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

The Broken Heart

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There are times and moments in our lives that forever are etched in our hearts and minds. There are moments that change us in ways and on levels that few understand until they walk their own journey.

It is coming up to one of the most difficult and tragic, beautiful weeks of my life, all in one week, scattered over a couple of years. Barely capturing your breath from one until the next happens. Knowing that as much as you believe in the healing powers of self care, of acceptance, of allowing yourself the right to grief, of rebuilding and recalibrating until you have forged a life that may in fact be good, may in fact be filled with many great things, there is times that take you back, to emotions, to longings to reviewing, to rethinking.

It is not about being depressed, no I am not depressed I am deeply sad, there is a difference, sometimes they are intertwined sometimes they are completely different things, in this case they are totally different things. I can say that I am deeply sad at the very deepest levels, missing some very important pieces of my life, I am allowing myself to sit in this sadness, to feel it, to think about it, all of it, to think about how it has effected me, about what parts and pieces I miss the most. I am allowing myself the time and space to feel it all to remember it all, I am giving myself space to re- emerge, feeling reenergized, reinvigorated, but I cannot get to that space without first allowing myself this space.

In a five day span, I deal with the wedding anniversary to the man, the one person, who in my life, loved me selflessly, wholly. Who accepted all the broken pieces and parts of what makes me, me and he loved me that way. He loved me deeply, he was my best friend, my confidant, his love for me knew no bounds, nothing anyone said or did could impact his pure love for me. I blossomed with his love, I lived the best parts of my life with him. I loved him as wholly as he did me, I would and did go to no ends to be there for him and with him. I love him today just as wholly today as I did when he was still here in the physical world with me. I still feel his presence often, I still know he is with me, I know with all that I am that we will be reunited when it is our time.

But even in knowing that, even having peace in the fact that he was called home far sooner than he or I could have ever anticipated, having peace in knowing I did all that I could to ensure his end of life is how he wanted it to be. Even in knowing all that, as I approach the week that is fast approaching, I settle into this profound and deep sadness. I think about all the little things I miss, the little things, no one really knows, the little things about like that one of our favourite and special moments of shared conversations or solving concerns, of making plans was in the shower, with water falling around us. It created a space that we loved, the water warm, relaxing us, allowing us to share those intimate conversations, maybe thats why my love of water is so deep and I’m always searching for waterfalls. I miss sitting at the top of Canoe Mountain where his ashes are spread, and his head stone rests, I am needing a trip up there so badly, we used to take a thermos of coffee and sit at the top of the mountain on the back of the truck having coffee, looking in awe at the wonder of all that stretched before us, sometimes we just sat not talking, just sipping coffee, holding hands, I miss feeling the touch of his hands, that were strong, and yet so gentle, the sparkle of his crystal clear blue eyes., I miss going to sleep each night enveloped in his arms, knowing as he always told me that as long as we were together we would get through anything, it was the safest, happiest place I have ever been. It was the deepest connection I have ever had to another human being and I long for that connection, I miss that connection, and it doesn’t matter how many years go by and this year will be 16 years since he left this world, I miss that connection, so deeply. I would Marry him a thousand times over given the chance, but I know that we are married forever, and on the other side of this life our life together will once again be. Our Anniversary is June 7th, he died June 12th, the best day melts into the worst and yet I cherish every moment, every memory.

I find it hard because as much as I want to remember and cherish our life, not many people are comfortable talking about those pieces of our lives.

The other big event for me was the loss of my mother, 2 years after my husband, I had not yet found my footing from his loss, when I lost my mother. The one woman who influenced and impacted my life more than any other person. Her strength and resilience was beyond measure, and without her willingness to share and teach me about that I likely could not have managed through the loss of my husband and then her. She was kind, generous, funny, she had a great spirit, she was forgiving, non judgemental, and she was always giving of herself to help make others lives better. She graced me with spending her final time in life with me, and when she wanted to die at home, I said OK, and with the help of my doctor it was like she was allowed to orchestrate her exit from this life into another on her terms. I did everything I could to ensure it happened, from having a choir coming in to sing hymns with her and surrounded with family and friends, it was a special time, one forever etched in all those who were witness to it.

I miss all the special times with her, taking her to garage sales, to teas, traveling the highways to go see family and friends, to Helmut’s (a german specialty store) for all the good german products, she would get so excited to get. To laughing so hard she would say stop stop I’m going to pee my pants, and then laugh some more, watching her face after seeing be reunited with my sister in Germany after 28 years, sharing the journey with her and letting her show me and share with me her home country. It was a trip that had a lasting effect on me, and I hope to return again one day. Watching her face lit up when she was surrounded by those she cared about. I miss the conversations about the hard parts of life, I miss how she pulled us all together, I miss that connection, that very special connection, I miss the friendship I had with her, I miss having her never ending supply of filling me with a sense of pride and ability in myself when I seemed to lose it. I miss her so very deeply. I remember in those final days, as they etched closer, one of our conversations, she said, I’m going to go soon, I said I know mom, its ok, and then I said, just promise me you won’t leave me the same day Uwe left me, I can’t manage that, she said I know, and she didn’t. My mother never let me down, I’m sure I let her down at times, but she never let me down. Even at the time of leaving this world she didn’t.

Mom died on June the 9th, peacefully and content, all my doors and windows open, as she wanted because she said her spirit needed to be able to be free, she didn’t want to get trapped in the house, and I know when her wings given granted she soared free, and I know she watches over me, she guides me, but I still miss her presence in my life.

I normally have always taken that week and gone away and done and spent some special time, last year I couldn’t because of the pandemic, this year again I cannot, so I am looking at the ways that I can ensure I still give myself the time and space to feel the sadness, to smile, to laugh and cry, to remember.

And maybe because of the pandemic, I’m not really sure, but I know that in this sadness it has really made me see how alone I am in this world, how I know so many, yet I am alone, without that very important connection with another human being like I had with my mom, and my husband. It’s ok that thats how it is, I am and have just become more aware. I seem to have become more aware of many things on a much deeper level. Maybe thats what one must do in order to continue to grow.

So as I move through to what will be a difficult stretch, but coming out the other side lighter, softer, gentler, growing in ways I have yet to see. I will always be grateful that I have had the experience of that deep connection and love I had from my husband, and that complete love and joy from my mother.

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

After the Pandemic

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I sit in silent trepidation, wondering, somewhat fearful of what the world will be like post pandemic. We all wondered how we would get through it and if we have managed to get through it without the loss of family or friends we should take a moment and pause and be grateful. By the grace of God go I.

There has been much changing in our world through this pandemic and it has given us a time and chance to think about how much of what was life pre-pandemic we want to bring back, how much we want to let go off. It is know has we move towards a post pandemic world that we should all be asking ourselves what we want our world to look like, do we want to go back to the rat race of living to work, vs. working to live, do we want to be so busy we are always farming our children out, that we constantly work to have more and bigger, or do we want a more simplistic, peaceful, less stressed way of living. Do we want to work to live so we have time for family and friends, so we have time for ourselves? I think many are asking all the questions , do we want to go back to that world where consumerism runs us.

It seems we have a world running on anger these days, you can sense it, feel it, see it everyday, our world is broken and how we all decide to treat each other, to treat our earth as we come out of the pandemic is paramount to what the future is going to be. Will it remain broken, will the anger grow, or will we find our way to be more compassionate towards each other, kinder, gentler. Will we care more about the human element than the $$$$. Will we go back to a world driven by greed, money and power or will we truly fix things like long term care, will we start caring and taking care of our elders, care for them as the gifts they are to all of us. We will start to take better care of our disabled, of those living with mental health issues, will we look at our homeless situation and realize it is a systemic issue and we need to fix it, every single person should be able to afford housing and food. Coming out of this pandemic we have the opportunity to do a better job, to be better people, but will we do what’s needed and necessary or will we simply slide back into what was because that’s the easy out, not that it was necessarily how we were wanting to live, but because we know it, and in all it’s stress and discomfort it became comfortable.
I wonder if all that we have advocated for and have been working for, all the efforts to improve things for those with Dementia will be swept aside, will we be pushed further into the background.
I am left wondering will I be comfortable stepping back into the world, or have I know become even more comfortable in my isolation.
We are left with much to think about and I hope we will, and I know for many they are feeling a lot of angst, anxiety, and stress about what’s coming, but maybe we all need to take a collective sigh, then take our steps slowly and be willing to listen to that inner voice that we finally been able to hear after years of so much business that it was drowned.
Go back into the world doing your part to ensure you’re doing it in a way that I’d helping shape the kind of world you want to live in fully and wholly.
For those of us that live each day doing all we can to be present in the moments of the day we are given, for me that was the silver lining of my dementia diagnosis, for many the pandemic has given them the opportunity to be more present in their own lives.
I don’t know what the world is going to look like coming out of this, I do know, I hope we look back to a different time, to our parents time, take what was good from there and somehow lost, and bring some of those things back and toss some others of recent years that have not served us well. I hope we are all brave enough.

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

Shaping the Un – Shapeable

I’m sitting on my deck enjoying a beautiful Sunday Morning. It’s a long weekend here in Canada, the one that usually has everyone off and away camping, holidays and kick starting the upcoming summer season. Of course for the second year of lockdowns and restrictions due to covid it has changed that for many, although because people are allowed to camp and explore in their own area many are taking advantage of having access to many of the campsites, and venues usually filled with tourists. I love the tourists because they are good for the economy and because I love to wander and see new places as much as I can. It’s been part of my makeup since I was very young. But it would be nice if a certain percentage of things like camping spots were kept for people who want to be out and enjoy but closer to home. I don’t normally go anywhere on long weekends to busy, even the back country is and can be busy so I normally stay low key. It’s actually kind of nice as my home area is quieter on long weekends. I was planning a nice bike ride this morning but it will be more of a mid morning ride, maybe a longer ride that way.

It’s funny yet not surprising that sometimes making a few changes in how and what we are doing can have bigger than expected outcomes and just how fast some of those outcomes can be seen. The last 1.5 years has been difficult health wise, a lot of hospital stays, a lot of tests, treatments and the likes, I am still having some testing doing for various things but overall, I think I am starting to feel an upswing. I am more energetic, up until 10 or 11 instead of being so fatigued that bed at 5 or 6 pm was the norm, but when your body is struggling it is necessary at those times, but I sure am enjoying the reprieve. I truly believe I have been pushing my brain to hard, depleting it, not giving it enough time off to rest and recharge. It’s something I’ve talked about many times, but I don’t think that sometimes when you’re in the throws of the “busyness” that we actually recognize how badly we are depleted. Sometimes our bodies do what’s necessary to make us pay attention to what it is trying to tell us. I’m glad I paid attention before the cost became tragic and maybe irreversible.

My cozy morning coffee spot

So this morning as I’m sitting waking up refreshed, revived, enjoying all my plants and seeing all my seedlings start to take shape to become the beautiful array of colours that they will be, I have been giving lots of thought about the shaping and reshaping that I am in the throws of. I was chatting yesterday with a friend who is making the move into independent living, giving up what has been home for many years, he has had to scale back a lot of commitments, his dementia has let him know it’s time to do things differently. It’s what I’ve been thinking a lot about in recent months, how to I reshape my literally unshapeable life. Normally as we go through life we create a new one, three, five year plan’s etc and adapt as we need to. But when living with Dementia making any plan beyond today or at best this week, is futile, things change day by day, what I can manage today will challenge me tomorrow then in three days it may be easier than ever. The doctors give you the best information out there about how long your life expectancy is after diagnosis, for me it was 3 to 8 years, well this is year seven, if I look at that … holy crap should I just throw all caution to the wind, yet I know many people can do and are living 25 or more years, others don’t even manage a year, dementia is cruel that way, it is and will take whatever trajectory it decides for each person. I have often wondered which is better. I’ve chosen to be grateful for each day and although the last year and a half have been challenged by health and the pandemic, I am now trying to figure out what to do for my living arrangements there isn’t a lot of options , when I’m feeling good, when my brain fatigue isn’t crippling me, when all the complicating factors are sitting quiet, I feel like I can maintain on my own for a very long time. But what is being on my own really? Is there a better alternative that would allow me my independence and a better quality of life? It’s a lot to think about. I’m trying to just let it sort itself out, put it in Gods hands, let the universe show me what the next step should be, I don’t want to make or force any decisions, as the world restarts, hopefully here in Canada sometime this summer/fall, hopefully the solutions will present themselves.

My advocating and writing will always be with me, working with the organizations I do and the research groups is an important piece of my life, reshaping how much and when and what pieces I do will also be important. Living with dementia is about continually adapting, and once again I am in the throws of it but grateful that I have the ability still.

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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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