Author: WWW.Chrissy's Journey.com

I have to Thank my sister in law for making sure I saw this, and it so good I had to share it. But what does that have to do with half in or half way out, well so much of our life is based on what we can and can’t control, how we manage that aspect of things in our life. A lot of it has to do with our perception of things, for example some people see June has halfway into the year while others see it has half way out till the end. We can’t control any part of it, only how we choose to see it, I choose to look at it as being fortunate that I’ve had a pretty decent go for this first half, especially compared to last year. I am grateful half way in and not one hospital stay, thats pretty unheard of for me , touch wood.

There is many things I can’t control, how much I forget now, understanding and knowing how much I have changed, all by things out of my control, but I can control how I feel about that. I can not control how or when my dementia and other related health issues will decide to ramp up or down, I am in control somewhat of managing how I react to those changes, at least for now, there will likely come a time when I may not be able to control that either, that is the nature of my dementia.

I can control my environment, ensuring as little drama and stress come into my world, very important with this illness. I can manage my nutrition, my exercise and my sleep, although my sleep patterns change and are not always within my control, it is monitored though, and when it changes making sure I adapt so that I can and do get enough rest are important.

I can not control how others view me, I can give them information, but ultimately, they are the only ones who can control how they view me or anyone else with dementia. We are always trying to give people information trying to stop the stigma around dementia, but ultimately, thats all we can do, give information, hope their hearts and minds are open to receiving it and reshaping how they think.

Thats what advocating is, giving, sharing information, so people can perhaps have a different understanding. It can be frustrating, often many advocates feel as though they are not being heard, that changes aren’t happening fast enough. But we cannot control that all we can do is give the information, the rest is not in our control.

I am thinking about this as we are approaching the start of Alzheimer Disease International conference in London. I had two abstracts accepted, one had to be done in person the other I had the option of in person or by pre recording. I choose to pull the in person one, I will keep it for another time, and I did a pre recording of the other, which they will play. Although I was saddened to think that I would not get to see some people I have not seen for a long time, and or have the opportunity to meet others face to face for the first time. I new that it was not the right time for me, something I could and do have control over, so I chose to forgo and perhaps will attend the next one in person. So knowing it was 100% my decision allowed me not to be sad, but to be proud of myself for doing what I knew to be right for me.

Sometimes when the world seems out of step as it does now, when life feels upside down, we need to remind ourselves to take a step back acknowledge all those things and how they are making us feel and then refocus on looking at the things that are within our control.

For me I am much happier when I look at things through that lens instead of being upset and angry about all the things that are out of my control.

What is in my control at the moment is being grateful, that sitting halfway out to another year ending and I am still maintaining being on my own, I have scaled back a lot of things, I live a super quiet life compared to my pre dementia life. I control how much and what I do each day, that is in my control. I have the ability to say yes or no, and can do it without guilt. Those are all things in my control. I am happy here, it becomes easier and easier to be happy here.

Ok so yesterday, a good laugh, so many times lately I have almost missed important events and presentations and meetings, and when among very patient people, who have helped me locate my notes for a presentation that my brain totally would not remember how to find, to ending up at the wrong place or the right place on the wrong day or time. Yesterday I had to attend a meeting which looking at the invite, I had no idea why or what I was supposed to be there for…. My brain is completely tossing things aside or out or filing them into the deeper recesses, where it may have locked access to me, luckily reminders from those there, of whom they were, referencing where I knew them from and what we were meeting for, I’ve been working with them for over two years on this project… we all had to laugh, me especially.

In an earlier meeting Ellen, (a true doll), who helps me do much talked about how this is happening so much lately. I can’t find a reason, I said I don’t know what’s wrong with me, more laughter, as I realized what I had just said followed with that’s ridiculous of course I know what’s wrong with me, it could be that it has something to do with the fact that so have Dementia….OMG…at least this disease affords me much laughter, because there is no point crying.

So what might be happening, just the dementia. Or my brain being tired and being zoomed out. In all likely hood, a combination and this brain 🧠 can only manage so much before it starts tossing stuff or filing it and sometimes it locks those filing cabinets only to open them down the road at some unexpected time. It can and does create chaos, it could create a lot of anxiety and stress if I worried about all the missteps it creates in my days. But instead I chose laughter, I don’t worry if I miss anything, it used to upset me terribly if I missed or was late, it no longer worries me, instead I feel like what’s wrong I manage to still do is good, if I miss something I will get caught up.

I also feel many many people whether with dementia or not are zoomed out, meeting out, and technology may have saved many of us during the pandemic but it is tiring, it creates another level of stress for us and our brains. There is some good articles on some of the things, like how our brains have to work harder to try to make and understand one’s body language. The back to back meetings and lack of true connection, it is connecting us but it does not feed our bodies what and brains need from the face to face connections. My fear with all of it is $$$$, profits etc will be the driving force to keep people zooming and not putting up the funds for all those face to face get togethers of the bygone days, and by that I mean prior to the pandemic. maybe we don’t need to be meeting face to face all the time, but perhaps for those working everyday, once a month, would suffice, for others like myself, meeting once to three times a year may be enough, but without those connections that are made, without that face to face interactions, I think the price paid will be in how our brains respond to the continual on line work. Time will tell.

The other part of me is wondering if it is just that it is time for me to simply put in more time to playing. Enjoying living, not that meetings aren’t good, not that advocating and research work isn’t great, it is and it provides purpose, but maybe this is my brains way of helping me balance it. Maybe walking away more often from the screen time on phones, i-pads, computers and remembering to live and breathe and play is equally or maybe even more important. Being fully alive, we often talk about living in the moment, but are we if we are always tied to a device. I don’t think thats how we were designed, at least I know I wasn’t. Playing at things that make me feel good, make me happy, make me feel at peace, that seems to be what I need right now. Perhaps there is many who need that, maybe I am fortunate that this ill working brain, gifts me with helping ensure these things happen, by tossing out what I may otherwise deem important. Somehow together this brain and I will continue to manage to do what I hope to do, it just may not look like the path most would take.

I have also been going through a lot of emotional ups and downs, a lot of things in the world to do that to us, again, it shouldn’t just be chocked up to being part of the dementia, it should also not automatically be chalked up to being depression, it is in fact normal reaction to very abnormal times. Innocent children and people being gunned down, war, along with the regular life stuff of family and friends, that can have an emotional impact. I, as well have the week of June the 5th through the 13th which always no matter how much I say it won’t, hits me like a freight train, too many emotional events all within a week, it never seems to get easier to navigate, it has however become easier to recognize and to just allow it to be a time to be whatever it needs to be. I am happy and content for the most part but I would say I was being remiss if I didn’t say that I do have those days and moments, where tears overtake me without warning, honouring the sensitive part of my being, dementia doesn’t change that, if anything I am more aware and feel more deeply. I write about these things because all to often everything about us is attributed to our diagnosis, when in fact much is and should be attributed to the fact that we are still alive so life will still effect us directly or indirectly. Sometimes I am not sure myself which it is, but by acknowledging how things are effecting me, how I am feeling and managing can go along way it having better days.

So I will just be at this time, however it looks each day, and I will laugh at the blunders, enjoy the moments of clarity, be grateful for all that is and pray for better more peaceful times for everyone.

The pictures are from yesterdays, stroll, these three were teasing me, posing and generally having fun, making the walk all the more enjoyable. Yes its the little things.

Dinner tonight, well actually every night my dinner is 2 cups of berries, today was a total plant based day, as was yesterday, trying to do more and more plant based, I’m not perfect at it but if so get it 50 to 60 % of the time I feel it’s a win, I also try to only eat between 2 and 7 pm I fast the rest of the time e, again not perfect but most days it works well for me.

I am always striving to do better, take better care of myself. I pay attention to my eating more and more in part because my eating changed so much, A friend was concerned that I wasn’t eating enough, so I started logging my eating, and because I rarely cook, it did and does seem like I am eating a-lot less, and in fact I am, but I am eating better, healthier food, so I am getting enough nutrition just differently.

I do have to monitor a lot of things that I’m the past I didn’t but because I can forget, because I often don’t remember hours or the day before, I appreciate having friends that will gently chat about the changes and things they see, a check in and check up so to speak. It’s easy for me to loose track of days and time and add in forgetting things, it’s not a stretch that forgetting things like eating is possible. And although it may seem that I would be upset by someone bringing those things up but quite the opposite actually, I smile, and think how nice that they care enough.

There is other things that I monitor in my bid to stay as well as possible, to stall and stave off the inevitable for as long as possible. Ensuring I make sure my sleep and rest are looked after, fresh air, quiet calm environments not over taxing or over stressing my system. Looking after and protecting my emotional and mental well being. It’s a tremendous amount of work, but without it, things would look much differently than they do at the moment. Yes there’s no cure, yes the complicating factors can wreck havoc, but all of those things would be so much worse if I didn’t do all I can for myself. My Motto when diagnosed was “I’m not done yet”, it is still my motto still how I feel, last year, I felt I was losing the fight, spending most of the time between hospitals and being bedridden at home, I never gave up and I never quit trying to help myself, it was a year that has made me really appreciate this year, and all that is in comparison. It was a year that as we head into the last half of this year, I try to be mindful, look for joy each and everyday.

Talking to my sister in law today, she commented on how very busy I always was, lunches, dinners, hosting get togethers and always off to somewhere. Today, I go days and days without leaving home, my trips to nature are my great adventures, that feed my heart, mind and and soul my plants create peaceful places and spaces for me. I will protect that. I will be mindful for as long as so can to be grateful for each of the good days.

Today has been a great brain day, I treasure those days so much, when I can manage to do something that I rarely try to tackle anymore. Accomplishing things that at one time were so easy, getting so excited when I actually have it turn out, almost makes one forget even for just a few minutes about the monster lurking in the background, my dementia monster, when he runs rampant not much happens except floating through the days, giving myself lots of self talk about how its ok not to be ok, its ok if today I just try to navigate enough to get by. Today was one of those days where the monster sleeps. I had a great sleep last night, in bed early and then up at five this morning feeling good, no brain fog, no lighting bolts flashing through my head. I stood out on my deck as I waited for my coffee to be ready and just breathed in the lovely spring air. Later I went for a little walk and enjoyed the spring rain falling softly, no need for a sweater or umbrella, just enjoyed the raindrops as they fell on me. Back home I decided to try tackling making one of my artisan crusty breads, I made a garlic and rosemary crusty loaf, then I made a pasta dish, to bake,( pheobe loves pasta), she was standing at my feet just waiting, she some how knows. So although I rarely and by rarely I mean only every couple months do I actually have a day where I can accomplish anything in the kitchen. I rarely turn the stove on, I use my little air fryer, and my toaster oven, and eat things that don’t require cooking. So today I feel like I had great purpose, a great sense of fulfillment, hopeful that in the days ahead I may have occasion where the monster will sleep and give me this brief reprieve where once again I can feel this way.

The reason I am sharing this is last night a dear friend of mine called me, he and I talked for well over an hour, it was lovely to just chat. One of the things we talked about is that it doesnt matter if you have dementia, some other illness, are just dealing with aging, if you are young or old we all want and need to feel a sense of hope, to feel as though we have a sense of purpose, it makes us feel fulfilled, and at times we may be more prone to do things than others. Sometimes the most and best we can do is be kind and gentle with ourselves. We should not place such expectations on ourselves or on others that we don’t allow ourselves or others the time they or we need for self care. Self care is in and if itself purposeful, its needed and necessary, we can’t always give of ourselves, of our time, in order to feel we have purpose, sometimes our only purpose should and needs to be the very thing we are always made to feel selfish. It is in fact the opposite, for when we encourage others and allow ourselves time and space for self care, we are able to give more completely and fully to things that bring us that sense of purpose and provides us hope. So perhaps we need to offer kindness and understanding when people have to step away for a time, perhaps we should encourage each other more to the self care end, without having to know the why’s or whats of someone needing to take that time, just cheering them on for doing whats right for them.

We also need to understand that we can and should find our sense of fulfillment in the simplest of things, liking managing to make a crusty bread, or finishing a project, or just being, our sense of fulFillment should not always have to come from how much we are “ doing”, or contributing, but rather letting it be in whatever we are doing and knowing that is enough.

We the people who inhabit this earth have the whole world resting in our hands. It feels as though there is a power struggle between good and evil going on.

Its hard everything is hard, everywhere people look it looks bleak and everyone wants to blame someone. For so many they aren’t coping well, in many ways understandable, we have had at the very least 40 + years of people growing up never having to endure hard times, never having to want for anything, not everyone but by and large the largest part of our human race. The privileged, not that thats good or bad, but its left us in a place where everyone wants to blame someone , everyone wants someone to fix it, the problem is they don’t, wont or cant see that they, each and everyone of us has to decide to be the difference, to do things different to make a difference, we collectively either finish the mess and let evil win, or we choose for good to win. We choose kindness, we choose, simpler lives, we help create more sustainable places, we create food supplies within our neighbourhoods, we help each other instead of hate each other.

Encourage our cities and towns to stop using pesticides, instead of grass boulevards, fill them with soil, encourage people to plant vegetables and flowers, there are ways and things we can do so we don’t have such high food costs, that is better for the environment, we need to step up and help get these kinds of things in place, , we must be willing to help, what a great way to help build community and neighbourhoods, we can change the course the world is on, one by one, community by community, we can plant trees, stop the erosions. people feel like there is no point, that it wont make a difference, but it will and can, if we all do simple things, if we all stop buying more than we need, if we get off and out of the commercialized world we will all to better, yes the people making all the money, making us feel like we need more, bigger, better, well they wont like it, but maybe they will have to change their practices too, maybe we can get back to putting more value in human life than status and money. My grandmother and my mother always said money is the root of all evil, as I look around to what is happening to us, to our world, I believe them to be right.

All of these things that are happening on a global level, impact us all, we can say it doesn’t effect us but it does, none of us are that tough, it creates stress, worry, anxiety, it causes us to be exhausted and not now why. I am talking about it because I don’t want people to think that this stuff doesn’t impact people with dementia, or the elderly, or those with other disabilities. It actually impacts them in many ways more, because they know all to well that when times are tough the services they need so badly are most often some of the first things cut. So they not only worry about the rising costs, the supply issues, climate change impacts, food shortages, wars, housing issues, they then have to worry about how it will all effect them and the ability to have access to services. They worry about whether they will be left behind, forgotten. It can effect their overall well being, so remember extra patience, extra kindness. They may have trouble verbalizing or communicating how it is all making them feel, but they do feel it.

So please take the time to talk openly and honestly about whats happening, it will allow others to open up, which allows us all to stop hiding behind the ” I’m fine” facade. Lets all start being real, being human, lets say yes I am scared, yes this sucks, then lets get down to work at helping each other supporting each other, lets right the world that as someone slipped lets make sure good wins. Lets show tis world that we inhabit how grateful we are for all it has given, all that it has tolerated. Lets collectively do better.

Do Better

Be Better

Want Better

The difference a few hours or day can make, this morning I am what I would say is feeling a little hyper, cant sit still. My brain feels clear, the first time in weeks, TIA’s do that to me, that and fatigue, today I feel neither. Yippee it makes you want to run out and tackle the world, or at least dance down the street, I’ll settle for dancing around the house.

I was so fatigued yesterday I was in bed before six p.m., but obviously listening to my body is the best way to help myself. Hopefully I can have another decent stretch. This is Vascular Dementia, or my Vascular Dementia. Each one of us has unique and different yet often similar symptoms. I believe my fierce stubbornness, my fierce will to maintain my independence, and as much as many hate stubbornness in people sometimes if its challenged correctly, its a good thing, fir me I believe its what helped me be able to remain at a fairly high rate of functioning. That is something I can thank my mom for, she never tried to squash it out of us, she tried to teach us how to harness it for when we really need it. It has served me well in my 7+ years of living with Vascular Dementia.

Yesterday in conversation with one of the people I work with within the CCNA, we talked about my struggle lately to be engaged, not necessarily with the CCNA, but overall, with all my advocating work. It seems many of us are at a point of meeting fatigue, whether its advocating, support groups, presentations all those things. I thought it was just me, I was struggling to understand ” what was going on with me”. At first I thought it was because of my TIA, then I thought the fatigue, partly that is correct on both fronts, but there is another component, one that seems to be effecting a lot of us. That is simply life fatigued, so much on line stuff over the last few years, we are exhausted from it, we need time away from our computers, from social media and the like. So I scaled back a lot on what I am doing, hoping that by giving myself time, that come fall I will be ready to be back at it full swing. Its not easy to admit too but its like reaching a sort of burn out stage. But funny enough many many people are feeling it but trying to push beyond it. I am not willing to cause any more stress to my system so scaling back was a survival move, one I am happy that I have made. Again that stubbornness in me that allows me the good graces to say no sometimes. To put my own well being first. Today feels like a day that all those decisions are shining brightly so I know they were the right ones.

I am not disappearing, I will still be advocating and working on certain things, my writing will continue, but boy oh boy does it feel good to not feel bad about taking a break or saying sorry not today.

Some times starting over, or in some cases just starting is the only thing to do. In this case I was planning to write this yesterday, maybe earlier today, doesn’t really matter. Obviously, I got the title done and there it sat, and off I went doing something else, none of that really matters, thats just how my days go, then when I realized it was sitting on my computer( that only happened because of something I was going to do, but there it was in all its splendour, a title for a blog just staring at me. So then I thought I would just save it as a draft and sit with my Ipad and write. Except then I couldn’t navigate that part so eventually it was a matter of starting over, and so here we are. Ill tell you its hard friggin work trying to live within this illness, its no wonder why fatigue is such a big factor with and for people with Dementia, heck its exhausting just trying to be me and figure out who that is at this point. Ok so that wasn’t what I wanted to write about but there it is. The next paragraph may or may not get me to what I really wanted to write about.

Ah yes the title, well, give a girl safety pins and zip ties and bungee cords and she can fix, find solutions for all kinds of things. In this case a much loved chair that belongs to a dear friend, it sits on my deck, its broken, but its comfortable, using some wooden wedges and zip ties I managed to get it so it sits straight, instead of flopping around, then to try to protect the original cushion covers I fabricated one out of material using the tuck and pin technique. See photo:

So this project took my focus from all else, it kept me there until it was complete. I didn’t use bungee cords on it but I do use bungee cord to hold my umbrella when open to the deck, because of our winds. I have the umbrella tied to the railing on the deck with zip ties. It has to be secured because I live on the top floor, it could pose a danger risk. So zip ties all the way. Now Im thinking OMG I sound like a hillbilly, but really I’m just a kootenay girl, thats the area of British Columbia that I was born and raised, we were always proud to be a “ Koot Girl”, like a badge of honour. But we learnt important life skills like the many uses of safety pins, bungee cords and zip ties. Dementia hides and locks away much, but it brings much back from time to time and how to use what I have to manage to do something is one of those.

The other thing is about time, you see all of these things happened, without any thoughts to time. My friend Janet , we did a video call she is in Scotland visiting family, we have never met in person, she lives on the other side of Canada from me, we plan on meeting this fall, if all goes well. Anyways her and I had a lengthy conversation about the gift of living a life that is timeless. Its a gift of dementia. Most of the world operates on, time to get up, time to do this or that or go here or there. Time to have breakfast, lunch time, coffee time. The world runs ragged trying to keep up with the schedules of time. Even having to make time to meditate and relax, schedule “time ” for yoga or a hike or walk. Time, Time! Time.
Yes we sometimes have to subject to time, appointments, meetings, catching a bus or train or plane, those kinds of things, but those kinds of things happen less and less frequently for us, so for the most part we life in a place and space that is timeless. Its living in the moment we are in, and enjoying that place and that moment. Like when I started writing this blog and suddenly my focus shifted to the chair. No stress, just let it be what needs to be in that moment. We laughed about how for others we can understand their frustrations trying to understand or figure us out, its like we are living in a different sphere or on a different plane somehow. But its ok for us because we are happy here for the most part floating along, one day to the next, doing whatever hits us, whenever it hits us, just being. Here in our dementia world, that should be the title of a song, remember the Alan Jackson song ” Here in the Real World”. Well we need a song ” Here in my Dementia World”, maybe Jay Allen could write one. Anyways this is my life as it is in this moment.

This blog is for all the Grandmothers, Mothers, Stepmothers, Foster mothers, Aunties, that have such a tremendous impact on the lives they touch. The lives they help shape, they give of themselves tirelessly, they provide us with our foundations that help us navigate life. They are the nurturers, the teachers, the healers. our confidantes, our best friends, mentors.

I have been fortunate to have had a grandmother who played a very big role in my young years, a tremendous woman, my other grandmother, my step-grandmother who came into my later, also a remarkable woman, who also had a great impact in my life, and of course my mother, who although she is no longer with me here on earth continues to guide me each and everyday. I am and will be forever grateful for these incredible woman.


I am also blessed with a step daughter who is a tremendous young woman, and mother to two wonderful children, she is such a great mother, I am so very proud of her, and so enjoy watching her in her role. My step son is married to a wonderful young lady, the mother to two beautiful girls, another young mother who is doing an amazing job of being a mother.

Women have such a critical and important role shaping the future of generation after generation, through the very life’s they are guiding, have guided or will guide. So I hope that each and every woman out there knows that they matter, that you will always matter. For the women who have no children either by choice or not, you too matter, you too touch and shape and nurture more lives than you likely realize. I believe we are all mothers in some way, at some points in our lives, so this Mothers Day I hope every woman out there gets celebrated, and if you’re alone that you celebrate you and all the ways you impact the lives you have touched in your life.

Happy Mothers to all the amazing women I know.