This Morning I woke for the first time in a number of weeks, feeling good both cognitively and physically, its not often both happen at the same time anymore. My physical impacts my cognitive and vice versa, so when you wake up and two hours later you have managed to be showered dressed, make up on for the first time in recent memory, it’s an incredible feeling.
The changing of our time did and has messed me up but because I was feeling ( actually on days like today I feel like a genius and super woman all at once). good, I was able to navigate through it with a greater ease and less frustrations. Considering earlier in the week I had no been able to manage simple tasks, even trying to navigate my computer was a no go. So today being able to reset my clock without having to call in help to do it feels amazing. seems simple right, well at one time those things were done without much thought, most days know they take a lot of brain power, often leading to frustrations and its hard to fight of the feelings of inadequacies that come with the loss and difficulties to do once simple tasks.
When you lose your confidence for example I was once very good at spelling, I no longer am because words no longer lo0k familiar, in fact earlier in this paragraph I had to ask Siri to spell a word that I thought was for sure wrong, only to find I actually did have it right, but not trusting myself with the loss of abilities is another aspect that one must learn to work with. Loss of abilities, Loss of Confidence, Loss of friendships and family, Loss of careers and jobs, the list of losses starts to overtake at times feeling insurmountable and unbearable.
But then there are the gains, renewed hope and purpose, new opportunities ( although one must be brave enough to be willing to step into those opportunities), renewed and regained feelings of self worth, learning that you still have much to contribute its just in new ways, learning new ways to tackle old skills that now create frustrations, new ways of doing the old things is just another of the amazing and often over looked abilities of those living with dementia. Everyone always focuses on the things we are no longer able to do or struggle to do instead of cheering for all the things we can and are still doing. Maybe it doesn’t look like it used to, but in fact it is good for everyone dementia or not to learn new skills, try new things, it creates new pathways in our brains, so we should be celebrating all the ways we contribute all the new ways of doing things. I may not be able to put together a presentation as I once could, but I can stand up and give a speech know which I could not do before ( likely mostly out of fear). I loo longer have the fear, I speak my truth, if you don’t like it you don’t have to listen or read it, but I most certainly can read and speak it. I have a lot ( in fact I very seldom even try to read anymore), I can’t retain it, but I can write, two different functions of the brain. It makes it very challenging to try to read documents even personal papers, so often I just don’t, I try to do everything I can to make things less stressful for myself, creating less brain fatigue, which then allows me the ability to focus more on the important things, those being things I enjoy participating in, things like living and enjoying my days instead of spending them in a heap of tears and frustrations.
Yes the tides of my dementia are changing but I have learnt and continue to learn to change with them. So whether the changing of the season or the changing of the tides, changes happen to us all, some of us are just handed the piece that will force us to adapt to change in different ways than others, for me it was my dementia diagnosis.
I do get really tired sometimes of feeling like I need to prove myself to others around being diagnosed, the “you don’t look like you have Dementia”, and “you seem to be pretty good to me”, by people who only see you when you are operating at your best and highest level, ( in other words your good days), or only spend maybe a half and hour to an hour every few months with you and then make an assumption, based on that short interlude. Although I must say I actually no longer care what others think, except for the fact that it would be nice if they were educated enough ( and not just think they are), to truly understand how damaging those kinds of judgments are, and that in fact that is the very thing that keeps so many people behind closed doors not wanting to or feeling like they must hide their diagnosis from people. We in fact don’t do that to others if they have MS or Cancer or Kidney Disease or a host of other illnesses, so we should not make those judgements on people living with Dementia.
The other piece that I struggle with a lot is that so much of the populations still do not understand that Alzheimers is one of the many types of dementia, so often people think they are not at all connected, yes the effects are different for each type of dementia ( Alzheimer being one), often for as much as they are different they have similarities, and early onset within any of the many types of dementia presents in its own ways. Using my voice and I encourage anyone with a loved one living with Dementia to help them use their voice, with writing with speaking, blogging, awareness is the key.
30 Years of Advocating has seen little change but it is coming and by helping people use their voices, you will help give them renewed hope, purpose, and ways to continue to have a meaningful life.