The truth about seeing.

This is me, Elmarie (Saro) 55 years old.

Why do I post pictures of myself… DO I LOOK LIKE SOMEONE THAT HAS DEMENTIA?

NO!!!! In my opinion I don’t look like there is anything wrong with me, a bit less makeup, but still it’s not written on my face. I walk with difficulty, but my left knee needs replacement, and what they don’t realise, is that my balance is getting worse by the day.

The way it looks to me, is that my family and whomever else is looking at me sitting in my chair either don’t, know, don’t realize or whatever. I try my best… ever heard of “pretend”, “faking” to make it look like NOTHING is wrong.

When I must go and do something, say for example cook. I can’t move. In the first place what do I make? Then with what do I start first? Then I forget I was supposed to go and prepare food. Then my husband will start nagging again he is hungry. Cycle starts again. Finaly I get up and try my very best, but the tug-of-war between remember, forget and the most horrifying anxiety paralyse me. I can’t work out a plan, reason as to what to do. I’m forever SO INCREDIBLY SCARED I MAKE MISTAKES. I’m most of the time scared. People may ask, why scared… there are nothing to be scared of… YOU ARE NOT IN MY SHOES OR HAVE MY HEAD. Let’s give it the proper name. Disability…. there it is disability!

I don’t know if this post makes sense, but that’s what it is. Most probably if my family is going to read it I will be asked if I want to go to the old age home, to the psychiatrist or doctor… that scares the shit out of me.

My family keep on being irritated and disappointed… that is how I see it and experience it, when I keep on asking the same questions, forgetting the same things. If I’m depressed and say I wish I was dead, they see it as me throwing them the suicide card or whatever. What they don’t know or realize is that I really want too. I am trying to be responsible and remember I can’t just up and out.

I FEEL SO LONELY, DESPERATE NOT KNOWING WAT TO DO.

Saro (Elmarie)

Spooky pirate ship.

Gooey stuff hanging inside the rounds and cracks of a skull. Here and there pits in the seabed. Here and there thunderbolts and soft light in other places…. Ghost ships sailing eerily hence and forth through the mists. Here and there appear images, people’s faces, memories of happenings, just to disappear again in the fog.

Long long ago, there was a Prince and Princess. They had a beautiful little girl called Goldilocks. On the day of her baptism, three…. Where is that beads I were busy making? The blue ones would make a beautiful bracelet… gone is the concentration and effort to read a book. Goldilocks… I think my dear brain missed and forgot the name of my favorite fairy tale.

Wife, don’t you think you should make something to eat? Oh, yes I would say, just want to finish this…. gone…. again: Wife, don’t you think you should make something to eat… so by the fourth time… trouble finds me. I have no sense of when it is time for whatever. I keep on forgetting, specially while busy with something else. So sometimes I forget what I’m busy with and I forget what I’m suppose to do. That’s not the worst scenario… I cannot plan a meal, cannot follow a recipe. Forget the stove on or switch it off when I notice the stove is still on, meantime I just switched it on to cook whatever. I mean, safety comes first and I must be extra careful.

And there I go again… forgot I’m writing the masterpiece of my life about what happens when you have some form of dementia and googled DIY chicken incubators.

Another nonsense that happens, is when you are early onset and still this sexy 57 year old woman or man… how is it possible? It’s not written on my forehead. People forget, my family forget that I have new issues and challenges. Some days I just simply don’t feel well and are unable to explain why I don’t feel well. I get asked by a concerned family member, if I want to go to the doctor or clinic…. but that scares the living daylights out of me and I immediately say no. I recon they will see if something serious is going wrong. Anyway, what are the doctor or clinic going to do about me not feeling well. That’s my reasoning, but now that I see it in writing… That’s not fair, maybe they can do something. But I’m quite sure that I will be able to say yes take me to the doctor if it is necessary or my family will notice I started drooling… sis…. Pulling disgusted face.

What is particularly horrifying for me is my sweetest friends that have Lewybody Dementia. They have hallucinations… scary ones, have sleep disturbances of all kinds or don’t sleep at all. I love them so and wish I could take it away. It is terrible enough to have any sort of Dementia, but Lewybody that takes first prize for Ghost ship sailing into lots of bad misty pirate weather.

Today me and a friend tried to discuss or understand the philosophy of critical reality. At some stage I asked her to give me the book, because I lost track of what she was reading…. Attention span…. I read out loud and couldn’t read many of the words. The sounds came out wrong and the understanding… Well that ship has sailed.

Well, enough of spooky crappy stuff. Going to sleep now.

Lots of love and kindness

Saro (Elmarie)

The dementia jungle

This lock down thing is busy biting me in the butt. Today was a surprise even for me. I had energy and cashed in on it. I made a pizza and did the dishes and….. hmmmmm Look after the chickens?

Something I find annoying is that I cannot multitask anymore. One thing at a time and then sometimes…. okay many times in the midst of it, I just wander off and do something else. My concentration is worse that that of a hamster and I’m not that sure that hamsters do have concentration abilities. It is like the stuff I want or have to do gets entangled. See like this:

One big mess. Although as you see it is a beautiful mess, because we still stay beautiful even if our brains is going south. But then we have to find the ability in the disability. Somewhere I read that impossible is only impossible because the answer has not been discovered yet. Something like that.Then we discover that this jungle that is so many things to do is just too much and it feels like it puts us in a stupor or something… you can’t move. It is impossible for me to fix the kitchen if it really is a mess. Just too many things. It’s an overload…. then this happen to the forest:

It gets to be one big black hole… pretty around the edges, because any type of dementia or cognitive impairment is not written on our foreheads. OOOOHHHH you look much better today… “OOOhhh yeah baby… where do you see it? Did you have CAT SCAN eyes? You saw a cure somewhere… where is it ?…. show me… want some too, so that I can look and feel better than this most impossible and horrible darkness, fogginess and confusion etc.

I still can’t get over the trauma I had the other day, where I just couldn’t defend myself. I was just this crying puddle. And guess what… here I cry again anyway. I think Teepa Snow said crying is one of the symptoms of vascular dementia…. mind you my psychiatrist said the same. Just sudden crying and that’s it. Someone, can’t remember who recently or somewhere in the past said: “Sometimes you just have to pick yourself up and stop crying” Yea you try it… let me see it…. just show me how… I’m all for stopping my crying.” It is such a pity my friend Tru said I should not use badwords…. sometimes it just makes what you want to say and the emotion behind it so much more real or to bring the sincerity or punch over. That persons pretty little ass… there used a bad word.

Oh dear Lord if I didn’t discover the undo button, I almost wiped the lot.

My hope is to eventually just wonder off in beauty like this:

Harry Urban inspire me so much. He just enjoy his life… looks like it. Just not having to worry about anything, just do what you enjoy. I feel people should be educated about Dementia, then I would have been spared trauma that took at least 3 days of my precious life. I suspect that my energy wasn’t energy in the normal sense, but a nice bipolar high.

Got to go. Thanks for reading.

Lots of love and kindness

Saro (Elmarie)