Another month has gone, the year is somehow slipping by at what seems like record speed. It feels like I am running out of time do to all that I want to do. The day is over as fast as it starts, perhaps because my sense of time is no longer there, maybe its because I am aging. I just now I feel or I seem to be putting pressure on myself to try to do and put together the things I want to finish in this life time. In reality none of it matters, but I think about it, even though I know right here and know is all that matters. Maybe it is the changing of the seasons that have me thinking about all this.
The Other piece for me is the silliness of what my brain is doing these days, although it is offering me the ability to spend time laughing at myself. It’s like in one moment I have convinced myself that I am perfectly fine, my dementia must be a mistake, then hours later wandering about the house, saying to myself ” what the hell is wrong with you! Why do you keep forgetting to put your nitro patch on, or take your pills, or whatever is I have yet again realized I have forgotten, and then in a fit of laughter, as I sit on the edge of the bed laughing at myself and telling myself ” well you dumb ass you have Dementia, so why are you wondering why you are doing these things? the never ending bewilderment of my brain. Sometimes I think it likes to play this game with me, or am I playing with it? One minute I feel perfectly ” normal “, although there really is no such thing, then the next I realize I am boiling the kettle for tea for the 5th time, because I keep forgetting that I want a cup of tea. Why talk about this or bring it up, you wonder, because it is very much an every day part of my life living with dementia. My journey is not the same as anyone else’s, each one of us wander through it differently, but often with many things that are quite similar. If by talking about it, myself and others being open and vulnerable about it, hopefully one day others will have a deeper and better understanding.
i am feeling excited and hopeful right now, because I have been having a pretty good stretch, minimal brain fog, minimal pain. My balance and coordination are holding steady, sleep is pretty good, my vocal issues are sorta stable, but not really, but the speech pathologist and respiratory therapist are trying to help with that. I think my doing my exercise program at home, my dance routines, along with all the other things I do are really helping to give me this good run. the end of 2019 and throughout 2020 and 2021, were tremendously hard, being in and out of hospital, spending so much time in bed. Those times always make one wonder if it is the start of the decline into the later stages, or if all the complicating health related things will and are overtaking and that there won’t be a come back, every set back the comeback takes longer and is harder. It takes courage to keep fighting sometimes we or I question why i do, other days, like the days I feel like I have a lot to give still, a lot to do, that I can still make a difference. Knowing that most with dementia end up losing life to complications or other illness also makes one look at things a little differently. Anyways just a lot of the rambling thoughts that go on.
There will come a time when I will stop writing my blogs, I will stop my advocacy work, that times comes for all of us who are advocates, when we must just finish living out our lives, but for most there is things we want to see through, finish. We still like to accomplish things, we still want to be productive, valued until that time. For me I want to really work on mentoring others, getting others involved, so that as those of us who are and do advocate, retire so to speak, ofr wind down, from the advocacy world to spend our remaining time with our family and friends we or I can knowing that I have done my best to ensure that others are ready to take on the business of making a difference. I am not sure yet when I will stop but I know at some point it will. I encourage others to step up, write, use your voice, you will not only help yourself, you will help others and you will meet some very incredible people along the way. You don’t have to “know how to” , just do it, just be yourself, give the gift of yourself to others.
One thing I have learnt through this whole last 8 years is that those who give from their hearts, those who open themselves up and share their stories have taught me more than I could have ever imagined. Their stories, their vulnerability and not just with dementia, many times just about life and life experiences, those things have opened me up to look at things differently, think about things differently, have a deeper understanding of things and people. Everyone has a story, everyone has something to share and give.. be brave…your story matters.
The last couple days As I have income to realize I am in this place of wintering, I have also enjoyed the opportunity that it has given me to be think about things uninterrupted. The noise of the every day, the noise of the world removed and just clear thoughts. It gave way to thinking about this walk with dementia I have been on, it’s my eighth year walking along this road. A road that caused me to change my perspective in many ways on many things in life, what’s truly important, where my time and energy is spend and on what. It changed my view of what life was really about and for.
Yes, I have always advocated for others, always tried to give of myself to make others worlds a little brighter, and I will always be proud of that, never having or putting an expectation on anyone for anything in return. But I also lived a life of caught up in the world of having all the stuff, nice clothes, nice car, nice home, nice furniture, that materialistic world, that world that our commercialized society has taught us we must have and need. What it doesn’t teach us is that one instant it can and often does change, one instant like a diagnosis or illness.
Working through those losses and changes, coming to terms with a life that is stripped bare, and putting it back together, completely different, a rebuild. It is not easy, in fact admitting how difficult and scary it is, is not easy either. As we try to portray “ living well with Dementia”, but living well with dementia, comes through much hard work, determination, grit. Accepting the hard days, sometimes weeks and months, being willing to admit sometimes we need help with certain aspects of things. Maneuvering the sometimes daily changes, in how hoe dementia is impacting us, the exhausting work of it all. Doing it all so we can “ live well despite our dementia”, because one day well lived is a win, because once we have been stripped to the core, overcome the fear, we understand that to be here, to have this day, to enjoy, in whatever capacity we can.
If I can put my finger on the thing that has helped me thrive through this dementia journey it is simply the “ Community of People”, I have been blessed to come to know since my diagnosis. Through my work and involvements with groups like Dementia Alliance International, Dementia Advocacy Canada, CCNA, AgeWell, and others, it is here the people, the friendships, the connections, the sense of community. That community where we feel safe, cared for, respected and accepted. I am also blessed with however increasingly small circle right here in my own community a circle of those who truly also provide me with support, caring, and they are immeasurable to me.
In the Advocacy world, we share much respect for each other and encourage each other, friendships that span the globe, it is amazing how deep that runs. The immense pride we have of and for each other, the encouragement we give each other as we together try to change the worlds view on Dementia. It doesn’t at times seem like others who are outside of that world can understand it. We have often heard that they don’t think the relationships can be “real”, but they are the most real I believe I have ever been part of.
I am grateful for this community, for these friendships, as I am all the relationships I have, for without having found and becoming part of this very special community! I believe, this disease, my dementia would have overtaken me. I believe with 100% certainty this community of people that work and live and take part is one of the best gifts I have ever received. I am grateful to and for this incredible community.
We have recently lost a dear friend and advocate Roger Marple, and the loss of Roger, who I was blessed to have as a friend, and how the loss of Roger has been felt around the globe, speaks to and reminds us all of how truly special this community is. RIP my friend, you will forever be with us. Thank you for the friendship and for all you have done for all in the dementia arena.
I will leave you today with this great photo of Roger and I having fun here in Vernon.
During a visit today that I forget was going to happen, feeling so fatigued. Not sure if I would make it to lunch time without having to go back to bed for awhile, instead an interesting visit and conversation.
We talked about how as a society we don’t allow people to be sad, that people often mistake being sad with being depressed, one of which is a clinical illness. Being sad is often a normal response to life events. We moved society to this quick fix regime for all life events, instead of allowing people the time and space to move through events. It would be a normal response to “winter”, at or during difficult or sad times of our lives.
I love this term, Wintering, it seems somehow kind and caring which is what we should offer people during difficult times, rather than telling “them to get over it”, or “get on with it” or “that it’s over”, these are phrases we often use, “pull up your socks and get going”. These kinds of things to nothing to actually help someone. It actually worsens things by putting expectations on them or implying that there is something wrong with how they are managing something, based on our own unrealistic ideals. The unrealistic ideals we place on people have and are becoming very visible in the number of people undergoing Mental Health Challenges.
I am talking about this for to reasons, one I am in a phase where I am wintering, this year has been extremely difficult, to many losses, yes it brings sadness, I want to be allowed to move through the sadness, and it doesn’t mean I am sad every day, but I have moments in a day and somedays I am just sad, so I am “wintering”, doing what I need to do to care for myself, scaling back on some things, doing other things differently, more rest, more down time, more sleep. I won’t allow anyone to tell me I need to do or manage in any way other than the way that is best for me, and if a year of loss, means a year of wintering then thats what it will be.
The second reason I am talking about this, is because we are and have been in difficult times the last couple years and no end in sight, and not just them pandemic but the whole state of our world. No one feels particularly confident about the supply chain, the cost of living, wars, fuel, housing and medical situations and it is a global issue. People are on edge, stressed, angry, behaving in and with behaviours that we have and are not used to seeing. In all of this is the Mental Health issues many are facing. Maybe some would rather call it cacooning, many feel that we should move beyond these things within days and weeks. I wonder if we wouldn’t offer people the opportunity to “winter” if we might not help people in and with a more positive outcome than by continuing to but unrealistic expectations on people.
I am including the name of a book about Wintering here which I have ordered for myself.
Wintering: The Power Of Rest And Retreat In Difficult Times :
by Katherine May
This is also what we do with many living with Dementia, when we see them behaving in ways we don’t think appropriate, we use pharmaceuticals to change them, to sedate them, rather than look at what might be really going on. Many with Dementia are treated for depression, I question is it truly depression or are they exhibiting a normal response to abnormal things happening within them and to them. Are we recognizing that they too may need to ” winter” as they move through the never ending changes as changes occur in their disease. We are quick to try to medicate everything, the quick fix ideals are proving that they don’t work. Maybe we need to create spaces and places for those of us living with dementia, that allow us to just be instead of trying to make us fit into someone else’s ideal of what and how we should be.
So I hope we can think about the terms/phrases we use, language is important, and stop trying to put everyone into the same box. Not everyone will move through life events as we will or do. No matter what the event is let’s try to support people in ways that promote wellness, mental, emotional and overall wellness. Space and Time, Rest and Quiet, Heal and Recover.
I hope you all take and do whatever is best for you as you encounter life events.
It’s been an early start here in Regina, last nights events were wonderful, meeting so many for the first time face to face, human connection… so many great great hugs, I don’t think we hug enough. Ending the evening with a lovely dinner and conversations.
I started to write this blog on my first day in Regina at the Agewell Conference, however, I never got back to it, in part because as a person living with dementia, and in talking to many others, even for them, it can and is quite overwhelming. These conferences are busy, we tend to put a lot of stress on ourselves to present well, whatever it is we are presenting. Our stories matter, our perspectives matter, so we not any one else the pressure is and does come from within, because we understand the importance of our involvement. We are always aware that our advocacy work is not about us, it is about the many others who we are speaking for.
So this morning I am back home, my little dog Pheobe, having a sleep in, so I am taking the time to write and catch you up on my thoughts now that the conference is over. I will put some pictures here and there from the event.
Travelling alone through Airports is becoming more of a challenge, getting help is always a challenge, somehow they think you should only require help if you need a wheelchair. It is difficult and frustrating when you ask for assistance to get where you are going, and when you say no you don’t require a wheel chair, and try to explain that you have early onset Dementia and need guidance to your gate, they look at you and say well “just follow the signs. You then have to explain how all the noise and people etc. overwhelm your brain and then you can’t “just follow the signs”, its exhausting sometimes living with a mostly “invisible illness, sometimes I feel like wearing a shirt that says, “I have dementia, please help if I ask.” Upon arrival into a waiting Taxi, the taxi driver a lovely young man, who along with his wife and children, had only recently moved too Regina, to try to build a better life work balance, where they could work to live not live to work, I really enjoyed the conversation with this young man. Once at the hotel he wrote his cell number down, told me if I needed to go anywhere just to call and he would come get me. Service at its finest, little did I now a short time later how important that little piece of paper would be…checked into my room, getting myself settled and organized for the coming days, laying things out to ensure success, and suddenly, I can feel the panic rising, the anxiety coming on, oh dear God, I have lost my envelope with my speech and all my important papers for the conference… this is when my brain becomes overwhelmed, can’t think, panic, absolute panic, tear everything apart nope its gone, before the anxiety overtakes me, I head out for a walk, which I have taught myself to so in these moments, walk and just breathe, let my brain settle and quiet stop the panic. I realize at some point trying to travel alone will not be possible. Once I am feeling more like I can process and make a plan I walk back to the hotel. Then it hits me, maybe I left it in the Taxi, as I had to look up the hotel I was going which was in the envelope, the phone number, find it, a frantic call to the young taxi driver, ah, yes he says, I have it right here and I will just finish with this passenger and I will message you when I get to your hotel. True to his word, I went and sat in the lobby, terrified I would somehow miss him, he arrived with a big smile and I hugged him. so often we can never retrieve things lost in the world of Taxi’s. He told me to text him whenever I needed him during my stay, and he was sitting waiting for me yesterday to take me back to the airport. Tremendous service by this young man, I passed his number on to others, I will tuck it away in case I get back to Regina, which by the way is a lovely City, they did a terrific job of hosting all of us. And wow great restaurants, just wow. I don’t get the opportunity to eat out often so I really enjoyed the exceptional food and service while there.
At the first nights welcoming event, the first person, I was to see was Paul, who I have known, via our connection through DAI’s support groups and then working with various groups and organizations, Research Groups like Agewell and CCNA( just two of many), but we had never met beyond Zoom, and we literally collided, I will try to upload the video, we were lucky enough someone captured it. That started what would be days of tears flowing, moments of pure joy. If there was ever any doubt about the importance of personal interaction and connections, this event showcased how impactful it is. Not just for those of us living with Dementia, but also for the researchers and others that we work with but seldom get the opportunity to come together face to face with. This work, these connections, the work we do with these research groups and organizations are, as we discussed a lot over the time in Regina, the things that help us stay as well and vibrant as we are. I wonder at times if others understand the importance of staging engaged in these ways, it is mentally stimulating, socially engaging, which all help our brains, yes we tire easily, yes we need days to recoup sometimes, yes we have to deal with the issues of becoming overwhelmed, confused, fatigued, but the benefits out weigh all of those things. And if we learn to manage all the effects of those things, then we can and do stay overall much better and I believe help keep our illness at bay for longer. We talked at length about it and everyone with dementia at the conference felt the same way. So please look at getting engaged.
I am also including a picture of a book, funny how it becomes so apparent at how fast my brain forgets things now, I do things, often feel like I am doing nothing, because I simply forget, and this book, which by the way my talk was on Autonomy and Independence. I was presented this book with Thanks for helping and participating in the making of this publication, I of course had no recollection in it at all, another reminder that my illness is truly invisible, apparently to me as well. I laugh about it because i am always so truly surprised when I hear about things I have been doing, and I look stupefied saying..REALLY???
This morning waking to what is the first taste of chilly weather, sweater weather, fuzzy warm socks, a sign winter is suddenly fast approaching. I have decided with only 15 days until I head to the CCNA Conference in Toronto, it is time to get a couple pots of soup on. Fuel up on good nutrition to help keep me going strong for a bit longer.
So although I am tired and I feel the fatigue, I am also, inspired by so many from the conference, I am filled with hope for all the amazing work being done, filled with gratitude for the opportunities offered me, for the connections, and oh my all those amazing hugs.
This is how I have described myself in recent days, I have tried to explain that I am “Life tired”. Sometimes it’s hard to explain, or for someone to understand, too many years of too many traumas and losses, have left me exhausted. The loss of my sister has brought it all to the surface. Yesterday, I spent the day going over the years and realized that it is not a wonder that my health took a hit, I wonder at some moments how or why I am still standing. I won’t go into details about all the losses or traumas associated with them, just that there has been an extraordinary number of them and many consecutively, all of those things I have realized have made me life tired and then this morning I woke up to the picture and piece below, which seems to perfectly describe me in this moment of time. A moment of time that I fully realize will change as life is fluid, ever moving and ever changing even if it seems we are standing still. I am giving myself permission to accept that this is where I am, to do what I need to do to promote my overall well being, in all of that it means if like the other day as I made applesauce, suddenly the tears just started to flow, to just let them. Life is hard and sometimes we keep going because thats what we have to do, but then one day, you are given the time to reflect deeply, come to see things through a different lens, have a deeper understanding. I don’t know the why’s or how’s of what makes some have a life full of trauma’s, while others appear to have a life filled with nothing but glorious moments. I have just learnt to accept that we are all given our life and it plays out as it is meant to, it makes some hard, some greedy, some cold, some with the warmest of hearts, and it doesn’t seem to matter where in it all you are, some who have what it seems is everything are cold, bitter and angry, others who have had nothing but hardship and tragedy are the softest, kindest warm hearted people you could meet. No reason to it it seems, at least not a reason that is easy to understand. So I try not to, I try to accept, I think there is bigger powers at play, so for me accepting, acknowledging helps me continue on, without that I surely would not be standing today. I try each day to be kind and caring, to be non judgemental, because just like me everyone has a story, and what you see in a short interlude with someone, does not give you a true understanding of them or what brings them to be as they are today. I also want to say that for each of us ending up life tired can come from many different things, not just loss and trauma, but even things like our last few years of pandemic, uncertainty everywhere we look, with rising costs, housing, health and many other systems in crisis, global out look that is not pretty these days, crime, on and on it goes, those things can make one “life tired.” It is ok, to admit you are tired, it is ok to slow down, to rest more, it is ok to admit it, we are not meant to just “suck it up” to be ” tough” to ” get over it” we are meant to acknowledge and feel what we feel, so make room for those around you to do that, don’t try to fix it, don’t try to make them feel better, acknowledge and allow them to be where they are and allow them to move through as they need to, help if and when you can, not because you have a never ending need to fix everything and everyone around you. We are all broken in some manner, we have all perhaps allowed society to push us to push through rather than allow ourselves time and space to do what we need as we too. I am sure it is why I am always looking to be in nature, to find the peace that resides there.
So for now for as long as necessary, for as long as I am “life tired”, I will continue doing for myself what I can to honour myself to honour my mind, body and soul. I will remain doing the advocating I do, its been a busy stretch, but a good busy, and last week I was honoured to present at the CCNA’s Science days, along side and with our Canadian Health Minster Jean Yves Duclow and Howard Chertkow Head of the CCNA. I am proud of the work I am doing, I am proud that despite my dementia, I am continuing to do what I can to make a difference. This week sees me heading to Regina tomorrow to take part in AgeWell Conference, then on returning home I will start to ready for my CCNA Conference in November in Toronto. All of these things keep me moving in the forward motion, reminding me that I am still here, still standing, still living. I am so excited to meet so many in the next week that I have only ever met online so to meet in person and have that human connection will I am sure feed my tired heart and soul, and then to look forward to more connections in November, will I hope leave me less life tired as I move into 2023.
I hope you enjoy this piece below, I love following her, I find she really resonates for me. after that I will talk about my other topic today A Call Out.
I’ve tossed and turned in bed for hours, yet still I’m listless for reasons that even I can’t understand. My body is tired, yes, but it’s so much more than that. There’s something so much deeper than I don’t think sleep will ever remedy- Parts of me that are far below the surface cry out for rest and solace… The restlessness that pervades the darkest parts of my soul has been quietly growing for some time, and now, it occupies my thoughts more than any other. I’m not unhappy or sad, but there’s just this silent angst that I can’t quite put my finger on… I don’t know how to ease the stirrings of a spirit that needs to be calmed. I’ve known for some time that I need more in my life- more of the things that bring me joy and fulfillment and less emptiness from the people and things that don’t move me. It’s not a simple cure nor an easy fix, but I know that I need to seek the adventures and activities that make me come alive- My deepest truth is that my passions are painfully dormant, and I need to spark those fires that have been calling out to me for as long as I can remember. So, as I lie there in the darkness of twilight, my mind races with a thousand thoughts of the things I know I need, the people I need to find and the places I need to go- Maybe that’s the answer to my listlessness or perhaps it’s just a start. I can’t honestly say that I know where my path needs to go, only that to stay stagnant any longer will tear me apart. As I drift peacefully off to sleep, my mind is full of the thoughts of a heart set on fire, And I feel the faintest smile creep across my face. Maybe I don’t know where I’m going or even how to get there, But with love in my heart, fire behind my spirit and hope in my dreams, I know that I’ll end up just where I’m meant to be. Happiness. I can’t ask for any more than that. |ravenwolf I’ve tossed and turned in bed for hours, yet still I’m listless for reasons that even I can’t understand. My body is tired, yes, but it’s so much more than that. There’s something so much deeper than I don’t think sleep will ever remedy- Parts of me that are far below the surface cry out for rest and solace… The restlessness that pervades the darkest parts of my soul has been quietly growing for some time, and now, it occupies my thoughts more than any other. I’m not unhappy or sad, but there’s just this silent angst that I can’t quite put my finger on… I don’t know how to ease the stirrings of a spirit that needs to be calmed. I’ve known for some time that I need more in my life- more of the things that bring me joy and fulfillment and less emptiness from the people and things that don’t move me. It’s not a simple cure nor an easy fix, but I know that I need to seek the adventures and activities that make me come alive- My deepest truth is that my passions are painfully dormant, and I need to spark those fires that have been calling out to me for as long as I can remember. So, as I lie there in the darkness of twilight, my mind races with a thousand thoughts of the things I know I need, the people I need to find and the places I need to go- Maybe that’s the answer to my listlessness or perhaps it’s just a start. I can’t honestly say that I know where my path needs to go, only that to stay stagnant any longer will tear me apart. As I drift peacefully off to sleep, my mind is full of the thoughts of a heart set on fire, And I feel the faintest smile creep across my face. Maybe I don’t know where I’m going or even how to get there, But with love in my heart, fire behind my spirit and hope in my dreams, I know that I’ll end up just where I’m meant to be. Happiness. I can’t ask for any more than that. |ravenwolf
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So part two of today’s writing, I have been struggling to write lately, likely because of being life tired, as well as having to really space how much I do and when I do it, overloading a day of too much, means days of doing nothing, my brain, my fatigue hits harder, so adapting and zeroing in on what is important each day and being content if it only is one thing.
Today I want to do a call out to all those living with Dementia, all those loved ones of someone living with Dementia. To get involved, to use your voice, to help get the changes made. We are I believe in unprecetented times, and we are at risk of having the progress that has been made fall to the wayside if we don’t keep at it. I know we are hearing and seeing much about how we need to change what and how we are advocating because years of doing it the same way are not getting the results wanted or soon enough. But if we are to do that then we need others to step out of their comfort zone, step into the world of advocacy, research, as without fresh ideas, and for those of us who have been advocating for an number or years and some for a very long time, to embrace the new ideas, be willing and open to trying new ways, giving room for others to shine, remembering that if they shine if some of the new ideas or ways move things forward, then we all win, it is not about us as individuals it is about the greater good. It does not mean that those before us failed it means they have paved the way, shone the light, been the beacon. There is so much work to do, there is not room for “self ” in it. Except in the sense of self satisfaction to know you are doing something that you can feel good about.
It is vital, that we have fresh perspectives, fresh ideas, for we are all fighting an illness that charts a course of its own, none of us know when it will suddenly take off and we will no longer be able to continue doing what we are doing. Without you stepping up, everything will eventually stop, all the great strides made, all the changes ( even if they seems small or not enough), will be for naught, without you stepping up. You may feel is if you have nothing to contribute, as I once did, sometimes I still feel what I contribute isn’t enough, but I have learnt that whatever I contribute is better than doing nothing. I have also learnt that there is so many great people and opportunities that one doesn’t now exist especially when in the world of Dementia we are all faced with having so much taken from us, that to actually find this place where we are accepted, valued, encouraged and given opportunities to contribute and meet so many fabulous people, that we end up with a life that is vey rich and full and gives us a focus that is beyond, the losses and sadness that prevails in the dementia world. So I encourage you to get involved, don’t sit at home or let your loved one sit at home thinking their life is over. Life has you knew it may be over, but a whole new chapter awaits. Please come help us carry the things forward, we are waiting for you.
And now I must get ready for my Doctors appointment, not sure why he wants to see me, but not surprised either, I am very fortunate that he stays on top of things with me so well. Then home to get packed ready for my trip tomorrow. Hope you all have a great week.
Arrangements made for Thanksgiving Weekend in Canada
I haven’t written again for a bit, too much going on, my mind overwhelmed with life stuff. Today I just finished my appointment with the speech pathologist, my ongoing issues with my voice disappearing, vocal abilities, so was surprised that it was an hour long appointment, but I have been waiting 2 years. So ongoing appointments and work with him to try to help keep my voice going for as long as possible. I am thankful that my doctor persists until he gets me what I need. I am very grateful, given the state of our health care system at present.
I spent Thanksgiving with my brother and my late sisters family, the first Thanksgiving without her, it was hard, but everyone managed, and with about a half an hour or so left of cooking time, we lost power, but once that was all sorted we were able to pull off dinner, may not have been as it has been in years gone by, but we were together and that mattered.
It was lovely going for a fall drive, these are some of the photos, I kind of felt like it might be the last trip Pheobe is able to make, so I tried to make it fun for her. the picture of the mountain is the mountain where my sister lived.
The other thing is advocacy, recently and as so often we talk about why we keep advocating when little seems to change, but I believe we are making changes, however small and even if just one person at a time, any difference we make, any influence we have, is worth it.
There is another side to it as well, it is the connections we make, the people we meet. How it provides us purposeful and meaningful things to do. It gives us a reason to keep going, it stops me from just giving in and letting it take me. Maybe nothing will change in my time, but if we have made a difference to one person or to each other, because we have gotten to know each other then that is reason enough for me to keep advocating. I can’t look at the what has and hasn’t happened too much or if it has happened in the way I hope it would. I have to focus on the positive pieces it brings to my life. I have met people from around the world, I cherish each person and the relationship that became because of advocating. I have the utmost respect for the advocates who came years earlier, some who are still advocating, I understand and can at ti es feel frustrated that things aren’t happening fast enough, the clock is running for us, we know it, time is of the essence, sometimes we wonder if anyone else out there wonders about the pressure we feel to try to bring about change, before the disease takes away our ability to continue using our voices, whether literally or by other ways of the disease progressing. We all want change in real time, in our time, I try to remind myself that if at the end of the day I can have a small part in making sure change happens for the many others who are yet to be diagnosed, then my time since my diagnosis has been well spent.
I am exhausted all the time it seems, life is taking its toll, everyday things are harder for me, I hide it well for the most part. But I know, I can feel the differences the changes. I am ok with it all, life is life, we get what we get. I have tired to navigate it with as much grace as I can, I try to keep my hard hard days hidden away so no one has to see them. It is not always possible but I try. I am making incremental changes as I go along, trying to ensure that I continue to make adjusts that make my day to day life easier and simpler, less to look after, less clothes, less belongings, less of everything, so that what energy I have in a day, and it disappears quicker all the time, that energy can go to the things I enjoy, finding joy in simple things, finding in joy in the connections I have made, finding the joy in my advocacy. I hope one day we can all have the resources we need, that we can have people be willing to learn and understand, but I think as more and more young people get diagnosed those things will change. They will have too.
Ok can you believe we have arrived in October, 2022 is sure showing us many unexpected events as the year unfolds, many of them we would rather not have to experience but life is about experiences, and learning, living and dying.
I am going to share with you this post wrote yesterday about my day and I’ll show the pictures as well :
When you go out in woods today, the woods today, when you go out in the woods today… I remember this from When I was a little girl and today these are my pictures from my day out in the woods. But I have to tell you that I was so happy to be in nature, to feel the earth, to feel the trees…. Hugging trees is awesome…. And as much joy and happiness nature fed my soul today …. I found myself really looking and listening to it, I suggest you get off the known trails, go deeper go further, sit with the earth… look and listen, the trees, the shrubs, the ground itself is hurting its like you can feel it crying… global warming is real, man’s destruction is real… it broke my heart as I tried to feed it good energy and let it now I care…. Listen it will tell you, look 👀 really look it will show you… I am grateful for being able to be in Nature today for all that it does for me each time… Exploring hidden gems off the beaten tracks … a great way to fuel my mind, body soul as we start October.
Photos by christine
continue to read after the photos more bits and ramblings after the pictures I know it’s a bit of a long blog but I enjoyed writing it
I love this tree growing out of the old tree, eternal life
Being in Nature is so so very important to my overall well being, my brain functions better after being in nature, it settles it when it’s overwhelmed and tired, it has a soothing effect. The more I am in Nature the better I am able to maintain that sense see of calm during the days I am away from it. Going for walks close to home is good as we for the exercise is so important for my blood flow for my brain 🧠, but it is not as being immersed totally in Nature away from the sights and sounds created by man, those things stress my brain. The never ending sound of cars, trucks, sirens, horns, banging and clanging, screeching of tires, those things exhaust my brain, so add in trying to ask my brain to function in it all and it’s truly too much, the answer is as they : the answer is blowin in the wind… quite literally get me out in nature away from all those human elements that create so much stress on my brain and watch what happens when my brain gets happy, when my brain no longer feels overwhelmed trying to manage, it makes me feel like a completely different person, I can think and put my thoughts together easier, I can come home and feel better, sleep better. I was always drawn to nature, but dementia has amplified my need for it, it has somehow shown me how to help it help me… holy isn’t it amazing how amazing our brains are, mine fascinated me about how and what it’s been snd continues to teach me as I hug along this journey.
I forget things as fast as I do them know, I see people I know I should know them but can’t remember who they are or how I know them yet I know so do, yet others and no rhyme or reason that I have figured out stick and even if I don’t see them often or maybe haven’t for years and suddenly do I know exactly who they are. I don’t understand much of the hows snd whys of it but I think a lot of it is tied to feelings and emotions, and how someone made you feel or how you were connected to them emotionally at some point… that’s my own theory… well mine and my brains. I also am a lot more emotional than I ever have been and I no longer have the ability to control those Emotions as much as I would have in the past.
The other thing I am leaving here today is a link to an article I found quite interesting and interesting for a few reasons. The big reason is that many of us living with Dementia have what we classify as night terrors. This article is about nightmares and dementia and the link between the two. So are what we have and call night terrors amplified nightmares, snd the nightmares of earlier days before diagnosis a sign of tbe pending dementia…. It’s good for thought, snd I think back to my mom telling me she lived with me before her passing that I would have such bad nightmares my screams would wake her, but she couldn’t always wake me out of them, interesting that was back in the 2006/7 years, and before that my husband used to tell me how bad my nightmares where. Fast forward to 2015 snd the diagnosis of vascular dementia. It’s all interesting, yes I have a fascination with my brain, but can you blame me… better to be fascinated by it, challenge it, try to understand what makes it hurt, what makes it happy, than to be angry snd blame it for this journey we are on, because in truth did my brain let me down by giving me this dementia to live with or did I with some things in my control others not, hurt it and cause the dementia both me and my brain know have to try to navigate.
This is me trying to navigate life within the parameters of my dementia. I question myself, I question my brain, always looking for ways to stay afloat. So please read the article in the link below
This is not something I would have thought I would be writing about, I witnessed it, worked with people dealing with it, but never somehow expected even with my dementia to have to deal with it myself.
I am talking about infections and the havoc they play on us and our bodies and particularly our brains. We always watched for signs of delirium and change in behaviours always checked for UTI’s as a probable cause. No I do not or did not have a UTI, but what I did experience over the last couple weeks taught me that we have to be much more aware of what any type of infection can do and the chaos in the brain, and with dementia it rears its head in ways that actually for the first time I can say I was actually afraid. I thought my dementia had suddenly taken off.
It started one day just trying to get onto my computer, couldn’t manage it, had to leave a meeting, could not understand what anyone was talking about. I could not find my words and although I do struggle to find the right words at times, this was different, I could not spell words either, and although I have trouble with letters and numbers being written down in the wrong sequence, I could at least still know the words I was trying to use, my anxiety trying to manage the simplest thing was through the roof, anxiety was not something that is normal for me, panic attacks, and a brain that I just could not understand what it was and was not doing. It is so hard to explain the effects and how it feels except that it is actually terrifying.
It was as though I was losing all aspects of reality. Finally on Friday I was put on antibiotics, for a sinus infection. Likely created by our recent poor air quality. Yikes, something I am going to have to really keep an eye on. I, also living alone realized how dangerous this could have ended up being for me, my sister used to check in so, that check in with her recent passing is no longer there, I am going to have to put other checks and balances in place now. It made me realize how dangerous it could be for someone on their own, and how a seemingly small infection could have dire effects for people. Time for another chat with my doctor, creating a list for myself so if I start to feel any signs or symptoms I can get help sooner, rather than having it escalate to the point it did before knowing something needed to be addressed. It’s hard because often we just think its one of our bad brain spells, or brain fog, that comes with Dementia so it’s easy for us to miss that something else is actually at play. Again learning curves.
Last night I was after a very restful and napped filled day able to go to a concert Jesse Cook Concert, the music soothed my brain, I could feel it relaxing as it absorbed the music, I cannot remember when I was last out in the late afternoon or evening, but being able to be lost in the music was wonderful. I listen to music a lot on a daily basis but and start my day with music and then meditation and exercising, but somehow this particular music was just what my brain needed.
I came home from the evening with my brain relaxed, it is true music can change the path your brain is on, mine was so overstressed from all the effects of the infection, and it was tired, it relaxed, I was able to go home, take my night medications and antibiotics and sleep really well. I woke this morning feeling like I have turned the corner. Part of keeping the anxiety at bay is learning and understanding what is happening and why. If it is the dementia learning to find ways to live with and adapt ways of doing things, if it is something else being able to access the help. Once again I can pick up and work on the joy of today.
Funny I have had bigger health events but this was the one that scared way more than any of the rest, because it overtook me without me being aware of it. So writing about it is to make others aware to watch for infections, if you feel off go and get checked out, don’t let it linger. Infections impact the brain whether you have dementia or not but adding dementia to the mix can truly create situations that none of us want. It truly makes me feel so deeply for those in care who end up with UTI’s and other infections and the effects that it causes them, and how frightening for them it truly is. It is true that we can truly never understand until we go through things, that I have learnt, so many lessons I have received since my diagnosis and one thing is people with dementia are always learning it seems.
So as we begin a new week I hope you all have a great week, I will be focusing on self care to complete recuperating and ridding my system of this infection and allowing my brain time to recalibrate.
I think we could all and should be taught more about the importance of music and the brain from very young ages. Funny how we seem to learn a little too late so often. Perhaps revamping our educations system is long overdue.
So as you go about the week, turn off the tv, turn up the music, and dance.
I have forgotten when I last wrote, there is a lot of reasons that my writing is becoming more sporadic, but mainly because my brain has been needing to rest, a lot of rest. My brain once again feels like if you peeled open the outer layer of skin, lifted it from my forehead and peered in you would see a very bruised brain. That’s how it feels right know, very tender and bruised. Don’t know of any other way to describe it. When my brain hurts, things become much more difficult to manage, simple tasks remain undone, or I try to do them which leads to anxiety, and boy oh boy to I feel for people who suffer anxiety, it’s a new thing for me, and I knew it was awful and difficult for people but until experiencing it had no idea how difficult.
A dear friend and fellow advocate from Singapore recently posted a slide that perfectly describes what is happening for and with me at the moment. Emily Ong, thank you for allowing me to share this here ( picture below, thank you for all your advocacy work, you truly are a blessing to us all, I am so glad I got to know you, mentor you and form a friendship with you. We need many more like you to step up and get involved in advocacy as so many of us just by the nature of our disease are having to slow down.
This is what I have done to my brain, again, it’s what I do when I am on a good stretch, I overload and overwhelm my brain. It crashes, I crash, it forces me to go quiet, it says no not today, maybe not even tomorrow, it lets me know. And it truly is like a computer that is running slow or crashes, too much open, you have to go in and clean it up, but with our brains that are trying to manage a disease, cleaning it up only happens when we allow it to rest and recharge. Recharging takes longer each time, push to hard things like TIA’s happen.
Speaking of which so during this last spell, something unusual happened, my dog, who normally just curls up beside me at night and goes off to sleep for the night and stays there till morning, but on this night, she started pushing at me, until finally because I wasn’t responding as she wanted, she jumped on me started pushing her face onto mine until I opened my eyes to see her peering into my eyes, with a panicked look, she would not stop until I moved her to the side and actually got up, so I believe either a brain event happened and she was aware or I stopped breathing and wasn’t restarting as I should. That happens with severe apnea, one day ( if I am lucky that will be my out from this world my brain will just forget to send the signal for me to restart breathing.), Can’t think of a more peaceful way to go, but don’t think it will be for awhile, but then again one never knows. Anyways she is so very in tune with me, and somehow I think it keeps her going, looking after me.
That was likely the result of me overloading my brain and it’s easy to do because when we feel at our optimal best, we want to do everything, so we try, lots of meetings, lots of writing papers, speeches those kinds of things, a lot of advocacy work. Plus a lot of trying to do all the fun and joyful stuff. The trick is that we have to come to a place where when this happens we have to readjust, re-adapt, and make a new plan of how much and what we can manage, accepting it is part of the process. Allowing and knowing it’s Ok, to take breaks away from everything, all the stuff that is overwhelming your brain, away from screen time, tv time, meetings, all of it. Turn on the music let it soothe your soul, let it calm your brain. Rest is more than OK, rest is the only thing that allows our brain to recharge.
It’s a hard battle within ourselves, because we want to do so much, acceptance doesn’t always come easy, and sometimes our brain itself, after all it’s in control, tries to trick us by sending messages that make us feel as though we can somehow use super powers to continue doing things.
I am continually learning, ( yes people with dementia can and still do learn, and understand things), so I am continually learning about how intricate and fascinating the brain ( my brain) really is. I have learnt to have a great deal of respect for it, to try to uphold the fact that it needs to be looked after, brain health is important. I wonder why we were never taught these things during our formative school years. We should teach more about the health of our bodies, brains, more about nutrition, the importance of rest, all of those things are lacking in the education system.
A dear friend of mine, from Vancouver Island was here yesterday we met for a good visit and catch up, her move to he island was recent and I am so appreciative that each time she comes to town she ensures we get a visit. I like that I don’t have to try to be ” normal” that however I show up is ok, I like that she calls me out on things, like we were taking about my brain ” letting me down” ( truth is I Have been letting it down by trying to force it to do more than it can manage at this point), yup she reminded me of that, she reminded me to give my self a break, she reminded me of how much I do actually do ( another thing my sister in law also reminds me of so often, how I often don’t feel like I am doing anything or enough of anything, when in fact it is just that my brain is not remembering what have been doing, and I forget that I forget…good grief it is complex isn’t it. So I so appreciate the visits and the reminders to be gentler with myself. I tend to be very hard on myself, a left over trait from the former me. One of my other friends stopped by because he said he had messaged two days earlier and I had not answered, so he came to check on me, and said, “I Think your brain is not working very good right now.”.yup the friends that get it, accept it and understand it are my hero’s. It’s easy for me to miss things, for time to lapse, because I have no concept of time anymore, so just being accepted in whatever my day is like today is worth more than words can say. That they put in the effort to stay connected share laughter and tears, and find joy doing whatever with me, knowing that I may not always be able to remember to reach out. So very grateful, So very blessed.
Sunday night I am going to see Jesse Cook at the Performing Arts Theatre, the tickets were a gift my friend from the island, music is really great for people with dementia, he is an amazing guitarist, my friend Marijon will join me, I don’t generally do evening things, but for special things, I work on revamping my day to allow for the event. I am so looking forward to it. I haven’t been out to anything for a long time and as we discussed yesterday the timing is likely perfect because it will soothe my bruised and sore brain.
I have my speech ready for my meeting with the Minister of Health Canada, next week, looking forward to that. Again a lot of brain power used for it’s preparation. Hoping good things come from it.
So as we head into another weekend, another week that has gone by, I feel as though I am somehow in a race against time, so its hard not to put pressure on oneself to try to do all the things I would like to do before I no longer can, but reminding myself to pace it out perhaps one main project a month, learning a different way so that my brain can have an easier time as we march along this path together. I hope you all enjoy this first fall weekend.
Its a topic we hear about and talk about all the time and at times it seems almost like when we are asking and looking for help and answers as to the why’s and how’s we are ungrateful, which in fact is so far from any truth. So what am I talking about? Well it’s about the fact that everywhere we look, for example I had a newsletter come today almost every thing listed was for and about caregivers and caregiving. Again, we are grateful that the caregivers are getting the much needed support they need and ask for. They truly are a deserving bunch.
The issue is why aren’t we the people living with dementia getting the same? I am not wanting to put blame anywhere, I am truly wondering why the vast difference? Is it because people with the lived experience find it easier to just let the care givers do and be the voice? Do people with the lived experience somehow feel like no one really will or wants to understand them from their own viewpoint? Do people with the lived experience somehow feel like no one actually cares about what they personally feel or think? Why oh why are people with the lived experience so afraid to step up and speak out? Do they not want to offend or upset their partners and those providing care? Has the years and years of stigma around dementia been ground in so deep that those with dementia still feel they need to hide it, not talk about it? Do they still feel like they have no value after the point of diagnosis? I see people with the lived experience who have become part of peer to peer support groups like the ones run by DAI http://www.joindai.org, and Dementia Advocacy Canada, and I have watched so many people with dementia find their voices and find purpose, and they come alive at those meetings, and many have gone on too contribute to their own communities, countries and the global voices of dementia, they have and are doing incredible work. However there is still a vast number of them who won’t, or can’t or don’t feel they have enough to offer to step outside of the support groups. the support groups offer a place of safety, no judgements, just acceptance, is that the missing piece that other venues have yet to be able to offer?
Are those living with dementia still feeling as though they will be judged, or treated as though they are less than equals with others?
There has been a very noticeable shift in recent years in how those with dementia who do step up and contribute are seen, and treated. In most cases they are treated as equals. I describe it this way, its like bringing everyone to the kitchen table, talking, listening and sharing, your background, your chosen profession, none of those things matters at the kitchen table for at the kitchen table we are all just people. There is no hierarchy at the kitchen table, just people. Too often too much emphasis is put on what we do, what we do does not make us who we are, yet people spent years equating them to be. Research is about much more than labs, and test tubes and people in white coats.
The shift that has happened particularly within the research realm is that researchers embraced working with those with the lived experience, collaborating, working side by side. The benefits for them is they get to learn from us, understand right from the source what we need, not trying to do research based on assumptions of what we need. We benefit because we get to help ensure the research being done is for us, with us, not just about us, we make connections, we contribute in valuable ways. It provides purpose. So I am not sure how we reach all those sitting feeling like they are not valued and or understood, because there is places for you to feel like you are contributing, like you are of value, that you belong, that life is and can remain vibrant. It may not be life as you knew it, but it can be just as meaningful maybe even more meaningful. The big question is how to reach everyone and encourage them to take part so that we along with all the others who are yet to be diagnosed will have a better quality of life?
Again I started this blog days ago, and am now back to finishing it or adding to it, I am not sure. My recent days have been a mess of blinders, bad brain days, unable to complete many simple tasks. I was trying to print some important things off my printer, I could not get my printer to work, had to get some one else to print the things off, the following day, or perhaps a number of days, I am losing days like crazy, trying again, after two hours with anxiety hitting an all time high ( dealing with anxiety is a fairly new thing for me), off to the Staples store I went. Trying to print it on one of their computers, nope brain is just not able to manage to connect the dots, store manager saves me and my day, by taking over for me, which went a long way in helping get my anxiety back in check. Next day trying again, now I have created such a mess my printer is totally taken out of my computer, I don’t know how to get it back up. It’s time to admit, I need to bring a computer person in to get things going in the right direction again. This will also go a long way in keeping anxiety in check. So I thought my printer was faulty but its my brain showing its faulty wiring. My brain is tired though I have been working on a few pieces for upcoming events and those things are draining my brain more quickly now so I am going to have to retrain myself to manage them in a different way at a different pace. Without the help of some wonderful researchers and those friends who step in and help none of it would be possible anymore. I am getting out more now that the days are cooler, and enjoying having the doors and windows open all day and night. the walking is good for me and I can hopefully get some exploring in before the snow settles in.
I feel like I am pushing hard to get one or two more decent years in, do things I want to do, it feels like many of us are pushing hard at on many fronts with our advocacy and work with research, in large part because we have yet to figure out how to reach others so that they can pick up the baton and keep things moving. So if you need help to get connected reach out we are all happy to have you come aboard and get involved, you will meet great people, share lots of laughter oh and yes perhaps at times tears too, but your life will surely be enriched.
This is so appropriate for today as the clock strikes 9 am and my brain already is telling me its tired.
Chrissy's Journey 