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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

It’s All About Acceptance

I have forgotten when I last wrote, there is a lot of reasons that my writing is becoming more sporadic, but mainly because my brain has been needing to rest, a lot of rest. My brain once again feels like if you peeled open the outer layer of skin, lifted it from my forehead and peered in you would see a very bruised brain. That’s how it feels right know, very tender and bruised. Don’t know of any other way to describe it. When my brain hurts, things become much more difficult to manage, simple tasks remain undone, or I try to do them which leads to anxiety, and boy oh boy to I feel for people who suffer anxiety, it’s a new thing for me, and I knew it was awful and difficult for people but until experiencing it had no idea how difficult.


A dear friend and fellow advocate from Singapore recently posted a slide that perfectly describes what is happening for and with me at the moment. Emily Ong, thank you for allowing me to share this here ( picture below, thank you for all your advocacy work, you truly are a blessing to us all, I am so glad I got to know you, mentor you and form a friendship with you. We need many more like you to step up and get involved in advocacy as so many of us just by the nature of our disease are having to slow down.

This is what I have done to my brain, again, it’s what I do when I am on a good stretch, I overload and overwhelm my brain. It crashes, I crash, it forces me to go quiet, it says no not today, maybe not even tomorrow, it lets me know. And it truly is like a computer that is running slow or crashes, too much open, you have to go in and clean it up, but with our brains that are trying to manage a disease, cleaning it up only happens when we allow it to rest and recharge. Recharging takes longer each time, push to hard things like TIA’s happen.

Speaking of which so during this last spell, something unusual happened, my dog, who normally just curls up beside me at night and goes off to sleep for the night and stays there till morning, but on this night, she started pushing at me, until finally because I wasn’t responding as she wanted, she jumped on me started pushing her face onto mine until I opened my eyes to see her peering into my eyes, with a panicked look, she would not stop until I moved her to the side and actually got up, so I believe either a brain event happened and she was aware or I stopped breathing and wasn’t restarting as I should. That happens with severe apnea, one day ( if I am lucky that will be my out from this world my brain will just forget to send the signal for me to restart breathing.), Can’t think of a more peaceful way to go, but don’t think it will be for awhile, but then again one never knows. Anyways she is so very in tune with me, and somehow I think it keeps her going, looking after me.

That was likely the result of me overloading my brain and it’s easy to do because when we feel at our optimal best, we want to do everything, so we try, lots of meetings, lots of writing papers, speeches those kinds of things, a lot of advocacy work. Plus a lot of trying to do all the fun and joyful stuff. The trick is that we have to come to a place where when this happens we have to readjust, re-adapt, and make a new plan of how much and what we can manage, accepting it is part of the process. Allowing and knowing it’s Ok, to take breaks away from everything, all the stuff that is overwhelming your brain, away from screen time, tv time, meetings, all of it. Turn on the music let it soothe your soul, let it calm your brain. Rest is more than OK, rest is the only thing that allows our brain to recharge.

It’s a hard battle within ourselves, because we want to do so much, acceptance doesn’t always come easy, and sometimes our brain itself, after all it’s in control, tries to trick us by sending messages that make us feel as though we can somehow use super powers to continue doing things.

I am continually learning, ( yes people with dementia can and still do learn, and understand things), so I am continually learning about how intricate and fascinating the brain ( my brain) really is. I have learnt to have a great deal of respect for it, to try to uphold the fact that it needs to be looked after, brain health is important. I wonder why we were never taught these things during our formative school years. We should teach more about the health of our bodies, brains, more about nutrition, the importance of rest, all of those things are lacking in the education system.

A dear friend of mine, from Vancouver Island was here yesterday we met for a good visit and catch up, her move to he island was recent and I am so appreciative that each time she comes to town she ensures we get a visit. I like that I don’t have to try to be ” normal” that however I show up is ok, I like that she calls me out on things, like we were taking about my brain ” letting me down” ( truth is I Have been letting it down by trying to force it to do more than it can manage at this point), yup she reminded me of that, she reminded me to give my self a break, she reminded me of how much I do actually do ( another thing my sister in law also reminds me of so often, how I often don’t feel like I am doing anything or enough of anything, when in fact it is just that my brain is not remembering what have been doing, and I forget that I forget…good grief it is complex isn’t it. So I so appreciate the visits and the reminders to be gentler with myself. I tend to be very hard on myself, a left over trait from the former me. One of my other friends stopped by because he said he had messaged two days earlier and I had not answered, so he came to check on me, and said, “I Think your brain is not working very good right now.”.yup the friends that get it, accept it and understand it are my hero’s. It’s easy for me to miss things, for time to lapse, because I have no concept of time anymore, so just being accepted in whatever my day is like today is worth more than words can say. That they put in the effort to stay connected share laughter and tears, and find joy doing whatever with me, knowing that I may not always be able to remember to reach out. So very grateful, So very blessed.

Sunday night I am going to see Jesse Cook at the Performing Arts Theatre, the tickets were a gift my friend from the island, music is really great for people with dementia, he is an amazing guitarist, my friend Marijon will join me, I don’t generally do evening things, but for special things, I work on revamping my day to allow for the event. I am so looking forward to it. I haven’t been out to anything for a long time and as we discussed yesterday the timing is likely perfect because it will soothe my bruised and sore brain.

I have my speech ready for my meeting with the Minister of Health Canada, next week, looking forward to that. Again a lot of brain power used for it’s preparation. Hoping good things come from it.

So as we head into another weekend, another week that has gone by, I feel as though I am somehow in a race against time, so its hard not to put pressure on oneself to try to do all the things I would like to do before I no longer can, but reminding myself to pace it out perhaps one main project a month, learning a different way so that my brain can have an easier time as we march along this path together. I hope you all enjoy this first fall weekend.

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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

Query

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Its a topic we hear about and talk about all the time and at times it seems almost like when we are asking and looking for help and answers as to the why’s and how’s we are ungrateful, which in fact is so far from any truth. So what am I talking about? Well it’s about the fact that everywhere we look, for example I had a newsletter come today almost every thing listed was for and about caregivers and caregiving. Again, we are grateful that the caregivers are getting the much needed support they need and ask for. They truly are a deserving bunch.

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The issue is why aren’t we the people living with dementia getting the same? I am not wanting to put blame anywhere, I am truly wondering why the vast difference? Is it because people with the lived experience find it easier to just let the care givers do and be the voice? Do people with the lived experience somehow feel like no one really will or wants to understand them from their own viewpoint? Do people with the lived experience somehow feel like no one actually cares about what they personally feel or think? Why oh why are people with the lived experience so afraid to step up and speak out? Do they not want to offend or upset their partners and those providing care? Has the years and years of stigma around dementia been ground in so deep that those with dementia still feel they need to hide it, not talk about it? Do they still feel like they have no value after the point of diagnosis? I see people with the lived experience who have become part of peer to peer support groups like the ones run by DAI http://www.joindai.org, and Dementia Advocacy Canada, and I have watched so many people with dementia find their voices and find purpose, and they come alive at those meetings, and many have gone on too contribute to their own communities, countries and the global voices of dementia, they have and are doing incredible work. However there is still a vast number of them who won’t, or can’t or don’t feel they have enough to offer to step outside of the support groups. the support groups offer a place of safety, no judgements, just acceptance, is that the missing piece that other venues have yet to be able to offer?

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Are those living with dementia still feeling as though they will be judged, or treated as though they are less than equals with others?

There has been a very noticeable shift in recent years in how those with dementia who do step up and contribute are seen, and treated. In most cases they are treated as equals. I describe it this way, its like bringing everyone to the kitchen table, talking, listening and sharing, your background, your chosen profession, none of those things matters at the kitchen table for at the kitchen table we are all just people. There is no hierarchy at the kitchen table, just people. Too often too much emphasis is put on what we do, what we do does not make us who we are, yet people spent years equating them to be. Research is about much more than labs, and test tubes and people in white coats.

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The shift that has happened particularly within the research realm is that researchers embraced working with those with the lived experience, collaborating, working side by side. The benefits for them is they get to learn from us, understand right from the source what we need, not trying to do research based on assumptions of what we need. We benefit because we get to help ensure the research being done is for us, with us, not just about us, we make connections, we contribute in valuable ways. It provides purpose. So I am not sure how we reach all those sitting feeling like they are not valued and or understood, because there is places for you to feel like you are contributing, like you are of value, that you belong, that life is and can remain vibrant. It may not be life as you knew it, but it can be just as meaningful maybe even more meaningful. The big question is how to reach everyone and encourage them to take part so that we along with all the others who are yet to be diagnosed will have a better quality of life?

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Again I started this blog days ago, and am now back to finishing it or adding to it, I am not sure. My recent days have been a mess of blinders, bad brain days, unable to complete many simple tasks. I was trying to print some important things off my printer, I could not get my printer to work, had to get some one else to print the things off, the following day, or perhaps a number of days, I am losing days like crazy, trying again, after two hours with anxiety hitting an all time high ( dealing with anxiety is a fairly new thing for me), off to the Staples store I went. Trying to print it on one of their computers, nope brain is just not able to manage to connect the dots, store manager saves me and my day, by taking over for me, which went a long way in helping get my anxiety back in check. Next day trying again, now I have created such a mess my printer is totally taken out of my computer, I don’t know how to get it back up. It’s time to admit, I need to bring a computer person in to get things going in the right direction again. This will also go a long way in keeping anxiety in check. So I thought my printer was faulty but its my brain showing its faulty wiring. My brain is tired though I have been working on a few pieces for upcoming events and those things are draining my brain more quickly now so I am going to have to retrain myself to manage them in a different way at a different pace. Without the help of some wonderful researchers and those friends who step in and help none of it would be possible anymore. I am getting out more now that the days are cooler, and enjoying having the doors and windows open all day and night. the walking is good for me and I can hopefully get some exploring in before the snow settles in.

I feel like I am pushing hard to get one or two more decent years in, do things I want to do, it feels like many of us are pushing hard at on many fronts with our advocacy and work with research, in large part because we have yet to figure out how to reach others so that they can pick up the baton and keep things moving. So if you need help to get connected reach out we are all happy to have you come aboard and get involved, you will meet great people, share lots of laughter oh and yes perhaps at times tears too, but your life will surely be enriched.

This is so appropriate for today as the clock strikes 9 am and my brain already is telling me its tired.

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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

Here We Are at Another Sunday

Here we are another week gone by, life is marching on so fast, changing so fast, its hard to keep up with it all. Most times I am lost trying to navigate where we are in the week or month even. There is so many things changing for so many people, not just dementia but life as we now it. It feels as though the whole world is in a state of transition and I am not sure where it will take us all but I am sure hoping it will be to a place where we all gentler and kinder. Where everyone has enough to eat and clean water to drink, where we care for our earth and all that it provides vs. thinking we are superior in all ways and in all things.

The world and all its beings, humans, animals, earth nature, our oceans and waterways, all hurting. I feel at my core that the pandemic was the start of this transition, then the war in Ukraine started, then came supply shortages, food shortages, and on it goes, then Her majesty Queen Elizabeth dies, ( a side note my middle name comes being from the queen, my mother loved her), that too me signifies major change in and around the world. I am not sure we are through the worst of what we are to feel before it happens, I somehow , although I hate to say it but I truly believe worse days are coming before we see a new way forged ahead. But I also believe that when we do reach the other side we will have a much better world for all to live in.

I miss my sister terribly, I called to chat with my brother in law today, got the answering machine, my sisters voice came on, I heard myself gasp, I wanted to hang up and call again so I could hear it again and again. Instead I just had a cry. Then I had a long phone call with my brother, was good for my heart and soul.

My brain is all over the place on day to the next, physically I am feeling good, inflammation down, yoga, exercising, meditating, walking, riding my bike. I embrace the times when I am physically able to enjoy life a little, for the times when I can’t are sometimes long and feel as though they are never ending.

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We just had the Harvest moon, and I believe the moons have so much influence over our brains, it brings tides of change and just as the tides change so too do we. even if just for days before, during and after, I am always wondering about how much is really put into understanding the effects of the mons, the seasons have on us. I think back to my working days and their was those of us who were always aware and watching for changes in people during the change or approaching full moons.

Today is Monday, somehow my Sunday writing has transpired to be finished on a Monday, but thats how things are for me, for if I lose focus even for a moment, I will not get back to whatever it was I was doing, for it is gone for the time, but its a new day and I was suddenly reminded that I had a blog that remained unfinished. What reminded is was something someone had posted and the link to the article is below.

Controversy abound around the topic of medical assisted dying. There is many varying views and ideas about what Medical assistance in dying is and or what it should be.

There are many living with dementia who believe we have become the disposable ones, during covid, receiving the least amount of care or concern, and this was shown to be true. No one should ever be disposable, no one should have the right to decide who is worth saving and who isn’t.

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But we all should have the right to decide what is right for us, not for what our loved ones or our friends but for us. If we taught all these things in school if it was all part of education, people would make wise decisions, long before decisions such as who is going to live and die ever happens.

Medical Assistance in dying is a wonderful tool, to allow someone to die on their terms in their way. For people who want to ensure they have a good death, that they are not a burden on anyone, that they do not have to risk suffering pain and discomfort, it is a welcome option. For some families it is a way to celebrate the ending of life in a fashion that allows for very special moments. It does not mean they will grieve less, it just means that the final leg of the journey can be something they can take part in and cherish. I have known a number of people who have been able to access this way to their final journey, I have yet to hear a family member saying anything bad about the experience. Most admit, that it would be their choice too after the experience. I have had the honour to sit by the bedside of many many people as they left this world, I have seen good deaths and bad ones, the best ones I have seen were done as the person wanted and outside of hospital and care settings and I believe if people are able to access medical assistance in dying, we would have many more good deaths. I have had the conversations with people who believe that it is going against gods will to take ones life, but if that is true then when we use medicine to keep people lingering longer that they otherwise would without the measures we use to medical interfere to sustain life becomes just as wrong. So I will never judge someone for their personal decisions, I will fight for everyone to have the right to choose for themselves and not be at the mercy of others deciding who gets care, who gets life and who doesn’t.

I also believe that we have to take our personal beliefs out of the equation and listen to what the person wants honour the person.

It is about personal choices, mine are made, they are rock solid, I will never go into an ICU, I will never be resuscitated, those are my choices to make. I am fighting for the rights of people with dementia to be able to preset their medical assisted death, before they reach a point where they can no longer make those choices, my doctor and I have worked hard to cover it all off as absolute best we can for me in the meantime.

But we all need to get real, we all need to do some deep soul searching about what we want and learn how to talk about it. Not just flippant conversations when we see or hear about in the news, but to have conversations with our families about all end of life aspects. Teach our children about life and death from young ages, go back to a time where we truly allow people time and space to mourn, where we don’t keep putting off making our decisions known and doing them in a legal manner to protect ourselves and to help our loved ones.

I don’t like articles like he ones below because they make it all about the $$ instead of what it should be really about and that is the human piece in all of it. So the picture they paint makes it all sound awful and for sure if we don’t fight for the right to make those decisions for ourselves then we give the people in those settings to start making decisions for us. It is a fact of life in a real disaster people are triaged, sometimes there is no other way when there is mass casualties. The case of people being left the way they were in long term care is a whole different issue it is about a lack of the system to manage and maintain care during a crisis. These people were not triaged they were just neglected. People are trained to do their basic job on a day to day basis, they are not trained on how to manage and reconfigure work loads during times like we saw in Covid. This kind of training should always be a continuous learning and doing. Anyways its a big topic, no easy answers unless like me you don’t leave nothing to chance hoping those around you will make the right choices for you. Whatever and however you feel about it is up to you and we should all respect each others wants and needs in it. Here is the article:

https://www.cbc.ca/news/canada/manitoba/medically-assisted-death-could-save-millions-1.3947481

Ok onto other thing, as turbulent as life is and as much as we are transitioning to whatever the way forward the world decides to go, try to be in the moment, the moment of your life. Enjoy the day, enjoy the next day and the one after that, in whatever fashion makes you feel filled with joy and happiness. For if we focus on the good that still abounds for us all we surely will have and find a brighter way forward.

Wishing you all a lovely week.

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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

Just For a Moment

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Yesterday I had a lovely day, a beautiful day really, unless of course you count all the things that my brain had me struggling with. Like in the morning looking at my blister pack ,thats what they call it here when they prepackage your medications so you know what day and time to take them, I was confused I was sure I had taken my pills an hour earlier , but there it was my Wednesday pills staring at me, except wait let me go check, crap its Thursday..so what the heck did I take and what should or shouldn’t I take now? Well, maybe I better not take anything more and start again tomorrow. Almost missed a meeting, oops almost missed two, halfway through the day I realized I had put two of my nitro patches on. Geesh… oh well my printer wouldn’t work or at least my brain could figure out how to get it too work. Despite all of those blunders, I had a great day, but last night I woke up and I was angry, in that moment, I hated my dementia, hated it for challenging me so much, HATED,HATED, HATED IT… yes I have days were I hate my dementia, even though I say I live well with it, and for the most part I do, but some days, when it really challenges every thing I am doing, I rage at it, and last night thats what I did. My brain is fatigued today likely from me fighting it on some many fronts yesterday, so today is a home day a rest day a quiet day. Even with things like blister packs in place things are only good for as long as they are good and when they start becoming problematic, then we are back to the drawing board finding solutions to allow us to manage what we were but no longer are.

It’s a constant, changing, changing, changing again…never ending in the dementia world. It’s we we do we adapt. I was and am enjoying the beautiful weather, I can and love to be outdoors and this time of year is perfect, but some days my brain says no stay home and stay put, that was today, however I used it to go through clothes, and cupboards get rid of stuff that not longer serves me, every passing day, less is more for me. I have never had a closet so empty, cupboards with room to spare. Transitioning to what I don’t know but it feels like I am once again in transition.

My calendar is filling up again, advocacy work is kicking into gear, October will see me in Regina Saskatchewan, November in Toronto Ontario, other on line events as wellI really need my brain to cooperate and give me another year to complete things I still want to do. Some things in my control, others are not, I have to remind myself one step and one day at a time. Today was the first day I had a lighting bolt sear throw my head, so it was that clear warning, … yes I am paying attention…yes today I will let you rest my dear brain, I am sorry I was angry at you last night, I will do better to understand you. Thats me bargaining with my brain…. seems and sounds crazy right… well you should live inside this body/brain of mine. Dear Brain, I hope tomorrow we can play nicer again. For now just rest.

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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

AHH Yes More of those Sunday Ramblings

And this was the perfect picture for this post… I have already posted this, yup, it’s true, posted with no content, just a title, having a good laugh at myself, a little conversation with my brain asking it “what the hell are you doing”? Finding our way to laughter through the things that otherwise could cause a lot of frustration and anger, anxiety and tears, instead it is humour and laughing at one self is good for us. I don’t need to laugh at anyone else, I love to laugh with others but I don’t like to laugh at others, but laughing at myself is something that I have learnt to take great pleasure in. So thats how I began my post today.

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Its been a remarkable week in many ways, a lot of release happening, a lot of deep inner work, inner peace and calm, feeling this is a great time of transition again but in many ways long over due transitions, giving myself permission to start living, living in a much deeper more meaningful way, not just a way that often was me doing what was expected, carrying responsibility to things that are no mine to carry any longer. It is truly time and ok for me to live a life and fit all those all other things in, instead of sitting and always waiting to fit in when it was right for others. I feel like I can breathe again. I had a lot of heaviness I was carrying, it is been replaced with lightness and light. Finding and being authentic to me. That has given me the ability to really think about what I want the rest of my journey to look like. I cannot control the rate of speed ( with the exception of controlling things like nutrition, sleep, stress, exercise), my disease will progress at whatever rate and in whatever way it chooses. In the meantime, I can live, just live, doing whatever makes me happy. I love the lightness I feel in my being. I feel surrounded by really good energy.

This morning I got up, did an hour exercising and dancing, and washed my car, then took the dog ( the weather has cooled since yesterday and our ongoing heat wave, but we are now smothering in smoke from all the surrounding fires, so while I can have my drapes and blinds open because the temp is low enough I don’t have to black it out, I still have to really limit any outdoor time due to the smoke. So for some reason I meant to be indoors a lot at this time, perhaps so that I can do all that inner work, do my meditating.

I had the pleasure of joining my support group ( I’ve been away for awhile with all the personal things happening, so it was so great to be back to reconnect, man those connections are so vital), they filled my heart and soul, and how much I had missed them was very quickly realized. The importance of those support groups and the friendships and sharing and caring done cannot ever be understated. If you have dementia or someone who does this is where they will find unequaled peer to peer support http://www.joindai.org it is free and invaluable in how life changing it truly is, and this is especially true for many who no longer want or can get out to any kind of support, if you are lucky enough to have support in your local area, these peer to peer can be a great add on.

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I then went to meet and deliver something to a lady who had posted for something she needed, I had one and I really had no need for it at this time, so I gifted it to her, gifting things to people who can use it feels good, I remember how grateful I was and still am to the people who helped when I needed it particularly in the first few rough years after diagnosis. so giving back feels good. She was so thrilled, we had a lovely chat, I am glad I got to meet her, while we were chatting another young couple came and asked where they might be able to find something like I had just gifted her, so I helped them to know where they might post to say they were in need, we all had a great visit, kindness abounded. We all talked about how one small act of kindness goes so far and how it really brings more good. It was an uplifting encounter. I have had people say but you could have made $10, or some other amount, but sometimes, like today, seeing the good and how much it helped someone else, setting money aside brings much more value to your life. I don’t have much and I still struggle in many ways but if and when I have the opportunity to make a difference for someone else I try very hard too.

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I am now making my once a week very healthy and balanced meal, I don’t cook a lot, I make this and that, small but healthy but once a week I make myself do a full meal, its all done in my air fryer, I love that I can bake and do so many different things with it. I also made another big pitcher of my home made iced tea, with black tea and lemons and limes, I don’t sweeten it and I enjoy it warm or cold and it feels like paying close attention to what and when I eat is proving good results in how my overall health is doing, even my specialist told me after doing all my heart tests again, that I am holding really well in all areas of my health and do keep doing what I am doing and to get out there and live as much as I can. And as I was writing that last sentence my phone rings, its the doctors office…humm, I pick it up its my doctor, he was supposed to finally be off for a much overdo and deserved break, but the doctor shortage has once again, thwarted him having any time off , this is heartbreaking to me, he has not had time off since the pandemic started, a few hours here or there a day or two here or there, but not substantial time off, its a crisis that if we all look we can see, we all want our holidays our time off, yet so often we hear the doctors berated for needing and wanting the same.

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They are deserving, they need the break, its draining on them mentally and emotionally, I apologized to him and said I was truly sorry that again is time off didn’t happen. I have an appointment for Tuesday so was not expecting a call at a time when he should be on a holiday and it is the Sunday of a long weekend that most are off enjoying. He wanted to talk about my meds that I am on before he renews them for the pharmacy. I will still see him on Tuesday as scheduled. I wish I could take him something as a Thank you for all his hard work, I am not sure what would be an appropriate gift, I will have to put some thought into something. He has provided me with above care over and over again. I think we all need to let them know how much they are appreciated before we lose to many 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

World Alzheimers Month

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September is world Alzheimers Awareness Month, it still amazes me that many people think Alzheimers and Dementia are two separate diseases, when in fact Alzheimers is just one type of Dementia, for which they are finding more and more types all the time, and Covid is predicted to bring a whole new type of dementia on board. In the world of advocating one sits back and wonders and we have many conversations around how after 30 years of advocating, people like Dr. Richard Taylor, ( who by the way I was awarded the very honourable Dr. Richard Taylor Award for my Global Advocacy work), something I am very humbled and honoured to have received. Along with other great advocates like Christine Bryden, James Mckillop and Kate Swaffer to name a few. These advocates, great people, who worked and many continue to work tirelessly to see changes for the improvement in and around all things dementia. When we pause and think about it, we wonder, why it is taking so long to see movement and change. I believe there is many organizations making a lot of money on dementia by keeping the old views and ideals about it alive, so instead of doing and putting money into the things that could and would make a difference, they work hard at just showing that they are doing something to keep people from asking to many questions. I am not one of those people. I believe we need to make them more accountable, from our governments, to our health Authorities to our Dementia Organizations. Often times they don’t want to hear from me because they don’t like, I shouldn’t even say the don’t like, more that they don’t want to hear it, in large part because even they know it has become more about the big business side of things that it is ever about those of us living with the illness.

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Change is slow to come it took 30 years for Cancer to become something that wasn’t hidden away, and we stopped hearing terms like ” the C word” instead of saying cancer. It took 30 years of people living with cancer to finally start demanding and insisting on getting what they needed. the resources and supports in place. Do they have everything they need, no put they have much much more than those living with dementia, and some other illnesses. Know we find ourselves in a time when everyone is pulling back on what they are giving, the global issues facing everyone is making it harder and harder and people are also less interested, or perhaps they are not actually less interested they are just “life tired”, coming through the pandemic into world supplies issues, increasingly high costs of living. So even if they want to care even if they would normally like to be involved and help, they simply are out of steam, emotionally, mentally, physically, out of steam.

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Where does that leave us, the advocates who want to make a difference for all those living with dementia. We are stuck trying to navigate through times where finding support, volunteers, funding is at an all time, likely never seen before time. Many of us trying to find ways to draw people out to get them engaged, but how do you do that when people are so overwhelmed and fatigued, when someone’s tank is empty its empty and no amount of carrots being dangled make it less empty.

We want and need new voices of people with the lived experience, we want to help them find purpose and hope, and find joy, in meeting others with the lived experience all the while helping to improve things for others. mentoring others is something we aspire to do, so that others have the opportunity to share their thoughts, their stories, to help shape the future for all those living with Dementia. It doesn’t take anything more than a willingness to share, to be open and honest and allow yourself to be vulnerable. What is gained through being engaged is hard to put into words. Life changing, I no longer suffer with my dementia, I no longer fear it, I ROCK IT, it is one with me, my life became full again, meaningful. I have value, I have hope, I have purpose. I want others living with dementia to experience that as well. It doesn’t mean it is not hard, it doesn’t mean it doesn’t challenge me every single day, it doesn’t mean that I don’t have days that I am angry and cry and rally at it, but being engaged has made those days less.

But I fear if we can’t find ways to meet and get others engaged, especially during these challenging times faced buy us all, we will slip further back simply because all those who have been and are working tirelessly will become to tired as well, and we all have life happening for us as well, and we also have our illness which as we know can be very challenging at times and at some point will likely cause and end point in our ability to do the advocacy work, so it becomes a m ore pressing problem and one I think all dementia groups and organizations should be sitting at the table brainstorming with us about how to tackle these topics, they also have a very very large stake in sitting back and doing the same old, and not helping us with these issues. They have much to gain…the trouble is they don’t hear a lot of what we are saying know so how do we get them to hear this.

I also hope that when people are giving they really look and ask questions about how much of what they give actually makes it to help those living with the illness, often the bulk of the funds raised help them campaign to raise more funds to reach their agendas not to help those living with, the big organizations often take the bulk, leaving some of the organizations that are truly providing the much needed services little ability to compete for the donations. Food For Thought, during this Alzheimer’s Awareness Month.

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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 Our Brave

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Today some nice things happened, I spent the morning with a class of Health Care Aids, they were engaging and I loved spending time with them as I always have, this was followed by the arrival of a friend I have not seen for a long time ( she no longer lives here), a great time visiting and catching up, so good for the soul, both hers and mine I believe. Our visit and the engagement with the students prompt this blog today, sometimes we don’t know when, where or will provide us with inspiration, today I think them for as much as they say I inspired them, they truly were uplifting and inspiring.

I believe that somehow many people both with and without dementia having been feeling lost sort of, out of step with themselves with their lives. This is in large part created by a world that is filled with uncertainty at the moment. It forces us to go within, look deeper, delve harder. Are we really happy? What does happy look like? Are we truly living the life we want? Are we truly doing what we aspire to do? Sometimes when the world is upside down, when we have had the rug pulled out from under us, we have to find our brave. We have to be brave enough to change direction, change career, change how and where we live, change our habits, take charge of our health.

Sometimes when we are forced to look at things differently, uncomfortably, and we think we if we could go back we would, and we think we would be happy there, but there is no back button, there is only the pause and forward buttons. It is here in those moments and times when we find our brave, and we find that going back is truly not where we would be happy, sometimes it just takes a lot for us to find it for it is scary. So hats off to all the people I know who are currently feeling unsettled, but are working hard towards a new life a new way and finding their brave.

And for people with dementia who often long for the days before our dementia, but we can’t go back, only forward, we have to find our brave, face all of those things one would prefer to never face, but I have never met a group of people who have exemplified finding their brave better than those living with Dementia, with little to no resources to help them find their way from diagnosis onward, they find a way to bravely walk with their illness. To forge new lives, new ways to do things, new joy, finding their brave, each and every day in each and every step.

I am working on finding my brave, finding my way after too many life changes over that last year. I also believe that organizations will all have to find their brave as well, the world has and is changing, so doing things the same way will no longer work, so the ones that are brave enough to acknowledge that things must be done differently if they want to be relevant and effective in the coming years, change must be embraced, sought out even. Thinking out side the box, colouring outside the lines, has become more important than ever. It concerns me somewhat that many will not adapt as they should, mostly do too ego’s being and the way and the love of power, the price will be felt mainly by those the organizations are deeming to want to help….. time will tell, and that time is being thrust upon all of us, like it or not.

So no matter where you are and what you are doing I hope you too can take the time to find your brave, follow your gut, listen to your heart, your life may become unexpectedly joyful in the most unexpected ways.

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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

Weekend Wrap Up


A welcomed reprieve from the relentless heat, yes many love it, but for me and my dementia it is not a good fit, so yesterday and today we were a good ten degrees cooler, heat comes back tomorrow. But how how lovely, yesterday I felt like I had been given a get out of jail card, even my little dog ventured on an early morning walk, after which with her settled back in at home I ventured out walking, strolling, just enjoying the breeze, the lovely air, the freedom. At home all the doors and windows open, the air flowing, no air conditioning, no fans on until bedtime because year round a fan is on at night. It truly was lovely, my music on, I cleaned, danced and then I decided it was time, to take this grief yoga program: the link is below. I am sharing the link because this program you can do at home in your own time, it’s such a great yoga program, it’s free, but most importantly, it’s great for people dealing with any type of grief. Knowing full well that people with dementia have to deal with grieving the loss of self, loss of abilities, loss of relationships and many other losses, I felt it would be great to share. So find an hour a quiet corner to sit or stand. The program is great in its simplicity, it surprised me what it pulled out of me, at one time, while working along with the instructor I realized tears were flowing freely down my face. By the end of it I was spent, yet somehow knew it was in a good way.

Today, I have had a much more peaceful day, I was going to jump in the car and take off for the day, but Pheobe after the morning walk very quietly nested herself in a way that I knew she needed to just be home resting with me nearby, some days are that way now. So I put my Lauren Diagle music on and danced, and allowed myself to get lost in it, let my mind go, finally feeling like the first step towards some healing was happening.

Oddly enough as the day went on, things started to show up tweets about grieving and dementia, emails, about how I needed to be ok with just being at this time. Funny little things and signs, that come to you if you are open to them. All my mediations and yoga’s and taking time to feel my emotions, be in touch with my feelings is and has been good for me, not easy, but necessary.

Perhaps it’s what all those diagnosed should be given at time of diagnosis, the resources and help to learn how to move through this accumulation of grief. My grief I discovered was about the loss of my sister, but also other losses as well as the losses associated with my dementia. The grief yoga program will be one I will be continuing to use for a long time.

Sometimes, during these moments when I wonder where I went, But my life is so vastly different, I don’t know anyone who has not have their life turned upside with a diagnosis, but most will also tell you life in many ways is richer, more meaningful, it doesn’t make the loss of identity, the loss of a life we had is not difficult, and at times trying to navigate the never ending changes and challenges, it can and is difficult. We often hear about and read about how hard it is on others to watch us disappear or fade slowly away, well try watching from the inside. The mental and emotional roller coaster is beyond what most can comprehend, let alone understand, another area where this is no help or resources, we help each other, that’s why peer to peer support is so important. There is no help, there is lots of resources to help care partners and family navigate it but none for the actual person living it.

I felt this saying speaks not only if we are grieving the loss of a loved one but for many with dementia it’s what we often are faced with and feeling. We spend time searching for ourselves, for those pieces of ourselves that have slipped away. We never know when we open our eyes each day, how much of ourselves will remain, it can be overwhelming, daunting. sometimes we just don’t think about it, we just live in the moment, in the day. But sometimes we can’t escape it, the longing, the aching, for who and what we were, eventually many of us move into a place where we accept what is, look out the richness our illness has actually provided us, we find peace in what is, we don’t worry about what will be instead want to find ways to make the most of each precious day, to live in joy.

Having the resources to help people through those difficult years after diagnosis and having the resources as and when we need them as we move along the journey would go a long way to give us a better quality of life which in turn would equate to a better outcome for and on care partners.


I hope many of you give yourself the time to check out the grief-dancer yoga below


https://www.pauldennistontraining.com/grief-dancer

May we all find our way to a joyful and peaceful week a head

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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

In A Funk

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Yup this is me today, in a funk, I woke this morning with questions going through my head, what am I waiting for? time is running out? What is stopping me from living where I want ? Doing what I want? I why do I always feel like I have to stay put? My head and my heart are in conflict. I am upended, ungrounded, although if I am totally honest I have not been grounded since my husband passed away in 2005, thats a long time to be ungrounded, or semi grounded, life happened, other things required my time and attention.

Suddenly with my dementia symptoms kicking up, with the loss of my sister, it’s like my system wants me to finally just do what is good for my soul. There is the piece of me that wants to be logical, just wait…but then wait…wait for what….no cure, no one coming to rescue me or look after me. Sometimes I worry that if I do what I want to do, then it will appear because of my dementia that I am making bad choices, so instead I sit here not making any…in other words, existing but not really living. I am not sad, well yes sad at the recent loss of my sister, but overall not sad, not unhappy, just don’t feel like I am really alive, nothing is appealing or exciting….except the one continuous thought…I need to live near the ocean. Whats stopping me? Fear, fear of what? Why? I have never let fear or anything else stop me in the past, is it because I am so careful maybe to careful because of my dementia? I think that plays a bigger role than I thought. Maybe the trying to figure out all the pieces required to make a move like that? In the past I could manage those things without a thought, but I no longer can so I know there would have to be a lot of planning. Do I go for six months and to a trial first? I have many things floating around. but one thing I do know is that I have to do something or my dementia will take over just sitting here, with nothing or no one to help me stay stimulated about being on planet earth. No sure if this will get published this is one of those blogs that feel almost too honest, likely more than most want to hear, or maybe even admit to themselves, guess when I get to the end I will now.

Other things that keep going through my head, it feels like meeting after meeting lately, the dementia world, the advocacy work, the landscape is changing, It’s almost like people with dementia are getting tired of talking about their dementia and that everyone else is tired of hearing about it, all the while little to no actionable change has happened. How did we get here? Where do we go from here, to ensure real difference is made for the lives of people living with Dementia, do we need a whole different approach? How do we let people living with no that they still have value and much to contribute when the world around them tells them and shows them something opposite? Everything we try to do comes down to $$$, when will life be about more than money? When will we finally realize there is no price tag on a human life?

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I am doing brain training exercises, maybe too many of them, every day, because I don’t like that my spelling and language skills are failing me so much., I have an exercise routine, I do and have learnt new mediation routines, as well as dance routine, making healthy healthy meals for myself, mostly planted based. Once the heat is over, I will be able to maybe ride my bike and do more walking. I miss being able to explore, it brought me great joy and much peace and contentment. It was something that happened often in the week.

Oh well, I suppose if I can find my brave again, when the lion inside decides to roar, then it will all be what its meant to be, changes will happen, for today, I am safe, I am still managing on my own, which I suspect I will till the end, because I am willing to fight so hard for it. So today I will give myself credit for fighting the good fight, and realize I don’t have to answer all the questions today, but that I can build the plan, and change it as often as needed.

This is my mid week rambling …. take care of you, in whatever fashion and whatever degree you need to.

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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

As The Candle Dims

This is best way I could think of to describe things at the moment, like my candle is dimming, from within. It feels as though I am fading away. It’s that horrible time when you know and feel and understand changes happening within you and you are powerless to do anything about it. Some many things so noticeable to me, difficulty ( more recently increased difficulty), in social engagement abilities, being isolated for so long, in part due to the pandemic and other health issues that create situations where you can’t always take part as you would like too, partly due to the very nature of dementia itself. More challenges with language, speaking, spelling, recalling, all more of a challenge. And yes most of us have learnt to laugh at ourselves over many of these things a lot of the time, but make no mistake it is frightening, it is sad, to see and feel yourself slipping away, from who you were. So although we may have taught ourselves to show a brave face and put on a smile, don’t think for one minute this battle is not taking a toll on us not only cognitively but mentally and emotionally as well as physically. It’s a lot to accept, it is so much to try to always be re inventing how to do things, how to try to hang on to whatever pieces of yourself you can. The navigating and trying not to get sucked under by it and drown it is so damned exhausting. My candle feels very dim at the moment, I am hoping if my health stabilizes then maybe a new normal will be found, but at this point and time it almost feels like I am free falling, and there is no safety net.

So given all this and my brain feeling like its on fire, I decided no matter what I had to try to get myself into nature, I’ve been indoors because of the heat, it was cooler this am so I decided just go, I have always been so adventurous, never feared or worried about going out and about, but this morning, the fear crept in, the doubt in my own abilities, I had to fight through that to get myself out the door, I drove out to a campsite out in the country where friends are staying and stopped in for a 1/2 hour visit, they would of liked me to stay longer, but I couldn’t manage it, to many things going on, to many people popping in and out, in days gone by I would have spent the day, maybe longer, I would have enjoyed meeting people and chatting, today it was beyond what I or my brain could manage… I leave feeling very sad, that another step or progression is taking place. I drive down the country road, I stop by a little creek, I cry, I talk to my dog, I find myself thinking about the song Candle in the Wind by Elton John, not sure why, but there it was, and it made me realize it is because I feel like my candle is burning out. Its dimmned a lot in this last year. Bright, Bubbly, Adventurous Gypsy Spirited woman has been replaced, with unsure, unsteady, to the point that I never worried about going places on my own before but I do somehow know. However, while I was sitting there talking to my dog, amidst our tears, I am sure she cries with me much of the time, that I could not and would not let the monster within steal that core piece of me without a fight.

So I spend half the day driving, stopping, exploring. I think about how I need to get back to taking pictures, too looking for and collecting rocks, finding and enjoying creeks, rivers, streams, any thing water, I am very clearly in those moments out seeing very clearly all that is slipping.

I stopped and enquired a few places that I have thought I would always like to check out more thoroughly and gathered information, normally I would never do that more just go and do and figure it out as you go kinda gal, but this is me fighting hard to find new ways to maintain those pieces of me I so desperately want to hang on to for as long as I can.

So I have now decided that I must once a week at least make myself go and do some of those things, I have to find my “brave”again, find my spirit again. if my brain is robbing it from a certain area of my brain I have to find and make new pathways for it to become part of the now. Trying to keep the candle going. In this last week I have started new brain training programs, to try to relearn words and make them familiar once again, repetitive but necessary until it sticks. I have started new exercise programs and a new dance program, this fight is a fight any of us with Dementia never wanted, but boy do you learn from having it, about ourselves, our resilience, and our strong will to continue to have a quality of life, we learn, we challenge ourselves in ways and on levels few can understand. The temperatures were lovely and much cooler where I was, coming back home the temperature climbed rapidly the closer to home I got, so once again tucked in from heat, emotionally exhausted yet again, , I am not sure that this stage of dementia although many see it as you seem pretty good, or you are doing well, have any understanding of what its like to be aware of all the changes and not be able to manage it in the ways you want, but I was sorta proud of myself for navigating the realizations as I have, the day as I have, for not giving in and giving up. In closing I will share pictures of the day, that I stopped to get at different places and areas. It turned out to be a lovely drive, the cows were the crown on the day, because I love cows, and the cows today also brought something to light regarding changes in my dementia, so I was meant to be there, meant to cross paths with them.