind of virus, something triggered my immune system to start fighting in March, it’s like it’s supercharged, they know this is an autoimmune issue, they believe my vocal abilities and my decreased lung capacity are all connected to this, my fatigue, and the list goes on. So the specialist will help unravel it all to see if and what we can do, the problem is much of the medications to help with autoimmune don’t play nice with my dementia meds, so some very carefully weighed out decisions may have to be made. I wrestle with it, I really hope to get some of my physical abilities back, at least somewhat, but if it means losing more of my cognitive abilities quicker I’m not sure.

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So Tuesday afternoon I took an “ I feel defeated“ day, I cried, I felt sadness I wondered if this is worth the continued fight. I and we people living with dementia are super-warriors, yes, but we are at the same time, not superheroes, we are still humans with all the normal reactions to abnormal events, we still feel sadness, loss, fear, along with happiness and joy. We have the same ups and downs like everyone else. Sometimes we have to quit fighting and say ” today I just want to feel bad, and sad and mourn for all that is happening,” this does not make us weak, this makes us human, yup we have not lost that. So I took a half-day to feel it, to wonder and question myself as to why I keep fighting, too which I don’t have the answer to except that there are still things I want to do and accomplish despite my complex health challenges.

So I slept for 14 hours, after which I got busy figuring out what in all of it I could do to try to help myself while the doctors try to do their thing. I can’t control the illness or illnesses at this point, but I can do all the things I know how to do to help my body fight. My body is carrying a lot of inflammation caused by this autoimmune piece, I have had no appetite for a long time, it’s been hard, I should be a tiny size but I’m not because of what’s going on in my body, and no appetite means it’s hard to give your body what it needs to fight. So Yesterday I set a plan in place to help my body, I have to eat one balanced meal a day, seems simple but when you zero appetite it’s harder than you think. I will have to prepare and make that meal, which on bad days is difficult because of my fatigue, and my dementia so I have set reminders on my Alexa so that at five pm every day it will remind me to sit down and eat. It will be a self-prescribed force feed, but it has to happen.

I will be continuing to work with my physiotherapist Kathy to help keep me mobile, Kathy has been a godsend to me and has become an integral part of my health team, as well I will continue to work with Lise Halverson, Lise owns Noodle Legs.ca, the company is new to Vernon, I started going to her osteo fit class this fall, she has regular classes as well as classes specifically for people with dementia. She has been a tremendous support and helps me, currently because the doctors don’t want me pushing but want me to do small amounts we are working outdoors social distancing of course. We use activator walking poles which were designed by Occupational Therapists at the women’s hospital in Vancouver, they are different than regular walking poles as they give you a whole-body workout. So if I can do 15 minutes that’s what we do, it’s slow steady at this point, a hard pill for me to swallow to go from walking 8/10 miles a day to a block or two, but hopefully, by spring, I will be well on my way again.

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We are lucky to have this company here, their program is designed by the women’s health hospital, and I think many can benefit, especially as we age and balance and coordination, etc become something we need to pay attention to.

It’s a fine balance to try to keep moving without depleting my body and ending up in bed for days, but I continue to try with the support systems I am fortunate to have. It is also possible that this is just part and parcel of my dementia, vascular dementia has a huge component that affects the immune system, they are and can be quite intertwined so it becomes quite complex. People tend to think dementia is just about memory loss but it is about so so much more and affects so many of our body systems. I’m grateful to those who help me in the fight to maintain as best I can, and to those who understand my need to have normal reactions at times to abnormal events.

The New Year will hopefully have more answers than questions, but I have learned that the complexity of my dementia, means that it challenges even the doctors, but I am grateful that they continue to try to help me have the best quality of life I can, and if at the end of the day this becomes another new normal I too will learn to manage that.

In the meantime, I will be grateful that I am here for another Christmas Eve, life is fleeting it’s best to always be mindful of that and be grateful for what we are given.

Wishing everyone a pleasant and peaceful Christmas Eve.