I originally wrote this blog back in Sept of last year, but today I am running it again with a new piece added, it is Brain Health Awareness Month. I am acutely aware of this, I am also aware of the importance of looking after my Brain Health. Even though I cannot change my Diagnosis of Vascular Dementia, I can look after it, and look after all the other important aspects of my Brain Health, which include, rest, sleep, relaxation, de-stressing. Being mindful of the importance of finding joy, being playful, being present, being part of nature. Part of that for me means that I have scaled back on some things, doing others differently, exploring some new things, spending a lot more time enjoying the simple pleasures one can find on any given day. One of the other things I have recently come to realize is that although I live with my dementia everyday, there is some days I don’t want to do Dementia, and by that I mean I want my totally free days, that I don’t have to talk about it, I don’t have to work on any aspects of it, I don’t want to even think about it. No its not running away from it, its about allowing oneself the opportunity to just have a day, just a day like anyone else has, put it on the back burner so to speak. To have conversations that are about other aspects of life and living, because yes I am still living, I still have hopes, dreams and desires, and it doesn’t matter that my dementia may in fact rob me of the opportunity to complete much of it, or live much of it, what is important is that I still have those things. I want to sit around the campfire, and reminisce and laugh till it hurts, or maybe cry, but I want to do it all and at times I want to do it all without my Dementia taking the front seat.
That is taking care of my Brain Health, and for each and everyone of us looking after our brain health may look totally different, but looking after it will give us better days, the ability to perhaps enjoy more of those “Free Days”. I hope each of you take the time to take stock of your overall well being beyond just your diagnosis. We always talk about how we are more than our Dementia, but many of us forget to live all the parts and pieces of who we are, so I encourage you all to take a look and remember who you are, what you like and enjoy and remember to live life for all that you are.
Post from last Sept.
Our dementia is always with us always there, we not only live with it we advocate about it, we work with many groups and organizations trying to make a difference in the lives of others living with it. Those are extremely important things, they provide us with hope and purpose, sometimes others don’t understand how important that is.
While others have careers, clubs and organizations and hobbies that give them purpose, many have family, children and grandchildren, That play an extremely important part in the day to day lives they lead. They happily bring us up to date on all those things, because they are important in their life.
Yet very often they don’t offer us the same consideration, they spend less time with us or none at all, because they don’t want to hear about dementia, yet they are missing understanding the importance of allowing us to update them, can you imagine the reign over horror that would sweep over someone if we stopped seeing them, or limited it because we were tired of hearing about their jobs, their husbands, kids and grandkids, those oh so important pieces of their worlds, can you imagine, we would be thought of as terrible people yet that is exactly what happens to many with dementia.
Wouldn’t it be nice if instead of shunning and not wanting to hear we were given the time and space to update about our dementia that
then allows us time to enjoy life’s moments with our friends or family, camping, walking, enjoying nature, going for a drive, finding joy together in being together, having coffee, having laughter, even having tears at times.
Those are our dementia free times, the updates are done we get to enjoy the moments. Those are the very things we need the most and yet so many end up spending too much time alone, being isolated, not being included because people don’t want to hear or talk about something. You wonder if they are even aware or think about it in the very realistic manner of what they are doing.
I live for my dementia free ( not free), times, I wonder if it is perhaps partly because a lot of people live at a superficial level, without even knowing it. In fact it is how most people have come to survive and cope, but once diagnosed people living with dementia live their lives looking through a different lens than others, things come into sharp focus. We somehow gain a different perspective and gain a different outlook.
It saddens me greatly in the many discussions around why people become so isolated, and to hear over and over that it’s ok, they’ve become used to it, and yet you can hear the sadness and to me, it most certainly is not ok, and I doubt I will ever truly get used to it, learn to live with it yes, get used to it no.
it is true that people with Dementia become very good at being adaptable at adjusting their lives to manage all the changes they go through, this is one of those pieces that they should not have to and when we start educating everyone and teaching people to look at how and why they are treating someone with dementia in that manner, perhaps it can be one thing that has been an unnecessary hardship to adapt to disappear,
It’s yet another piece where we desperately need to help educate people, not only about dementia but about how perhaps their response to it contributes and does further damage to those already trying to find positive ways to live with a life-altering diagnosis.