Adjusting with demantia.

Hi there. Long time no see 😁🌹 I have been busy as the above shows. I’m learning from Mark Kistler’s video’s to properly draw. It makes me happy. I still do the jewelry as well.

That is from the dearest ever Heather Boyd Wire. I so love her stuff.

Something I’m really working on, is to shut up when someone becomes fedup with my repetitive questions. I was doing something the other day and I asked my eldest, Lora 30 times in a row what the date was. She actually handled it well. The tyre only bursted a bit later that night when she were tired. I’m getting a new watch,😁.

I think slowly but surely we are finally adapting to mum’s decreasing brain abilities.

Something weird is happening. I could never do simple sums … Never ever could I literally do 3 + 2= 5. I had to count on my fingers.. now I see the sum in my head and whoops there is your answer, but I cannot count. I cannot do metacognitive or where you just start somewhere and count or backwards. I can’t see it, or figure it out. When I work on a chart with figures, I can still see patterns. That’s the weirdest thing.

My jewelry and drawing and working still with a few kids grade 1 & 2 (about 4) doing their homework is keep my brain active. I notice when a petal fell off my rose, but that’s ok. I’m happy.

I had my birthday on the 10th of march and all I wanted was a margarine tub full of candy.

Guess what, I got it. I was so happy. Sometimes it feels like I’m becoming a child again, but a happy one. My bipolar is behaving for a change. That’s a miracle in itself.

I fell about 2 days ago, something I do a lot lately. Geez my knees and hip and everything is so painful, specially at night. Somehow my left foot does not lift so  well anymore. Don’t know why… My guess tiny stroke again sometime or another. I need new and more appropriate shoes, I think. Shoes also need to have something else than laces, to make it easier to put on. Bending over can make you dizzy and also make you fall. So sensible shoes it is over fashion. If you get sensible and fashionable… Jackpot. I think pants over dresses might work better, a dress over your head can be so undignified. 🤣🤣🤣🤣

One thing that also keeps me going apart from the Lord Jesus, is my Dementia Mentors friends. I love them all so much and I know they love me too. I can’t zoom that much anymore, but when I jump in and quickly have a chat it is so wonderful.

I miss my deceased brother so very much. It feels like something has been torn off of me.

Really got to say goodbye now. God bless and talk again.

Saro (Elmarie)

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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)

Day 5 of lock down

I wonder how you get the picture to the side, or maybe it should be in the middle… anyways, here I start my blog with one of my random thoughts. Oh well, that’s okay too. I don’t know if I said it somewhere, but I decided that in this time I will blog again, play Dawn of Titans and do my jewelry. Well, I’m successful thus far.

Sad thing just happened. I’m looking after baby chicks that is been hatched in an incubator. One little Orpington just died. He had lovely white lines around his eyes. His dad… a formidable huge Orpington with a real bad temper died a month or so ago. I’m so not taking this very well. A wonderful thing about this chicken thing is that a few times I had the little chicken born right in my hand. That is an awesome experience.

I enjoyed my first game on Dawn of Titans. There are a lot of new players I don’t know and way to little players. Wonder where my kids went off wondering…. (mind you grown-ups between 30 and 50 years old)

My jewelry education on Youtube is quite extensive. There is this woman Darlene, I just adore her and she is so practical and awesome creative and good ideas…. and so I can go on.

Had a very nice Zoom Dementia Mentors Zoom meeting today. We had such a laugh, Peter had to chase a bumblebee out of his glasshouse where he was chatting from. Everyone is learning or doing zoom and whatever meetings now, while we have been doing it for like ever… Our Virtual Cafe’s is awesome. We are family, friends and meet everyday. So awesome. I just love the lot of them. Everyone has some form of dementia in different stages, although most of us are early onset. Some days we all have on hats, or tie dye shirts (don’t know how to spell that, not that it matter anymore for me, as long as I can communicate.

My husband is driving me around the bend. He is comfort eating and smoking his pipe, but I put my mask on when he smokes. I will most probably not go out anyway.

Have to go. Toodles

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)

Five things to be grateful for 1.

I woke up today.

Stroked a bunny after feeding him.

My youngest is coming home.

Holiday is starting today.

I had such fun with my Dementia Mentors friends last night.

Ok, I am going to try and do this every day. Counting my blessings. I challenge you to do the same. If you decide to do the same, post a link back to this post and use the red rose, thank you.

Much love and kindness.

Saro (Elmarie)

Funny… where???

Hmmmm this being brutally honest can become a bit ouch. Talked to a friend yesterday, that said that she don’t want to talk about sad things all the time. She want to have fun and laugh. It was the first time we talked one on one, usually we are part of a group chat.

I think I lost my funny somewhere, or didn’t. I’m so intense busy with dementia and dying and such stuff, that I forgot funny. I forgot to live and enjoy stuff. It is as if my mouth is saying one thing, but my heart and head are on another chapter. How to get out? How do I find my funny again. I used to be the funniest person ever and could find humor in everything.

Or what if I am having fun here and there and forgot about it? Twice now someone told me that I said something and I have absolutely no recollection of it. It is just not there.

How do I stop being scared and accept or get used to the inevitable. My grandma had vascular dementia. But I was not much there to see or experience it. My aunt, bless her beautiful soul, took care of her.

Sometimes it feels as if it is I, me and myself. I have never been a selfish person or an I, me and myself person. What stages does a person goes through when they get their diagnosis. No matter what illness. “Sorry dear, go get your stuff in order. You are going to forget your family and everyone and then you are going to die. Yes sorry dear, but Vascular dementia is terminal”

Just went to the bathroom and had an epiphany…. sometimes I get the best ideas there. Sorry if it is too much information. My head really are screwed. With the bipolar, I desperately want to take my own life and die and with the Vascular dementia I am going to die and don’t want to die. Geezzzzz how does that sound… you should see my face now… wanted to write: as if I smelled a fart…. but, oh well there goes.

This blog writing thing does something for a person. It actually helps me think and see things for how it is or not. I really hope that this musings of me help some caregiver to understand or another person with some sort of dementia to understand that they are not alone.

Got to go to bed now. Meds are almost kicking in.

Much love and kindness

Saro (Elmarie)

Happy finding new friends!

Hi there!

You will notice that I changed my name to Saro (Elmarie). Saro is the name under which I prefer to write or play my online game. Even my pets are named Saro. I must sometime tell you where the name Saro comes from. Last night I had my first video call on Dementia Mentors. IT WAS AWESOME!!!!! I did not want to talk to them under an alias but my real name Elmarie. So since they are lovely people also living with dementia, I put Elmarie next to Saro, so as not to confuse them and Saro for those that already got to know me as Saro.

I first talked to Truthful Loving Kindness, you can find her blog here: https://wordpress.com/read/feeds/22668891 She is assistant dementia mentors administrator. I hope I got that right. She put me at ease. Meeting new people can be a bit difficult for me lately, as I have to try and remember their names and in trying to do so, I miss the whole conversation. But I believe good news is, is that I will meet that person again and decide that the name remembering thing might not be that important as to listening to what the person have to say. Lucky thing, I already knew her name and could talk to her and listen.

We used Zoom and everybodies name was displayed by their faces. So with that sorted, we could introduce ourselves, as I was new. Finding out what kind of dementia each other have, sharing challenges, but the great thing was also how to handle the challenges. For one thing I was sitting here in my little corner believing I’m going to die tomorrow. Most of these new friends have been living with dementia for about 20 years or so. Now thinking about that again, what is better living with dementia for 20 plus years and suffer or becoming eventually a vegetable plus minus or just up and die.

But no, I don’t think “up and die” is an option. While we are still aware and can still cope, even with assistance, we can still have a full life. We can still find things that makes us happy. Things that makes us feel that we still mean something.

An absolutely awesome woman said:” to find the ability in inability” You can find her blog here. Now where did that link go?

Let me try again. https://thesecretblind.wordpress.com/author/thesecretblind/

See…. got it.

Now I have to go. Thanks for reading and have and awesome day and sweet dreams.

Loving kindness

Saro (Elmarie)