Last night I woke in the middle of the night thinking about how often talk about ensuring people can thrive, to have a good quality of life. Many of us living with Dementia myself included talk often about living well despite or diagnosis, that our illness doesn’t define us. We so many great examples of people living with dementia doing a lot of great things. I believe we should always give people hope, help them find purpose and to live their best life.
But there is another piece and this piece I am not sure of how many may or may not feel the things I do, but I am fairly certain some do even if fleetingly. This other piece is the piece that I feel right know, the piece that says I’m tired. I’m tired of trying and fighting every day to thrive, I’m so exhausted from it that I am not sure I want to keep fighting. And I know I can hear the gasps already, the ” oh but you cant give up, the oh but things will get better, the oh maybe you’re depressed”. Yip I can hear it all, it makes people uncomfortable when you are honest enough to say those things out loud. The truth is I am not depressed, I am real, and not every day or every week is good, its not easy having to fight this fight every day, no matter how easy we make it look. Sometimes our bodies and souls are just tired, so sometimes not wanting to fight to thrive anymore is more real than most can imagine.
Truth is there is actually great peace in being able to say it and own it. It feels good to say today I don’t want to keep up the good fight and if it all ends here and know then so be it, its been a hell of a run, but I’m tired.
For most of us we have so many complicating factors dependant on which type of dementia we have, we live with constant pain, our dementia is so much more complicating than most have any idea, in large part I think because for the last 30 plus years everyone knew about the late stages no one acknowledged the early stages, people still for the most part have very little understanding of the challenges those with young onset face, even today people look at me and think well you look ok, or you don’t look that bad, but they don’t see the pain I fight, the fatigue, how the only time I get a little relief is when Im lying down. Others its there vision, balance and coordination, so many moving parts that someone having a short visit will never see.
Those are the pieces and parts that some days tell you, I don’t want to do this anymore, those are the often untalked about things, that bring us to sit and think and feel that today, I don’t want to fight anymore, it doesn’t mean that tomorrow I wont get up and fight again, but sometimes I just am too tired.
I think others need to respect people in that, not try to ” fixthem”, or make them feel like they have too, maybe they need to feel like its ok to not, and when you decide that thats how its going to be for the duration its ok too.
It’s not about being depressed or suicidal, its about being real with ourselves and our illness, its not easy, it challenges us every single day, its ok to celebrate all that we enjoy, and find the joy in things we can each day, but its also ok to not sometimes.
I won’t quit fighting not yet, because there is still a couple things I am hopeful to do on my bucket list, my bucket list has also shrunk 10 fold, but today thriving is not something I’m up too. and when the say comes that I reach that point where being done is what I want then that will and should be ok too.