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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

Photo by Michelle Leman on Pexels.com

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.

Photo by Michelle Leman on Pexels.com

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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

Photo by Ekrulila on Pexels.com

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 Event For This I Am Grateful Living well with Dementia Silver Linings

Accepting Imperfections in Ourselves and Others


As I had been part way through writing this blog, my friend Justine, from the Cassier Cannery ( if you haven’t been you should go) posted this message which spoke exactly about what I’ve been writing thinking about this morning. So here it is:

Grandma once gave me a tip:
In times of trouble, carry on small steps.
Do what you have to do, but little at a time.
Don’t think about the future, not even about what could happen tomorrow. Wash the dishes.
Remove the dust.
Write a letter.
Make some soup.
Do you see that?
You are moving forward step by step.
Take a step and stop.
Get some rest.
Compliment yourself.
Take another step.
Then another one.
You won’t notice, but your steps will get bigger and bigger.
Time will come when you can think about the future without crying.
(Elena Mikhalkova, ′′ The Room of Ancient Keys ′′)

I don’t know if it’s just me, if it’s in part my dementia or if it’s just a sign of the times. It feels as though a major shift or change is happening, with me, within me, and all around me. A shift in thought process, in interactions, in the journey of life it feels like it is positive in nature, but while the shift happens it’s like you’re walking in quick sand. having the patience to allow things to unfold as they are meant to and enjoying the moments in the day and days along the way can be challenging, we have grown accustomed to trying to control everything in our lives and although that on many levels disappeared with the dementia diagnosis it still somehow can slip back in unless we can catch it and put it into check. This happens if we have done the hard work, the facing our fears, demons, traumas, taking responsibility for ourselves, for our actions, for our decisions, for our thoughts. Being able to let go of taking on the thoughts and actions of others, whether that is about something they have done and our reaction to it, or something we ourselves have done. Always do what you know in your heart to be best for you, let others respond as they need to, it may not be in ways you expect but their response are about them and things deep within themselves and have little to do with you, and although at times we want to try to make others understand that how they view or see something we did or said is not how it truly is for you, it is about them and not your responsibility and you cannot control another’s way of managing things you do.

I was reminded of this yesterday at a webinar on Mental Health and Dementia hosted by DAI, I had been struggling with the unexpected response from some on some recent decisions I had to make, and how my mindfulness and self care process and the ensuing decisions I made were not easily accepted by some. Yesterday reminded me though that those responses had little to do with me, but with them. I was in fact doing and taking those small steps to maintaining my well being. It is something I think we need to all be more accepting of , that sometimes people will do and make decisions that are in their best interest but may not line up with our view of what that would be, and most of us don’t want or wouldn’t others influencing our decisions, but rather have them respect our choices and support us in them. I am very very grateful that for the most part I have received the latter more than the former.

Although having a deeper understanding of self and taking stock, of how and what we allow in our space, changes we need to make, be it for the short term or longer it is not an easy journey to get to, but it is allowing me to take those deep breaths when I need to, to not let the need to control what or how the future unfolds but instead allowing it to be what it is meant to be. My Mother used to say everything that is meant for you will find it’s way if you just let it. I didn’t fully understand this for many years. There are times when it’s difficult, but being able to catch yourself and take those deep breaths indeed helps keep one in a calmer more peaceful existence.

Yesterday was a great day on many levels and difficult on many others. I had the honour of someone reaching out to me via video call and be with them during a very very difficult heartbreaking, tragic and sad time. It will stay with me forever, them being thousands of miles away, no ability to do more than be there, to be present with them, feeling helpless, yet somehow knowing that in my helplessness, I was helping and giving them exactly what they needed in their time of pain and grief.

After, it left me sad, for her, for her loss, for her unbearable heartbreak even for me, it was emotionally exhausting, and yet somehow along with the sadness and exhaustion was a sense of somehow being filled. By being allowed into her space through such a heartbreaking event, being with her as it unfolded, she had given me a gift. Sometimes the gifts we receive come through the darkest moments of others. I won’t tell you any details of what it was, for that is her story to tell, but I will say that it reminded me of how relationships change and grow and ebb and flow, it reminded me of how little control we actually have. It is a snapshot of time that will be with me forever. And it reminded that we have to treasure each moment, don’t worry about the hows or whys of what’s coming, life is fleeting, life is beautiful and life is not meant to be controlled, it is meant to be lived, with all it’s up and downs, all it’s twists and turns.

It reminded me that we can’t control the relationships we have, we can only be open to them, to try our best to maintain, to not judge, to not take the decisions others make personally, to cherish those who chose to stand beside you through the ups and downs and always leave room for those who may stray, or step away to come back in, without judgement. Sometimes we don’t need to understand or know everything sometimes we just have to be accepting.

So this morning I am up early, listening to Lauren Daigle, her music is good for my soul. A little taste is below.

So take the small steps until you’re ready to leap, or take no steps for a time, be willing to be still what’s meant to be will find a way. And cherish it all with every breath you take.

This is the link to a song that seemed very fitting

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

A Powerful Day


This speaks volumes to me, sometimes healing is not because anything bad has happened, sometimes it’s about healing your mind, body and soul, when it’s tired. We often push ourselves, to keep going, because we feel a sense of commitment and obligation, when in truth, each and everyone of us no matter what our title or position, has a duty first and above all else to take care of our commitment to ourselves and our well being, for only when we can recognize that we need to readjust our lives, to take time for our selves, can we then heal our bodies. Stress kills, even when we’ve convinced ourselves it’s good stress because we believe in something so strongly, stress still kills, silently and slowly and sometimes quickly, sometimes the damage can be strokes, heart attacks and other things, sometimes we don’t get to come back from those things, so if we keep pushing beyond what is reasonable and for each of us is different, some people don’t have the ability to recognize when it’s time for them to change things to put more into self care, some people won’t even look at it if they are told.
I am a realistic person, I do look at ask myself the hard questions am willing to step up and say I can no longer do this piece, or that bit, I can own it. I learnt many years ago from a very wise doctor, who said to me, that the best way to help ourselves is being willing to look at ourselves and be honest with ourselves. I am as guilty as anyone of piling more on, not wanting to say no, ignoring what my body is telling me, but luckily I only push that envelope so far. For I am also a firm believer if I am pushing to hard , I cannot be effective in the ways that I want to be.
So check in time as come, no I’m not in a mental health crisis, the complete opposite actually, you see when you are willing to do what’s necessary if if it’s not maybe what you had wanted or planned, it is actually a very good way to stay mentally well.
My specialist says he doesn’t worry about my mental health like he would some others, because I am willing and do do what’s necessary for my well being. I believe after a very difficult year and half with health challenges, many still on going, and the challenges of living with and through a pandemic, it was time for me to take some much needed time for self care.
I am still doing things I feel I can manage, but I do not have a schedule that I can’t manage. One thing that did happen was that the pandemic found the use of zoom become standard, so it became more and more, tied to a computer, I am not tied to a computer anymore, I am not being managed by it, I am managing it. Attending what I can as I want when I can.
I am spending a lot of time out in nature today I spent 11 hours in the woods discovering an area that I have always wanted to see but never have. I discovered a magnificent waterfall, listening to the water thunder and roar as it crashed over the rocks of the canyon wall, so powerful, I had a chat with a moose that was as surprised to see me as I was him, incredible beauty, and strength, he jumped out of the woods, just about hitting the car, looking surprised that I was there, he took two large yet some graceful strides and was on the opposite side of the road, I got out of the car, he took a couple steps back, I took a couple steps forward we looked at each other, I felt his strength and power, those two things alone were filled me up, reminded me of my strength and resilience. I have also been wanting to take pictures of cows, I love cows, and for two years I’ve been waiting for an opportunity to take pictures of them, it came today, driving down the last stretch of the trip into the woods, I was stopped by a man waving a switch, as I looked over to my left , I saw, they were herding cattle, to move them, I got out my camera and was delighted as they came thundering across the road, the young ones so cute, and I happily snapped some photos. It was a powerful day, it gave me so very much. I will go back to that area many many more times. I am relaxed, feeling much peace, and knowing whatever and however I do things going forward, I will always do what I need to too ensure I can stay as well as I can, mind,body,soul. I also understand that just because it is how I live my life other people will not agree with, but at the end of the day, I am responsible for my life, it is only me who I can rely on, I live alone, so if I don’t do what’s best for me then I would be jeopardizing the very quality of life I have advocated for others living with dementia to have. So for me it’s about doing my very best living until dementia stops me in my tracks. I am grateful for all I learnt from 10 hours in the woods.

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

Mother’s Day

Mom

Mother’s Day always finds me missing my mom, I miss her everyday, but on Mother’s Day I find myself thinking about how she was the thread of our family, somehow she raised us to all be our own unique people, we are all so very different, but when it came to our mom, there was no difference, we were all devoted to her, we all had unique relationships with her, but she could make us all laugh, so many life lessons, she taught us to be resilient, self reliant, too always help others and to be kind, but don’t be a pushover. I miss watching her face light up when we all showed up for mother’s or any other occasion some occasions just dreamt up so she could enjoy a day with us all. Full of life till her last breath, she had a way of bringing people together, even in her final days. I know she watches over me, I still talk to her, she still guides me, and lately we’ve been in conversation a lot.
I am feeling strangely ungrounded, disconnected, I’ve been on my own for many years know, but never felt alone, not in the sense I do know. I’ve always been very social, always felt like I had my circle, my people. You know the people who become like family, but life changes, life happens, and sometimes those circles, your people, disappear, it can be for many reasons, sometimes, they die, sometimes when you’re life changes, as with living with dementia, and it forces change on you, you no longer fit. It’s no ones fault it just is the reality. But it has until recently just been something I’ve managed through, thankful for those who are still part of my circle, understanding and wanting nothing but the best for those who are no longer in my life. Now feeling that I am in the midst of more change on my horizon, but not wanting to try to control any of it, instead wanting to let it unfold as it’s meant to. I have had to go deep inside myself, thus all the conversations with my mom, and a few others who watch over me, and I converse with all the time.
It’s not that I’m lonely in the sense one would, goodness knows, I have a lot of people I converse with on line, that I work on projects with, I’ve made and I have great friendships all around the globe, so not lonely in the sense you think. I’m lonely on a much deeper and different level, I’m lonely for the connection, with “ your people”, the ones who just get you, the ones you can say let’s take off for the day and know that you’ll have a great time no matter where you end up. We all become part of our own little community of people. There is a lot of reasons things change. I have had do manage through many, some people have the life of staying in one place for most of their life, marriages that go the distance, a few lumps and bumps, but no big curve balls, others of us have had a life that’s like someone keeps throwing another grenade after just cleaned up from the last one.
I feel like life has been fairly quiet and stable for me since my diagnosis, not easy but at least somewhat stable. But my world is changing, making me aware that change is needed and necessary. I know once the pandemic is over I have to find a new community of people, yes the ones that are still here will remain, but I will be required to add to it, find people who enjoy things I enjoy. Life is very different for me know, how I do things and what I do is very different, but I know there are people out there for me. I need to ensure I am socially engaged, the pandemic has made me very aware of that.
I also know that I have to but more focus on doing the things I enjoy and want to do, the struggles and noticeable changes over the last year have also brought that into sharp focus. I can’t give all of myself to everything and everyone else in an effort to make a difference without maintaining and reserving enough to ensure I am having a quality of life.
All of this has been requiring me to have faith that I am being directed in the direction I need to be, to put my focus on.
in all of that I am going to be spending less time on social media, I’ll still be doing my blog, but little else, limiting time on Facebook, Twitter the like. Disconnecting to get reconnected on a more personal level. Social media is great, zoom is great, but I feel like I’m drowning in all of it, it’s taking to much of time away from actually living life. In some ways it has helped keep us connected and engaged while we are all in these lockdowns from covid, but it has also come at a cost in other ways. Know it’s time, as we hopefully will come out of lockdowns as the year progresses to regain a balance. So this weekend I have been mostly disconnected, and spending time walking, and enjoying the scenery, today I went for a drive found a beautiful little spot, that I discovered had a secret staircase down to a wonderful little beach area on Mara Lake. Pheobe has always hated water, but today even she seemed to need to get grounded, getting her feet wet wading in the water without any coaxing, I stood with my bare feet in the sand then waded in and buried my feet and ankles, the water was cold, it was peaceful, serene, no people to worry about. Finding my way through the inner workings of mind,body,soul. I’ve included some pictures for you. Seems dementia or not, life requires us to show up, stand up and take account of what’s working and what’s not, only thing is all of it is much more difficult with dementia in the mix. Good thing we are a courageous lot.

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

And Then It Hits You

So this morning, I thought I was going to be productive, I did some work that I wanted to do, information sent off to Kate Swaffer, a very brief call with Tamara Claunch, an email to Dr. Nate Bergman, putting him in contact with Tamara and getting him lined up as a speaker for DAI.
I first met Dr. Bergman, after he had heard an interview I had done, through that he researched me, then reached out to interview me, which is the above link, this interview happened in April, I’m happy to share it here. Dr. Bergman then researched DAI, and was amazed with what he learnt, and in a good way, he believes DAI, can be of value to many of his patients.
But back to my day, I looked at my calendar three times, realized, no it wasn’t Brain Health Hub day, that was actually last week, grrrr, another mess up, oh well so my calendars clear, I can go get some much needed time in Nature. Wanting time near water, and trees, and I actually hugged many trees today, it felt good to hug them, I am not able to hug a person, I haven’t hugged anyone for so long not sure what will happen when I can, but hugging a tree that’s allowed, getting connected to the earth, how it felt so good.

So some beautiful, but want I can’t show you was tat shortly after arriving, my phone vibrating several times alerted me that I should maybe check it, a number of messages, the last one saying meeting starting in three minutes with the zoom link, oh crap, and this is a really really important meeting, so sitting on a bench, I took in this very important meeting, until my fully charged phone ran out of battery, being on zoom, using video, uses a lot of power, my phone died for the last bit of the meeting. Oh I feel like crap over this, I have the meeting scheduled for next week. I’m glad I was in the woods for it though, it was a difficult meeting, I actually had tears at one point. So after my phone died, continuing the walk was good for me.
But the other thing that I wanted to mention that I forgot to earlier here, was that before I had thought I had a free day, I had been listening to my interview with Dr. Bergman, it hit me listening to it, how much difference there is from even a year ago, but go back just a couple years ago, and the decline was there glaring at me as I listened, and could hear the hesitation as I word searched, how often I had to stop to try to put my thoughts and words together. Then the mixed up and messed up meetings, dates and times. And yet I still get “ you don’t look like you have Dementia”. Just spend a day or two with me, you’ll never question that again. Oh well it all worked out, Dr. Bergman will join us for a DAI Brain Health Hub, I made most of the meeting, and I enjoyed all that Mother Nature had to often, and I got to hug a lot of trees.

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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 Event For This I Am Grateful Living well with Dementia Silver Linings

Celebrating Alone

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It’s 430 in the morning the moon is full and beautiful, I woke up feeling like I needed to capture some things here, I have to do them in these moments as they are here, or they forever disappear.
Yesterday being my birthday became a day unlike any other. I have during my 62 years spend many birthdays alone, not normally by choice but just by life happening. I have learnt to do many things alone out of wanting to have and do a life well lived rather than not “because I’m alone”. So yes a covid pandemic, a lockdown for the second birthday during the pandemic, meant again I would be spending it alone. However it became a a birthday that I felt less alone, than I ever have in all my years of aloneness. I received more beautiful messages, notes, emails, texts, messages via messenger and Facebook, phone calls and video calls, drop offs at the door, a lot of very beautiful heartfelt moments, that at one point overwhelmed me and I sat in a beautiful puddle of tears. That so many people had taken time out to ensure that I knew I was cared for and thought about, that Even though I was “ alone”, I never felt alone for one moment yesterday.. I just had to stop writing for a moment and watch as the moon so bright, so very beautiful slipped behind the mountains, another new day and new week unfolding.
Sitting there in my puddle of ( I must say Happy Tears), I was thinking about how that my dementia diagnosis has actually given me the gift of the family and friends who have decided to stick by me through it all, and added to it this dementia family, and together the most incredible family of people have entertained and became the very fabric of my being. It is the greatest blessings, the greatest of silver linings that my dementia has given, yes it has taken a lot, a life altered, a life so very different, a life with struggles daily to navigate the day, but the blessings of these connections, friendships that have deepened, new friendships formed, along with a dementia family that spans the globe, and some people think those are “not real”, friendships and relationships, but those of us that have them, know they are, we care deeply about each other, we laugh and cry together, just like with my friends and family. Had it not been for finding DAI, I may never have had the opportunity to gain these new friendships, these new additions to my “ family”, so I am and will be forever grateful for DAI, and it’s incredible role in my life.
my friends and family here in Canada, wished they could make it so I wasn’t alone on my birthday, but as I said to my niece, I have learnt along time ago that I had to treat myself as well as I would treat others, this included making myself a nice dinner, having a small birthday cake, just because I was spending it alone did not mean, it had to be in sadness, and it most certainly wasn’t. I got to enjoy all the messages, the drop and runs at the door.
I also received a beautiful picture and note from my brother and sister in law ( my late husbands brother and his wife), It is beautiful, and it also made me think about things which I sent a note back with what it made me realize. I’m including both here

Picture from Brent and Kay

You’ve survived another year!

I wish I could wish you perfect health, A loving husband, lots of kidsBut the Lord doesn’t seem to have thatIn store for you right now. But I can tell you I love and admireYour positive outlook, Your ability to see the bright side,Your fighting spirit,Your determination to change the wrong thingsIn the world where you can.We love you so much. Love Brent and Kay

Here was my response:

Thank you, this brought tears to my eyes, I don’t have perfect health, I feel I still have the love of a husband who watches me from afar, but I do truly miss him more than I ever say, the kids whose lives have been intertwined with mine , are all thriving and healthy good people so I’m grateful for whatever small piece I had in that, it brings me piece to see them all doing well, some I had with me for longer than others but I think that was part of Gods plan as well. So the Lord did not leave me without being touched by many and by great love, but right know he is guiding me in other directions, and the work I do know matters as well for many, I may not be able to get and see all the changes come to fruition but if I can encourage others, if I can continue to have faith that I am being directed and follow the path chosen for me life may not be easy all the time, but I am blessed in so many ways. So Thankyou for your beautiful words which helped me think about all those beautiful things. 
This is so special I may include it in a blog . 
Chrissy 

So my birthday was beautiful in so many unexpected ways, and it was a beautiful reminder that what we have matters not, but who we are connected too, the people that touch our heart, it is love that matters, it is love that ensures that even if we are physically alone, we need not be alone, because our hearts are filled with love of those who become our family.

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

It’s A Wrap

Wow, I have made it through another year and know I start my 62 second year. My second birthday that’s arrived during a global pandemic, in the midst of being locked down. I don’t remember last years birthday at all, I am not even sure if I was actually able to be out of bed at that time, the last year beginning in March of last was when I became very ill, and that battle continued for over a year. The silver lining was and is that I’ve made it, it should as all birthdays should be celebrated, for it is a gift when we are given more time. For many they think it’s “ just another year”, but living with dementia ( which is a progressive and terminal illness), I understand that each day is precious, and getting to add another year to my tally of years on planet earth truly is a blessing.
I have felt a lot of changes over the last year, cognitively, and physically, but I can and do try to enjoy each and every good day I am given. It’s been challenging with the pandemic, it’s likely going to be challenging through the rest of 2021, but I am determined to see myself out the other side of this pandemic.
I want to see what kind of shape the world will take on after the pandemic, will people be kinder and gentler, will we actually do the things that will help ensure a better quality of life, will people take better care of planet earth. Will our advocacy finally see some changes made, tangible improvements for people living with Dementia. Will we finally see collaboration.
I am so blessed to have had some many lovely messages from my friends that I have been blessed to get to know and form these wonderful friendships with, so although I will be spending my birthday solo, I don’t feel as though I’ve been alone and I truly thank all of them for the gift of friendship. I’m excited for this evening because some of them have decided to a birthday celebration and all enjoy a meal together via zoom, a totally new experience and way to celebrate this day, it’s kind, it’s thoughtful, another blessing another silver lining provided by friends who didn’t want me to be alone on my birthday. So although it’s a rainy drizzly day outside, it’s a bright sunny day in my heart.
I don’t know what is in store as I move into this new year of my life, I know longer plan for the future, the future is here right know in this moment, and although I do not plan for a future, I do still think about things that I hope I will stay standing long enough to take part in, like another conference where many of us can get together again, or for the first time, those face to face get together are so vital. I hope to put together my second book, I hope to still have it in me to complete work with some of the research projects I am part of, the researchers I have had the pleasure to work with are an incredibly talented people whose compassion and true desire to help provide tangible things to help us have a better quality of life, and I’m grateful to know and work with them. I hope for the day I no longer have to live hoping to die rather than have to go into any type of care home. The pandemic has shed a light on the issues, my fear is that they will only put a bandaid on it to appease people, but they won’t really fix it, I hope we can get to a place where we truly honour those who are vulnerable, whether that be due to ageing, or dementia or any other illness.
I still have a bucket list that is incomplete, my road trip, to see friends and family, going to Ireland, and Greece. Taking the trip across Canada. I often wish I had someone to do many of these things with, maybe that’s still to come.
So for today I will sit in Gratitude for another turning of the page, the beginning of yet another year of my life and in that I gratitude today I will be saying a big Thank You, to all my friends near and far who have ensured I did not feel alone today, and for all the beautiful messages, via, messenger, texts, emails and Facebook. Thank you all for being part of my life.

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

The Swinging of the Pendulum

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Yesterday was a no go day for me, my system, my brain was on a shutdown, so it was a day at home, just trying to get from the start of the day to the end of the day. I thought of many things that I would, could, may and wanted to do, none of which happened, as I was unable to put any of it together, this is what happens on a bad brain day. I was happy enough to just be at home, and just be, to not try to have to navigate anything. This came after having three or four lovely days of being able to go for a drive, to go on my bike rides, but this is my life this is my vascular dementia.

Today my day started with an early morning in person visit with my doctor, he had asked for the meeting, I always feel so fortunate that he actually puts thought into my well being. He doesn’t just sit and wait for me to have to or need to see him, he is invested in my health care. So it was an unusually long visit and considering how many don’t get to see there doctors at all as with the pandemic most things are done via video calls or phone calls, again a silver lining for me, I am always grateful and understand how fortunate I am. We went over tests he had done, then we discussed why he does some the things he does, it was great to hear him explain that he doesn’t want to ever miss something, because everything gets attached to my vascular dementia, something else I am grateful.

We had a lengthy chat about palliative care, life and death, we talked about my husbands death, and my mom’s death, he was the doctor for both, and he helped and worked with me to ensure they had the kind of end of life and death that they wanted. Another piece of my gratitude. It was a really good talk, we talked about my own illness and how at this point and given the last 14 or 15 months I have had with my health, understanding that they cannot fix my vascular system, their is no magic pill, no surgery, not anything, we talked about what happens why I have these good runs of days and sometimes months of really challenging symptoms and stretches of being so unwell, we were discussing my blood flow, both agreeing and understanding that when my blood flow ( almost simultaneously we said its like there is a dam and the gate is open the flow is good, the gate closes, and it randomly effects different organs, different areas throughout my body, depends which area the gate is closed stopping paper flow, This is also why there is such a challenge with inflammation.

We both agree that I do all that I can to help myself, both nutrition wise, exercise, sleep, all the areas that I am able, if I didn’t things would be far worse than they are, even though they have gotten worse, that is in essence how vascular dementia works and for each person it will vary, this is my vascular dementia. He wanted to have this discussion, to ensure that I know that he will continue to help support me through the downturns and difficult times, and if that requires hospitalizations as it has over the last year or two, then thats what will happen, but he also wanted to ensure that I am fully trying to get the most out of my good days when they present themselves, and that the monitoring and knowing when I should just stay put is a very important piece. this was a conversation about my quality of life. It did me a lot of good to have these discussions with him today. As for my shot, he just wants to ensure I get it once I am notified of my appointment, which hopefully I will get that notification this week, for sometime in May, in the meantime, keep doing what I’m doing.

I know it was a doctors appointment, it felt like a visit with a friend, and a much needed chat, and as I have had a lot of things weighing heavy on me recently, and I will write about those in another blog, today did much for me.

We talk so often about the medical profession and how and the ways they could do better, I know having who I have in place as a doctor, has been and is not the norm for many. He is a shining example of what good doctoring can do for someone. And talking later today in a meeting about many things one being to remember to look for and find the things that are good despite our diagnosis, I was thinking that my doctor is definitely one of the good things that I have.