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Chaotic, Disjointed, and Out of Place.

Chaotic, disjointed, and out of place, is how much of the world and those of us living in it feel at the moment, at least from where I sit. Trying to find our way out of pandemic, yet at the same time waiting to see what it’s going to do next. Wanting to rejoin the rest of society to some capacity, but not totally comfortable too, it doesn’t feel like a very comfortable place right now, and then theres the underlying stress of a war that rages and a crazy man, not sure what or when he throw more at us all and knowing the longer he is allowed to continue on this path, the bigger impact we will all face.

It’s hard to watch what’s happening, doing small things to help support Ukraine, it doesn’t feel like enough. Even though we all must get about our days, everyone I talk to is tired, most have now explanation for why, except if we truly acknowledge that what we have been through and what we are currently facing and that it creates a subconscious stress in all of us, then we can understand the tiredness. It’s like being thrown into a blender that just keeps spinning around and around and you just want someone to turn it off, the problem with it all is that it is out of our control. That what makes us tired, the constant chaos.

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I am going to be 63 next month, and after being raised by a mother on her own with four young children, the lessons she instilled on us are serving me in ways I never thought I would live to see the need for, but here we are, and I have used those lessons to get through some very challenging hurdles in my life, like the death of my husband, I was ill prepared to be a widow at 47, then dementia at 56, but those lessons she taught me served me, helped me survive them, to move through it and come out of it all different but still standing and know the lessons have given me the foresight to not be foolish enough to think that we won’t ever have to worry about food or basic necessities, so I have taken the lessons and prepared myself for those hard days that are staring at us. If they don’t come to fruition it will be worth celebrating, but at least being as prepared as I can allows me to know I have done my best to take care of myself and none of it will be a waste. I hope everyone is doing what they can to ensure they will get through the coming times as well. I pray for peace each day, I pray love carries us through, I hope kindness prevails.

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In all of this uncertainty it feels like there is things shifting and changing in other ways as well. The world of advocacy feels like it is changing, maybe it’s not, maybe it’s me that is changing but it most certainly feels like it is. Like there is so many people trying to get a piece of the business of Dementia, and that is how it feels, like it is the “business”, of dementia that has happened, like we are losing the human aspect of dementia to the business of dementia. It has become about how each organization can get a piece of the pie, better known as funds, funds that should actually be being used to help those living with Dementia, but the bulk goes to the running of the business, and it feels like there is getting to be more and more organizations popping up, I for a long time said we needed all the organizations to sit at the same table, work out who was going to take on which piece and aspect to the betterment of all with Dementia and focus on those aspects, instead, more and more start up, everyone competing for the same $$, the biggest losers in all of this is the actual people living with Dementia.

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It’s causing many of us who advocate rethink how and when and where we are advocating, and at times wondering if there is any point in continuing with it at all. The last couple years have also made many of us realize we must also put as much time into our everyday life and living as we do our advocacy work. We have to remember to live life, our true and authentic life, if we truly want to advocate and show how we are able to still have a quality of life.

And for now we have to be ok, with all the baby steps as we step into these ever changing times. Dementia teaches us to change and adapt almost daily, use it to help you as you forge into these unknown times. Just know that what ever you do is enough.

I am forgoing presenting in person, at the ADI Conference in June, in London England, and although two of my abstracts have been chosen, something that I am very proud of. I am going to do one via prerecording, the other I am going to withdraw for another time, it is enough. It takes a lot of stress off and that means its enough. I am at peace with my decision, although I would love the opportunity to see so many and meet others, this does not feel like the right time. I feel good that I am still presenting, and I can feel good that I have done what is best for me at this time. I can hope that another time will see me do in person again.

Just let love and kindness help us all build bridges to see better tomorrows.

By WWW.Chrissy's Journey.com

I am an advocate for people with dementia in Canada and globally, having been diagnosed with younger onset dementia myself a few years ago.

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