Over this past week in conversations with a number of different people I realized there was an interesting thing happening. During those conversations the question was asked, “ are we going to be O.k., or “we’ll be o.k. Right? Like a question and statement all at once. These statements or questions if that’s what they actually were came by people who were telling me that they feel flat, despondent, uninspired. Interestingly enough these are not people living with dementia. So in my chats I discovered many people are feeling this way after 18 months of either being locked down due to covid, and if not in full lock down still having to live with many restrictions around how they navigate everyday life. Unable to do many of the things I. The same way as before the pandemic, if at all. Here of course we have had the added stress of extreme fires and smoke and unprecedented heat, further keeping people living in ways they have not been accustomed to, being restricted in ways they couldn’t have imagined.
Listening to them I realized people are and have been losing, hope, not being able to see beyond all that they have lost, much of which may be temporary. But the impact is a sense of despair of giving up, lack of motivation. So I talked to them about how we all need a sense of purpose, a sense of hope. This is something we talk about of in our dementia circles.
In thinking about it I realized that there are so many people who are discouraged lack direction. People are needing to adapt and change, something those of us living with dementia have learnt how to do out of necessity to manage and to allow and give ourselves the chance to live our best lives. So while we have become good at it, this is something foreign to much of the population, and now they are foundering, lost, feeling like there world is unstable, unsure of the tomorrow’s. Many of them are stuck, stuck in that “I just want to do what I used to do”, phase, that “ I just want my life back phase.
I know as most living with dementia now, this is not an easy or fun place to be. Finding your way through that, difficult, scary, and it doesn’t feel good. That is mostly because we humans are creatures of comfort and staying with what we know, so change of us is scary, it’s something we don’t want, and often we fight. However, if we are able to, as those of us living with Dementia can testify to, we are examples of how when you strip someone of all they new, all they thought was their life, you can once you learn to let go of the what was, and what you used to do and stop looking at what you can’t do and start looking to “ what could I do”, you will find new avenues of hope, new ways to having purpose. You will have to be willing to be thrust out of your comfort zones. It is not likely that life will ever go back to how it was pre pandemic of covid 19, but that doesn’t mean we are forever thrust into a world of no hope and purpose.
The shift comes in changing your thought process, it takes looking at ok, these are the restrictions I have to live in today, so what can today look like, what can I still do, what will bring me joy. Being willing to try something different
It takes courage, it takes willpower, it takes being willing to sit back and cry when you feel like it, but then getting up and getting busy. A desire to do something different to feel something different, because living with the feeling of hopelessness and despair, living without purpose just isn’t giving you what you want, it isn’t feeling the way you want to feel. People with dementia are handed a diagnosis, told to go home get there affairs in order, and ready themselves to die, when in stead they should be given the resources and help and shown that there is still hope, they still can have purpose, they can still lead a life where they feel valued. People with Dementia are not given any of those things, they have had to find their way through a complete unraveling of the life they had, they have had to figure out how to reinvent themselves, their lives, all the while living with a terminal, progressive illness. They are a shining example to the world at this time, about how to live and find purpose.
So in my chats I was talking about the possibility of finding purpose in different ways, if your purpose used to be this, then maybe your purpose will be this. It’s about finding things you like, and likely they will be things you didn’t even realize you liked, maybe it’s in something you always wanted to try but never have, maybe it’s baking artisan breads, maybe it’s gardening, maybe it’s painting, or like for me writing. Discovering I like to write lead to my blog, lead to my book “ For This I Am Grateful” being published. It gave me the ability to find a new way to try to make a difference to others. It’s also about learning to live more in the present. I look simply at today, let life unfold, instead of trying to control it all, make changes that allow you to have less stress. Most people don’t know how to unwind and exhale, most people even their holidays are are rushed super busy, jam packed with things to do, because most people don’t know how to just be. To just sit, breathing in and out, listening to the sound of your own heartbeat, listening to the sound of the wind rustling through the leaves, the sounds of the birds, or the splash of a fish jumping in the water, or even the sounds of things in your neighbourhood. We busy ourselves, and it buries pieces and parts of us that given the chance to let those emerge, we discover and rediscover a whole lot about ourselves. It’s like the old “ Humpty Dumpty Fell Off The Wall”.
People have to learn to get back up and put themselves back together again. Just like Humpty Dumpty, all the kings horses and all the Kings men, aren’t going to be able to put us back together. We won’t be able to go back to what was and how things were. Just like people living with Dementia discover while living with dementia, their diagnosis changed them, we are not who we were, yes some of who we were remains but it changes much of who we were. We grow, we adapt and most of us become someone who we really like.
We cannot expect life to resume, so in order to have and find hope and purpose we must first be willing to venture into some unknown territories. I sincerely hope that coming out of this year, 2021, which I feel has been so much more difficult and challenging for us on many fronts, that we have learnt to become kinder, more compassionate, less materialistic, that we have learnt that money should not and must not be allowed to trump all. I hope that we have learnt that if we don’t all take a more active role in looking after our world, our animals, plants, the earth, that we walk, then we will be to blame for the demise of the human race. I hope we have all learnt that we were programmed, brainwashed into believing we had to have more, do more, bigger, better, until bigger better has almost cost us everything, and for many it has cost our emotional and mental well-being, it has cost us our very health. I hope when we come out the other side of this life will be different, I hope just like those of us living with dementia have had to learn to adapt daily to our live with our illness, the world and all of you can enjoy a simple relationship with each other with the world around us. I hope we all learn to find more hope and purpose in things that are meaningful on a deeper level. Yes I am full of hope, yes I have purpose, it is a gift of my dementia. So yes I think we will be Ok, I think we will all be a little different, but we will be hopefully better than Ok.
2 replies on “Are We Going To Be Ok?”
My dear friend, you have a gift and, you are a gift. Thank you for being a friend and thank you for being on this journey called Dementia with me. Thank you for not being selfish. I will be ordering your book soon (finally) to add to our now forming Dementia Warriors Resource Library for our members.
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Dear Christine, You forever will be in my heart and memories. There is nothing that can take away that, not even my dementia. Will we be okay?! The earth will be okay. Depending on your beliefs about the age of the universe and evolution, it has survived. all that we have put it through. It has changed from early man to present man, and will continue with its evolution as it dictates. Everyday the world is evolving, its natural course and influenced by humankind. As for our dementia, you are so right, individuals with dementia or any disability are forced to adapt. Adaption can be very hard for some, not just the practical ways we need to adapt, but the psycho-social adaption which can be disabling. They say that faith and hope is something not seen but believed. Changing attitudes for some, in general, is almost impossible. If it was easy, the world would be kinder, there would be less anger, more appreciation and gratitude. For those with dementia, those pesty neurons can change how some think. You open the doors of vision, faith and hope, speak from the heart, not just of dementia, but life in general. You see the world from all sides not just “both”. You question and ask the questions no one else will ask. You speak up when you see something needs to be tweaked, you address it in a “soft shoe” approach and never shut anyone down. Your perspective on the world and inclusivity for all makes me feel honoured knowing you. Despite all you go through, and what I see sometimes the weight of the world that you carry at times, you are always thinking of others. Always honored by your presence, no matter what form it takes. Hugs, Debbie
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