Being diagnosed with vascular dementia, I decided to share my side of the story, while I still can. Sometimes it will be sad and sometimes beautiful or funny memories.
Today was just a westome. First my husband Andries and my youngest Nita came to visit me. (They are all looking after people’s pets and houses when they go on holiday and that way they pay their university fees) So first thing… I forgot it was fathers day and the dear donut never mentioned it to me. O well I found out about it on another chat I’m on and send him a nice message.
My friend Marian (on the left) baked me this lovely awesome yummy carrot cake.
Then my “babysitter” Marian fetched me. I was in such a hype… all over the place, even folded her washing and grating the carrots for the carrot cake. When the time came for me to make the chicken livers with a zing thing, I got stressed out and asked her to do it. It was so yummy! In between she were fixing her chickens, she is a chicken farmer and have some awesome chickens. Lora (my eldest) also are partners with her.
Look at this awesome chickens.
Then she baked the most yummiest carrot cake ever. I almost did not want to leave, but bed and taking meds time caught up with us. Thanks for being my friend Marian, I know you read my blogs.
I simply got to tell this. My young ladies got me to make savory muffins just now. First time since things went south for me. I searched and searched for a recipe, got one and went to the kitchen. I went into a panic, but they just told me there is no turn around.
So first me and Nita argued whether I should first put butter in the pans or first make the dough. Right Nita won that round. Did it and thought it was not a nice job but I finished it. Then first mixed the dry ingredients with the meat, cheese and corn, then discovered that the mustard, salt and red pepper is also dry ingredients, but what the hell, I just put it in. Then mixed the wet stuff, got confused about the size of the eggs and if I should put one extra in. Good, mixed it together and spooned it into the muffin pans. The oven was already on.
Quite happy with myself, I sat down and started reading my messages on my phone. Next moment I realized I never looked what time I put the muffins into the oven.
Panic broke lose!!!! Nita said, don’t worry mum, just play it by eye, if it is brown, take it out. Lora, nahhh not to worry everything will be ok. I kept looking at my watch and I simply could not make out the time. Then I realized I must have pressed a button on my watch that changed it from pm/am and then tried to figure out how long it is in the oven.
Then Nita went to the kitchen to make us some coffee. I NEVER EVEN PUT THE MUFFINS IN THE OVEN. Everybody was laughing. It was so so funny. Then Nita put the muffins in the oven and set her timer. Now just for the results and the next batch. Going to make lots and lots of muffins.
Dear friend, I’ve been meaning to write about DOT kindness for a few days now, but life just got busy and I couldn’t write. So let me tell you about kindness, as the idea feels like it is fading in my mind.
A lot of kindness has been given to me by friends since I were diagnosed and before. I play an online game Dawn of Titans. I never liked to play games… really solitaire?… boring! But Dawn of Titans is a community and I have been playing for three years now. We have an app where we socialize and brag with our Titans etc. called Line. This is not a blog on the latest Titan or stats, but about my friends.
I hope they don’t mind me mentioning some of them, because we all goes by an alias. Mine is Saro of cause 🙂 Anger is our Captain, he will deny this of cause, but he is. When I told him one of the first things he said was that he will send me a message saying:” Hi Saro, my name is Anger. We are family and we love you.” I’m not going to mention everyone, otherwise I will have to write a book on Dawn of Titans or DOT as we call it.
Another one was my dearest Hades108. I think I mentioned him before. I only gave him and Anger a link to my blog. This young man told me:”Saro, I don’t talk to you as a person who is sick or a person that has dementia. I talk to you as my friend Saro, that is like a mom to me.
I shared my dementia thingy with the rest of the leaders of our alliance (the 6 of us have been playing together for about 3 years, don’t know the exact time) and they always have my back. Boy o boy, I can mess up in Line app. Miss understanding stuff, not understanding stuff, being impulsive, type nonsensical messages and post stuff in the wrong chats. Geeeezzzz and DOT can be very intense with spies and stuff hahahaha. Sometimes I have to send Anger a message and ask what they are talking about or just simply drop it. Confusion really is a bummer.
But they will always have my back or fix things. I’ve been thinking of leaving DOT, but I spend so much time in the game. Have made so many lovely friends. Never met them face to face, but they are real to me. The guys (girls not many) sometimes shares their heartaches and stuff. I so love hanging out with everyone….
Playing DOT, is one of the things that makes me happy. When my Titan Grimvald goes whoos whoos with its lightning axes and the archers swish swish with their arrows and my storm maidens trrrr trrr shooting lightning bolts with their axes all at the same time, it thrills me so. It stimulates my brain, as I need strategies. Which are faltering, but I’m still good to go for a very long time.
This is kindness shown to me by people that lives all over the world, that has never met me face to face. A big thank you to all of you, even if you might never get to read this blog.
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?
Today I want to participate in https://beckiesmentalmess.blog prompts. I hope this url thing will lead you to Beckies blog.
I’m not aiming to write some dissertation or literary blog. I will just write from the heart. Here is the prompt:
When you first found out that you had a mental illness/disorder, what was your first reaction? Explain, how this new revelation regarding your health affected you?
I have been diagnosed with two mental disorders/illness. The first was Bipolar Disorder. It explained what was happening to me. My first reaction was: Are people going to think I’m crazy? The effects of the ups and downs was devastating, put in aggression and I was convinced that I was crazy, never mind crazy, I was convinced that I was a monster. The effects on my family was terrible and even worse on me. Guilt, shame etc. etc and I am so not going into bipolar. I’m on so many medication now that the bipolar only shows up very mildly. My most precious pill is Dopaquel. It makes me sleep and take the aggression away.. Me and my family actually have a standing joke about it (our coping mechanism is jokes). Whenever we see a really bad person or character on one of our series, my young ladies will say: “Mum, we just take your Dopaquel away for about a week and send you over” Water is coming out my eyes again, so that is enough about bipolar.
The second was Vascular dementia. I have already blogged about this. It was coming on for almost two years before I was diagnosed. The moment the psychiatrist told me the diagnosis, in a sense I felt relieved that now at least I knew what was wrong. It also caused that everything went black for me, I could not see the “light” any future or life forward for me. When the relief of knowing what it was left, I was scared senseless. I felt out of control and scared of what is happening to me and the inevitable, which I’m still unable to say. I told my friend that my life is shortened.
I once saw an image of Snoopy and his friend sitting on a bench. The boy said: “You know we all are going to die one day?”. Snoopy replied: “Yes, but today we live”
Today is not a good day. I feel down, don’t know if it is the bipolar or the dementia. It is as if my head just don’t want to work. I’m fed up for my online game that I’m playing. One person that makes me happy today is my friend Omar or Hades108. He is such a good kid and plays with me Dawn of Titans. Or not a kid anymore I think he is 22. I think I’m getting off the topic here.
Yesterday I was doodling on my laptop and the next moment my eldest said that I promised to go make tea and bread. I had no idea what she was talking about or that I promised to do that.
I messed up with taking my medication last night and this morning I think. It gets confusing to know how and when to drink 11 different pills. So my body feels heavy, mind on strike. Just want to stay in bed.
Again off topic. Living with dementia is having black holes in our memories. As you see on the lovely photo I found and finally figured out how to get on my blog, the so called black holes is not really ugly black things. (I am not at all knowledgeable about stars and stuff.) If it is not a picture of a black hole in the galaxy, so what.
I don’t want to believe for one moment that we lose all our beautiful colors once dementia starts eating away at us. Somewhere in us we will still be who we are I desperately want to believe, if a person taking care of you can not see that, try to see the beautiful memory of us. We are still beautiful. Whether it is who we were or still is. I still love and care for others and even myself. Don’t neglect loving yourself, it is not narcissistic to just once in a while look in the mirror and say:”Hello beautiful”
Have to say goodbye now, so see you later beautiful!
There are one type of dementia that I have not heard of, but secretly knows about. The seeking kind.
Now the thing is like that. I always carry a handbag. Not just a handbag, but the biggest one you can find. My husband recon I don’t need anything for self defense since I just need to hit someone over the head and that will be the end of any person with evil intentions.
There are however many treasures in it. Hand cream… never used. Hand sanitizer that my youngest young lady deposited in my bag, just for in case I touch something that can go viral. Never used, but it smells great. Wet wipes, but I am so not telling why I need wet wipes. It is part of a small kit my young ladies assembled for me that I have to carry everywhere I go.
A blue carpet knife. My family said I need self defense. The blade seems a bit short and it is lying right at the bottom of my huge handbag, not going to work. How do I tell a robber or evil person to hang on for a minute, I need to find my carpet knife to re arrange his face or fingers or something like that. But let me leave the knife in the bag, I just may need it.
My cellphones. One for use, quite a nice one, Huawei P20 lite. Hmmm I heard Huawei is having some troubles, but my dear head have enough troubles to worry about that one. Then my Dawn of Titans machine, the online game that I’m playing. Some chargers, earphone for just in case. The DOT machine should stay at home, because it does not have wifi or data outside of the house.
Looooong list. Then my darling Boelie, Boerboel likes to stash his hooves and toys also in my handbag.
Then the really sneaky thing, sometimes I need to place stuff in a place, so that I can find it quickly again. It lands up in my handbag. So my family find many things in my handbag. Whenever I start searching, anxiety takes hold of me. You are not going to believe all the things I find in my handbag, specially trouble as well when it is discovered that I stached something away in my bag.
Now my youngest decided to sort me out. She gave me a new bag to use, bigger than the previous one. Sorted everything beautifully and with a plan. Now I really cannot find anything, but the main thing is, my stuff for my Aftercare Centre is in there and that stuff I can find. Then I stole my husbands new bag, also given to him by my youngest and I re purposed it to put my other stuff in. Not going to give a list of that. Now am the proud owner of two bags full of treasures of the most important stuff any person may need.
So now you know about the seeking kind of dementia.
Now what about considerable can one write about? I keep on going back to my previous blogs and try to fix spelling and whatever and noted that I keep on saying my cognitive impairment is considerable. With my last visit to the psychiatrist, she asked about my bipolar, I told her I have the worst kind. She answered that there is no such thing as the worst kind, there is only bipolar disorder.
Now reality for me is how I experience the considerable and worst kind. Every person is different. Experience things differently. See things differently. You get the big strong men and woman that recons that two broken legs and a broken arm is nothing…. my ass! There is something like honesty.
For me considerable is the knowledge what I was able to do and are not able to do anymore. Getting up in the morning, crying and refusing to go anywhere like a child is terrible. Dementia is not doing it’s part here, I’m suppose to forget that I did that. Well let me cash in on a good day. Haven’t started crying yet… It really is a good day!
I do not know anyone with dementia, so I can not compare.I don’t want to compare to be honest, it will scare the living daylights out of me I’m sure. Going through a day where everything is a hazy confusion is scaring the wax out of me. I noticed some stuff on my online game that I’m playing and wondered where it came from… Mum it was a give away from the developers.(My daughter reminding me. I must tell you stories about my online game, it’s fun)Â I have no recollection of it whatsoever. That scares me.
Considerable and worst kind (I must still work up some courage to write about the bipolar) means for me that something big has been taken away from me. My memory is diminished, like a black hole here and there. My thinking process really suck and reasoning literally flew out the window. I am not in control anymore. Fear of the unknown eats at me bones (did that sound like an accent or something like that? lol)
I am scared and there the water comes out of my eyes again. Must go now, it’s time for meds and bed again. Thank you for listening to me. I do appreciate it very much.
I really hope you had a lovely day. Mine feels like a tiny hangover. Nope, I’m not the drinking type. Suspicion is that my left side have a cold and if you don’t mind to much information, only my left nostril is leaking kind of.
Yesterday was the day of the great speaking engagement on Dementia, stigma and mental health. First of all, I lost my notes on my way there. Found it this morning in my famous handbag. It was a very loud and noisy gathering and everything was one big hazy confusion for me. I was the first one to speak, which was good.
So I started off with my spider story, trying to work up my guts for the stigma fear and when everyone laughed their guts out, I started my story. Cried my eyes out, got everyone else crying, but I did it.
I can’t really remember much of what I said today, but I know that I told them that a mental illness is not something to be ashamed of. That there is a light in the darkness. Just keep going. Keep your head high and do the best you can. Don’t hide, get a good support group. God is the light in our lives. He takes away the darkness.
Always, always remember there is hope. To be honest I don’t always see the hope, but I know it is there. If you are living with dementia or any other mental health issue, never ever give up.
Lots of love
Saro
(I don’t know how to add pictures to my blogs… but I will figure it out again 🙂 )
Words express love. Hurt people, comfort others. It paints pictures. Communication is impossible without words. Even deaf people use words with their hands.
Words are used to describe a painting or photo, even a landscape. I think blind people can “see” through words. We tell stories, it takes us on journeys. Words makes you happy or even unhappy. It put little ones to sleep.
Worlds are ruled through words. I love poetry and books that stimulates our imagination.
There are many more things I can say about words. I wonder what will happen when my words go away?
My life with dementia and bipolar disorder. 