Category: Stress

Last night I woke in the middle of the night thinking about how often talk about ensuring people can thrive, to have a good quality of life. Many of us living with Dementia myself included talk often about living well despite or diagnosis, that our illness doesn’t define us. We so many great examples of people living with dementia doing a lot of great things. I believe we should always give people hope, help them find purpose and to live their best life.

But there is another piece and this piece I am not sure of how many may or may not feel the things I do, but I am fairly certain some do even if fleetingly. This other piece is the piece that I feel right know, the piece that says I’m tired. I’m tired of trying and fighting every day to thrive, I’m so exhausted from it that I am not sure I want to keep fighting. And I know I can hear the gasps already, the ” oh but you cant give up, the oh but things will get better, the oh maybe you’re depressed”. Yip I can hear it all, it makes people uncomfortable when you are honest enough to say those things out loud. The truth is I am not depressed, I am real, and not every day or every week is good, its not easy having to fight this fight every day, no matter how easy we make it look. Sometimes our bodies and souls are just tired, so sometimes not wanting to fight to thrive anymore is more real than most can imagine.

Truth is there is actually great peace in being able to say it and own it. It feels good to say today I don’t want to keep up the good fight and if it all ends here and know then so be it, its been a hell of a run, but I’m tired.

For most of us we have so many complicating factors dependant on which type of dementia we have, we live with constant pain, our dementia is so much more complicating than most have any idea, in large part I think because for the last 30 plus years everyone knew about the late stages no one acknowledged the early stages, people still for the most part have very little understanding of the challenges those with young onset face, even today people look at me and think well you look ok, or you don’t look that bad, but they don’t see the pain I fight, the fatigue, how the only time I get a little relief is when Im lying down. Others its there vision, balance and coordination, so many moving parts that someone having a short visit will never see.

Those are the pieces and parts that some days tell you, I don’t want to do this anymore, those are the often untalked about things, that bring us to sit and think and feel that today, I don’t want to fight anymore, it doesn’t mean that tomorrow I wont get up and fight again, but sometimes I just am too tired.

I think others need to respect people in that, not try to ” fixthem”, or make them feel like they have too, maybe they need to feel like its ok to not, and when you decide that thats how its going to be for the duration its ok too.

It’s not about being depressed or suicidal, its about being real with ourselves and our illness, its not easy, it challenges us every single day, its ok to celebrate all that we enjoy, and find the joy in things we can each day, but its also ok to not sometimes.

I won’t quit fighting not yet, because there is still a couple things I am hopeful to do on my bucket list, my bucket list has also shrunk 10 fold, but today thriving is not something I’m up too. and when the say comes that I reach that point where being done is what I want then that will and should be ok too.

December 1st, 2021, first day in weeks that I have woke and actually been pain free. That being said, I have been noticeably missing from many things and interactions, missed meetings, missed events, missed social conversations, many days its been too much to navigate through the pain to try to manage participating a lot of things, and even though most of them are on line, its still difficult to be present when pain is overtaking you, and laying flat is the only relief. This is those components of dementia that few understand, all the physical challenges. However, I did with great effort, manage a couple things the last few days, one per day, thats all I could do, but this morning, I actually feel almost human, I’ve managed a walk. these simple things don’t seem like much until to manage them takes everything you have in you, so Im grateful that today I feel a little better, maybe, hopefully, another run of doing and managing ok. Although maybe to many its small thing to me it’s everything and so much to be grateful for. A little thing people don’t know about me is that every morning when I wake up the first thing I do is look up and say Thank you, knowing I am being blessed with another day.

We have as everyone knows been experiencing devastating events here in BC, its been a hard year here for many and it is a wake up call for us all and as we go into the holiday season, I do hope we all think about whats really important, about how we can adapt our lives to help with climate change, because each small piece makes a collective large difference. I’ve also been hearing everyone be so excited about how unusually warm it is for December 1st. it is 17 degrees Celsius, 62 degrees Fahrenheit here today, the average temperatures should be where I live ranging from 0 to -6 Celsius or 22 to 32 Fahrenheit, many are jumping up and down, saying it could stay like this all winter, but I think we should all be thinking about what that is implying. We already have had our highways, railways lost to floods and washouts, thousands out of their homes. Have you stopped to think about how this warm weather is going to effect things going forward, we already have supply chain issues, costs of food becoming more than most can manage. We have had our farms and crops wiped out it will take years to recover, that means the things we usually are supplied by them in the spring we won’t have, or we will be paying a lot more for them to come from other places. We already have the ground saturated, unable to handle the huge amounts of rain, the snow pack is melting, which we need for spring and summer or we will again be faced with more natural disasters of more fires. I am not wanting this unusually warm weather, I am not looking forward to what it may mean, if we get lots of snow and cold on top of unstable ground more slides, more avalanches. I think often we say we want something without giving thought to what it really means. The old saying of ” be careful of what you wish for”, may actually have more to it than what many realize.

No I am not living in the doom and gloom world, I am however living in a world, where I believe I need to be informed, updated so that I know what I can do to help myself get through the coming time, as well as help others and so that I may try my best to not put added burden onto a system that needs us all to be proactive. Whether it is the pandemic or climate change, whether we want to think globally or closer to home, each and every one of us have a role to play. It is not a matter of thinking that somebody should do something, we all need to do something. I don’t believe we have time to wait, I believe we must all do our parts no matter how small. I believe we need to start treating our earth as the gift it is and all that it provides for us, we need to start treating each other as respectfully as we think we should be treated, not just those we think we should treat a certain way. We have placed far too much emphasis on what we have, so called status, e instead of who you are at the core.

A quote by Barack Obama says it well : ” Change will not come if we wait for some other person or some other time. We are the ones we’ve been waiting for. We are the change that we seek.”
another quote that comes to mind is by Margaret Mead ” Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.”

As my province works to get through the devastation that it has felt this year, and the uncertainty of what the rest of the week will bring, I hope we can think about not being upset that we may not have access to all the things we think we want and need, and be grateful instead of what we do have. Can you get through a Christmas without a bunch of shiny expensive things under the tree, and still be grateful, and still feel blessed, and still enjoy the season. Or will you fall into that “its not fair state”, will you be upset that Christmas Dinner may not be Turkey, or thankful that you have a warm home and food on the table?

We can all choose to be miserable about things or to decide to embrace things and as another old saying goes ” make the best of a bad situation”, look forward, quit saying I wish things would go back to before this or that, things can never go back, we can take what was good from behind us and carry it forward, but forward is the only way and we each as individuals have to decide if we are going to go forward in a positive manner or negative one, and again how we decide to manage it impacts others, collectively we can make it better or worse.

I am of the hope most will chose to make new traditions, bring new meaning to things, cherish and remember all the good parts and that as the year winds down, we have all collectively decided to go forward in a positive manner that will not only help ourselves and our families, but help the world become a better place, the earth a healthier place. i know I have written some about some of these things before, but they are important to me, because even though I live with a progressive and terminal illness, I have much I hope to do and accomplish before I am done on this earth. I want the world to be a better place for all those who are just starting and are still to come. I want children to have hope, to look to their future and have it look bright.

As I am sitting here looking outside at the wind blowing and listening to our provincial updates, I hope you enjoy this first week of December, stay safe, do what you can. To my fellow British Columbia’s we are strong and proud in BC, we have and are being tested in ways none of us could have imagined, so this holiday season, lets all give each other a little more grace, compassion, patience, in all your daily coming and going. Let’s help each other.

November is quickly coming to a close and I believe many people are looking forward to having 2021 behind us, I wonder how many of us have actually taken the lessons we have been given. 2021 feels as though it has been a particularly hard year for so many in so many different ways, or maybe its just that we are more aware, paying more attention to those things, I am not sure. I know for me it has been a difficult year, I have had years in the past that have had tragedy, heartbreak, and those times but this year, it has somehow felt more difficult, maybe because we have had almost two years of covid-19, we have endured so much in the way of catastrophic events, and it feels like we are not through the worst of it somehow. Amidst all of this, health challenges, complications, not only for myself but for many others, the year has somehow gone by in record time, like we are in warped speed racing to get too and through to the end of it.

Is it that we are all hoping 2022 will dawn brighter, with so much of the worlds crisis somehow being resolved by the start of a new year. I am hopeful, how about you? I am hopeful that 2022 will see us become kinder and more compassionate and more human. I am of the opinion, that we somehow lost track of the importance of the human element in things, in our race to have bigger and better and more. We stopped looking after our earth, the animals and all that nature supplies us with. Kill the bears, kill the coyotes, kill the wolves, we don’t want them in our neighbourhoods, kill the other animals for they are worth money for their hides and husks and parts. Yet it is us who is on their land, we have encroached into their space, yet we somehow have felt justified in it all because we somehow allowed ourselves to feel superior. We are know seeing that with our seniors, they are disposable, instead of the invaluable pieces of our society, whose wealth of knowledge is so undervalued. They ( this includes me by the way), have become a hinderance, a burden. We are doing it with our most vulnerable, those with disabilities, our homeless, our people who are laden with mental health and addictions. These are all an indication of a society that has little value for life, that is of course unless it is our own, if it impacts us then we want and expect someone to do something because we should not be inconvenienced. These are the things that have made this year seem much more difficult for me, they weigh on me, I wonder what more can I do, I want to be part of the solutions, I am not interested in being part of the problem, I don’t want to sit and complain, I am hopeful that the dawning of a new year will see a renewed mankind, one where life is valued above all else.

Ok onto other things, I have not been writing as much as I did in the past, it is more challenging these days. My health at this state means I have been spending more time in a lying position to keep the blood flowing with greater ease to all areas, I have an inflammatory conditions effecting me, but each day I wake up, I am happy, i am truly grateful for each day, no matter how much I struggle in the day, regardless of the pain, and lately pain is a huge issue, at times it is so intense it takes my breath away. But again I am at a time when our health care system is in total crisis, I am blessed with a great team of doctors who do not let me fall through the cracks.

So although this last week saw me bedridden for the best part of the week, a few short moments of getting out to walk a block or two, then back to bed, I am still going to my Pilates every week and my physio, some days its all I can do to get myself there, but it is an important part of my well being and I am grateful to their willingness to work so hard with me. I am feeling such inner – peacefulness, in part it is because no matter my diagnosis, not matter that things are progressing and changing I still continue to look forward and do the things I can that keep me and my life going in a forward projection.

I am looking forward to spring, I have submitted two abstracts for Alzheimer Disease International Conference in London, England for April, I am looking forward to being part of an in person panel in Calgary Alberta in May, I am looking forward to perhaps an in person in Toronto or some other location in March of 2022, with the Canadian Consortium of Neurodegenerative on Aging ( CCNA) These are all things that propel me in that forward motion. If in fact any of these things can happen, everything depends on covid19 at the moment, and of course my own health abilities.

I am enjoying and hope once I regain strength again from this set back, to my continued work with Dementia Alliance International, also to my work with Dementia Advocacy Canada, to help ensure its continued growth in Canada. Helping at my local and National level is as important to me as the global advocacy work. Making sure our Human Rights for those living with Dementia are upheld. I have other projects, working with Age well, working with Google, all of these things are positive. Although at times it feels like nothing is happening fast enough, it is all things that keep me moving in a forward fashion. I do not want to end up sitting depressed and waiting to die. It would be easy to fall into that fighting pain and continuous ongoing changes, but instead I give myself permission to rest when required, to only do in a day what I can manage for that day, to know that if I have to miss something its ok, I can catch up, that I have to put my well being first so that I can continue to move forward. This is how I stay positive, and as I sit writing this and the snow is falling outside, it too gives me hope, hope that with every winter there will come a new spring. This snowfall is the start of the next storm coming in, I hope that everyone stays safe. I am waiting for my car to come home, but it is held up in the supply chain issue, so I am not sure when that will be, put its tucked in safe and so I can manage and know that it will be ready when it is meant to be.

As November comes to a close, it will be a new month next time I write. As the new month unfolds I hope it brings with us all a renewed sense of hope, and I hope you all find ways to feel the sense of wonder of the season.

I am admittedly struggling on some levels, which I will talk more to later in this blog. First however I will tell you about my recent events, last week, I had another ( the last one a couple months ago saw me in the hospital for 5 days), episode of severe pain very low abdominal pain, followed by profuse sweating and feeling like I was going to throw up, trying not to, face in the sink dosing myself with cold water, the next thing I know I wake up on the floor, I managed to get to my bed, didn’t call for help, hospitals are busy enough with covid etc, as are the ambulance services, figured I would just lay there, hoping I would be ok. I slept on and off, stayed there until morning, had a couple of very quiet days after that, trying to once again slowly regain strength. Yesterday was finally that good day again. Follow up will happen on Tuesday with the Doctor, but given the stuff they are currently looking at with my blood flow issues to my muscles etc, and the impacts to my lungs, and other organs, I am of the thought that this too is related to that. Happening once could have been a one off, but happening twice is indicating something else. I am bad for not getting myself to the hospital I think in part because I know it usually equates to a fairly long stay. It is not my dementia that is the problem it is all the complicating issues that are there, the dementia is actually the part I can live with comfortably, for I don’t care if I forget things, I don’t care if I have to find new ways of managing day to day. I have managed to rearrange my life to accommodate all those things, but dementia is about so much more than memory loss, and for me with my dementia being vascular based, the complications for me are immense, those things are a problem for me, they are the things I struggle with the most. The blood flow issues, the issues with organs, kidneys, liver, heart, etc, because of blood flow, issues with my vocal and swallowing abilities, the fatigue, on and on the list goes, those are the concerning factors. Thats why I wish people had a better understanding of Dementia, because it is so so much more than people are aware of. But each day I wake up I say Thank you for another day, I am grateful that I am still here, I sit in deepest depth of gratitude that most cannot fathom.

Last night, was another piece of my dementia that people don’t understand. I spend last night, not asleep but not awake, it’s like being in a trance, like some kind of hypnotic event, it doesn’t frighten me anymore, but I am acutely aware that somehow my body is sleeping and resting, yet my mind has been transported to other places, thoughts are so clear, I can see things, understand things, my eyes are open, its un-describable to most, such a strange sensation, a happy sensation. I actually was able to see this blog completed during that process, even though I had not even started it. An altered state of being, most won’t or can’t or refuse to believe those things happen, it does not happen often, but when it does I can see that I am neither awake nor asleep, I can see the thoughts. I remember travelling through my thoughts, coming to some realizations, thinking about how I had to come out of that place as daylight approached, I remember at one time it being 342 am, but then I continued in my thought traveling, time traveling, I came back into the real space and time at 543, I got up made my coffee and thought about the night, I wondered if I may be more tired today because of not sleeping, but its not that I wasn’t sleeping, because I also wasn’t awake. It is a beautiful place to be when I’m there, happens infrequently but peaceful when it does. I also woke to knowing there is some things I need to do.

The first thing I did was talk to God, ( or whoever you call it, the spirits, the angels, the universe), I talked about knowing that I was and am lonely, lonely for the companionship like that that I had with my husband, someone that you just like as a person, someone you just want to spend your time with. I talked about knowing that I was pretty sure I was not but here to just be alone, so I asked for helped in bringing the right person into my midst to change that, to set up the circumstance that would allow for two souls to meet. I am not lonely in the sense of being sad, or depressed or struggle spending time on my own, thats not it, it’s at a deeper level. I am also looking for my forever place, I am grateful for where I am it is safe, it comfortable, we have a sense of community here, as there are only 10 units, but it is not my forever home and I am deeply aware of that. So my my heart and soul is looking for its forever home.

I am also really focusing on my spring plan, its a forward motion, and they may tell you that you should get your affairs in order that you should prepare for the end when you are diagnosed, but truthfully they should be telling you to get busy living until the end. So for me keeping things in a forward motion is the best way to ensure I et busy living instead of getting busy dying. So I am busy putting my plan into place, and I am so thankful for those who are willing to help me in my planning. If I die before I can do it so be it, if I try and fail, it doesn’t matter, what matters is that I am not sitting waiting to die. I am excited for my spring plans and as it comes together, I will write about it.

The next thing I have to talk about is a conversation I had with a lovely lady who I have had the pleasure to become acquainted with I who I now call a friend, someone I have yet to have to pleasure to meet in person, but hope to in the future. I have talked very openly to how I feel about the use of technology the good and the bad, and recently with our events in this province, it became abundantly clear to me that we have set ourselves up for catastrophic failures and inabilities to manage if there is ever a system wide failure and how possible that is, simply events like Russia shooting down satellites that caused debris to create a dangerous situation for our communication systems. We are so reliant on technology now I am wondering if we have crossed a line of becoming too reliant. Our gas pumps are computerized now, how banking, our medical systems, even our vehicles are so highly computerized now the possibility of a complete failure scares me more than most anything. Nope not spending my life fretting about it, instead doing what I can to ensure it would be as minimal as possible for myself. I know most people think that it could never happen, but as in all things often that is our own need to sit in a false sense of security. I think those who are living off the grid are really trying to avoid getting caught in the mess when it does happen.

But back to my friend, she was talking about the use of robots in certain settings, like care homes, which everyone knows I am opposed to, unless they are being trained to clear tables, do laundry, do paperwork, but I am adamantly opposed to them being used in any capacity that involves direct contact with patients. My reasons are many and long, but my friend Debbie summed it up well when she sent me a quote to use here and a picture that truly sums up what a robot cannot do. So Thank you Debbie for your words and your friendship: here is the quote in full: I have taken out the name and location for privacy reasons.

“Christine, This is XXXXXXXXXXXXXXXXXXXX   Her family took the picture and did a family tree (a little on the back).  Tell me a robot can do this!  To all those techy people who think robots are the end and be all, tell them for me and you can quote me,  “BALDERDASH!”

This has been a long post today, I will end by saying it really is a pleasure to share my thoughts and my journey with you. I hope you all stay well and have a good week.

Once again we have been hit by a natural disaster in the province where I live. British Columbia Canada for those that don’t know, was hit we a heat dome, and then devastating forest fires this summer. We are now in fall heading for winter and have been hit with a storm system that has brought unprecedented rain fall, so after all the drought and heat, the unusually high rains saw our grounds give way to extreme slides and wash outs, rivers and streams flooding, highways cut off, train tracks washed away. People trapped between washouts, the loss of life, the emergency continues. It is a time of great sadness seeing all this happen to the province, I was born and raised here, I love this province. I hate seeing people hurting, scared and wondering what next and when will it end. Whether you are impacted directly or indirectly, it is stressful and causes anxiety and fear for many. We likely will never fully understand humans and the behaviours seen, but we can at least remember, when things are difficult, and people are stressed, tired, scared and anxious they often exhibit and do things in ways they normally would not. We must remember instead of responding with anger we need to show understanding and patience.

I am praying people will remain kind. I have heard and seen much of people pointing fingers trying to look to blame, but that is wasted energy. Mother Nature doesn’t give a lot of notice, and she loves to somehow deal us with more than we were expecting. Like we somehow have control. Mother Nature, gives warnings, like we were notified for many days that this storm was coming, so we should have been as prepared as possible, then when it hits and hits hard like this storm, we at least were prepared as we could be. Humans have this burning need to believe we can and should control everything, Mother Nature reminds us we are not in control of all things. It is always hard to watch the aftermath of Natures wrath, at best we need to show extra kindness, offer help where we can, be extra patient. We are a resilient bunch here, we live where we can have extreme conditions, but the things we are seeing know are getting worse that the things we have seen in the past, larger scale, this is climate change, many don’t want to admit its real or happening, but each and everyone of us have a role in it. I believe living here we should never venture out even for what we would think is shorter trips like 3 or 4 hours, without our emergency kits, winter kits, summer kits, depending on the season. We live in a province of difficult terrain, with many miles of nothing in between and if things happen we can get stranded, a four hour trip can quickly become a day or two or more. I have travelled much across this province in all seasons, I was taught growing up to be prepared, yes lots think its a pain in the butt to put these things together, but get stranded just once and you soon realize how important it is. I have heard people say why didn’t they do more if they new the storm was coming, why is taking, so much time to get to people, yet things mobilized and happened as quickly as it was safe to do so. The work continues, and as much as we want ( them) to do something or more, we also all have a big roll to play. We need to be better prepared, have enough supplies at home to get by for a week or two, have emergency candles, water, etc. On the other side of things, this year has shown so much of the goodness that still exists, people pulling together to help however they can, it helps restore ones faith in mankind, when we are inundated with all hate, violence, racism and things we hear about every day. It keeps me hopeful of brighter days ahead.

I sat down last night and cried for our people, our province, our country, this year feels so much more challenging than last year, the year isn’t over yet, winter isn’t even here yet, but I know people here now how to survive, these are challenging times, its hard to see our province hurting and being damaged, its hard to see how people are struggling, hard to now your loved ones are being directly impacted.

I wonder at times, when people think someone should be doing more how prepared are we all for the likely hood that one day our whole communication systems could be impacted. When the internet goes down wide scale, when bank cards don’t work, automation is great until it isn’t, I worry we are so used to just being able to access anything and everything that we are losing the ability to survive as people did in the past. Progress is great, technology is great, but it does not come with out a cost, and perhaps the biggest is the loss of basic life skills, that far too many don’t have and aren’t taught. Life skills, survival skills, these are things we should be teaching in our schools, yes computer classes are important in this day and age, but life skills are invaluable no matter how much progress is made in this world. I hope that this year has instilled in all of us a desire to know and learn more of those skills.

This morning, enjoying that first coffee, just letting thoughts free flow, from here to there. Its been a nice weekend thus far. Yesterday was all about getting stuff done, today will be all about relaxation.

As the thoughts free flow one of the things I am thinking about today is the upcoming holiday season. I have noticed many I know have and are already decorating, some started before remembrance day. Many have told me they really feel the need to this year, they feel they need the pretty lights and decor, maybe because there is so much uncertainty for people on many fronts.

While I think its fabulous that people recognizing that it is something they need and are honouring it, so often we feel we cant because its too early or it too this or that, but seeing people take more and put more attention to their needs , instead of being so busy to even think about what it is they are needing is a great thing. Every day is truly a gift, we should more effort into knowing and honouring what is that makes us feel good and bring us joy.

One thing we all need to do is also allow ourselves and others to honour and feel their grief, their losses, at this time of year we often have an expectation that they somehow put their grief aside because this is supposed to be a happy time of year. But perhaps if we honour the grief, the loss, it also allows room for the joy and happiness. Grieving may be about a person but it may also be about other losses, work, home, health.

These types of losses are real and we need to allow people to grieve them as well. By giving people the space to grieve helps them in their journey to healing as they discover who they are know becoming. Losses change us, at the deepest levels, that often are miss understood by those who have not endured those losses. But just as we need to honour and do the things that bring us joy, make us feel good, in those deepest crevices of who we are, so too must we honour the grieve. It does not mean we cant find ways to bring joy into the mix, find ways to honour that someone, or something. most importantly don’t judge people wherever they are on the ever moving line of the emotional train. Instead of trying to pull them out of it, try asking them about what they are feeling, about the person, or about whatever other loss they may be feeling or thinking about. Talking about that someone or something is often what someone wants more than anything, so please remember give them the gift of helping to remember and honour them.

Also a gentle ok, maybe not so gentle reminder that many with dementia find the holiday season challenging, its not that they don’t want to take part that they don’t want to share in the festivities, but they may need to do it differently, shorter periods of visiting, smaller groups, ( it is for many difficult to follow and process conversations when to many people are conversing). This little tid bit should help you make it more enjoyable for them, perhaps a quiet corner, away from the larger group, where a few people could converse with the person living with dementia, have some gatherings earlier in the day, luncheon meals versus dinner, maybe with those most treasured, more focused on the person with dementia, talk about memories that may trigger great memories for them. Even many of us who are still considered high functioning still need those earlier in the day events, smaller groups. We still want to see people, enjoy the holiday season, but for many of us late afternoon our fatigue ramps up, our cognitive abilities decline, and for many of us quiet time is what we need.

My Christmas will again be spent alone, well not totally alone, with my dog, its been it seems years since I’ve spent Christmas with anyone. I used to love to do lots of decorating and baking and cooking, the later two are by far more challenging know so I don’t really do it anymore. if and when i do things are done in steps and stages over the course of days. Nonetheless decorating i still love although that is scaled back by 100 times of what it was.

Today I will dig out what I have left and perhaps work on making a wreath to hang on my deck. maybe I can be ready to start decorating around the 25th, it takes me a week to fiddle about and get things so I’m m happy with it, so I like to have it all done by December 1st. so that I can enjoy it fully for the month. I really enjoy sitting with a cup of tea with the lights going , and my music playing.

So as we move toward another week, I hope we all kind take a few minutes today to think about what little things we can do too allow others to enjoy the upcoming season in ways that are truly reflective to who they are and not make it about the commercialized season that we have been lead to believe is how or what it should be.

Tonight we change our clocks back an hour, or at least most of us do. There is a small little area of British Columbia never changes the time, the rest of us do it every year at this time and then again in the sprint. In earlier times it was done to give farmers as much daylight as possible to work in. I suppose one could say it was a good idea years ago, although I am not sure even that makes sense to me. I believe at one tome people worked by the sun and the moon, they hunted and fished in accordance with the seasons, they planted and harvested the same way.

Somewhere in there western civilization decided that changing the clocks was a better way. People have long said it is very hard on their systems, it is a time of more accidents, all kinds of evidence to show that perhaps this was not the best choice, yet it still remains. They say its to help farmers, farmers have high powered equipment with massive lighting systems that they can work whenever they want, so that no longer is valid.

Every year we go through this debate if wether we should put it to where it was before man started messing with it and leave it there. We then here how we can’t unless the USA also agrees, if we went ahead without them it would create havoc for the airline’s. This is also something I don’t believe, they deal with varying timezones all over the world.

I believe its another classic example of how policy and beuacries can make things far more difficult than they need to be. Man has become so good at over complicating things. We can live how we were intended, If we need to operate during the other times we have the capability to. We have lights, we have alarm clocks, the time itself doesn’t have to change. These time changes effect me, I find them very difficult. Not all countries change, and some countries like in Canada, not all areas within it change.

So it appears that it is more about what certain people, certain corporations and companies want than what is actually best for people. It seems that for far to long, money, power, greed as been allowed to dictate what policies are upheld, what ones are changed. So many of the crisis we are facing are happening because of commercializations, money, power and greed. It has created a world that every day becomes harder to be part of, but I can hope for change, I can hope for a better world.

Onto other things, it was a crazy week, many twists and turns, a broke down car, hours sitting waiting for tests at the hospital, although I found that time enjoyable, i engaged in conversations with others, saw a old colleague and had a nice visit, the hours actually created an opportunity for me to have face to face ( masks of course), social distance of course, but face to face interactions, social engagement, human interaction, which as been so lacking living alone. My car repaired yesterday, an enjoyable impromptu walk through our down town. The longest walk I’ve been able to manage in about a year and a half. I must say I am impressed with the changes happening in the down town area. Some great phone conversations, participating in the Radar Summit in Saskatchewan, and working with some great organizations, striving to make a difference.

Time is moving quickly it seems,

another day ends, another dawns.

Falling behind, catching up, or just drifting along.

Go to bed, get up, go to bed,

where did the time go,

what did I, where did I go,

my oh my, what did I do,

it disappears as fast as the time.

My mind like time is often just gone.

This is my attempt at writing poetry, I am trying to do different things to help my brain hang onto to whatever abilities it can.

Daylight has dawned, time for another coffee, I hope you all have a great weekend . Don’t forget , whether we like it ir not, its that time for us to turn our clock back.

Not every day is sunshine and roses, some days it’s hard for many to get out of bed, myself included. I am often asked how I stay so positive, its a hard question sometimes to answer. I am not always positive, some times I feel frustrated, angry, and just plain sad, some times I feel like I am being swallowed up by never ending grief. But that is not every day, sometimes it ebbs and flows through a day, from happy moments to absolute despair. For me it is not at all about being positive every moment of every day, surely I would end up in complete depression trying to master that, but rather it is about accepting and acknowledging all the different emotions I feel and being unapologetic for feeling the things I do feel.

Society spent years telling us to suck it up, or dry your tears and get over it, instead of embracing all those different emotions that allow us to be whole and complete. When bad things happened we were told to put it behind us, things weren’t talked about, leaving us today trying to help people understand and deal with all the unsolved traumas and how they impacted and still impact their lives. Feeling sad is ok, failing is ok, winning is ok, being happy is ok, feeling angry is ok, feeling frustrated is ok, it is what we do with all those feelings and how we learn to channel them that matters.

So when people ask me, I am very honest that not all days are easy, not all days are good, but that I try to acknowledge where I am and then find it easier to move on and I do try to do a “grateful list” one in the morning and one in the evening.

I don’t want to get stuck in all the doom and gloom we hear. I try to keep it in perspective, for example, climate change, yes in my opinion it’s very real its something we all need to take seriously, do I think we all need to do our part, absolutely, if we don’t we will be the ones to blame for the destruction of mankind. But I don’t let it overwhelm me, I do the things I can do, the little things that can make a difference. I pick up trash and bottles and cans when I am out exploring, I recycle and reuse and repurpose everything I can. I am very careful with the water I use, I only do full loads of laundry, I only run a full load in the dishwasher, I try to purchase things that are not in plastics, its not always possible but I do what I can. There are lots of little things we can do, so it feels positive, it doesn’t take on the doom and gloom aspect.

Then theres the opioid crisis, the homeless crisis, the health care crisis, those to can overwhelm us, put us in a state of depression if we let it. I live in what some say refer to as one of the worst areas of town, I however feel like I live in an area that offers many conveniences for me, no it is not perfect I really need a space where I can have a small garden area, where I can get my hands and feet in the dirt, its grounding, its healthy and its one area that I am lacking, but instead I have a house full of plants, they give me good clean air to breathe they offer beauty on even the dullest of days, I sing and dance to them, sometimes I’m sure I can hear them shutter ( hahaha), its important to have things to care for, yes I also have my dog, who showers me love, and we care for each other. I don’t ignore the crisis right outside my door, I donate what I can to the soup kitchen, I take any clothes, boots, shoes etc that I can, and the biggest thing I can do, is acknowledge those who are living on the streets, say hello, tell them to stay safe, tell them to have a nice day, offer them a little bit of basic decency, acknowledge that I know they are there, that they too are people.

So many things we can do, again they may be small things, but if we are all doing small things it can all add up to a big difference. I can and do advocate not only for those with dementia but for the homeless for those caught in the opioid crisis, I advocate for changes and I mean actionable changes in our health care system. Yes it seems endless at times, at times I wonder if any of it is worth it, I too am human and I too have those thoughts, but I do it, this allows me to live more fully, live in joy, live in gratitude. There is a desire in me to live centred in this place of peace. Peace within myself, to be able to live a peaceful life despite all the things going on that tell me I shouldn’t be.

I have taken up trying to read again, I haven’t read for a few years for it left me in a state of frustration, not because I couldn’t read but because I no longer retain what I read. But I always loved reading and have some books that I really want to read, so I challenged myself to work through the frustration, and know I am reading again, I am reading a book right know called Dancing with Elephants its a great book I am really enjoying it, although I couldn’t tell you what I read yesterday and last night, I can tell you the joy it brought me to make a cup of tea and curl up with a book, thats the important piece, not whether I process or remember it but that I am enjoying it in the moment I am doing it. If I read the same book over and over then some of it will eventually go into long term memory and stay there, allowing a memory or discussion to bring it back into focus. This is the gift of Dementia, having the ability to find ways and working through things to continue to do things that matter, that help me have a great deal of peace. I don’t fight my illness, I work with it. Its a a wonderful thing to be able to look at it and see the gifts it has bestowed on me instead of just the devastation. This has not been an easy place to get to, it has taken me years, I work at it everyday, but somehow most days it doesn’t feel like that hard of work, not like in the beginning. In the beginning I was sure I would not or could not survive it, let alone live with it, and thinking about that, feeling a sense of pride in myself for making it this far, for not quitting, for not giving in, for finding a way to live a life of peacefulness, to learning to embrace it all. I thought about this last night and fell asleep with a smile on my face, and I awoke this morning feeling like although the weather may seem dark and dreary outside today, I feel bright and cheery.

Its a lovely clear beautiful morning, I was awake at five a.m., morning coffee is tasting somehow extra smooth and rich this morning. October came and went so fast, life is happening so fast it seems, which seems odd considering restrictions from covid 19 still abound. Yet somehow here we are in another month, a step closer to another year winding down.
It seems I am so in touch with how things make me feel that somehow my awareness of things around me is so heightened, in the past of example I likely would not have given thought how things may or do impact me. I was so busy just being busy, thinking I needed to somehow prove myself, to maintain all that society thought I should. It left little time to actually be in touch with the inner most parts of me. I appreciate having the time to go within, to explore, its not always easy work, we have to walk through fear, but on the other side of it I find myself able to love who I am, I no longer set myself up for failures, to unnecessary expectations, I can love myself on my good and bad days, to see that even on my bad days when my illness causes and challenges me that it is still a day to celebrate.

Living more honestly with myself also means that I examine things, I think about the impacts of things, and one of those things of late is the use of technology in our lives. In many ways it’s fabulous it has done so much to help not only those of us living with Dementia but to everyone. Somehow though I have been examining all the different aspects, looking at things through a lens many won’t or don’t. This does not win me any popularity contests, I don’t do it to cause harm, or upset people. It’s almost like its another one of the gifts bestowed on me with my Dementia, like my love for writing, and I do believe it is a gift, to be able to look at something, see all the good it can and does do, but to also see the harm that can come if we cross certain lines. I work with and on some very interesting and good things that are technology based and have the ability to really help many, I have also been watching and seeing many things come to light that can if used in the right setting perhaps be ok, but put into the wrong settings can do harm. Yes I say can do harm, because it depends on how willing we are to look at the harm that can come, to acknowledge that and alter how and when we use certain types of technology. Yesterday I read an article written by a esteemed Doctor, who talked about how technology can be a very dangerous thing if used in certain health care settings, he was referring robots used in situations where they are actually replacing a person, doing different types of things that would normally be done by a person who while doing them is doing assessments that can only come from hands work with patients. I then watched 60 minutes where they did a program that showed the alarm has been sounded on the use of technology and robots and the damage that can happen to mankind on a bigger scale than most are wanting to think about or look at. I am and have been sounding the alarm, but still believing there can be many aspects of technology that can do great things.

This does leave me feeling like at times I am standing alone in some aspects of my advocacy work, perhaps because some don’t have the ability to look at all the different aspects. Maybe because they fear they will be somehow respected less, they don’t want to be the ones who stir the pot. I am not sure, but I am not advocating to win a popularity contest, nor am I here because it’s I have nothing better to do, or because the perks are so grand. I advocate because I live with Dementia, I believe in contributing and trying to make a difference, and in doing that at times, it means I bring things up that no one else will. It also at times made me question how much longer I can keep on advocating, it’s as rewarding as it is exhausting. It seems to be really hard right now, maybe partly because the whole state of the world seems to be in disarray on so many levels.

On Wednesday I will represent Dementia Advocacy Canada and speak at the RaDar conference In Sask. which is hosted by the University of Sask. The Radar event is specifically around Dementia and the Rural outlook and impacts felt by those living with Dementia in Rural Communities. I am really looking forward to this, it is something I feel needs to have more resources put into. I will speak about Human Rights and Dementia, another topic that has to be kept being brought to the forefront, years of people talking about it, little movement in the ways that really matter. But we keep trying, we keep keeping it in the forefront as much as we can.

Friday I will be meeting with our MLA, a week that will exhaust me, but hopefully will be steps to do more locally, provincially and within Canada, which I have always hoped to do. I will continue working with DAI in all ways I can, they will always be an organization that I will promote and value. I have submitted my abstract for the 2022 ADI conference, and continue to work with Agewell and CCNA. Somehow somedays it doesn’t feel like enough and yet in my heart I know it is enough, in fact I know that no matter how much we do it is enough.

So as November unfolds, reminding myself that remembering the most important thing is to be happy, to find the joy, to live each day, to remember the biggest lesson Dementia has taught me and that is to live today as best I can, for today is a gift, today is meant to be lived, that I may have a terminal and progressive illness, but until its time for my life to end, and it will, I must live, be present, not to look to the end for the end will take care of itself, but I will miss out on the most important pieces if I don’t remember to live each day that I am here. To remember to focus on the things I can do and no matter how many times I have to adjust or change how I do things to focus on the things I can not on the things that may be coming, or the things I may not be able to do at some point. So Today I will be grateful that I managed another day, in good spirits, with a good day winding down, after a great start to the day.

I have been working at repurposing things in my life, to use less, some of it out of necessity, some out of a want to simply life, start getting ready for a whole new chapter, reinventing my life on all levels. Some days it feels like there is a stranger living within me, somedays it feels like I am becoming at long last who I always strived to be. I am a complicated being and have become more complicated with the diagnosis of my vascular dementia. At times learning to maneuver all the challenges and changes it brought has and is difficult, some times frustrating, other days its so rewarding, some days feels like I have finally arrived, left me feeling grateful for the diagnosis, other days I hate it with every fibre of my being. But it has brought me to where I am know in this world of repurposing and refurbishing my life.

Repurposing has many different aspects to it, I have been taking clothes that I normally would wear only in certain seasons and finding ways to incorporate them into wearing anytime, this has allowed me to significantly cut down on how many items of clothing I need. It also lets me use them to the maximum of their life span. It has turned out to actually be fun, and yes I often look like that eccentric old lady going down the street, but that in itself can be fun, it makes people smile, and it seems that spreading a little cheer is something we all need to see more of.

I have also been using a skill which I had forgotten I even had that my mother and grandmother taught me in my young years, and that was to repurpose things in our house, whether a piece of furniture, or a pot or pan, finding ways to use things we have in different ways, how to not go buy things at the grocery store instead all of my cupboards and fridge and freezer have had an inventory done, I’ve been using what I have on hand to create a meal, and I must say I’ve somehow managed to come up with some pretty simple but good meals for myself. I am admittedly in part doing this out of necessity, rising costs are impacting my life, high rental costs, high costs for utilities, food. I was not expecting to be where I am today, but life took a complete turn with my diagnosis, but despite that, I am grateful in many ways that it took me to be here where I am today, my life is rich in many ways, just not in the ways that allow for a luxurious life, although luxury comes in many forms, and when I stop to think about it, my life is very luxurious. The reason I am doing this is because it feels good, it feels good to know the impact I am having on our mother earth is minimized by doing simple things and living simpler.

The other reason is all part and parcel of repurposing my life. I am analyzing everything, what I am doing, what is feasible to continue doing, changing how I am doing some things. this includes my advocacy work, giving up some pieces, refocusing some, in some things doing less, in others stepping up to do more, in some things letting them go altogether. This comes in learning to work through those moments where we somehow pile the quilt on ourselves ” that we should do more”, “that we should do better”, “that letting some things go will be letting others down”. So learning to be kind to ourselves so we can give more to the things we choose, and yes its ok for those things to change and be adjusted, it is in fact what helps keep us fresh, keeps us moving forward.

So we have to forgive ourselves for things we somehow make ourselves feel are not enough, because in fact they are enough. And yes many times people don’t like it when we change, when we do things that are different and not quite in line with how “we’ve always done them”, or what is the expected and accepted norm.

Today I had some incredible discussion and one of the things I was told, was it doesn’t matter if you are only helping one person with what you are doing or doing it on a global scale or community scale, one is no less important than the other, and that is actually healthy to change it up. It was great words of wisdom from one I admire a lot.

I am building a plan, not fully knowing if my health will allow for it to be realized, but I will continue to work on my plan through the winter months, and if God willing my health allows I will un-hatch the plan in spring. I have nothing to loose, if my health doesn’t allow, then at least I have kept exercising my brain throughout the winter working on the plan, and figure out what can and should be repurposed and brought into the next phase. If my health can maintain enough for the plan to hatched or not, it will and can never be for nothing, for I will have learnt about myself and many other things while building this new and repurposed life. I may have dementia, and things may be continuously changing and my abilities continue to change, but I will continue to challenge myself to use my abilities to have the best quality of life for myself as I can. I am grateful for those who are in the background helping me to obtain that, my circle is very small now, but those who have stuck around or showed up during this crazy journey have made a huge difference. Thankfully, the accept my worst days and brain fog, where having a conversations is challenging to my best days, they laugh with me and not at me, as one thing I have learnt is to laugh at myself, it feels much better than being angry about the situation or crying and being depressed about it. They are so good at not judging but instead embracing my lust to ride this journey out as fully as I can. Always watching and ready to jump in should I need help, but allowing me my independence, and my right to live at risk. For that I am eternally grateful.

I watch and look around at whats happening in our world and I feel so very deeply about whats happening, and I feel things so much more deeply, it impacts me more or maybe its just that I am more aware of its impact on me because I am more in touch with that part of myself, but I have also had to put a lot of that into a manageable piece as well, I can’t take it all on. It doesn’t mean that it doesn’t matter to me, but again repurposing my life so it can reflect the things that I can manage.

I am waiting to see the speech pathologist, and for some other tests from my internist2, my vocal abilities and swallowing abilities change sometimes many times in a day, but I am grateful that I have such great care, and that I have not lost my ability to write, which I am thinking more and more is such a gift that I received through my dementia diagnosis. And in closing I will leave with this thought, no matter if you have dementia or not, we all have the right and the ability to redefine who we are, repurpose our lives to be what we want it to be instead of what society tells us it should be. What about if we rethink dementia, what about we focus on the living piece not the dying.