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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

Finding Myself

Its strange how sometimes we become a stranger to ourselves, we get so busy and so immersed in something that is important to us, or that we are passionate about, that we forget to remember ourselves in our bid to do and make a difference, who we are and what brings us joy.

This happened to me recently, well no not so recently, since shortly after I was diagnosed with Dementia, wanting to make a difference for others, advocating, helping and working on many projects, many with my much loved Dementia Alliance International, ( my life saver I always say), some with researchers, with research groups, with other groups like Dementia Advocacy Canada, some all on my own, interviews, writing articles, always willing to chat with someone in their moment of need. This has been such a full filling place for me, giving me purpose, filling me with hope. Sharing some very special times with a lot of very special people, very special friendships made, laughter and tears shared.

But then the only term I can give it is I became zoomed out, my whole life was spent on my computer, it wasn’t just a few hours a couple times a week, or maybe a really busy week once a month, it became busier and busier. There was a lot of things that contributed but nothing more than the pandemic, on one hand needing the connections due to being alone and living in that bubble for an amount of time that by all accounts has been to long. It gave way to more meetings, more on line work could be done. This is not anyones fault just the times we are in. And me being me, I took on a lot, ok, ok, somehow thinking that I was immune to the effects it was taking on others. Oh how wrong I was, and on top of that I had a year of a lot of extremely challenging health issues, which of course one impacts the other until the perfect storm erupts.

Luckily for me, with the help of my doctor, I had made some very very difficult decisions, it was if I’m honest more agonizing to do than I have likely admitted, after all don’t we all want to be superwomen? I wrestled with it, until sitting at the hospital awaiting another test, knowing I was going to be rushing to hurry to get everything done for another meeting, I knew with everything in me that I couldn’t do it. My body was screaming at me, mind body and soul, to listen to it, so with a breaking heart I stepped away from some of my responsibilities, I take my responsibilities very seriously, whether they are for an organization or research team, even my personal life, so this was bigger than most would understand for me. I even tried to bargain with myself and convince myself while making the decision so that I wouldn’t have to, of course that did little to help me.

I am now doing things in the amount that I feel I can manage. This is all in a bid to take care of myself so that I may regain much of my health ( minus the dementia of course, it will always be with me), and perhaps be able to do more again in the not to distant future.

Those who know me, know that I have been spending a lot of very quiet and contemplative time. I have been re-introducing myself to all things I have forgotten that brought so much enjoyment, my time out in nature, time out driving the country roads, logging roads, taking pictures, exploring, finding those very quiet spots, where you can hear the sound of leaves as they rustle in the breeze, no sound of the water trickling in some yet to be seen creek, the sound of deer crashing through the woods, watching a moose somehow become invisible in the woods, even though his size says how is that possible. watching bear cubs scurry over the bank, fish jumping, birds calling, and I just sit and breath, and feel all that is and has been weighing heavy on my slipping away. I’ve gotten my paints out again, I haven’t painted in almost two years, I’ve spent time working on my next book, which has sat untouched for too long. Spending time being present for myself, thats not an easy thing for most of us to do. We push ourselves to quite the inner voice that is screaming at us, the busier we are the less we hear it, the less attention we give it.

I am grateful that I have been taught over many years, through many traumas and challenges the importance of self care, of talking about it when it surfaces, my doctor is my go to, he is objective, not invested in anything I may be doing. It is a safe place for me, no chance of being influenced and I admit I at times can be, this is true of most of us who are natural givers, we tend to make it easy to hear that one thing that will give us to keep doing something even if at that moment its not whats best of ourselves. I have many more times than I like to admit, allowed myself to stay and keep giving in many different situations, because I was convinced it was for the best or because someone needed me to. So my Doctor is the perfect person to be 100% objective. I am grateful to have a good relationship with him, I know many don’t even have the luxury of a doctor, so I don’t take it lightly or for granted.

Today I was supposed to be out in the woods again, I had an amazing day on Thursday, but today the weather has dictated that I be at home, which that to has been good, my music going, I’ve repotted all my house plants, they have needed my attention too, yes they all have names, I dance and sing to them, and I have been neglectful, so today they were pampered, I’ve got some organizing done of my house, my little dog Pheobe has even gone for a short walk with me in between rain showers. I’ve decided I am going to write letters to those that I care about and tuck them away, so one day when I am gone, they will each get a letter. I am spending time on researching some options for where I may want to live, but knowing that I will let things unfold as they are meant to, my angels are here with me, in a bigger way than in recent years, so I am paying attention.

I am grateful for the support and understanding I have received from many the support is important for all of us even though sometimes we don’t ask or say, it is important we support each other as best we can, life is tough, kindness matters.

So yes I am still advocating, working on various things, helping with some events, and just enjoying others. Its a tremendous time of rediscover me, I am still passionate about advocating, helping others, mentoring, being a support, but I am also learning to love myself in all my quirkiness.

My most loved photo I took on Thursday. I love the detail in it, the light bouncing, the ripples on the water.
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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

A world in Transition A Time of Change

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I have said for a while now that I am going through a time of things shifting for me, things changing, in many ways, those changes are unknown to me, but I feel them, at a very deep level. I am open to a shift, I am open to change, for with change comes growth, if we are willing to lean into it, to let it unfold, without having control of the hows and whens, letting things happen in the time and space they are meant too. It can be an unsettling time for many, for me it is a time of great inner peace, of being still, of allowing God ( or the universe or whatever higher power you like to liken things to), to create the new place and path that I am meant to be on.

But in the midst of all of this, I have a lot of thoughts about things going on in the world, about things from the past. It is often said that we have to let the past go in order to properly move forward, but I think that sometimes the past has to be first acknowledged, for healing to happen, to recognize it for all that it was. Whether those things are negative or positive, we may still be required to look at it.

In all of that I find myself questioning who we are as people, as a country,. How it became somehow that as humans we feel we have the right to have superiority over others, that somehow we can justify behaviours and atrocities, on other beings, that our believe system is somehow superior to someone else’s.

I think about how it could have ever been allowed, how anyone ever justified, the ripping of children from their homes, to put them into so called schools to make sure they unlearn their language and culture, that it was somehow justified to create mass graves without even having a record of who some of those placed in those graves are. They were not given proper burials that are sacred to them and their people.

I am deeply saddened by the recent events, but I am even more outraged, that for years there has been promises of change, of healing of acknowledgement of the wrongs done to the peoples who have been here longer than any of us. How is that in this day and age, we have had to watch one of our indigenous people, a wife a mother, be taunted and abused in the very medical system set up to take care of people.

How is it that for years the alarm bells have gone off and government after government, making promises, that changes would come, for our seniors, reform in long term care, yet here we are coming out of a pandemic, thousands and thousands of seniors died, unnecessary and in, in-humane ways in the very homes they were lead to believe would be wonderful places for them to live out their lives.

The bandaids have been ripped off, the wounds wide open, we as people must hold those in places of authority accountable, demand that we do not have more inquiry’s, more studies, that we actually have true and lasting and tangible change made. For our Seniors for our Indigenous People, for our Children, for our Disabled, for our homeless and our failing to do anything sustainable for those with Mental Health and Addictions.

I believe we as a country are in a great state of transition, I believe we all need to take a step back as ourselves are we willing to go with the status quo that if it isn’t happening to us directly, we should be ok thinking and behaving as if its someone else’s problem?

If we allow ourselves to be complacent then are we not part of the problem?

Should be not be demanding that our seniors be given a living wage, after all, we have somehow forgotten it is them who spent their lives paying into having a fund that would allow them a good retirement only to have it robbed by the very governments who were entrusted to ensure it was looked after for future generations, only to know say well there isn’t enough money, so that somehow makes it ok that many of our seniors go without medications, go to the soup kitchens and food banks and are becoming homeless in alarming numbers.

It makes me sad that we seem to have such little regard for human life, that we have somehow justified it because ” well I am just one person so theres nothing I can do” lets us off the hook? But what happens when its you and or your loved one? Will you want someone to do something? A question we should all ask ourselves.

Yes I believe the world we live in is shifting, I believe there is a great amount of transition happening, I wish I had the answers, but I do know I use my voice to try to make a difference whenever and however I can, I am not complacent, sometimes I am not very welcomed because I do speak out, but I will continue to speak out. I hope I can before my days are done have made some kind of positive impact.

There are a great number of good people in this world, but there are far to many that are not, power, money, egos, superiority, they feed into something that is and create so many wrongs, when in fact all of those things should be being used to do good.

This world needs to be loved, to be shown kindness to all, to be gentler, to be willing to ensure everyone stands on equal footing.

We can’t blame it all on the governments because we the people elected them, we can’t blame it all on the churches because we the people went, and followed, without question, we are all responsible, we all need to take a hard look at what we want this world to be going forward.

I don’t expect everyone to agree with my views or thoughts, they are mine, and I surely don’t have all the answers but I do know that doing nothing allows more of these injustices to continue. I just hope that maybe just maybe it will give thought to really look inwards and for us all to take a look at where we go from here.

A state of great flux… I hope, I pray, and then I pray some more.

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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

Truly Honoured and More Than a Little Humbled

Charlie

Tonight this blog is being written after a friend that reached out to me and asked me if I could write a blog. This friend is one of our much beloved DAI members, who has recently endured a very deep and personal loss.

This friend is Maria Turner, I first met Maria in 2017 and then in person in 2018 in Chicago at the Alzheimer’s Disease International Convention. The friendship started before that when I first joined DAI, and after meeting in person and working with her on things like the Brain Health Hub, getting the Living Alone Group going along with others, and watching Maria flourish as an advocate.

I received a frantic video call from Maria a few nights ago, Wednesday March 16, 2021 actually, it took about 4 or 5 attempts before the call actually connected. But in that moment before we were even connected I new something was wrong. We all have people who we zoom or video call with on a somewhat regular basis, there is others that we chat with at times over messenger or texts or whats app, Maria and I were the ones who would send each other messages of inspiration etc. via messenger or texts, but we were not the ones to traditionally do video calls with, so when the call came I knew it would be of high importance.

Maria was distraught, her little Charlie was dying, it was heart wrenching. Charlie bundled in her arms, tears streaming down her face, asking me what to do. It was difficult to be thousands of miles away, I couldn’t drop the phone and run right over. Maria like me, lives alone. Charlie has been Maria’s everything, she knew I would understand without judgement, that I would just sit with her in those very difficult moments. I wouldn’t tell her what to do, or how, I would just be there, words of comfort.

In talking to Maria tonight when she asked me if I would write a blog, she said she remembers little, other than she knew she needed to talk to me, and that at one point she remembers me saying ” Maria Charlie has his wings know”, eventually she went and sat on her bed with him in her arms and talked, I just stayed with her until she was ready to let me go and asked me to call another of our members Karen Creeky Creekmore, so Karen and I messaged back and forth and then Karen spend some time with Maria, there were others of course who were a significant part of this event as it unfolded for Maria and Charlie, David, Jerry, Jamie, Laurie, and many others I can’t recall all so please don’t be offended if your are not mentioned here, I know Maria is deeply grateful to all.

Charlie was a puppy mill dog, who ended up in the shelter and was to be put down, along came Maria, with her big heart, taking Charlie out of his cage, and ending up saving him from his plight, only to find that Maria saved Charlie, and then Charlie saved Maria in some of her dark days. The two didn’t know they needed each other, but God knew and brought them together when they needed it the most. They were inseparable, Charlie going on many adventures with Maria, her sidekick, together they made it through some challenging times, and shared much love. They truly were a gift to one another.

Charlie also shared a lot of love, with everyone he met, whether in person or on zoom calls and meetings, Charlie always brightened everyones day, and brought out the smiles in us all. Charlie and Pheobe spent time on the zooms together too, they being so similar, in all they love they provided many of us.

Charlie has been a big part of Maria’s life and the life’s of those who saw Maria and Charlie together on Zooms, at her local P2P Groups, and everywhere in between. Together they have had a big impact on many. Everyone who new Charlie felt Charlie’s love. Charlie will be forever missed by many, but none more than Maria.

Charlie and Charlie’s love of Maria will always be, Maria will be forever grateful for her little bundle of love named Charlie.

This story is important because it speaks to the value and depth of friendships formed far and wide through support groups like those of DAI, and others, and how those relationships are not superficial as some might think, they are real, they have value, they bring value to each others live’s, not just on the good days, not just at the meetings, but far reaching across the miles, through laughter and tears, through the sharing of our beloved pets like Charlie but maybe more importantly on our very hard days, we connect with people at different levels and sometimes we don’t even understand that until in a moment we know who to call and why, God answers in our times of need.

I am very grateful that Maria felt comfortable in her ability to reach out in her moment of need, I’m glad she new she would receive understanding, compassion and love for her and for Charlie.

I know all of us will keep Maria in our hearts and think of Charlie and the smiles he brought us.

RIP Charlie – I know those wings will be helping you watch over Maria.

Maria and her beloved Charlie

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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

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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.

Photo by Hernan Pauccara 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

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.

Photo by Eva Elijas on Pexels.com

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.