Category: Stress

Its been a rather peaceful and quiet week, somehow I thought it was set up to be busy with projects and meetings, some I made it too others forgotten or I was on the wrong day, or wrong time, but I busied myself organizing cupboards and drawers, lost in my own little world and it was a happy place to be. I even managed a couple of visits with a couple friends I haven’t seen for quite a spell, of course it was at their thinking to make it happen as I loose all track of time days weeks months. . I had a chat via messenger with another friend last night who also lives with dementia and she wondered how I was, re changes etc with my dementia. I said at one time I would work really really hard to try to navigate with as little of the challenges being visible to others, it was exhausting, I said I no longer do, if I mess up my words, my thoughts, make mistakes, forget or whatever, I just don’t worry about it, it is what it is. Its too exhausting to try to fit into a world that everyone thinks is normal. My days are spent doing things that bring me joy, that make me happy, yes something as simple as organizing some cupboards can bring joy. Pictures below.

The world of advocacy seems to be shifting and changing, the projects I am involved in are important, there is many great ways to try and make an impact. Sometimes even in advocacy the seemingly smallest and simplest work is and can be the most impactful, and leave you feeling like you are making a difference in ways that really matter. I have been blessed to have had the opportunities to make a difference both globally and nationally, and more recently much more at the more local level. Even though I had to change things due to my extreme health conditions last year, this year I am happy doing what I am doing and not over taxing my system.

I guess we are always learning and growing despite health challenges, despite dementia, we still have the capacity to learn, and I am definitely learning. And I may not be doing the things I once did, or in the ways I once did, but no matter if its advocating, or organizing if I can feel at peace then I am doing exactly what I should be in that moment. As long as I am not putting myself in harms way , and actually even if I am, I can live at risk, isn’t life a risk for each of us each and everyday anyways. We have no guarantees in life, whether we have dementia or not. I am grateful that my dementia got me off of the hamster wheel most of the world lives on thinking they have to be busy all the time, don’t stop long enough to hear yourself think, don’t spend anytime alone. I understand myself in ways I never would or could have if I was still running the marathon on the hamster wheel.

There was a time I kept myself so busy, go,go, go, and even when I convinced myself I wasn’t that “I was taking a vacation,” it was busy, no time to hear my own thoughts. Dementia changed that and after the first difficult few years trying to figure out what and how and who I was know, a difficult and challenging time, devastating in many ways. I don’t believe it was until actually the last couple of years that I started to see, recognize and acknowledge many things that the hamster wheel had allowed to always be pushed to the background. Unknowingly doing damage to my health. Traumas, losses, heartache, sadness, unresolved grief, Always thinking I was happy, but now understanding there is a vast difference to thinking we are happy and actually being happy.

Its that deep seated happiness and peacefulness I am talking about, when you don’t need to keep yourself so busy that you can’t hear what your body and soul are telling you. I love the peacefulness, the quiet of my mind, body and soul. I love that I took all those deep buried things out and examined them , accepted they are part of who I am, looked at the good, bad and ugly, and could then see the things that can and do still bring so much joy to my days, from the crows, which I love to talk to and listen too, to watching the seeds sprout offering hope for another season. I have my dementia to thank for that, for kicking me off the hamster wheel, to bring me to this place.

I know it is only the policy makers, the people who decide how and what care can and should look like that can disrupt that, so my advocacy must continue, because I cant stand by and allow anyone or thing to disrupt this peaceful place within me.

Yesterday, I messaged a friend, I hadn’t had a good chat with him for quite a while, he said yes lets do a video coffee chat. He was going to message as soon as he was ready, I was really excited to catch up with him. But then, instead of just sitting and waiting, I got distracted, turned on my music started dancing, then started to tear my living space apart to change it around, which lead to deep cleaning while dancing and singing my through it all. Seven hours passed, it was blissful, I never sat for seven hours, just swaying to the music, cleaning all the while. I then realized I had yet to ear anything so had a little snack, three hours later I looked at my phone as i was getting ready for bed, there was the message from the morning from my friend saying he was ready for our phone chat. I messaged my apologies right away, especially since I had entiated the chat. He understood, but its just shows how I no longer have a a great deal of being able to stay focused. I laughed at myself, nothing else to do, we will try this week again.

Then this morning, oh what a day, I got up got ready for the day, there on the counter was the peanut butter, that damned peanut butter from the night before, I had wanted to have a peanut butter sandwich for supper, the problem with peanut butter, its all natural, the oil comes to the top, trying to get it stirred was ridiculous, impossible.

So this morning I decided I would but all the peanut butter through my blending machine, somewhere in the i decided I would turn it into cookies because, then the peanut butter would no longer create stress, a simple three ingredient recipe, got all the ingredients out while the peanut bitter was happily spinning around. Have you ever tried to get peanut back out of a blender, oh my gosh that damned peanut butter was to much to bear. I thought just walk away, leave it for now. So I thought I need to go to the store, it was something I really needed, but had been putting off, so off i go, and then for 40 minutes sit in the car trying to recall what it was, finally though well I’m here I’ll look for a frying pan, no idea why that came to me, but while looking for a frying pan, I realized I was needing feet for my chairs, by the time I got home, I was late for a forgotten meeting, tuned in for part of it leaving saying I had another to attend, except I had all the times wrong the other one was just ending, oops more blunders.

So I eventually made it to my last meeting for the day, then I turned up the music to dance, and as I danced there it was the damned peanut butter, so I thought thats it your done, and I danced my way through making cookies, my friend called said what are you doing I said dancing and making cookies, she said omg, she said you don’t even eat cookies, I said I know but the peanut butter had to go, just so happens she loves peanut butter cookies, she will come Wednesday, and you can rest assured she will go home with peanut butter cookies.
We laughed about it, She said whats wrong with you, I said I have no idea, I have no idea why Im doing anything Im doing, we laughed some more, she said I have no idea either, I responded maybe its my dementia, we laughed some more, laughter is truly the best medicine.

Years ago i remember taking courses about ” don’t sweat the small stuff”, well dementia teaches you in quick order those lessons so when nothing works turn up the music and dance.

“I’m not done yet” has been my motto since the start of this dementia journey, it still applies, theres still a lot of dancing left in me.

Today, I felt frustrated with myself, angry at myself, as if somehow this new step down is something I could or can control. A lot of changes happening and although I am from most people’s view still doing well, I know within myself when changes are happening. I am not sure if that is a blessing or a curse, sometimes it feels like its both at the same time.

If I am still able to recognize changes then I am still only somewhere in an early to middle stage, heading more to the middle stage, if we are measuring by the scales others use to judge where we are in the whole process of our dementia. I hate using scales of any kind for dementia because it wanes from day to day, but for the sake of trying and unable to find better descriptors we will stick with that.

So yesterday, my heart started misbehaving again, I couldn’t figure out why, then last night I realized I had not taken all my heart meds in the morning and I had not put my nitrogen patch on…big oops… oh well at least I know why, I guess my heart was trying to tell me it needed its juice, so more reminders maybe, or does it even matter?

I also increasingly have trouble transferring thought to action, as in I think about doing something but don’t have the ability to actually take the steps to do it.

My eating habits have taken a huge turn as well, I have to set reminders so I remember to eat at least something once a day. I don’t ever feel hungry, I do think about food at times, but to put the thought of eating something into the action of eating again challenges me. Its mostly finger type foods now, which is fine, works for me, I still am eating something, I am not sure if any of it will make changes in my body structure, or weight, that really doesn’t matter either, the only thing that matters is that I eat something, because it is something that my brain is managing not me.

I am also self isolating more, because it’s where I am happiest these days, not that I don’t want to see someone or visit with people I do, but when and how those things happen are more important than ever. It is also something that I am ok with, actually feeling quite peaceful about, to much noise and confusion is just not worth what it does to my brain and then I suffer the consequences. So it’s important that others are able to meet those with dementia where and how it works for them so they can truly enjoy the time they spend, instead of trying to entice them into doing things that really are of no benefit any longer.

The other thing is I used to be a very very decisive person, make a decision and act on it, not procrastinating for this girl, never one to over analyze things, whatever it was, look at it and act on it and then it would be done. I am now sitting unable to decide anything about anything. Over analyzing things and then just doing nothing about anything. Simple things to more complex things, go for a walk, don’t go for a walk, hours can pass and I will have done nothing regarding the walk, I can also not, no matter how many times I look at my lovely dementia clock stay orientated to the day. Yesterday, I thought it was Saturday, it was Friday, then I was operating like it was Sunday and I got up this morning thinking it was Monday, its Saturday.

Regardless of all these changes I notice more and more, others likely would not unless they spend an extended amount of time with me. It does not matter if they do or they don’t, as I am happy as I am with all my blunders and fumbles each day.

None of these are things that are much more than a nuisance, but it certainly does and can cause moments of anger at self and frustration with self. Forgiveness of self is imperative and the ability to laugh at one self is vital. Humour about it all is a saving grace for many with Dementia, I think. Many of us with dementia laugh together over all our fumbles and we wouldn’t like to be laughed at, but most certainly to be laughed with is acceptable. It helps us navigate what would and could otherwise become so troubling one would end up depressed.

Its interesting, that the age of technology and social media has for so long been touted as such great tools, the way of the future, will make things so much better, easier, on and on it went. But lately that view is seemingly shifting. Its created a society where social interaction and communication has been gone from face to face discussions to texts and messenger messages. Children don’t entertain themselves, they are entertained, movies play in the car or they have electronic games. It also has meant there is no real down time, and people use devices as a means to distract themselves from alot of things. In the realm of dementia there is much talk and work about how wonderful technology is, I had an abstract accepted for presentation on Technology the good and bad, to present at the Alzheimers Disease International Conference, in London England, but I have withdrawn it, and may present it at a later date, or who knows maybe I will share it here. Its not that I disagree, I think technology has many great uses, but I also believe we must be careful that we don’t forgo human interaction and contact, its a slippery slop as to how when and where technology and devices should be used.

There are some uses that are great whether you live with dementia or not, built in gps, so if we are in trouble we can be found, automatic 911 calling if it detects a fall etc, navigation systems. These are all tools which can be great assets for people. The pandemic showed us how much we can do by working from home, freeing up more time for ourselves and family, zoom, video calls, FaceTime, all allowed people to stay connected during the pandemic, but we can and should not allow it to become the norm so we provide less actual social engagement with and for people, and slippery slopes abound.

Another interesting thing that came to my attention the other day is that they are now finding how damaging social media is for and on men’s self image. I am not really surprised by that for years and years, actually even when I was young, we, as in women and girls were always subjected to media’s pushing how we should look, dress do our hair, our self image constantly compared to what we were being shown and sold. It is no different now just more prominent, since the onslaught of social media and technology bombarding people. So now they are seeing it actually effecting men, creating mental health issues for men, so although I hate to see this happening to anyone, its interesting that there is such concern because of the way it is impacting the male population. Women have been saying it for generations. So another of the slippery slopes of the use of technology and social media.

I think there is many people who are limiting their time and use of all of their devices, this includes myself. My blog is done on WordPress and links to the social media sites, this allows me to write my blogs and not get distracted by all the social media stuff, allowing me to still get it out to those who enjoy it. Yes I still use social media I am just acutely aware and monitor how much, I have shut the data off on my phone, I often leave it at home and often shut it off completely now. I am also aware of how important it is for me at other times, and how much technology continues to help me live alone. But being isolated for over two years during a pandemic, and now noticing as we are trying to come out of it, how truly isolated I have been, and how now I struggle with social interaction. Part of it is expected in the progression of dementia, but a large part due to the isolation created by the pandemic and now in that isolation is where I am most comfortable, it has become easier and easier to just be content in my aloneness. I find it exhausting trying to meet expectations, as there truly are very few people who fully understand the constant work it takes to manage a day. So it is now where I struggle a great deal. I do not feel safe in the mainstream of society anymore so in trying to step out into the world it is and will be in the smallest of steps. There has been a lot of changes for myself and many others so it will be different for each of us although isolation was and may still be needed for the foreseeable future, we have to try to ensure we don’t allow the ease of using technology to stay connected, to create a world where we are becoming less and less to be comfortable among others, and we loss skills like being able to sense when something is wrong, to read peoples faces, pick up on emotional signals, knowing and understanding body language, all those things are at risk, they are all vital skills to have, we can only learn and nurture and understand them by being part of and interacting with society.

I hope we all take the time to really look at the bigger and deeper issues around all of the technology, and work to find a way to balance it so we don’t just become a humanized robot ourselves.

Chaotic, disjointed, and out of place, is how much of the world and those of us living in it feel at the moment, at least from where I sit. Trying to find our way out of pandemic, yet at the same time waiting to see what it’s going to do next. Wanting to rejoin the rest of society to some capacity, but not totally comfortable too, it doesn’t feel like a very comfortable place right now, and then theres the underlying stress of a war that rages and a crazy man, not sure what or when he throw more at us all and knowing the longer he is allowed to continue on this path, the bigger impact we will all face.

It’s hard to watch what’s happening, doing small things to help support Ukraine, it doesn’t feel like enough. Even though we all must get about our days, everyone I talk to is tired, most have now explanation for why, except if we truly acknowledge that what we have been through and what we are currently facing and that it creates a subconscious stress in all of us, then we can understand the tiredness. It’s like being thrown into a blender that just keeps spinning around and around and you just want someone to turn it off, the problem with it all is that it is out of our control. That what makes us tired, the constant chaos.

I am going to be 63 next month, and after being raised by a mother on her own with four young children, the lessons she instilled on us are serving me in ways I never thought I would live to see the need for, but here we are, and I have used those lessons to get through some very challenging hurdles in my life, like the death of my husband, I was ill prepared to be a widow at 47, then dementia at 56, but those lessons she taught me served me, helped me survive them, to move through it and come out of it all different but still standing and know the lessons have given me the foresight to not be foolish enough to think that we won’t ever have to worry about food or basic necessities, so I have taken the lessons and prepared myself for those hard days that are staring at us. If they don’t come to fruition it will be worth celebrating, but at least being as prepared as I can allows me to know I have done my best to take care of myself and none of it will be a waste. I hope everyone is doing what they can to ensure they will get through the coming times as well. I pray for peace each day, I pray love carries us through, I hope kindness prevails.

In all of this uncertainty it feels like there is things shifting and changing in other ways as well. The world of advocacy feels like it is changing, maybe it’s not, maybe it’s me that is changing but it most certainly feels like it is. Like there is so many people trying to get a piece of the business of Dementia, and that is how it feels, like it is the “business”, of dementia that has happened, like we are losing the human aspect of dementia to the business of dementia. It has become about how each organization can get a piece of the pie, better known as funds, funds that should actually be being used to help those living with Dementia, but the bulk goes to the running of the business, and it feels like there is getting to be more and more organizations popping up, I for a long time said we needed all the organizations to sit at the same table, work out who was going to take on which piece and aspect to the betterment of all with Dementia and focus on those aspects, instead, more and more start up, everyone competing for the same $$, the biggest losers in all of this is the actual people living with Dementia.

It’s causing many of us who advocate rethink how and when and where we are advocating, and at times wondering if there is any point in continuing with it at all. The last couple years have also made many of us realize we must also put as much time into our everyday life and living as we do our advocacy work. We have to remember to live life, our true and authentic life, if we truly want to advocate and show how we are able to still have a quality of life.

And for now we have to be ok, with all the baby steps as we step into these ever changing times. Dementia teaches us to change and adapt almost daily, use it to help you as you forge into these unknown times. Just know that what ever you do is enough.

I am forgoing presenting in person, at the ADI Conference in June, in London England, and although two of my abstracts have been chosen, something that I am very proud of. I am going to do one via prerecording, the other I am going to withdraw for another time, it is enough. It takes a lot of stress off and that means its enough. I am at peace with my decision, although I would love the opportunity to see so many and meet others, this does not feel like the right time. I feel good that I am still presenting, and I can feel good that I have done what is best for me at this time. I can hope that another time will see me do in person again.

Just let love and kindness help us all build bridges to see better tomorrows.

So this swirls around comes and goes, sometimes sparked by and in conversations, other times just by taking part in things and listening, and watching and maybe more than is realized at times and then when sitting in the quiet I think about these things. My views won’t align with everyones and that is ok, actually often my views don’t align with others. Sometimes they are in perfect alignment, and neither is right or wrong.

So when I think about Dementia/Alzheimer’s organizations and groups in context with controlling the narrative, it makes sense in the simplified form that they want to control the narrative for that is how and what they use to meet the organizations goals and agenda. They need to have goals and agenda’s, and the people who are in paid positions should be working whole heartedly to help meet those goals and agenda’s. Those goals and agendas often come on the shirt tails of people living with dementia. Working with people with dementia is great and needed, only those living with the illness have the inside track on the illness and all that it entails.

We, the people living with dementia must just always be careful that we do not allow our narrative to be controlled, advocacy means we are striving to help make changes, but if we have to follow someone else’s narrative instead of our own, then we are no longer actually advocating we are pushing some else’s agenda.

We can be loyal to an organization and still true to advocating in ways that align with who we are, as long as we are not pushed to align only with this organization or that organization or this one’s agenda or that ones agenda. As an advocate, we should be able to work with many organizations while staying true to self, we should be able to work with many groups and organizations so that the voices of those with dementia are heard not controlled.

Working with and in ways with as many as we feel we can manage on a day to day basis, this also holds true for working with research groups, we all have varied interest, and we should all be encouraged and encourage each other to participate in research in ways that help us to feel like we are valued, that we have purpose that we are making a difference.

We also need to be encouraged to look after ourselves first and foremost, advocacy can and often does take over, because we are passionate about wanting to make a difference. Because it does give us purpose, sometimes, we forget about the other aspect of who we are, we are still people, with outside interests, needs and wants.

It sometimes becomes easy to put all those things on the back burner, I wonder if that is partially because we go through such devastation and lose of self when we are diagnosed so when we and if we find ourselves in a place where we feel valued and that we have purpose. Which is something we all need, whether we have dementia or not. This can and often leads to a situation where we feel we need to do more and more, we put this pressure on ourselves and it is then that we forget the other parts and pieces of who and what we are. We are not our illness, but sometimes we become so caught up in advocating about it, that we end up so entrenched, it’s as though it’s all we are, so we become what we advocate we are not.

There are many fine lines to walk, sometimes we cross lines without ever meaning too, this can happen for those without dementia as well. But it is important that when we recognize that we need to pull back, step back, change direction, change focus, then we need to give ourselves permission to do so and hopefully all those groups and organizations will encourage that, and be happy to have us doing whatever we feel is manageable and allowing that to ebb and flow just like our dementia.

We need to be loyal to the point of speaking in a good manner about the groups and organizations we work with, that also doesn’t mean we can’t speak about about things we think are wrong. Both are important. Finding the balance in it all is not always easy.

For me personally I am working with many, I am deeply fond of some, but hopefully have good working relationships with them all. I am not always popular for I do stick to being true to myself, and so if I am not or don’t fall into alignment then I won’t be popular and thats ok, its more important that I remain true to who I am. I truly appreciate the groups and organizations that allow me to be me, Christine, the person first and foremost and then Christine the Advocate, because, being an advocate is just a small part of who and what I am.

I am grateful for the many different ways different groups and organizations have enriched my life, I hope they know that. I hope they know that whatever and whenever I agree to work with them on various things in various ways, that I do so with a good intention, giving the best I have of myself while doing so. I hope that they can and will continue to honour me when I have to pull back, or forgo certain things.

I have to take care of myself, my mental and emotional well being along with my physical well being, my heart and soul. So that I can continue to advocate for a long time.

I also hope that we allow others the grace to do the same. Advocacy is not about being a star, or recognition or being the best or better than anyone else. Advocacy is about all working to the greater good, for the good of many. Knowing and believing we have done our very best to that end should always be enough.

I have been privileged and blessed to have met many great people, made many friendships, since my diagnosis and through all my advocacy work, through all the many groups and organizations that have allowed me to be part of their group. Every time I give a talk, or do a presentation, I meet someone who reaches out, who in hearing their story reminds me of why I continue to do what I do, that is always enough.

I hope that if you advocate you remember to look after yourself, and that it’s ok to do that, I hope if you advocate, you remember why you are doing it. I hope one day things will be so good no one will have to advocate but until then I wish you all love and happiness and hope that whatever you do you do it with a large dose of kindness.

Today spring has arrived, a time of renewal, the freshing up after the earths winter sleep. Its also time for us to refresh our lives, our dreams and goals. This seems like a daunting task as we start to slowly come out of the pandemic, and war is raging. There is so much anger everywhere, fear grips many. We have lived life for a few generations now for the most part without ever having to endure truly hard times, or go without, or do without, we have been living in a time of the throw away society, and just go get whatever you want whenever you want society, the wine and dine society, the grab and go society, grab breakfast and coffee in the way to work, don’t pack your lunch, just go grab lunch out, too tired to cook, pick something up or better yet have it delivered. Then we ended up with disasters, creating supply issues, we often look to blame someone, usually governments at all levels, but the fact is we are all collectively responsible, we have contributed to global warming, we have polluted our waterways and oceans, with all our throwaways. We quit gardening, we quit a lot of things that helped make healthy families, and communities. our young people have lost hope, mental health issues abound, addiction issues abound, we have failed as humans. We decided it was more important to have more, do more, it fractured families in unexpected ways because we believed and chose to believe that climbing the corporate ladder, bigger homes, fancier cars, measured our standing, instead of it being about our strength of family. The pandemic brought more people back to family, baking, canning, spending real time together, the coming time will likely increase that, as we see further supply shortages, increased prices for everything. So as we spring forward things will continue to change, it wont all be easy but perhaps the silver lining will be that it will bring us back to a more balanced way of being. I am not without a huge amount of hope going forward. I love this time of year a time of renewal, and I wish you all a joyful and peaceful spring.

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Sometimes, ok well often times, I forget things I have done, projects I have worked on etc. But I have discovered, instead of being upset by it, or stressed by it, to just now that maybe someday in some way, something will trigger a reminder. By just settling into the fact that I won’t remember much of what I do, created space for some unexpected surprises, when someone lets you know something you’ve worked on or contributed to is complete, its like such an amazing moment. First its like, you’re like really I did, then the fits of laughter, then its the anticipation to have a peak into it. It truly makes you almost giddy. This happened to me again last week when Gincy Heins,, messaged me, to tell me the book I contributed a piece for was going to be released the following day, and that my piece was the opening piece for the book. oh what a surprise, not only had I forgotten about the book being put together, I had no idea what I had written for the book. I have now read what I have contributed, I am really happy with what I had written, and the book is a lovely piece of work, with great collection of inspiring, heartwarming pieces. Gincy did a great job gathering and getting people to contribute. Below is a picture of the book cover, it is available on Amazon. I am truly grateful for the gift I received first by being asked to contribute and secondly with the wonderful surprise of its launch. Here is the cover:

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My latest project has been working on my new vision board, I like them for a few reasons, firstly the are fun to do, they are artistic in themselves, we learn about ourselves as we do them, I have created them over the years, I actually first learnt about them as a tool to help people going through difficulties. It helps them ” find themselves” in a sense, for someone on the outside there is much you can learn about a person in the vision boards. I will post pictures below although it is not complete yet. Its a fun project to do with young and old alike. Ive done them in the past where we have done evening get togethers where we all worked on ours and shared a lot of tears and laughter, and had many very deep meaningful conversations brought out by working them this way. This one I am working on presently is weeks in the making, its a positive outlet for my mind. I am doing all I can as I have been through the pandemic trying to ensure I do things to keep my mental health in check. Which whether we have dementia or not is so important, it should always be important but having been through the last two years of the pandemic and so much uncertainty surrounding us, on top of living alone, it is vital for me. Soon it will be warm enough for my bike to be out, I am looking forward to that as well.

Whever you are I hope this first day of spring allows you time to look forward with hope.

Here is my vision board:

I woke up today feeling as though lately I have been watching the world, watching my life from some other plane, disconnected from it somehow, yet connected. Yes that even sounds way out there to me, but it is exactly how it feels.

I know some wonder why I am not seemingly as active in some forms of advocacy, or at least the perception some have is that, when in fact I am still actively advocating just in different ways, sometimes from the back room instead of being front and centre. However, I have scaled back a tremendous amount, firstly because I spent the better part of 2021, barely being able to get out of bed, secondly, and the piece that is prevalent now is my inability to deal with time in real fashion, for example yesterday at 10 am I got my first reminder of a meeting at 11 am, I was getting ready for the meeting, the next thing it was almost 3 pm, no sense of how it got to be that and the realization that I again have a complete inability to understand or make sense of the how or why’s I have such lapses of time.

This is challenging me in ways I cannot even put into words, on some levels it is why I am only doing a certain amount and in large part working on projects that I can do, complete and be done. Keeping my calendar less full, instead of more, giving myself the grace to let this new piece of my dementia decide where its taking me. I don’t like to feel like I am letting others down, or not doing my part, and this element of my dementia is making me feel that way, and all I can do is hope that when I miss something, when I am not where I should be that people understand it is not intentional that it is something that somehow no matter how many alerts and reminders, I cannot control the process of my brain. So I hope forgiveness and understanding of an illness that can have one looking so wonderful on the outside, and cause one to judge and think one is doing things like missing meetings, appointments, are done purposely and without care. That most certainly is not my intention and most certainly not the intention of others I know who struggle as well.

I wish I could frame it all in an understandable way, but I can’t and as it feels with all things Dementia, I am just learning to adapt to this new change as well, adapting is key to life with Dementia. I am not unhappy in the changes actually I am finding myself in a very peaceful, happy place, content. I am so very grateful to those that have been able to stay in my life, despite, what for some must seem so totally surreal or unreal. I will continue to advocate in ways that I feel I can and as I can, but I also must give time and space for life, my life, whatever that life may look like today. I think it to is important for all advocates to remember, advocating is important it is something I hope many more will pick up the charge to do, but there is also the other side of dementia, there is life, life that is not dementia, there is family, friends, walking, biking, travelling, everyday life, we can abandon life in pursuit of our advocacy. Humour is also one of the most important things I hope we all remember to bring into our days.

We can do great harm, however unintentional it is when we forget to take part in our everyday life as well as our world of advocacy. Truthfully we can expect everyone to be as interested in our advocacy work or our Dementia, thats the reality, no everyone wants to hear about it, not everyone wants to be part of it, if everyone did then we wouldn’t have to advocate anymore.

I admittedly think that for many of us, yes I have been guilty of this getting so wrapped up in our advocacy and the world of it, which brings us so much richness, so many great friendships, such vast knowledge and understanding, the hope and new found purpose, that we can unintentionally leave out those standing closest to us. We forget to take part in life with them, and leave the work of advocacy behind for a while.

Most leave the work they do after 6 or 8 hours each day for but many in the advocacy arena it continues 24/7. Sharing the laughter and joys of normalcy to whatever degree we are able with those we care about is not only important for our overall well being, but for theirs as well, and we must remember that if we want them to stand by us through our journey, and we want them to join us where we are in that journey then we must join them in their journey of life as well.

These are my rambling and jumbled thoughts this morning, I hope we all do better, understanding and forgiving each other not matter what our plight in life is, life is hard, not just for those with Dementia but for all. Praying we all grant each other more grace, forgive our shortcomings ( of which I many), and remember to offer kindness everywhere we can.

This morning I was up early, knowing I, like millions of Canadians will be watching this morning as Ukraine President Zelensky address our Parliament. What Russia is doing with the invasion of Ukraine is beyond comprehension for the most part, no matter how hard we try we cannot fathom what the people of Ukraine are enduring. They are showing us all what resilience is, what being devoted to your, having pride in your country is.

It also does not fall from my mind that Canada borders Russia to our North, and how valuable our north is for all of us here in Canada.

But as I sit and wait for the address to happen, I can’t help but think about all the trauma the people and children of Ukraine have and are being subjected too. We recently discussed at one of our meetings, how trauma and dementia are connected, we discussed a book, “Emotional Inheritance” Author, Galit Atlas, PhD. Today I was thinking a lot about this Emotional Inheritance in relation to all the people of Ukraine. Will the trauma mean in years to come, more instance of Dementia, what can be done to help ensure that whatever can be done to help people with the mental health side of the trauma’s they are having thrust on them. And I wonder and think about how many of us with different types of Dementia can trace perhaps a connecting piece that is based in trauma.

I understand that there is so much more to think about at this time. But understanding how trauma impacts people with Dementia, may be a way to help those in late stages, understanding the traumas they have faced and that sometimes what is considered behaviour issues are actually that something triggered a memory of a traumatic event or time, it requires more understanding, not more medication, learning how to best manage those triggers. So yes there is deeper issues around this attack on Ukraine, but we need to remember even many of our people in care at the moment will be having triggers because of this war. Every care home, needs to ensure that discussion happens in a safe and caring environment, and just because people have dementia that they cannot and should not have this addressed and discussed.

Watch for those things which may indicate, that it is effecting them, mood changes, eating habits different, sleep patterns, and yes behaviour patterns, more pacing, more fidgeting, more anxiety. Shut the TV’s off that are constantly running in the care facility’s, yes I know, I know, the workers want to know and keep an eye on whats going on, set up a room for their breaks, where they can see the latest news, and a quiet room for those who cannot take it in. But do not allow it to flood the rooms and hallways of residents. Set a time to have staff to watch with them have conversations, some will want to some will not, this is a good time to have extra activities for them. Many in care have lived through wars and depressions, they will feel the weight of it, even if they can’t express it. So please please pay attention.

For me the Emotional Inheritance, comes with memories of my mother, grandmother and Uncle, who all lived and endured world war 11, in Germany. Hearing my mother remind us that we should never think that it can’t happen here, because it can, listening to her talk about the fire balls that rolled through the house because of bombs, the hunger, and so much more. So I am very much aware of how rich our country is in natural resources, how Russia is on our doorstep and that we all need to be aware that what happens in Ukraine can and will impact us for a great time, and we should not be so arrogant to think that war can not befall on us as well. We must give extra consideration to our elders, who may be having many emotional feelings over this invasion. So whether they are in a care facility or not, whether they have dementia or not, let’s all be mindful.

We should not be frozen in fear, but we should be aware, we should think about how we can help within our own country. I have watched in the last number of months how fractioned our country has become. It saddens me, we have been and are one of the most free countries in the world, we have so much to be grateful for. I pray we can find our way out of all that is dividing us and we look to the people of Ukraine for inspiration.

I hope as we go about our day, we look for ways to help unite us.

Heading off to bed last night to watch a little tv, I then spend the rest of the evening and late into the night on how to deal with my dilemma on how to deal with springing the clock forward. Back and forth, if I turn the clocks to soon, it will mess up my nightly routines, if I don’t change them until morning, I will spend half the day trying to orientate to the new time. I could not figure out how to navigate it all, it created too much stress, then in the midst of that I looked at an email that was telling me about something about March 24/25, I thought why on earth are they reminding me of stuff thats more than a month away. This morning I realize it is actually March already, more stress, I have a presentation to be ready for on April 12th, I thought I still had lots of time. Ugh time.

More stress trying to figure out if I should put myself through the stress of trying to figure out how to change my clocks, doing those types of chores for lack of being able to find the right word, is so stressful, frustrating, and causes anxiety, each one is different, so doing it in the evening not a good idea my brain does not function as well in evening, but leaving it till morning could mean starting my day adding stress to my brain, but perhaps because thats when my brain is sharpest I will have the best chance of success, and I do try to do things in ways that set me up for success. So no workable solution, so hours spent and in the end I did nothing but be stressed and angry that no one seems to give any thought to the unnecessary stress and strive that is placed on people with something that seems so unimportant. These are the seemingly small things that for someone with dementia or other cognitive issues face.

So this morning after a very long night, it is now 11:20 am, even though its actually only 10:20, I have a headache, likely from the stress of trying to navigate this time change. I have cleaned out all my dresser drawers, got a bag of things ready to take to the homeless shelter. I give them anything I feel I have too much of, even though too some I don’t have much anymore, I have enough, and to keep extra’s when others are in such need seems senseless at this stage, and giving feels good. “Less is more” has become very much an important piece of life for me, I don’t want to have clutter, I don’t like to have to much stuff around, it seems to clutter my mind somehow.

Also in the wee hours of the morning, with all my struggles to sleep last night, my brain somehow took me back to my last number of years working, I can’t put a number on it exactly, but last night it somehow came through that signs of what was coming, ( strokes, TIA’s then the Vascular Dementia Diagnosis), that there were very clear signs for a long time, but of course know one could have understood and I most certainly didn’t, for example as the years evolved, I started to have to spend my lunch and coffee breaks alone, in a quiet corner somewhere, I think it might have appeared I was anti social, or a snob or who knows what else, I always likened it to the fact that I needed the quiet to recharge, because I gave so much of myself to the people we were charged to care for.

Looking back I can see it was a clear sign of my dementia, that I still require a lot of quiet time, loud places and spaces are very difficult for me. My sometimes miss reading and miss understanding what others were saying or doing also a sign of the yet unknown monster of dementia that was looming. Not all things of course fall into that, there were many things and times that I was functioning well and fully understood, the problem is you don’t always and aren’t always clear enough to know when it has changed, and it can change daily.

Making some bad decisions, bad judgements that I may have not otherwise made, had the diagnosis already been made. They are what they are, if any of those judgements or misunderstandings hurt anyone, they were never meant to. Unfortunately, if you don’t and aren’t aware of whats really going on, and you can’t see it because of what your brain is doing, it makes it very difficult, because people around you can’t not take things personally, where if they understood, its your brain, you say things, you do things, in ways you don’t even now you are doing or saying, then if they had a good understanding that its an illness doing it, perhaps they would have an easier understanding and not take things personally.

Maybe thats why forgiveness is a big thing for me, offering people a little grace, because perhaps we don’t and can’t fully understand whats happening for them, because they may not actually either. Ahh Dementia, it is a strange beast, I truly have a love hate relationship with it.

I am in a jumbled state of mind today, thoughts coming and going, tired, its time to take myself for a walk and give my brain some fresh air and listen to the sounds of nature. I hope if you live somewhere that you have to navigate this time change that you give yourself a little grace and also all those around you.