November has arrived and its Time for some Rambling Thoughts

Another month has gone, the year is somehow slipping by at what seems like record speed. It feels like I am running out of time do to all that I want to do. The day is over as fast as it starts, perhaps because my sense of time is no longer there, maybe its because I am aging. I just now I feel or I seem to be putting pressure on myself to try to do and put together the things I want to finish in this life time. In reality none of it matters, but I think about it, even though I know right here and know is all that matters. Maybe it is the changing of the seasons that have me thinking about all this.

The Other piece for me is the silliness of what my brain is doing these days, although it is offering me the ability to spend time laughing at myself. It’s like in one moment I have convinced myself that I am perfectly fine, my dementia must be a mistake, then hours later wandering about the house, saying to myself ” what the hell is wrong with you! Why do you keep forgetting to put your nitro patch on, or take your pills, or whatever is I have yet again realized I have forgotten, and then in a fit of laughter, as I sit on the edge of the bed laughing at myself and telling myself ” well you dumb ass you have Dementia, so why are you wondering why you are doing these things? the never ending bewilderment of my brain. Sometimes I think it likes to play this game with me, or am I playing with it? One minute I feel perfectly ” normal “, although there really is no such thing, then the next I realize I am boiling the kettle for tea for the 5th time, because I keep forgetting that I want a cup of tea. Why talk about this or bring it up, you wonder, because it is very much an every day part of my life living with dementia. My journey is not the same as anyone else’s, each one of us wander through it differently, but often with many things that are quite similar. If by talking about it, myself and others being open and vulnerable about it, hopefully one day others will have a deeper and better understanding.

i am feeling excited and hopeful right now, because I have been having a pretty good stretch, minimal brain fog, minimal pain. My balance and coordination are holding steady, sleep is pretty good, my vocal issues are sorta stable, but not really, but the speech pathologist and respiratory therapist are trying to help with that. I think my doing my exercise program at home, my dance routines, along with all the other things I do are really helping to give me this good run. the end of 2019 and throughout 2020 and 2021, were tremendously hard, being in and out of hospital, spending so much time in bed. Those times always make one wonder if it is the start of the decline into the later stages, or if all the complicating health related things will and are overtaking and that there won’t be a come back, every set back the comeback takes longer and is harder. It takes courage to keep fighting sometimes we or I question why i do, other days, like the days I feel like I have a lot to give still, a lot to do, that I can still make a difference. Knowing that most with dementia end up losing life to complications or other illness also makes one look at things a little differently. Anyways just a lot of the rambling thoughts that go on.

There will come a time when I will stop writing my blogs, I will stop my advocacy work, that times comes for all of us who are advocates, when we must just finish living out our lives, but for most there is things we want to see through, finish. We still like to accomplish things, we still want to be productive, valued until that time. For me I want to really work on mentoring others, getting others involved, so that as those of us who are and do advocate, retire so to speak, ofr wind down, from the advocacy world to spend our remaining time with our family and friends we or I can knowing that I have done my best to ensure that others are ready to take on the business of making a difference. I am not sure yet when I will stop but I know at some point it will. I encourage others to step up, write, use your voice, you will not only help yourself, you will help others and you will meet some very incredible people along the way. You don’t have to “know how to” , just do it, just be yourself, give the gift of yourself to others.

One thing I have learnt through this whole last 8 years is that those who give from their hearts, those who open themselves up and share their stories have taught me more than I could have ever imagined. Their stories, their vulnerability and not just with dementia, many times just about life and life experiences, those things have opened me up to look at things differently, think about things differently, have a deeper understanding of things and people. Everyone has a story, everyone has something to share and give.. be brave…your story matters.