This is best way I could think of to describe things at the moment, like my candle is dimming, from within. It feels as though I am fading away. It’s that horrible time when you know and feel and understand changes happening within you and you are powerless to do anything about it. Some many things so noticeable to me, difficulty ( more recently increased difficulty), in social engagement abilities, being isolated for so long, in part due to the pandemic and other health issues that create situations where you can’t always take part as you would like too, partly due to the very nature of dementia itself. More challenges with language, speaking, spelling, recalling, all more of a challenge. And yes most of us have learnt to laugh at ourselves over many of these things a lot of the time, but make no mistake it is frightening, it is sad, to see and feel yourself slipping away, from who you were. So although we may have taught ourselves to show a brave face and put on a smile, don’t think for one minute this battle is not taking a toll on us not only cognitively but mentally and emotionally as well as physically. It’s a lot to accept, it is so much to try to always be re inventing how to do things, how to try to hang on to whatever pieces of yourself you can. The navigating and trying not to get sucked under by it and drown it is so damned exhausting. My candle feels very dim at the moment, I am hoping if my health stabilizes then maybe a new normal will be found, but at this point and time it almost feels like I am free falling, and there is no safety net.
So given all this and my brain feeling like its on fire, I decided no matter what I had to try to get myself into nature, I’ve been indoors because of the heat, it was cooler this am so I decided just go, I have always been so adventurous, never feared or worried about going out and about, but this morning, the fear crept in, the doubt in my own abilities, I had to fight through that to get myself out the door, I drove out to a campsite out in the country where friends are staying and stopped in for a 1/2 hour visit, they would of liked me to stay longer, but I couldn’t manage it, to many things going on, to many people popping in and out, in days gone by I would have spent the day, maybe longer, I would have enjoyed meeting people and chatting, today it was beyond what I or my brain could manage… I leave feeling very sad, that another step or progression is taking place. I drive down the country road, I stop by a little creek, I cry, I talk to my dog, I find myself thinking about the song Candle in the Wind by Elton John, not sure why, but there it was, and it made me realize it is because I feel like my candle is burning out. Its dimmned a lot in this last year. Bright, Bubbly, Adventurous Gypsy Spirited woman has been replaced, with unsure, unsteady, to the point that I never worried about going places on my own before but I do somehow know. However, while I was sitting there talking to my dog, amidst our tears, I am sure she cries with me much of the time, that I could not and would not let the monster within steal that core piece of me without a fight.
So I spend half the day driving, stopping, exploring. I think about how I need to get back to taking pictures, too looking for and collecting rocks, finding and enjoying creeks, rivers, streams, any thing water, I am very clearly in those moments out seeing very clearly all that is slipping.
I stopped and enquired a few places that I have thought I would always like to check out more thoroughly and gathered information, normally I would never do that more just go and do and figure it out as you go kinda gal, but this is me fighting hard to find new ways to maintain those pieces of me I so desperately want to hang on to for as long as I can.
So I have now decided that I must once a week at least make myself go and do some of those things, I have to find my “brave”again, find my spirit again. if my brain is robbing it from a certain area of my brain I have to find and make new pathways for it to become part of the now. Trying to keep the candle going. In this last week I have started new brain training programs, to try to relearn words and make them familiar once again, repetitive but necessary until it sticks. I have started new exercise programs and a new dance program, this fight is a fight any of us with Dementia never wanted, but boy do you learn from having it, about ourselves, our resilience, and our strong will to continue to have a quality of life, we learn, we challenge ourselves in ways and on levels few can understand. The temperatures were lovely and much cooler where I was, coming back home the temperature climbed rapidly the closer to home I got, so once again tucked in from heat, emotionally exhausted yet again, , I am not sure that this stage of dementia although many see it as you seem pretty good, or you are doing well, have any understanding of what its like to be aware of all the changes and not be able to manage it in the ways you want, but I was sorta proud of myself for navigating the realizations as I have, the day as I have, for not giving in and giving up. In closing I will share pictures of the day, that I stopped to get at different places and areas. It turned out to be a lovely drive, the cows were the crown on the day, because I love cows, and the cows today also brought something to light regarding changes in my dementia, so I was meant to be there, meant to cross paths with them.
Chrissy's Journey 