It’s Friday, I am sitting in the semi, getting ready to head out, it has been three weeks since I have been out here, I took some time out to attend a Vascular conference in Montreal. I am happy to be in my seat heading back out on the road, I treasure these trips, this time spent together. I will have been out of the truck at the beginning of June, when I will be heading on a short trip to Seattle. Something else I am looking forward to. Life has gifted me with so much to be grateful for. On Wednesday, we spent the day out rock hounding and enjoying discovering places and spots to enjoy in the back country, and we truly found magical places. I did have a little blip, my vision, balance and coordination went, which resulted in a fall, no injuries, hurt pride maybe, it cleared after a time and I was able to fully enjoy the day, is it part of dementia yes, but actually it is part of my vascular disease which in turns become the dementia piece. It is the Vascular pieces that cause the most problems. Living with this illness is a continuous learning process and learning to understand the impacts between the various parts of our body and how it affects us when one or another piece goes awry. Luckily once my blood flow starts flowing in a better fashion, a lot of the challenges I am faced with subside, but I still have to luvecwith these events and my husband who watches for signs, he is learning all the time too, and I am very blessed that he does so willingly. I think if we can remember that any one of us can or could end up facing any Vast number of illnesses or health problems, then learning to help each other with them instead of resenting them becomes more doable. We can then support our loved ones, and we can continue ue to enjoy life with each other. We don’t have to try to ” fix it” or change it” just help each other navigate the ” bad days, or rough parts” with compassion and understanding and mostly with love. I try my very best to explain, (although I have trouble finding the right words at times), to Wayne so he understands how something like when my vision, balance and coordination went effects me and how best to support me at those times. He truly is remarkable in his care of and for me, his love for me is so evident, again I am so extremely grateful for the gift of having him beside me.
So truly trying to ensure that I make each day the best it can be that I can enjoy every precious moment of our time together. All the while ensuring I do all I can to
stay as well as I can.
That’s all for now, be well remember to be do what you can too live your best life.
I started to write this in March, then in April, we are now staring at the end of May so thought I would try to write and update.
Well its been a while since I sat down to write, life has been busy, moving is a lot of hard work. Everyone knows that I have been the queen of moving, but this move was likely the one I have enjoyed most. This move was taking me into a new chapter of life, rebuilding a new life with the love of my life, so although it was a great deal of work, it was easier to do, when you know you are doing it is all positive, every aspect of it. So it is all done, we had our first opportunity to relax last weekend, wow did that feel good. I was blessed to have the help of friends, and to spend some time with them as we got the move done, it took three trips but I never felt like I was leaving anyone, it felt like I was just changing locations, and it feels good to feel that those friends will always remain. I am extremely grateful to those who helped and those who popped by to give and get hugs and send me off with well wishes.
April 2023/This month I will get back to my advocating work as well as some meetings, it was too much to try to manage it all, while trying to relocate and get settled. I knew that I could not push to do everything or my dementia symptoms that have been so manageable would rear up and I would pay to high a price. We learn the longer we live with our diagnosis how to manage things in our lives to try to alleviate stress and the chaos it brings to our world. Stress is so dangerous for people in general but for people with dementia learning to recognize the things that create manageable stress is vital. My brain fogs have been minimal since Wayne and I reunited, being surrounded by love, just knowing that I don’t have to fight so hard each day, because I was alone, knowing I have the support has allowed me to relax more. I am so deeply grateful, for all that I have in my life today.
I have just returned in the last couple of days from the Vast Conference in Montreal, of course I have a real interest in the vascular work being done. Having Small Vessel Disease and Cerebrovascular Disease, significant in my eventual diagnosis of Vascular Dementia. The reason it is easy to understand my TIA’s. I find the work they are doing fascinating and I am happy to be working with researchers to this end. I am fascinated by the brain, the more I learn about it the more it intrigues me. I have also learnt that it has so much control, really all of it, but that it is my best interest to play nice and give it what it needs and wants, it then allows me to continue to have better days. If I deviate, if I “don’t play by the rules”, I pay the price, the price is high. It sounds like a silly way to think about managing an illness, but truthfully it is easier to take all the knowledge and figure out how to make it make sense in the most simplistic way, so for me that how I have done it. Yes I can listen and have conversations with researchers and scientists, I can understand much of the language and jargon, but we are teaching them how to relate to people in lay mans language so everyone can understand, we are getting there, we are sitting at more and more tables, the science world, academia, seems willing and wanting to engage with us, we have so much to share, it is an exchange of knowledge, it will hopefully end up with some real advancements in the future. No none of it will happen in my life time, or at least I am not expecting it to, but I am working on helping them because even if it won’t help me, it will help the many more who will be facing a diagnosis of dementia in one form or another. It is for all those who I am working on behalf of. The benefits to me are that I am valued, I am contributing I have had many opportunities with all my advocacy work. I have had the opportunity to meet so many many great people, to travel, although I stick closer to home, to Canada these days. I have learnt, about disease from different sides and views, I have grown, I have the ability to be open to look at things from a different perspective.
My own illness, is sitting, not getting worse, holding for how long I don’t know, each day is precious and fragile. I am always aware that in an instant that it can all change, but I also know that, that is true for most people although most people live is if they all have lots of time. I live each day as fully as I can. I realized that I had been talking about living well with dementia, but I wasn’t really doing a good job of it. I thought I was but I had lulled myself into thinking that, but being ” married to your computer”, being at meetings 7 days a week, sometimes many meetings in a day, left little time for actually living well. Don’t get me wrong many times and many days those meetings were my saving grace, and in the beginning those meetings and meeting others was what propelled me to doing all the things I have done, it is also the thing that helped me understand that living our best life, is something different for each of us, and sometimes we need to submerge ourselves in it until we are ready to come to the surface again, and then we start to reform our life, we start to redefine what we work and when, and if we are lucky we truly to start to life fully again. My life since diagnosis has been a journey I never expected to be on, but I can say I am not sad that I am for I have gained more than my illness has been allowed to take from me. I will continue to strive to live my life fully. I am happy, I am loved, and is there anything anyone can hope for in this life.
If we are open to seeing things from a different perspective, we allow ourselves the value of learning from others. We learn that as we grow and change so can our perspectives on many topics. Being open, being willing to challenge our own believe systems, allows us to truly grow.
I have recently had the opportunity to look at how I viewed aspects of my life, my thoughts, my perspectives. What I am referring to is about living life alone. I was ( love to say that…was ) alone for many years. I believed that being on my own was good, that I wasn’t missing our lacking anything. I was fiercely independent, I was very capable. When I was diagnosed with Vascular Dementia, that independence intensified. I was so determined to be able to care for myself, learning, finding ways to help myself, all the while thinking that I was luckier than all those who had a partner, I felt that fighting so hard to stay as well as I could meant I had to stand alone, be alone. Oh how very wrong I was. That is not to say that having and maintaining that drive to fight to stay as well as possible should not still be a very big part of life for me, but I have learnt that having a partner, having someone who cares about your well being, mind, heart and soul, all of you, you can actually relax, spend more time living and enjoying life, instead of fighting so hard to stay standing each and every day.
I don’t want to take away from those who are and do live alone, I know often it is not by choice, it is by life circumstances, and I believe we should give those who are living alone our greatest respect for it is not an easy road, although many of us try to portray that it is. I realize know that with each passing day I was becoming more and more isolated, I also believed that I did not have the right to expect anyone else to have to live through my diagnosis with me. I now fully realize that the right person will love you no matter what. Just as you would them. That we are still worthy of complete love, of being cared for and cherished. We are worthy of having someone to share the journey of our dementia and even more of this life we have been given to live.
I most certainly have and know in my heart, I never want to have to live the solo life again, it taught me a lot, it showed me how capable I am and can be, it taught me what I can survive, but I do not want to just survive, I want to be fully alive. Sharing the joys, the laughter, the tears, the ups and downs, having someone to laugh at all the blunders with makes the road so much better. I believe it is better for not only my mental health, but for my overall health, I believe it taking the stress off of getting through another day, getting through another challenge, as taken stress off my brain, meaning less dementia symptoms. Oh yes, I still have symptoms, but managing them has become easier, focusing on life rather than illness has been a great blessing.
So my view point and my perspective has changed, and hats off to all those who are still walking this walk alone, I most certainly have learnt much from all of you, and I hope you from me to some degree, but if given the choice, I will choose this one, where I have someone to share life with, yes I am strong, yes I have been so independent, but I am happy to take a breath, let go and allow someone else to care for me. That was something I thought I would never be able to do, but all it took was the right person.
I am glad I have always been willing to learn from others, to see other perspectives, to be willing to change my own thought and believe systems that have allowed my life to be so rich. I am grateful, I am blessed, I have survived tragedy and trauma’s, I have learnt from them all, it has all allowed me to look for the blessings of my diagnosis, and I keep receiving more. Life will never be perfect, it will have ups and downs, but I will willingly share that.
Today I am writing about something that I have been learning about and finding it fascinating and the research is and should be of great interest to us all. I always new that there was a connection but not until recent events in my life, and a visit with my doctor last week did I fully understand the incredible impact on my overall health and my dementia.
Honestly, having vascular dementia, I thought I was doing and I mostly have been doing all the right things for my heart and brain, and putting a big focus on my brain health, which is what I should do, but I never put much thought into the emotional connection of the two. And yes we have all heard and know about the broken heart syndrome, but it is actually so much more than just that, it is about lifestyle, about happiness and joy, feeling loved and cared for, about connections. It’s about all the life trauma’s and whether we heal them or not.
For me having had huge life changes over the last few months, after years of ups and downs, being reunited with the love of my life, ( read more of this story below) something I thought would never be possible, so I feel as though life is bringing me full circle in and on so many levels. ( goes to show, keep your heart open, let the universe bring you what you need, instead of trying to control all aspects of your life, you may be surprised with what happens).
It was after this reconnection and reuniting with Wayne, that my Doctor wanted and did a bunch more testing, he was not yet aware of my reuniting with Wayne. Then last week, a day before Wayne and I were heading back to Vernon, I had sold my car, we were going to see about buying a truck, and to take care of other business, like giving notice to my vacate my place in Vernon, ( I have until the end of March to finish that move). My doctor’s office called and said he wanted to see me and do some reassessments, so they booked me in for the next day while I would be there. It was a great visit with the doctor, he wanted to know what I have been doing, what had changed, as my tests all came back better than they have been since 2005, when he took over my care. That is an astonishing turn, considering the real and difficult challenges I faced for the last few years with my health.
I said that the only thing that changed was that my heart and soul are happy, I explained the events with Wayne and I, he said, well you know there is medically something to do that. I said my brain fogs are so much less than before, my inflammation markers are so good, my heart tests, my lungs, my kidneys and my liver tests, every single test … better, I was elated. that brought me to researching more about the heart and brain connection and how it might be impacting our dementia. Perhaps if we can teach people how to embrace life after diagnosis, if we can help teach them about going out and finding the joy in life, dealing with the trauma, letting go of the pain, of the importance of looking for and finding ways to stay connected, to feel loved and cared about and of loving and caring for others, then perhaps it will be another way to help those living with dementia, live, instead of waiting to die.
“The interconnections between brain and heart are increasingly recognized. Takotsubo cardiomyopathy, also known as “broken heart syndrome”, is characterized by a cardiovascular dysfunction provoked by an emotional or stressful situation. Similar events can trigger a neurological pathology called transient global amnesia. These conditions can occur simultaneously, although their precise connection is not well understood. We aim to present the case of a patient who experienced them and to review the relevant literature.” from this published piece:
I know full well what a gift I (we) Wayne and I have been given, not many people are granted the gift to be together after so many years apart, not often are there two people who have carried a love for so many years for each other ever get to come full circle like we have. It is a gift and one that we will not take for granted. It is in that gift that I have also received the gift of so many of my health issues to be lessened, my dementia will always be here with me, my vascular disease will always be here and all that it creates, but, all manageable, symptoms lessened. I will be attending the VAST conference in May in Montreal, and I hope to talk much more about the connection of the brain and heart and how we need to put more emphasis on helping people with this. I am blessed to have a man that puts so much into understanding how my dementia effects me, helping me navigate and helping to lessen to the effects. I always wondered if being alone was better or having a partner, having lived alone for so many many years, trying to do everything I could to help myself, to stay independent and stay one step ahead of things, I can now say being reunited with my husband, being with someone, sharing life, is a much better way, with or without dementia.
So here is part of our story: a little piece for you of and about us, about the gifts of life.
The Story of Wayne and Christine
Sometimes in the midst of all we know, we are suddenly thrust head first into an event that leaves us questioning things we never thought we would. Something bigger than us, something that defies all logic, yet it cannot be denied. And yet it is us. So it seems that if the story needs to be written and we are accepting and open hearted then the universe will put us in the right place at the right time for the story to be written. This is one of those stories, A Love Story for our times, A Love Story that began and ended in the 70’s, or so they each thought and then fate, the angels, the universe all conspired to bring two people back together to come full circle with a love that was locked away and weathered the years. The love could not be denied this time. This was the beginning of a love story, so beautiful, so tragic and sad, yet so beautiful. This is a love story that after so many years has seen the universe conspire against all odds to bring two hearts so filled with love back to finish writing the love story that began so many years earlier.
Almost 50 years earlier two very young people met, he saw her bent over the sink washing her hair, when she turned her hair up in a towel, he knew at that moment that this girl, yes, this girl, was meant for him. That very night, they headed off on their first date, a movie, a horror movie. He could have taken her anywhere, she was just mesmerized by him, so thrilled to be on a date with him, she fell head over heels in love. They became inseparable, they adored each other, that’s all that mattered, that’s all they knew and understood for sure. Soon they were living together in a tiny one room flat, in a small mining town, so happy just being together, they knew this is how they wanted to live their lives… together. We were married on August 28th 1976. Reunited in 2023, the rest of the story being written every day.
I know make my home in Abbotsford with Wayne where we will continue to enjoy life each and every day. I will continue to advocate and continue to try to help bring changes and help move things forward so all who live with dementia can live their best lives.
Please take a look of some of the articles regarding the brain and heart connection, their is many more to check out but these are a good start. I hope we never stop being willing to learn and help others and I hope we all keep our hearts open.
It appears that for the first years after being diagnosed finding the support groups is vital, finding different research groups and organizations to work with, to help you navigate and learn and understand your dementia, find and build relationships and friendships. Imperative to do, its how you find your way through to the other side of having being handed a difficult diagnosis. Many get heavily involved, they regain confidence in themselves, they learn to understand that they still have and are of great value and have much to contribute. Dementia and all that it is consumes us as we learn to navigate it.
Thats not a bad thing, for if we dive into it, we learn from others, we learn tools and skills to help us navigate, but at some point we also must learn to step back outside of all things dementia and remember to live, to get back to our life, different in many ways but to living.
We get so entangled in the advocacy and the dementia world, that we forget to live outside of it. We spend 7 days a week working on things, sitting in meetings, sometimes three and four a day, tied to our computer screen, to those who understand us. I have been one of those people who dedicated my time to many groups and organizations, wanting to help and make a difference, with little time left for actually life in real time.
About a year ago I started to scale back on some of those things and over the course of the last year I have really scaled back, being very picky on where and how I spent my energy and my time. Ensuring that my first priority must be to my life, yes I take my dementia with me everywhere I go, but it is not my life, it is my diagnosis, it is my illness. Getting back to putting time and energy into life has brought me to some incredible gifts on the life scale, I have and am with the love of my life, which is a love story for the ages, I have just moved to another city so we could build our life together. He has brought so much to my life, my illness must not be allowed to stop me from living and making the most of everyday, and it should not stop anyone from living, going and doing the things you want to with the people you want to.
It doesn’t mean you shouldn’t do advocacy or go to support groups, they are a wonderful place to share and care. But we all need to remember to work hard at finding the balance. We can and should ebb and flow with what we are involved in and doing as far as working within the dementia field. Dive in deep, step back and move in out of it as we need too and as we learn to live again. dedicating our lives to a causes ok as long as it isn’t at our own expense.
I have a few big events on the go, that will take me into mid May and thats enough for now, some of my work will just be ongoing, but I will be out living, enjoying life, still being involved but with equal time given to my actual real time life.
It has taken me almost 8 years to get that all sorted out, I have been blessed with meeting so many and learning so much, I truly believe that everyone when diagnosed should spend time engrossed in it all. As the years go by it becomes important for those of us who have the years ticking by to embrace all things in our lives that we are fortunate enough to have. I have made friendships that will stand the test of time, laughed and cried with them, those will not change as the amount of advocacy they do changes, as it certainly will, just as dementia is ever changing for us, so do does our roles within it.
It is so hard to believe we are sitting at the 5th of February, time is so precious, so fleeting. I have been away since January 19th, two days after losing my precious little Pheobe. Again, the gift of time I was given with her, she was 18, she had given me more time than I ever thought I would have with her. She was ready to rest, she was tired, her time had come, and I had to pay enough attention to what she was telling me to know it was “time”, I selflessly had to put her needs ahead of mine, set aside the grief, the sadness, I would have my time for that, but first I had to give her and allow her to choose her time. She choose her time around events happening in my life, she understood and knew so much…a lot about that coming in another blog, todays blog is about time.
so I left on January 19th, it is now February 5th. I am still not back home, I am unsure which day I will go home, it will be soon. I have been having my phone shut off, unless I am doing a meeting, which Technology allows that to happen from anywhere, so aside from those things I have been taking a total time for me time. Giving myself time to tend to the loss of my little Pheobe, tending to a lot of matters. I am well, in fact my health has been stable for quite some time know, yes I work and put in the time to help myself be well, so time well spent as the ability to maintain my health in this manner allows me time to actually live, to thrive, to not just exist. It is funny people with Dementia struggle with time on many levels, never knowing what day it is, what time it is, the days start and the days end and somewhere in there was the day, the time, what did we do with it, most often we give no thought to how we use our time. Are we using it in ways that are beneficial to our wellbeing? How much time does one waste on things that are totally unimportant. So right know I am putting my time into what is important, and important to me, not what Society deems important not what family, friends or anyone else deems important or thinks it’s how I should be spending my time. I am spending my time, because it is mine, it is Up to me to decide where that very precious time should be spent.
If I was not Okay, if I was needing help, if I was struggling, I would as always say so, but I am not, I am Okay. My Little Pheobe left me ensuring that I would be Ok, and all of that will be coming in another blog soon.
It is important that no matter if you have Dementia or any other type of illness, that we all remember to continue to live, live our best lives, put whatever time we have on this great planet earth, into things that feed our hearts, minds, bodies and souls. We need to focus on the things that bring us joy, happiness, not material things but things that make you feel good from deep within.
Time to breathe, to laugh, to cry, and laugh some more, to feel the inner peace and calm take over. Taking and using time for Fighting for one’s inner peace, is time well spent, taking the time, that very precious time that so often we get so busy we forget just how fleeting that time can be. I am not wasting time, and even and sometimes the best use of our time is when others think we are doing nothing, just sitting, just being that we are wasting time, yet it is often in those moments, that, that time brings us the most.
So as we head into another week, I hope you all find the time, to breathe, to just be, to look inside for it is there if you listen you will find and hear what your heart, mind, body and soul is trying to tell you and if you really listen the Universe will open up and bring so many wonderful blessings into your life, but first you have to take the time.
Things have been shifting for a while, late fall, early winter, I could feel it, I wrote about it, I talked about it. I had no idea what kinds of changes or what direction the shift would take but I could sense it and feel it with every part of my being.
I stayed in the moments letting it and things unfold as they were meant to, not trying to force any type of changes, just letting things unfold as they wanted or were supposed to without my interference. So often we try to control all the who, what’s and whys of our lives that we end up mucking them up. It is our nature, but we really are supposed to let things unfold and they usually unfold in a better manner for us if we do. I set out to do just that.
This has proven to mean that 2023 came at me at a hurricane force speed. The events that have been transpiring are heartbreaking and devastating one one side and life changing incredibly beautiful on the other side. There is it seems good with bad, bad with good, happy with sad.
I am a complete mix of unbelievable sadness and complete joy and happiness, emotional overload is an understatement. I will write in more detail to all of this at a later date. Today I just wanted to remind people to try to take a breathe let things unfold instead of forcing. It’s amazing at how transformative it can be.
I am taking time for myself at this time. I am not sure what happens next, that too will unfold as it needs to and wants to, I will be open to receiving what comes.
So if you don’t hear from me, I may not be writing as much for a bit, I may not be in attendance for a bit, this is time for me . I want you to know I appreciate the messages and emails, they have all warmed my ❤️. Don’t worry about me I will be fine maybe even better than fine.
It is with the heaviest heart that I am writing this blog to let you all know that my precious Pheobe has gained her wings. She has been my faithful companion for so many years, my travel partner. She has brought so much joy to my life, she has got me through so many hard times, and although I rescued her, I actually believe it was her that rescued me. She has been the easiest little dog to love, to care for. The laughter, and fun on our many adventures out in nature or on our many road trips are memories I will cherish forever.
She was always in tune with me, if I was sick she did everything she could to comfort me, if I was sad to cheer me up. She brought happiness every where we went, people talking to her, her showering them with love. She never barked, whined or complained. She was just happy to be with me. She loved others just as well, friends who she would ( holiday) with if I had to be away. Thats what I would tell her that she got to have a holiday, she always understood me and I her.
My life forever changed today.
Over the past year, well shit, in all honestly ever since we rescued each other we have been through so much, her life about me, my life about her, but in this last year it has been becoming more evident that she was getting tired, big job looking out for me, but she has been determined not to leave me alone, but the last two days have shown that it was my turn to look after her and let her now that she can know lay down her guard and rest.
It is going to take me some time to get through losing her, but I promised her the day I brought her home that I would not ever let her suffer and I made sure I maintained my promise to her. I could just write forever about all the joy she brought me, but instead I am going to share some photos and take some quite time for myself.
Rest easy my beautiful little girl. Thank you for the beautiful Memories, I will miss you forever and a day my little Pheobe.
Hard to believe we are already closing in on the end of day three of this New Year and what a year it’s already shaping into. So much and so many unexpected turns of events. At the end of 2022 and the start of 2023, another round of missed medications, a blister pack that looked like a mouse had travelled through taking bites from here and there, it was within that blister pack that the explanation of why I felt so out of sorts on the 1st day of the New Year, but fast forward to getting all those things back on track, nitroglycerin patches on, heart meds on board, makes the blood flow, makes the brain happy. Oh I hate when I screw those things up.
I started back in early December with what was almost an urgent need to purge and clean out my space. This became a daily ritual, and gifting all those things to someone else. I have been told you shouldn’t give it you should sell it, but life is about much more than money, at least for me, so day after day, drawer and cupboard and closet , one after the other the stuff went, a cleansing.
What I got from it was not just but creating space for other things to make room for in my life, it cleared my mind, it fed my soul, each piece a memory came, some made me laugh, others made me cry, some made me smile and think of someone or some other place. They say we need to declutter our minds, so that our brains can rest, I believe that. I went to bed each day exhausted from the work of doing the work, and although in truth it was a pleasant type of work, it somehow still left me exhausted. I learnt about myself during the process, I am continually learning about myself, I am always evolving, I have learnt to adapt throughout my life. During this and today on this final day of giving, I reflected on the last few days, much of what I gifted away was going to help get two new families established here, families that had to flee their homes in Ukraine, who arrived here with nothing. So gifting, giving back, I met incredible people, got to hear some incredible stories about why something in particular I was giving meant something to them. People and stories, shared hugs, no amount of money provides that, giving for the sake of giving without expecting anything in return, does more for your spirit, your heart and your soul.
So I have no idea what 2023 holds for me, and I wrote in an earlier blog that I was having no expectations on myself or 2023, but that’s not entirely true I have come to realize in this first three days. My expectation is that I will make the most of and take as much joy and happiness out of each and every day I am offered in 2023. I am here, doing well, not what was expected, nor predicted, but here I am, so every moment counts, every moment matters.
Strangely As I moved into day three of this year another turn of events, again one I am grateful that it has transpired. I am not sure of why, or why now, maybe I never will, maybe it doesn’t matter just that it has happened.
Today, the man I married 47 years ago, my first husband and I spent a good amount of time talking and reconnecting, and yes the marriage ended, doesn’t matter about the why’s, there is no fingers to point blame, there is no room for anger, bitterness. The fact is we were both young, I’ll prepared, I’ll equipped to deal with the life that unfolded. It was a different time. I am grateful that this happened today, maybe there was room for it after I de cluttered my life, my home and my mind.
A phenomenal way to start the year, the new becomes old the old becomes new. We will meet in person, there is much to say to each other. The how’s of how this transpired really doesn’t matter other than to say my sister had a little something to do with it, even though she isn’t here to know this finally happened, I believe she is seeing it from above and I believe she along with some other Angels made it happen, as and when it was meant to.
We are both different people now, yet still the same in many ways. Just equipped now to understand and see things we couldn’t years ago.
One thing that I am truly proud of through this time is that it has shown me that as much as I have tried to live true to my beliefs and philosophies is that in, fact I do. I often say that I had to learn to forgive others, even if they didn’t know it, that I also had to forgive myself for things in life, that if we forgive and yes we do that for ourselves, so we can heal, so that we can have the ability to have power over ourselves, carrying, anger, bitterness, guilt, it just keeps you stuck. Forgiveness allows you to evolve, grow, find joy and happiness.
You learn that life is hard, it hurts, sometimes so much you don’t think you will ever feel, or trust, or love, or be loved, or feel happiness or joy. Yes life is so damned hard, it’s tragic, it’s so riddled with traumatic events, some we don’t even realize that in fact they were traumatic. But it is in all of that messiness of life, all that hurt and despair, we can find, love, compassion, empathy, understanding. It is the way to having a better understanding of love. It propels us to grow, it pushes us to become who we are, or who we are not. Some times people want to stay in the familiar, in the hurt and pain because it is and has become comfortable for them, others don’t know or somehow can’t find their way through it, so it causes them to live a life of bitterness, resentment, always looking for someone, something to blame for the pain they carry.
So I am very proud that I have always said being able to find forgiveness for myself, and for others which has allowed me to grow, to evolve, to become who I am today. I am grateful that a reconnection of something from 47 years ago reminded that I am in fact living life to my truths. I alike who I have become as a person. It feels like a great start to year 2023.
It seems as though 2022 decided that it was not or is not going quietly, you would think we would have learnt but it seems that 2020 and 2021, only left people feeling and deciding that they were going to do and have everything they feel they were jilted out of during the previous two years.
The pressure and expectations people put on themselves that they were doing this or having that or going here or there, only to have Mother Nature say otherwise, doesn’t seem to matter where you lived, Mother Nature created a nightmare of weather events that left people, who were already life tired from 2020&2021, exhausted, stranded, expectations of what and how they were going to do things disrupted Trains, planes, highways, it didn’t matter, people were not able to change Mother Natures plans. And if it wasn’t Mother Nature stirring things up it was supply issues, crazy high inflation. So many things out of our control.
Maybe a lot of the airlines/ airports/ trains/ highways people could have done better jobs, but we can’t blame them entirely, they cannot control Mother Nature, and when Mother Nature throws things into high gear it has an instant snowballing effect across the country and beyond, it’s a domino effect. It is not unlike living with dementia actually, and maybe that’s why so many of us living with Dementia live without the expectations others pile on themselves. We have already learnt that like the weather, dementia unleashes itself when and however it chooses, so we have become very adapt at plan B, because we know fully well putting an expectation that things will happen as we want them to will only lead to frustration for ourselves and those around us, because when the storm of dementia stirs things up, we have either had to learn to ride the wave, change gears, change plans, be swallowed up and drown in it or ride it. I no longer live with the expectation that anything will happen as planned, if it does great if not it’s ok. It’s a much simpler and easier way to navigate living with dementia, and has really helped me manage through the last few years and most especially this last year.
2022, appears to have been harder in many different ways for people, and as Christmas approached listening to so many who were determined to make it what it was pre2020, it seemed like an expectation that just the thought of was exhausting, others were deciding to opt out of a lot of things and do something different and simpler, they dropped the expectation bar down, and who and who did that bar ever get that high. Commercialism and consumerism, $$$$$, nothing else, and we bought into it for years, piling on bigger expectations every year, it was not and is not sustainable for most. Another gift of my dementia was that it forced me to opt out of all of that, not just at Christmas but all year long.
My brain is happier, it functions better, less stress = happier better brain days. I much prefer a nice coffee, visit and a chat than all the chaos that most pace themselves through for the holidays, well even if I wanted too my dementia would not manage it, I would pay a far to high of a price to even consider trying too. So I have no problem explaining to people what works for me, if it fits into a bit of their holiday time great if it doesn’t I don’t have any expectation on anyone or anything so I am still o.k. It’s a peaceful bliss, calming time. Which watching the chaos that was created by Mother Nature this Christmas, I am grateful that I along with my dementia had a peaceful and calm Christmas.
It is also a sad time for a lot of people yet somehow they still feel they have to try to meet expectations, do this, do that, be here or there. No one should ever do anything more than they can manage, over the years, and yes I had my years of it to, especially but not limited to women, they run themselves ragged because they think everyone expects ( I have come to dislike that word immensely), baking up a storm, up till after midnight to get stockings stuffed and under the tree, up at the break of dawn to get the Turkey in before everyone wakes, and then working all day for an elaborate dinner,, days and weeks of prep, run run run, go go go. Maybe it’s ok to rent a cabin and have an old fashioned Christmas, or stay home and have one.
Anyways I believe we are being forced to think and do different and I am not sure being in the last couple days of the year we have seen all it wants to show us, but I was paying attention, I get it, I am grateful that I have a little place to call home, that I am safe and warm and I have food. I spend this Christmas season in-quiet reflection, Thinking about people who are no longer with me, well not in the physical sense, I feel their spirits, I sense when they are here. I enjoy chatting with them, reminiscing, it’s peaceful, I allow tears and laughter to flow freely, as a memory hits.
Yes 2022 feels like it was harder in many many ways than 2020 or 2021, it has also left me feeling like going into 2023 without any expectations, just letting it unfold, will allow me to take each moment and what it offers. I have learnt that I am enough, that I am ok just as I am Dementia and all, I don’t have to meet any bars that are set, and I don’t have to set any, I can just be and that is enough.
I wish for each of you 2023 is kind, is gentle, that blessings abound for all. I hope you get to rest more, take time to breathe, take walks, take naps, days to do nothing and feel good about it. I hope you all find peace within in 2023 and that we all focus on helping each other, being kind to others, that in kindness we find love and love is what matters. May 2023 be this and more for each of you, and mostly that we all learn that we are enough, just as we are.
I want to Thank you all for your support and encouragement over this last year, for the lovely messages, emails, etc. I don’t know what will happen in 2023, but I hope to be able to continue sharing my journey with you and you with me. Each of You truly are another of the wonderful blessings that I have received with my dementia.