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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

Maintaining Brain Health Can Be Fun

Brain Health Awareness month continues throughout the month of June, and after my friend Brenda told me about a movie with Robert Redford and Nick Nolte, called “A walk in The Woods”, and that it reminded her of me, I decided to check it out, I laughed and cried, I cheered, and I understood so much of what was said and not said.So Thank you Brenda for letting me know, I think its a terrific movie for anyone who is ageing and or living with any type of illness, chronic, terminal or otherwise. I think I will watch it again, it is so in line with what I have been doing and want to continue to do. It got me thinking about how often we focus on all the “medical reasons” for us to look after our brains, and they are for sure at the top of the heap of importance, I mean after all if there were things you could do, and often there is so that you don’t end up with dementia or some other cognitive issue wouldn’t you do it? There is also much about the diet and exercise/ nutrition component to thwart off many illnesses that impact our brain health, like diabetes and heart disease. etc., and yes even if you do all those things there is a chance you could still end up with some type of brain/ neurological issue. Sometimes it’s genetics, sometimes it’s the way our system is build, for me it is my vascular system, which is leading the charge. However just because it’s vascular at the core it still means that by looking after my brain health, I give my self a chance to maintain function at a level that allows me to live an independent and full life for longer.
But if we do all that is that enough? The short and simple answer for me is no. There is very large piece that I believe impacts our brain health, which in turn impacts all of our overall health. That is, our Mental Health, when we look after our mental health we tend to then look after all those other aspects of our brain health. I know the two are interconnected, but often we tend to separate them, we put Mental Health into one box and Brain Health into another, and often from a medical view they are very different, dementia is very different from bi-polar, or schizophrenia , or epilepsy, yet they are all related to the brain.
So why then am I talking about our mental health as part of brain health awareness month. Here’s the thing, when I look after the things that impact my mental health, like stress, fatigue, sleep, I look after my brain health. If I deal with traumatic events that I may have buried or locked away, when I accept things that have happened, I make room for things like joy, happiness, laughter, real laughter, I make room for good things positive things to move into my space. When I let go of anything that is negative or toxic to my well being, that is draining me and blocking my ability to find and seek joy in simple things, that is me looking after my mental health, therefore my brain health. My brain Health gets an immediate boost, less brain fog, less fatigue.

I have learnt that my brain health, or more specifically for me, my dementia and it’s symptoms become much more pronounced when I am not keeping things in balance, when I overload my plate taking on too much, pushing to do more, sorta like jumping back into the rat race we all believe is life. We somehow believe we have to be that busy, that there’s nothing we can do about it, we have to work that much, we have to belong to this that and the other, we never say no. We become so over busy, we often can’t even recognize the impact it’s having, often until some type of event makes us come face to face with it.
None of us are perfect and even after some event or diagnosis we can still put ourselves back into that same mode, sometimes it happens slowly and we just don’t realize it, but there comes a point where we do and then instead of continuing to over tire and over stress our systems we have to take steps to regroup, give ourselves permission to put our own well being and mental / brain health first.
Some don’t because they believe pushing through is always best, some don’t because they feel it’s selfish, others don’t because they believe it’s too much work.
I believe we can do much for our mental/ brain health, without making it hard or difficult. Do I think we should all deal with trauma we may have endured, absolutely, but sometimes doing the simple things first allow healing of many of the others. For me I spent years having very types of counselling, to deal with the various traumas that have impacted me, and now it’s about recognizing when it’s time to regrouped myself.

So in that last couple months it became about scaling back how much I’m doing, making room for the things that bring joy, like a walk in the woods, discovering new places in the backcountry, gardening, simple walks taking the time to listen to the sites and sounds, taking photos of things that bring me pleasure. Going for a drive to discover a new area. Learning more about the wildlife I love. For example, I love crows, they are fascinating to me, so I watch them, I listen to them, I talk to them, I learn about them. Most people think they are a nuisance, but they are intelligent, I admire them for their commitment to family and community, they have amazing memories, do you know if they have any type of interaction with you, like perhaps you yelling at them or somehow making them feel you are a threat, that from that moment, if they don’t see you again for forty years they will recognize you, ( you may decide to be nicer to them know). They have strong values. I find a lot of joy in getting to know them.
So it doesn’t really matter what it is you do, it’s about doing something, to find ways and places to let your mind go, to enjoy the silence, so you can hear your own thoughts, not the noise of the world, not all the stuff society is telling us, but to learn to hear your inner voice. Maybe it’s playing or listening to music, maybe it’s art, maybe it’s baking or cooking, sewing, gardening, the list goes on, maybe it’s something as simple as reading a book. For me it’s being in nature, taking it all in, the fresh air, the sites and sounds, and when not doing that gardening, taking care of houseplants, and my music, and of course my little dog. So remember taking care of your brain health, means taking care of mind, body, soul. Give yourself permission to stop and smell the flowers, make life changes if you must, but if making those big changes are too scary then start by carving out time and space for doing things that bring joy. And truly it is about giving ourselves permission to just stop.

I hope you enjoy these photo’s of my adventures of the last little while, my health has definitely felt the benefits. My fatigue is lessened, my brain fog improved, my inflammation markers better, my energy levels improved. Brain Health…. it’s important to all of us, and for those living with Dementia, it truly is something that we have to be mindful of.

So take time to enjoy, it takes time for our bodies and brains to relax, but keep working at it…. there is no harm in doing things in a simpler way.

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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

Congratulations and A Look at Advocacy and Being On a Board

Today I want to Congratulate the newest members to DAI’s Board, Terry Montgomery, Phyllis Fehr, Julie Hayden and TanTan Ong. I have had the pleasure of working with and getting to know and forming friendships with this incredible group of women, and I believe they will bring much to the board and the direction of DAI. I look forward to working with them as they move forward in their new roles, as a former Board Member to offer support, encouragement, to them all.
I would also like to say far well to the outgoing DAI board members and thank them for their support and friendships and for all the tremendous work done.
Being on the Board of Directors for DAI was a great honour and privilege for me. It is not the first board I have been on, it was just the first board in the Dementia realm. Sitting on any board in my opinion is an honour. For me personally, I took my responsibility as a board member seriously, I worked hard and gave of myself to DAI, to the best of my ability.
But I also believe that part of the role of being on a board, of any type, requires that we work and encourage new people to step into roles on the board, which I also actively did. Because being on the board was never about me, it was always about contributing in a way that would ensure every chance for the organization to move forward . Every Organization needs new outlooks, fresh ideas, a new set of ears and eyes, it’s what keep an organization healthy. Boards that have the same people on the board for long standing lengths of time often end up being more like a club, or clique, a too narrowed focus, because they become narrow in their thinking and often lose the ability to listen to their members at large.

So I am very proud of myself that although I could have sat for one more year, I had to take stock, being honest about what was happening in my own life, looking at the four I had been along with Kate talking to about taking roles, I new it was time for me to step aside and allow them to all take their seats at the table. This was about doing what was best for the organization as a whole not about me. The easy way would have been to sit and try to manage through another year, but easy is not always the right way. I have never been one to take the easy way, I have always made the hard decisions when needed. DAI, has and is a wonderful organization, life saving and changing for many, they will always have my help and support, just from a members role now. I would like all boards to have discussions with their board members around around things like mentoring and watching for those who may make great additions, it’s my belief that people should not sit on a board because of the title it provides them, they should always be willing to step aside if it’s for the betterment of the organization.

I am not sure what’s next for me, this last month as been focused on rebalancing and grounding and taking some much needed rest, still active in things just in a different way. Will the day come when I will actively be part of a board again, I’m not sure, but I am grateful for a wonderful experience.
Advocacy and advocacy work is hard work, but step by step we are seeing things improve, never fast enough for those of us advocating, but slowly the difference is being made. Each and every advocate out there whether on a board or not deserves a huge shout out for all the tremendous work they are doing, so o day I say congratulations to you all for all that you do at whatever level you are choosing to do it, one is no more important than the other. I will continue to use my voice from this new place I know sit, and watch and work with DAI, DAC, and others to continue to make in roads, but for the moment, I’m catching my breath.


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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 a Cure

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Photo by Nataliya Vaitkevich on Pexels.com

In the world of medicine there is many drug trials started and stopped, we have had some drugs provide amazing results for many with varying types of illnesses, people are able to manage their Diabetes and M. S. now, and many live full and productive lives. Cancer has come a long way in the last 35 years, with drugs, and treatment options, some curable, put they at least look at the specific types of Cancers.There is specific treatment options for specific types, lung, prostate, pancreatic, liver and on the list goes.

That is not the case with Dementia, and still most of the focus is on Alzheimer’s and we still haven’t even managed to get the general public to understand that Alzheimer’s is just one type of Dementia. We in recent years hear more about FTD, Lewy Body, Vascular, but their is so many more, so Dementia Specific targets would be great. Progress is being made. Advocates are giving voice to the needs of the many not just hose effected with Alzheimer’s. Advocates are fighting hard for help to get the resources in place and provided that can and do provide a better quality of life.

Unfortunately with Dementia that has not been the case a few medications that help slow the process or if not the process the effects of the progression have come along, and they too are by and large controversial, how much good do they really do, are the side effects worth the gain, how long do they actually work for and what happens at the end of that time? I am caught up in that, they don’t want to stop my medication they believe after two years it no longer helps with any gains, but they don’t know if the losses I could suffer from stopping it could be regained so the decision to just keep going is made, but is that hard on things like my liver and kidneys? Again many factors. There have been too many failed trials to mention.

Last week the world cheered as the approval from the FDA for a new drug was given. I reserved my opinion, I waited with bated breath, and then it happened, controversy erupted, resignations fell, chaos and turmoil. I know people on it, I know someone within my own community who was on it when it was stopped last time he was devastated, when it was restarted he thought he would get to restart, he didn’t, the devastation as send him spiralling and his family is watching the aftermath. It was heartbreaking talking to them about it. He has given up.

I sat thinking and wondering if anyone when looking at whether it is in fact the right time to announce approvals, or give the go ahead ever considers the actual impact on those effected with the illness. Or do they fall to pressure, because it’s more about money and politics than it is about the actual people living with the disease. I wondered do they know that they could send people tailspinning into depressions/ suicides over these decisions. These are real people who hang so much hope on “the cure” that they cannot emotionally or mentally withstand when things go sideways as we saw last week. the heartbreak for families, the deepest wish for someone living with the illness to have a better quality of life, and a prolonged life. Do they ever sit at the table and have that discussion as part of the process, or do they look at public demand, and money to be made, and political gains to be made. I feel bad for the people living with the illness who have to live in the midst of will I still get the drug, will it be stopped, what happens next. Life is hard enough for those living with the illness without those added stresses.

Its awful that as a person living with the illness that I have to even give thought to these things but I do, because I hear the talk, I see the hope, I see the devastation.

Photo by Artem Podrez on Pexels.com

I have long ago given up the idea that a “cure” should be looked for, instead money should be put into understanding the 100’s of types of dementia better, finding medications that can help people manage their type of dementia and its symptoms to gain a better quality of life and therefore likely a longer life, with less stress and cost on the whole system. With those who love and care for those with Dementia being able to manage more effectively. I now there will never be a cure in my life time, I’m not even sure they will get to effectively manage many of the symptoms of various types of dementia in my life time. At best I think the people living with Dementia, the Doctors, Specialists, other health care professionals, who are helping with nutrition, rehabilitation, exercise, life style modifications are helping many of us have results that are surpassing what many thought possible. Along with earlier diagnosis.

I don’t believe, Ego’s, Power and Money and Politics belong in the arena when peoples lives are the cost paid, but that is what happens, with total disregard for the impact on those effected. I wish that a cure would be a reasonable expectation, but I worry, because the brain is the most complex part of our bodies, and is understood the least. Don’t we need to first focus on getting a better understanding of its complexities and how how all those different areas and pieces are fully effecting others. We have come a long way, we have a long way to go, I just hope somewhere along the way they can look at the impacts and effects the decisions they make that are far removed of any of the faces they are impacting changes in the coming years.

These are of course only my thoughts and opinions, everyone will have their own, and its most certainly not that I don’t believe in reaching for the stars, but I do believe if you are going to reach for the stars, you better make sure you are looking after those impacted the most.

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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 Good Day

Today I wrote a post about my late husband, here it is:

In loving memory of my husband Uwe Thelker

At 10:53 pm tonight my life forever changed, all the plans, hopes and dreams for our future forever altered. You took your final breath, together we did all we could do you could leave this world for the next in great peace, and for that I will always be thankful. 16 years have come and gone, the love burns as brightly as ever, I am with you always, you are with me. This song has so much meaning and these words are exactly true for me. I am grateful for you, for you were not an easy man, but you were a kind man, and you loved me completely as I loved you. So tonight at 1053 I’ll be sitting under the stars, feeling close to you. Being grateful that I had you and you had me.
Always Loved, Forever you will walk with me…. ❤️❤️❤️❤️❤️🦋

The reason I’m posting it here was to say thank you to those that sent such beautiful messages, and a very big thank you to those that knew Uwe and reflected on his presence, it does my heart good to know he is not forgotten. And to Glenn Wallman, your kind words that you felt the love we shared in my writings and how and how even though you never got to meet him you did and could see the great love I carry for him.
Many times as someone losses someone, they are told it’s time to move on, or you’ll get over it, or a whole host of others on those lines. But for many that have lost someone, it is not about “ getting over it”, or moving forward. You do move forward, there is no other way, but your life is forever changed, altered. It doesn’t mean we don’t have a good life know, but it means there may be times during the year that we need time for ourselves, to be allowed to remember and reflect, to honour someone who was an important part of our life. Someone said to me today that you just shouldn’t and they don’t ever think about those things, those important moments in life, they only allow themselves the happy bits of life. I try to respect everyone else’s view.
For me it is not about the sadness or the sad time, it’s about honouring someone who was important to me, I was not sad today, I was quiet, there is a difference, but in that quiet I was happy thinking about conversations we had, things we did, moments that were special, there was no sadness except maybe in the wishing I could have had my life with him for longer, but I don’t dwell on that, I am grateful for what we had.
This week has been a week of three very big and significant life events, I chose to make it a week of honouring, re,ember I got and being grateful and mindful of the impact on my life.
it is very true that each person must wade through grief in their own way and time, I believe in some ways you will grieve at some level for the rest of your life. It doesn’t mean you can’t be happy, can’t have a fulfilled life, but the grief will sweep you away at times, so in order to manage it, I chose to honour the grief, the events, the people who are at the heart of it.
Today, I spent the day being mindful, I spoiled myself a little something I very rarely ever do, I got two miniature roses for my deck. Uwe used to bring me roses, so it felt good, I brought another small houseplant home I’ve named him Moses, and I was gifted a beautiful house plant, so between gardening and my deck and my inside plants my day was filled with life, with things that are vibrant. Chatting with Brenden, and Natasha, getting pictures of the grandchildren doing the relay for life, it filled my heart.
So I encourage you all to find ways to honour those significant events that impact your life, it is important to our well being, it’s important to our brain health, it is also important to allow others to do it in ways that are meaningful to them.
I know my dementia has not stopped me from remembering the first incredible kiss from the man who became my husband, or how his hand felt holding mine, they say we never forget how how someone or something makes us feel, I believe that with all that is me. So here’s to learning how to get through for what many would be an insurmountable week, in grace and gratitude, and knowing I am better for the impact placed upon me.
So thank you everyone for respecting me in my choices.

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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

Whats Good for Your Soul Is Good for Your Brain

Mom, my inspiration, my teacher

Yesterday was 14 years since mom left us, I miss her so, but she continues to guide me, to inspire me and helps me through the rough spots. I am grateful that I had the privilege to be her daughter. She lived a life filled with much tragedy and heartbreak, she was witness to much growing up that no one should have too, but she held onto her zest for life, for finding joy, laughter and for always trying to brighten anyones day who she crossed paths with. She was the one who taught me about resiliency, and being resilient without having to be mean or unkind. That when your heart and mind were weary your best course of action was to keep your hands busy, garden, crafts, sewing, cooking, and doing something for someone else, was the best medicine, when you focused on other things your mind has the ability to sort through the troubled waters. The lessons learnt and taught have carried me through much in my life. I am deeply grateful for the life gifts she provided me.

So yesterday was another quiet day, this is traditionally a quiet week, lost in thought and memories. I have been tending my newly acquired garden boxes at a community garden I just discovered a 1/2 block from home. Securing two boxes for the year, I have been busy planting, and enjoying the walks a couple times a day to water and tend them. It has also offered me the opportunity to meet new people, I have already met three. I have planted some things that my neighbour downstairs who is 95 loves, so I can provide her with some fresh vegetables.

Its been a great way for me to have some socialization without overwhelming amounts of people and or noise, a nice way to interact and get to know new people. This is good for my soul, good for my brain health, great for my overall well being. Fresh air, exercise, good conversations, and gardening. So the benefits are all ready being felt. I am also helping another friend, who is making a big move to England, and so doing things for others is also good for my brain health.

Allowing myself time to step away and reorganize my advocacy work, is allowing me to do things that are not as draining on my brain power, its recharging more each day, my brain fog is improved. I actually am feeling proud of myself for taking the difficult steps to ensure my quality of life remains intact as much as possible for as long as possible. I am responsible for my well being for as much of it as I can be, I may not be able to control the outcome of my dementia, but I can do all the things I have learnt to give myself a fighting chance.

And although this week is or could be a week of great sadness, my anniversary, the anniversary of my moms passing the anniversary of my husbands passing, it is not a week of sadness. it is a week of thinking about many great moments shared with them, its thinking about how much my life was enriched for the time they were with me, its about being grateful for all that was, for all that they were to me, and for all that they will always be to me no matter how much or where my life goes and changes. Yes its a big week for me, but it is a good week, I am blessed and I am grateful.

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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

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

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

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

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

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

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

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

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

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

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

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

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

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.