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)

Day 6 of lock down.

Titles is getting boring….

Hi, it is day 6 of our total lock down. Thus far my intention to write, play game and jewelry is successful. My friend Marian visited and we made cinnamon and sugar pancakes. She told me to make the batter. I think her intention was to let me feel I can still do somethings myself. Thing is, I could not understand the recipe. I could not understand the measurements. It is so strange, my brain just refused to make sense of it. I ended up putting a quarter cup vinegar in, very happy that I did not have to battle to get the liquid in a tablespoon and make a mess. Eventually I started crying and she took over. All you could taste was vinegar. She did not know about the vinegar measurement that I was so relieved about. Well it did not taste that bad and we finished the lot.I just made myself some chicken livers and that was a success, what a relieve and pleasure to my taste buds.

That was only one of my boo boo’s today. We had our Dementia Mentors Zoom and one guy Cecil made a quilt. That’s a story for another day, but thing is, he is so funny. He has the most wonderful sense of humor. He makes me laugh and he truly makes me happy. Well he made another joke and I insisted to give them the word in Afrikaans for a really funny guy. Grapgat. I translated it to Joker asshole. I saw everybody just looked at me and I tried again…. a big hole of jokes. But I told him, he makes me laugh and happy. He actually cried. Afterwards we talked on Messenger and I apologized. He then told me it is a word you cannot translate that belong to a certain part of a country and came up with the words a “well of jokes”. Well that is accurate and really sounds better. This guy speak I don’t know how many languages, so he could figure it out.

Got to go, sleep time and my meds is busy kicking in.

Lots of love and kindness

Saro (Elmarie)

5 Positive things.

1. I found this comfort in the bible.

For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. For we fix our attention, not on things that are seen, but on things that are unseen. What can be seen lasts only for a time, but what cannot be seen lasts for ever.
2 Corinthians 4:16‭-‬18 GNB
https://bible.com/bible/296/2co.4.16-18.GNB

2. The smell of the food my kids are preparing is awesome.

3. I really enjoyed the sun on me and the beauty around me while hanging the washing outside. We live on a farm.

4. First day of holiday, I don’t have to rush.

5. I’m really grateful that I’m healthy in spite of the dementia.

Now your turn😁🌹

Much love and kindness.

Saro (Elmarie)

4.

Missing time.

I decided to blog on my phone as well, as the things I want to say dissappear.

One thing lately, is that time dissappear. I don’t know where it goes. Also someone will tell me something or my family is talking, it is as if the first part of the sentence dissappear. I continually have to ask to start from the beginning again.

The other thing is, it feels sometimes if there is someone else in me… No I don’t have that multiple personality thingy. Sometimes it feels as if I expect too much from my family to handle this vascular dementia. It feels as if I just want to curl up inside of me and die, so that none of us have to go through a prolonged suffering on both sides. (no I’m not suicidal)

Thing is, it is not that we expect everyone to be at our back and call. It is the disease that causes an inability and even not knowing about stuff.

We will always love our families and caregivers, we will always be grateful. Sometimes it might not be evident, but it is there on the inside of us. We lose our abilities, not ourselves.

My family I know will always love me and take care of me and whatever I can do for them, I will. I have read posts of caregivers that said how they hate those they take care of and wish they die… That is horrible, but I believe those caregivers were rotten even before. It is fine to vent and my eldest daughter also blog to vent, it is heart breaking, but I’m glad to be able to know how she feels and she is never nasty.

If a way can be found how caregiver and LO can work together all will be well I believe. There are cases I read about where the LO becomes a danger, but they can be taken care of… Don’t know about that stuff. There are many videos to be watched, for instance from Teepa Snow and Jennifer Bute and Dementia Mentors etc.

Got to go, 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

Tumeric and 8 months.

Now for the fun stories I remember! This one is about my youngest Nita and a container full of turmeric or actually my homemade curry mix.

Now I was on the telephone chatting away with a friend of mine, when it happened. SILENCE!!!! Now every mother should know that when your kids are quiet, they are busy with that being naughty thing. Nod your head if you know what I’m talking about.

Saying bye, I put down the phone and went searching. O, dear! I found Nita sitting in front of the bookshelf tearing out pages of my favorite books, but that was nothing, believe me. Apart from tearing out pages the little face looking up smiling was covered in curry. Yellow from top to toe.

Now in those days being naughty received a whack or two on the bum. I just couldn’t. I ran to the bedroom, covered my face with a pillow and laughed and laughed and laughed. It took some time to recover.

I went back, dusted the little nugget’s bum with a slight wack or two and pulled her through the bath.

End of story????? When dressed again she put her arms around my neck and slobbered me with kisses all over my face. What a wonderful gift kids can be. Today she is 26 years old and the sweetest loving munchkin I know, still hugging and kissing.

This is my loving memory for my family for today.

Much love and kindness

Saro (Elmarie)

Taking time to stand still.

Today I would like to tell you about a very big kindness paid to me recently. Having dementia, sometimes makes you very lonely. There is always the anxiety meeting new people. Sometimes you get confused when people talk too fast…. believe me it sounds like blah blah blah. Sometimes you lose the conversation not even halfway in.

I went with a friend on a trip, not too far, only about an hour and a half drive to Jeffreys. I love my friend, she is the best ever. Before we went on the trip, we had to spend three hours in the bank, to take my signing rights off of the NPO’S financial stuff. I served 4 years as the Chairperson. That three hours, was an ordeal for me. This and that and twelve other things and me feeling like a fart in a bag of nails…. excuse the expression, but it was what it was.

When we got there, we had a lovely lunch and when we started walking…. her walking fast like Castor Semenya and me walking with my crutch far behind. Then I told her, I decided against buying panties and time is running out, so I sat myself down on a bench in the mall.

It was a bit lonely but there I was. Next moment this stranger stood in front of me. A lovely young man, nicely dressed and soft voiced. “Good day auntie, may I ask why you walk with a crutch?” I told him the left knee is not so nice anymore and he there and then sat down next to me, asking if he can pray for my knee. I said yes. So he subsequently prayed for my knee. We started talking about when we met Jesus Christ and just have a nice chat about my favorite topic…. Jesus. Then he left with me giving him a hug.

Now unfortunately I’m not jumping around with a knee all fixed and all, it is not that I did not believe or something or that God did not fix my knee. But that day, that young man left his house with a purpose and just came to stand still by a scared old lady, whose head is more on crutches than her knee. It touched my heart. I could feel the love and company of God that day as a special treat. Don’t misunderstand me, God is always with me, but just that gesture, that intent to be kind, made my whole day.

So if you are looking for something nice to do, get up, get dressed and go see if there is some old lady that you can just go and stop by and talk too. Anything will do, even just introducing yourself and sitting there and if there is conversation, do it. It will make you feel good as well.

Much love and kindness

Saro (Elmarie)

My friend Omar aka Hades108

Hi there, long time since I wrote a blog, but life has been hectic. Today I want to tell about my friend Omar or Hades108. It is a story of kindness and friendship. Someone showing kindness and understanding for someone with Dementia.

I have been playing an online game for the last four years, that really provides me with a lot of fun and a lot of good friends. The game is Dawn of Titans. Now Dawn of Titans is played mostly by older people that really are children at heart. I am not going to explain the game now, but might later on write about some adventures. It is not a aim and shoot game, but strategy between alliance members

One day I found Omar in league chat asking for an active alliance. I send him a message that he is welcome to join a fun active family. To my delight he joined, as I was trying to recruit for my alliance. He was level 14 and I thought he needed training and pointers to play the game. So I started with training. Then this rascal informed me that he is a beta player. Now a beta player is someone that started playing when the game first came out. He forgot his password and could not find his account. Dang, I felt like a fool, but then I realized he hasn’t been playing for three years and as the game keeps on evolving… so he was sort of a newbie lol. Not anymore thought.

Apart for communicating in game, the players communicate or hangout in Line App. My in game name is guess what…… Yup, you’re right, Saro.

Omar lives in Jordan and I in South Africa. In March this year I had another stroke. I got a message from him, saying I better get well or he walks across Africa and I don’t want to find him at my door. Sweet munchkin, it warmed my heart so much even though I was sort of really out of it. I could not communicate or think and my left side were paralyzed at the time. I found the message when I started to recover.

He always said the nicest and kindest things to me in game and in line. The next communication we had, was when that lunatic in Australia/New Zealand (can’t remember of cause) killed all that Islamic people in the Mosque. Now I am a christian and he is of the Islamic faith, but a mosque, church or temple is a place where people feel safe. So I send him a private message saying I’m sorry for his brothers and sisters in the faith got killed.

He replied that it is okay, because they believe they go to heaven if they die in a mosque, but his heart is broken for their families. So we started talking and really became friends. Now Omar is 22 I think and I’m an old lady of 56. Omar has the most wonderful manners… his mamma raised him well. When I told him I have dementia, he said that he is talking to Saro, not Saro with dementia, but a person called Saro that is kind and good. That is the most awesome thing anyone with dementia can hear or experience. Some people think when we start forgetting or get into the later stages, it is just a shell remaining. Not true, a person is a person. Somewhere in there is still a person with a story. We had a video chat the other day and he showed me the sun going down from his house’s rooftop. It was breathtaking. Doing that was so special and he just is this nice young man.,.,. He is not perfect, I’m not perfect, but small things in life is so important. During Ramadan he texted me everyday at the same time to say hello. He told me they believe to do good things during Ramadan for other people, and I guess I was one of his gifts. Thing is, it was not just a Ramadan thing, he always am my friend and I am always his friend. I am honored to know such a kind young man.

I was thinking about what to write other than dementia. Then I decided to start writing short stories from my past and family. I think it will work?

Anyway, much love and kindness

Saro

Chicken outing facilitator

My head is so foggy and down right screwed today, but it was all worth it.Actually my head feels like that chicken’s hairdo. Yesterday Fairyland pre-school had an outing to a friend of ours chicken farm. The picture is of my eldest daughter with her favorite Sylky chicken, Lora (She writes as She Wolf). This is a link to her blog, she gives her side and experience of living with my dementia. http://adairyandsomefeathers.home.blog/2019/07/25/are-two-heads-better-than-one/

Well I volunteered to do the chickens and rabbits. They came in 5 groups. First group, the teacher had to give me a few pointers as to what to tell the kiddies. Like where the chickens comes from… o dear. Second group went a bit better, but by the third group I had to keep on asking the teacher if I said this and that already. Lol one kiddie picked up a rabbit poop and put it in his mouth. I just put my hand in front of his mouth and said… spit… spit.. spit.. The next groups went a bit more difficult for me, but I managed. I am so proud of myself that I could do that. After that I still had to do my kids at the Aftercare Center… that pushed me over the edge. But I still managed.

Having dementia does not mean you are useless. You can still do things other people do and I’m not afraid to venture out. It is difficult to keep my thoughts straight writing this. I made friends on Dementia Mentors Virtual Cafe that can’t read or recognize people anymore, but they still give lectures on dementia… our side of it, to big audiences. And there I fricken cry again. I realize there will come a time when I really will not be able to do anything, but while I still can, I will live life to the fullest.

Something that is sad, is that people that loves you becomes so protective that they just don’t want you to do anything. I took my night meds the other day instead of the morning ones the other day. Nothing happened, I just slept all day, that I think just did me some good. I recently stayed 3 weeks on my own, with my friend across the road checking in on me without any trouble. I just cooked our meals for 3 weeks on my own… with instructions, but I did it without setting the house on fire or harming myself.

Can’t remember what I really wanted to say anymore. Let me go see what I can do without using my brain…. Wonder how long it is going to take me to recover.

Just a note to whoever knows me and reads this… don’t worry because my head feels shit after everything I did yesterday, I recover and will kick your fricken arse if you refuse to let me do things again. Please I want to.

Love and kindness and sorry for the bad words at the end.

Saro

It is happening to us.

O dear I don’t know how to start this blog. Maybe just hello? My eldest daughter started wring a blog as well. http://adairyandsomefeathers.home.blog/2019/07/06/sad-thoughts/

Maybe writing will bring a bit of consolation or understanding that which we cannot really talk about for now. When I was first diagnosed with vascular dementia, I was so self absorbed in this horrible thing that happened to me, I did not even think of what my family must go through. There was a certain relieve to know what was wrong with me. Now it has a name and we can get educated and take it from there. It was just dark for me.

But the reality here is that I have vascular dementia, but my entire family are affected by it. They are horrified by what is happening to me, as my daughter wrote at the above link. The denial, facing the reality of the disease, watching me being affected and having to take over all my responsibilities. Putting extra stress on them, but one thing I know, is that they love me dearly and I them.

Some way we have to adapt to the circumstances and changes. But how?

THIS IS MY VERY INTENTION!!!!!

Got to go. Much love and kindness.

Saro