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)

I’m back blogging.

Ok, I’m just going to type as it comes up. I have not been blogging all this time, because I was afraid that I cannot do it anymore. It was shaky according to my standards already, but let me not be harsh on myself… I do have early onset vascular dementia after all.

I started out getting an image, which I don’t like anymore, but decided to keep it anyway. I woke up one morning somewhere end last year and my speech was almost gone and what was left, was incomprehensible. It was dreadful. I already had aphasia after the first stroke, but not that bad.

Well I started making paper beads and then jewelry. Something I just could not believe, because I have severe hand tremors. At one stage I could not write, had to be fed etc. I so felt pathetic, which of cause is stupid. How can a person feel pathetic about something you can’t help. I just tried to email from my phone some of the photos of my jewelry to my laptop, but the fricken thing updated again and of cause I will have to figure it out again from scratch. Well to make this shorter, my hand tremors improved and my speech. How that works, is beyond me, although I read on google that they use art therapy for speech problems. And of cause, God is awesome and deserve all the credit, because He is the one putting this paper bead, jewelry making thing in me. I don’t care what doctors say, that’s what happened to me. I do not take new medication, in fact the medication I’ve been taking for my hand tremors, my pharmacist is unable to get hold of.

In the meantime, I noticed that my memory is going downhill. I always was still aware of what went wrong, now most of the time I just don’t know, which in a way is bliss. Not beating myself up that much.

My family also is making progress. There is no more…. don’t worry mommy I also forget with a whole story about the forgetting. What most people don’t realize is that normal forget is something you can be reminded and you remember again or going back in your tracks or whatever trick you do to remember something…. with us there is just a black hole… nothingness. Whatever we forgot just never existed where it concerns us Us, being people that falls under the dementia umbrella. I have a note for the 30th of March in my diary to contribute for tommy otter. Who and what the hell that is, is beyond me. It is written with my pink pen in my best handwriting. Oh well, one of those things. It kind of suck to put something in your diary to remember and when you get to it, have absolutely no idea what it is.

I can’t remember what I really wanted to say, except that I wanted to see if I can still write. Well I hope it is not to shabby. My reading is starting to suck…. long things only get read about a quarter in, then the not remember kicks in.

Now since I don’t like too long stuff let me say bye. This was day 2 of total lockdown for South Africa. Hope I will be able to organize a schedule. Jewelry, blogging, online game and ofc the chickens.

Toodles

Saro (Elmarie)

Nothingness…

I am so fed up… and sorry I start like that, somewhere I have to vent. Last year when I saw the Neurologist, I told her my head is so empty. It is as if all or at least most of my thoughts disappeared.. “Isn’t it lovely” she said. I don’t know if I am allowed to use a bad word now and then, but WTF? Having an empty head is fine… really?

My dementia friends talk about getting their affairs in order…. I can’t even think of what affairs. You can say that I’m writing here at this moment, but I would have liked to write something, say about aliens or interesting books or just make up stories. I used to be good writing stories.

If my head is so empty, can I put some stuff back in and what stuff would I like to put in? Where did the stuff that was in my head go? And no I’m not talking about that physical stuff that is inside of my head. There are a few choice places with dead brain cells already and lots of others… actually my brain shrunk. Maybe that’s why. less brain cells to think with. BS there must be enough left to still think. Thing is that the cells that decided to depart prematurely is in very uncomfortable places, like my frontal and temporal lobes. I still remember enough about my neuro studies, to know that. I have Vascular dementia with early onset …. or whatever.

Mind you, I stopped smoking. Hope to get some more oxygen to my brain. That’s one thing to put into my brain. Worry about yesterday or tomorrow… no thank you, it’s not going into my brain/thoughts. That is not what anybody should have in their brains. It is stupid and counter productive to anybody’s life.

And there goes the nothingness. Have to say good bye for now. Hope next time is better.

Much love and kindness

Saro (Elmarie)

Thinking and troubles…

Hi there! Hope you have a lovely day. Mine is spend thinking. Hmmm the moment I say that I’m thinking lately gets me in trouble…

But let me go on thinking. Listening to Joel Osteen etc about this wonderful future awaiting you… does it still apply to me? I do believe God has the most wonderful plans for my life, but at this second I know how my end is going to be. I’m unable to work anymore, although I still go in to work every day. It’s my business, but my two wonderful daughters is taking the brunt of the work, leaving just a bit for me that I can still manage. I messed up trying to organize things twice this week and I was in serious trouble from the Love bird, Bunnies, kids and husband. I can not organize or plan things anymore at all. Cannot remember the details anymore, but whatever… I can not do that anymore.

I have been so upset yesterday, I took out some stew to defrost and cook in the pressure cooker with some nice veggies and rise. No!… said my husband, he does not want to eat three hours later, just take out a chop. Leave the eggs, it does not smell nice, don’t want potatoes, he will just eat bread later. So we each had a rasher and there I was… just couldn’t think what to do next. I cannot handle his aggression or frustration or anybody else’s. I don’t know what to do, he is entitled to venting or frustration or whatever same as everybody else and that includes me. I went hungry for the rest of the day, because I simply and still cannot think of what to do. My sweet Nita came home baked her father his favorite chocolate desert…. old man appeased and mother fed. She did not say a thing, just carried on as if nothing is wrong.

I wanted to talk about virtual friends on the internet and things like that, but I suppose I had to get this out of my system. It is terrible having dementia in whatever form. It breaks your heart and worst is when you still are aware sometimes of what went wrong. Blissful when I don’t know what I missed.

But… here is the BUT! It is also an opportunity to do new things. Mostly things you like. You can have a life with dementia, whatever form, until that time… you know … that time? We can still have many meaningful years. With loving caregivers or family, it can be okay. Just get up and do something.

Well I have not yet tied myself to a rocket and flew to the moon, but I started writing, something I always wanted to do. I found friends with the same disease than me and believe me… we are not crying or moaning all the time, we can be really funny and goof off. I already have two speaking engagements for Mental Health days. I made a video for Dementia Mentors… hiiiyaaa!!! I just don’t know how to get it on here. https://vimeo.com/362831539?fbclid=IwAR2N4X57SwyYrvQgirf-EuK3uEqpnTrNjVoho7ceFTaPTP2AzWxs2PJwwto

I hope that thing or link or whatever takes it to my video… Anyways, let me go and convince my youngest that it is very important for my general health to have some pancakes with sugar and cinnamon before bedtime.

Much love and kindness

Saro

Dementia conversations.

Hi there 🙂

Today feels like I’m losing petal after petal of my mind flower. Got up not feeling so great. Why don’t you feel great or okay or what is wrong, would someone ask… I simply cannot really tell you. One thing however that got me crying again was the fact that I am having difficulty making conversation. Someone that talks to me just every now and then might think I’m not doing to bad. But to find the right words, following a conversation is difficult for me. Even understanding some things people say is becoming difficult. As long as they keep it simple, it is still okay.

This morning I was trying to have a conversation on Line app with a friend from Dawn of Titans, Falco. (Dawn of Titans is an online game that I’m playing) I knew what I wanted to do, but messed it up so bad. Even send her a voice message just after waking up with my voice still groggy. I just want to help her with her alliance, but I cannot do that anymore. She was so sweet. Told me it is okay, she will just read the idea and the emotion. If she needs something explained, she will ask. I just had a telephone conversation with a friend of mine and I think I did not to bad 🙂

My youngest will send me a screenshot of her study material and another one of what she wrote as an answer to a question, just to check if she did not commit plagiarism. I cannot do that anymore. By the time that I got to the piece she wrote, I can not remember what the other thing said. She phoned again and asked me to look up something in one of her psychology books… the going from one page to another or down the index is difficult, as I continuously have to go back to the question. When I read it, it is interesting, but does not really makes sense. I don’t know if that sounds right… expressing what is happening, is difficult. My concentration and focus is zip. I find that I am very impulsive as well and that also is where the problem is.

I used to be so sharp etc. My sweet sister in law Marieta always said I’m so clever and have a brilliant mind. Still knowing what I’m losing makes me sad.

Something I must try to remember, is to try not to be harsh on myself. There is no way that I can help it that these things happen. But how do you accept these things? Is it possible to get used to it? Or as I understand a time will come where I will not know these things is going wrong. In Dementia Mentors Virtual Cafe I have met many friends now that has been living with these Dementia things for many years and they are still functional, however limited and assisted. They still give talks to tell people from the person with dementia self. Not seminars about dementia etc, but from us that lives with it. There are many ways dementia can be told. From an academic and research view, Neurologists and doctors, from caretakers and then from the person living with the dementia. I have vascular dementia and there are other forms too, but it looks to me that no two persons are the same or affected the same. Some symptoms are sort of standard or something like that, but living with dementia everyone finds things different.

I am going to say goodbye for now, I’m getting myself confused now. Have a lovely day.

Much love and kindness.

Saro