Category: Advocates

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.

I have for a long time had issues with trying to get to an appointment and or meetings etc on time.

Something that pre- dementia I never did, I was always ready early arriving early, very exacting with my time and timing.

Over time since my diagnosis, that has given way to even with reminders they are not always enough. Dates, Days, times all get mixed up, reminders are forgotten sometimes as fast as they pop up.

But for a number of months now things have changed again, and I try to understand it, I try to make sense of it. Some times when I try to explain it to someone it feels as though I don’t make sense to myself so how can I possibly expect any one else to understand what I am talking about.

Yes, people will say yes time does seem to be going fast, or no time seems to be dragging on, but it’s not that it’s either for me, it just is. I wake up, get up, then the day is over, It might be 5 in the morning and then its three, 4 or 5 in the afternoon, I can’t understand how thats possible, I have yet to eat anything, sometimes I have yet to have a shower, because I think I have lots of time. When I look at the clock and see the time, I then look at my calendar, as if it may somehow help fill in the blank, it does in the sense that it shows me what I have done, but it all feels like a big void.

A vastness of nothing, I can’t seem to describe, it doesn’t make me unhappy that, thats whats happening, it doesn’t scare me or frighten me. I feel like I try to stare in this vastness of nothing and try to understand it, understand how one can get from there to there without something to frame it all in, but there is nothing. It’s not lost time, because evidently I am still here, I am still very much alive, but I have lost all connection to time, or to what we are supposed to know as time and time perception.

So I did some research and below is a couple of good papers, there are too many to list. I had no idea that there was such a connection to time perception and dementia and other illnesses. I also had no idea there was so many studies about it. Another fascinating aspect of our brain and all it gives and takes. It’s not one of the things we discuss a lot for some reason, maybe because like me we don’t even now how to begin to talk about it in a way that makes sense. And even as I write this I wonder if it will make sense to anyone.

It is another part of that living in the moment that is often talked about in relation to people who live with Dementia. It puts into a real literal sense.

I wonder if it was happening for longer than I realize put that its only since so many of my other health issues have quieted that I have actually been able to be aware of it. I am not sure, these days I am not sure about a lot of things. All that has happened to my system since January has made understanding any of it near impossible. So just being happy in it is about the best I can do. I am enjoying learning more about myself, my dementia, what it can be on any given day. That in itself sounds very strange that one could actually enjoy learning about something that is considered such a devastating diagnosis. I am fascinated by my own brain, how strange is that.

So time for me only matters in the sense that people set days and times for meetings and things and I somehow manage to attend most, with many reminders, there is little else where it actually matters. So I go from Monday to Monday knowing that whatever happened in the vastness of in between, I can only hope that I have been kind, and found joy in all that vastness.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8616021/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830363/

Yesterday was a lovely Monday, and you wonder how can that be possible with all the strive in the world right now. No, I don’t live in a false sense of reality, the complete opposite actually, I stay informed, then I get on with my day, staying grounded, leaving room and time each day to find joy, to listen to the sounds of nature, breathe, just breathe, and every day I dance. After getting the current information on what is happening, I put my music on and I dance, and I dance the day away, while I am doing things around the house. Its good exercise, it sends feel good endorphins through my body. I attended two meetings which were both great and up-lifting.

I had the most lovely visit with my doctor. Yes it was what one would classify as a Doctors Appointment, but I call it a visit, because it felt more like a visit, we had a lovely chat, he told me that one of his patients had told him they were at a presentation I recently did in Lake Country and how wonderful they thought it was and how helpful it was for them. Knowing that trying to make a difference and hearing that you actually are is sometimes all the inspiration you need to get through the rough patches.

We caught up on his family and life, and mine and then talked about my health, as I have had the few attacks of pain, I being afraid that all the good I have seen since my Moderna shot was maybe or had peaked and I was starting to see a return of the many issues and complications prior to , it was a frightening thought, but I have not had any more fatigue, the inflammation has not returned, my blood work is worth celebrating it is so good, still no brain fog, we laughed at that, dementia is still and will always be bubbling away, but for the moment I am having less challenges that in recent years, although so new challenges emerge. Its on going, it will always be ongoing, but I feel strong, I feel vibrant, I feel energized, like I have not in many many years, if ever. So whatever the Moderna Vaccine found in my immune system and changed, it is a gift beyond measure. The attacks of pain I have had over the last week or so we discovered during my visit with the Doctor, is muscle issues, and while talking to him, and him wanting me to start a daily magnesium regime, I remembered that I always took it, but somehow, when I had all this drastic changes, and was feeling so good, I had stopped so I in essence had created this situation to happen. So back on the Magnesium combined with Calcium. Because my appetite has decreased so much, I may not be getting enough Calcium so hopefully that will resolve the issue.

This morning I woke at 5 am, up watching daylight come, morning coffee, showered, and ready for the day by 7 a.m., getting ready for a 9 a.m. meeting, I am excited about it, its a project I am working on, more will come about that in time. My volunteer/and friend will arrive shortly, its wonderful how these new found friendships happen, I appreciate all her help and mostly enjoy the visits so much. So a busy morning, then I will go for a bike ride if it is warm enough, just a short little first ride of the season. I am so glad I am feeling well enough to do that.

It is International Women’s Day, I look to the women of Ukraine who are taking up arms, who are staying and fighting and helping their people in ways that most of us cannot imagine. Being separated from their children, husbands they are the women I want to celebrate today. They are the reason I must remember to be grateful, for I am in this moment, safe, warm place, why they fight fights we all hope never to have too. Women around the world have time and time again, shown their resolve, their strength, their resiliency. I am fortunate to have incredible women in my life, who have taught me, inspired me, and today I still have many women who are inspirational, and role models. I have worked alongs side many of them, I still work along side of so many of them. Most of us don’t have to look far to find women we admire. So to all the women out there take a moment to acknowledge your value, your importance, you matter, each and every day, not just on International Women’s Day, but each and every day. Treat yourself today and lets all think about all those women in Ukraine and other countries like Afghanistan and many other countries around the world, lets celebrate them for their bravery, for their determination lets keep them all in our thoughts and prayers but remember to celebrate you and all those women close to you today as you go through the day.

Happy Women’s Day to all the Women of the World.

I was sitting today thinking about our brains, how what we feed, it feeds us, that is both literally and figuratively, our brains need healthy fats and lots of them to function properly, it needs rest, exercise, both physical and mental. It is the hub, the mainframe of the control centre of all housed within our bodies. If we feed it negative thoughts we start living that, if we feed it positive energy and thoughts thats what we live. This is true regardless of, or if we have cognitive issues or not.

Living with Dementia does not mean that what I give my brain doesn’t matter. It just means that I must be doubly mindful of what my brain requires to operate at its best ability despite it being hurt. Thats how I choose to view my brain, like any other part of my body, that has injuries, if my kidney’s don’t function I take good care of them, if I break my leg I take care of getting it looked after and to heal. My brain not ever be able to heal, it may get worse which is expected with Dementia’s, but it is hurt, yet still it is my greatest asset.

I was thinking a lot about this after attending a couple of meetings this week, of course the talk was about Putin’s Invasion on Ukraine, we all live in different parts of the country and world. It really stood out how it didn’t matter where any of us were from, we were all being effected. Normally at these meetings we don’t discuss politics or religion, this however, is exceptional circumstance. This I believe is not political, in the sense we often think about, republican versus democrats, Liberals vs. Conservatives this is about something much bigger. Every one shared their concerns and fears, it is an emotional time for everyone. Everyone is effected to varying degrees, but everyone is effected.

I brought up my thoughts on how our brains can be our greatest defence during stressful times, or our greatest weakness. How teaching ourselves how much to feed our brains and how often, how keeping ourselves grounded was important. We talked about how important it is to talk and share ones feelings, keeping them bottled up can create internal stress, and managing stress is so important for everyone, and know one nows that better than those living with any type of Dementia or other Cognitive challenges. Truthfully, anyone one with any type of illness needs to pay extra close attention to keep there stress levels in check as much as possible during times like these and those who do not have any health challenges its important to them as well so they stave off illness, because stress loves sneak in to create and take advantage when our defence systems are down, our weakened and stress weakness our systems.

Some people feel it is a weakness to cry, to show or be emotional but in fact it is one way our brain helps us to process and move thorough and beyond things instead of having it sit inside of us, where it causes havoc on our health. So these groups and meetings are in some ways seemingly more important than even they were during the pandemic, it allows people to discuss, to share, to be emotional in a safe place and with peers that offer support to and for each other. That is the same support and grace we should be offering to all we come in contact with, we should do this always, not just during times of great uncertainty, but everyday, but never has it been more important than now. Love, Caring and Sharing, kindness and Gratitude, may we not take each other for granted.

This beautiful Saturday Morning, the sun is shining as spring approaches ever closer. Somehow this morning as I sat to sip my first coffee it or I seemed to be much more aware of how wonderful it tasted. Maybe it is in part because I feel so very centred, I watched the updates on Putins invasion of Ukraine. I put my Casting Crowns Music on and took myself to that place deep within, staying centred is so important to me at this time, it should be all the time, but like everyone else we get busy with the things that are important to us and in our business we forget to stay centred. It’s easy to do, it’s not wrong, it’s just something that happens. But this morning and all this week really, being centred has been at the top of my list, being grounded in what is really important. This song by the casting Crowns, reminds me of all the lives being lost needlessly in Ukraine, hoping that the people of Ukraine can someone find peace again, that soon the horrors facing them will be over.

Listening to this music helps bring me to my centre. It reminds me to think about how much I have to be grateful for, I can go to bed each night with no worry of bombs raining down on me, I have food in my cupboards, I can go walk about each day freely, without worrying about bombs falling from the sky.

I am hearing people complaining about the price of gas, the price of food, the price of everything on the rise and now on the rise more because of Putins actions. One man, along with his inner circle, creating havoc world wide. People need to complain I guess, it’s human nature. But we all need to take a step back and understand until Putin is stopped, all of the ways it effects us will only grow. We live in a time when the world is connected, that what happens anywhere effects everywhere. And although, it is in our nature to want to place blame and complain, we need to be mindful, and perhaps give ourselves a pinch and remember, that yes maybe we have to alter how we do and what we do, but we are not starving, we don’t have bombs dropping, we are not fleeing the horrors of war. Its ironic that we complain about our governments what they are doing, what we think they should be doing, but then when something like the invasion of Ukraine happens we want that same government to fix everything so we are not inconvenienced, so we can go about doing what we want to do. But what is happening right know is going to inconvenience us, it is going to be tough for the coming time.

We must all understand that we must all work together to stop this man and his reign of terror. This man cares not about his own people, he cares not about you or me, he cares about power, he is dangerous, I struggle to understand how he has been allowed to continue being in power. I am convinced he will not stop at Ukraine, he will and does want all of Europe, this is just the start unless he is stopped. I do not like violence, but sometimes there is a struggle between Good and Evil, and I believe this is one of those times, and I hope Good can prevail. Before we end up in another Great Depression, before we end up in world war 111, I have heard it said that it can’t happen, I don’t believe that to be true, it feels like we are at a tipping point.

These are just all my own thoughts, not all will be aligned with my thoughts and thats ok, I own them, they are mine, I stand by them. I pray, I cry, just like everyone else, and then I remind myself to be grateful. To centre myself, to be supportive in any and all ways I can to all those who are so deeply effected. I don’t have much, I have had to deal with many losses, give up and readjust my life, many times since I received my diagnosis of dementia, but I am fully and acutely aware of how fortunate I still am. If I had a way fo getting someone here to safety, I would happily give up my bed for them, feed them. My family survived Hitler’s reign of terror they came here and build and gave us a life that I am grateful for, so I understand that saying it can’t happen, is not what history teaches us. I am a realist, I don’t run and hide from things, I acknowledge them, I can talk about them, I can admit to my own fears about them. I work hard to stay grounded, to be aware, do to whatever small part I can and I pray. I know many don’t want to have to talk about it, or how its effecting them, but talking and sharing things is a wonderful way to help each other through difficult times, so support each other, and to remind each other its ok to look for and find the laughter and the joy in little things. I am hoping for brighter days ahead, and, hoping we can all dance in the streets and rejoice that this invasion has ended and the people of Ukraine can be home and safe once again and the healing and rebuilding can begin. I hope when that day comes the whole world plans a day of celebration. I hope as you go about your weekend, you keep a good perspective, walk instead of drive if you can, stretch the meals, help your neighbours. Sending much love to everyone everywhere. It’s time for my morning walk, to remember how grateful I am to be able to do something so seemingly simple.

Heres a little history:

The Great Depression was a severe worldwide economic depression that took place mostly during the 1930s, beginning in the United States. The timing of the Great Depression varied around the world; in most countries, it started in 1929 and lasted until the late 1930s.

The Depression affected virtually every country of the world. However, the dates and magnitude of the downturn varied substantially across countries. Great Britain struggled with low growth and recession during most of the second half of the 1920s. The country did not slip into severe depression, however, until early 1930, and its peak-to-trough decline in industrial production was roughly one-third that of the United States. France also experienced a relatively short downturn in the early 1930s. The French recovery in 1932 and 1933, however, was short-lived. French industrial production and prices both fell substantially between 1933 and 1936. Germany’s economy slipped into a downturn early in 1928 and then stabilized before turning down again in the third quarter of 1929. The decline in German industrial production was roughly equal to that in the United States. A number of countries in Latin America fell into depression in late 1928 and early 1929, slightly before the U.S. decline in output. While some less-developed countries experienced severe depressions, others, such as Argentina and Brazil, experienced comparatively mild downturns. Japan also experienced a mild depression, which began relatively late and ended relatively early.

There is much we can learn from history, here is just a few dates:

World War II Major Events Timeline

• November 11, 1918. World War I Ends. …
• January 30, 1933. Hitler Appointed German Leader. …
• September 1, 1939. World War II Begins. …
• September 17, 1939. Soviet Union Invades Poland. …
• September 27, 1939. Warsaw Captured. …
• December 13, 1939. UK Wins War’s First Sea Battle. …
• April 8, 1940. …
• May 10, 1940.

History has much to teach us.

It looks and feels ominus outside, misty fog, low light, its typical spring weather, but somehow it doesn’t feel that way. One wonders if perhaps the pandemic was just somehow a lesson for us all, to learn how to manage and teach us coping skills. To be able to manage what is happening at the moment. Prices soaring, many things difficult to find, many things just not available at all right now. The people of Ukraine might be the ones taking the direct impact of Putin’s invasion of their country, something most of us cannot even fathom, but it is impacting everyone around the globe and every day that it goes on we will feel those impacts more. More uncertainty for everyone, uncertain times. Breathe, Breathe just Breathe, take time each day to do self care. Walk, cry, yes crying releases stress, get extra rest. Be more mindful of the stress others may be feeling, offer more patience, more kindness. Find a good source that you feel is reliable to get your information from and get updates, but don’t sit watching it all day. Limit time on social media, mental health is really important during uncertain times.

On other fronts, yesterday was my first attack of pain in 8 weeks, thoracic region, so severe I couldn’t move, this after the night before having some type of brain event, very likely a TIA. I was in bed early, which I haven’t had to do for many weeks. I decided not to ignore it and listen to it, and rest, today I woke up feeling great again and some residual discomfort but not pain. As soon as I finish writing this I’m going to be turning up the music and do my dancing which I did not do yesterday because of the pain. I have to think it was just a blip a reminder to make the most out of this gift I have received back in January, finding the joy, even when things around us are upside down. Even when our world is turned inside out, finding the joy.

I’m working on some very specific projects right now as far as my advocacy work goes and thats enough at the present time, because for a number of years my advocacy work took up all my time, every day, all day, and advocating is important, but remembering to live is important too. Often we get so wrapped up in what we working on that we forgot to put just as much time into enjoying our days, putting pressure on ourselves to do more, when in fact we should be effort into slowing things down, taking in all that is around us. Taking time to have enjoy a cup of tea or coffee, listen to the birds sing, the rustling of the leaves in the trees, lapping of water up against the shoreline. Remembering that the work will happen, without us pushing ourselves beyond what is healthy amounts of time and energy, recharging takes time too, and the longer we go without recharging the longer it takes to recover and rebalance. Never has that been more important than now when we are living in such uncertain times. For most of us, our parents or grandparents lived through war and depressions, we have had years of little hardships in comparison to what they endured, but it appears the last two years was just a test. I pray daily that this invasion will end, I fear it’s just the beginning, I look to the past for guidance, and pray for the future.

My musics on, its time to dance, then pull out the umbrella and go for a walk and count my blessings for they are many, and I want to be mindful that despite dementia, despite many contributing health factors, I am blessed, I am free, I have much compared to many.

As you go about your day, I hope you can find a reason to smile, laugh and count your blessings.

I was up early this morning, I had a loaf of bread proofing overnight, it needed to go in the oven. My sister in law was going to be here by 9 am to help me work on getting family history stuff done, which has taken on more of an importance at this particular time. Yesterday I had a teary day, I think just a lot of emotions running right now. Understandable, expected for most everyone, two years of a lot of uncertainty, followed by the invasion of the Ukraine, by Putin. I don’t say by Russia, because the people in Russia are rallying against it, they are paying the price for a man whose need for power trumps anything and everything. It’s creating a new level of stress for people, and I am sure its what created this urgency for me to get these records put into the family history site, most records especially from those who were from Germany where destroyed so the fact that my grandmother, Uncle and mother were able to keep them hid away and safe tells me they must be preserved. Dating back to the 1800’s, it felt good to get the information inputted and knowing I had done my part to preserve their history.
I have been feeling physically really well limiting time on social media/ news etc. Ensuring I keep my mental health in check, but then this afternoon out of nowhere, I found myself standing in the middle of the room, no idea how long for, no idea what I was doing or going to do. I have felt off the rest of the day, wondering a small TIA, nothing that requires medical interventions, just a brain thing, first one since the beginning of January. Maybe I am feeling the stress of all that is going on and been pushing beyond what i should be. I feel fine, just a blip, physically feeling great, so because everything for me is vascular based, just a blip, maybe I needed that reminder.
I have also been thinking a lot ….. update, had to leave this last night, needed to sleep, another indication of the blip, but this morning I am feeling refreshed, and hoping it was indeed just a blip. So back to those other thoughts, thinking a lot about how for many if there was help, resources and rehabilitation, In those I include things like programs, music, art, dance, walking, hiking, biking, baking, cooking, the list goes on, along with the more traditional rehabilitions, physiotherapy, etc. Accessibility to these types of programs, enhance quality of life. The constant focus on ”memory loss”, I cant believe after all the years of advocating, we are still there, no wonder the stigma remains. And why is that, is it because it has become the comfortable place for people when it comes to dementia..? Well I for one am tired of people being comfortable with the old outdated views. Vision problems, speech, gait, pain, fatigue, just to name a few. I hate trying to trying to justify my illness, every dementia has its own complexities, its as individualized as we are. The brain the most complex organ, so when a disability stems from this very complex organ we need to somehow and someway get the focus to shift away from just the memory component and focus more on all the other aspects that effect those living with dementia. For many living with dementia, what effects that we feel today and affect us may not be the same ones that effect us tomorrow. We are flexible and adaptable out of necessity, we need others to be flexible with us. Some days I don’t want to do dementia, some days I just want to do life. I have to live with my dementia every day, but I don’t want it to be all that my life is. My advocacy work is deeply important to me, makinf a difference is deeply important to me, but living, living is equally important to me, doing things I enjoy, laughing, crying, taking in all that I can while I can. Its a struggle so often, to give myself permission to put the dementia banner away for a spell and wave the living life flag. Today, as my heart breaks for the people of Ukraine, its a stark reminder that despite whatever challenges I face I need to remember to live today fully.