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.

This is difficult today…

1. I love how my dog looks at me. He has the softest loving eyes. He makes me feel safe.

2. Woodsie our not pure bred Sylky chicken laid an egg 2 days in a row. Yesterday we heard the 4 chickens making a terrible noise. Everyone stormed out, thinking th neighbours dog is playing peeping Tom again. Nope they all stood in a circle being happy about the egg that Woodsie laid in the middle of the chicken coop.

I found another one when I went to feed them just now. It is quite a picture to see how they all looked at the egg… It was still warm. It is one cock named Becky (he has a deformed beak and is a beautiful buff Orpington) then he has 3 wifes. Kleintjie and Daisy, black Pekins and then the famous Woodsie.

I wonder if they want some offspring, since Becky is regularly doing his duty. That in itself is something to behold. The hens disappear under him, when he is doing his thing and after a big noise you just see this tiny black hen running away from underneath him. Okay, I think I just did the unmentionable and discussed our chickens sex life online… Really?

3. I love my eldest daughter’s gold coloured hair. It is so beautiful and she herself is so beautiful inside and out.

4. We got awesome gifts from one of our aftercare kid’s mothers.

5. God is good, all the time. I love my friend Asanda Kwenena, she is saying this everytime I see her and she gives me hugs and tells me she loves me. Her beautiful kids Vuvu and Olo is also in my aftercare.

Okay, see it wasn’t that difficult. Sometimes we just need to take our hand off of our face, so that we don’t just see the missery in life.

But anyway, 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

I don’t want it!

I don’t want the strokes… I don’t want the dementia!!!!! It makes me miserable. Some days I feel courageous and other days I feel like this. I feel stupid, incompetent and useless. If my family reads or hears this, they will assure me that it is not the case, but it is how I feel.

The Bipolar does not help either. It is something that has been haunting me for practically all my life. Suicide attempts, horrible highs and then the terrible downs, where all is black with no hope. There is also the aggression. That is the worst of all. It makes me a monster. It harms me and my family equally and sometimes I think it harms me most because of the guild and sorrow.

I am on so much medication that if I take any more, I will be a slobbering fool. The medication is a mood stabilizer and the Dopaquel takes care of the aggression and insomnia. Obviously there is nothing to be done on the dementia medication wise. They gave me Memantine for 6 months, to see if it keeps the decline less, but I don’t see any and have stopped taking it. The other medication I take because it keeps me alive.

Then there is the anxiety and epilepsy…. I think I cover almost all the bases on what can go wrong in the head. Thank God I am mentally and behaviorally stable and don’t have personality or something like that problems.

I just can’t stop crying today. My husband is in a sh@t mood as well and that’s not helping. I cannot handle conflict. That simply is too much for me. I feel as if I cannot do anything anymore, which is not really true, I can still wipe my own butt so to speak. I keep on putting things away and when I or everyone else starts looking for something such a huge cloud of anxiety comes over me.

I cannot say something about my husband here, because it will not be right, I do love him though, but I think he needs help as well mentally. How to address that is beyond me. My kids are a tremendous help and comfort.

All these things is not written on my face, or scars or something. It is in my fricken head. As long as I keep my mouth shut nobody will be any the wiser. I do have a speech impairment because of the strokes and the cognitive impairment is …. as I said as long as I keep my mouth shut.

But how can I shut my mouth and not talk, because with the dementia in the later stages my speech will disappear all together.

Many people think that having dementia of whatever kind you are immediately unable to walk talk or function. It is not true. You can still have a meaningful life for many years until THAT DAY comes. Yes we need assistance and the assistance will be increasingly needed. But people are not all of a sudden this monsters that does not want to shower or whatever. Yes I feel sorry for the caregivers and I am very very grateful for what they do. They dedicate their lives to take care of their loved ones. Thing is the ME does not go away. I will always be there, even if it looks like I’m just a shell. Nobody can suddenly go from somebody to a nobody. Until the day you die, you will be a somebody with a name. I am Saro or Elmarie.

All this is breaking my heart for myself, my family and everyone that have the same conditions. But life is not fair. Nowhere is there any guarantee that life will or is moonshine and roses. If someone have cancer or some other disease everyone go and visit etc. Most of the people that I speak to that have dementia said that they have lost friends and even family. So many are lonely. I am so grateful for Dementia Mentors that introduced me to friends that are the same as me. Days like this I just want to curl up and die or something like that and no dear daughters of mine that reads my blogs you don’t have to put me on suicide watch. I will most probably recover and be on my merry way again. I am not going to re read this post so please put up with the mistakes and thank you for reading/listening, it is appreciated.

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

Shower + Spider

Hallo 🙂

Today I feel much better than yesterday.

Last night I went to the bathroom to have a shower. Now as things goes, you get undressed, make sure you don’t have your watch or glasses on, enter the shower and close the door.

Now as I wanted to open the taps, my eye spied a huge spider… as big as my hand on my right hand side just above the small window. AAAAHAHAHAHAHAAAH a scream enough to wake the dead left my mouth through my lips. That was the fastest I ever got out of the shower. I always do it very careful, minding the painful knee and danger of falling.

Just there and then I got dressed again and into bed. Thoughts about killing the spider whirled through my mind. Now the dear Lord build me like a muffin and not a stick. Contemplating the murder of the spider that takes care of the flies and mosquitoes, I realize two things: 1. Should I attempt to kill the spider and I failed the first time and that thing with the many creepy legs starts running… I might just take the shower apart. 2. I was sure that I already was past my “sell by date”. So shower I had too.

Now the brave girl I am, I decided to attempt to shower again, for man kind and all those brave things they say. Went back to the bathroom, got undressed, opened the shower door and had a good chat with spider. Carefully I entered the shower, opened the taps, so not taking my eyes off the spider. Just as I was soaped all over, that spider lifted his two front legs and wave them. That was the fastest rinse ever, and out the shower. Toweled dry, got dressed and jumped into bed.

Moving those front legs, I think spider was either clapping his hands for me being brave or… C’mon mam, move your ass, I see a tasty fly and you told me not to move 🙂

Good bye for now and lots of love.

Saro

How everything started going wrong.

In 2017 I started noticing something is wrong with me. When my best friend asked how I am, my answer always was. Not good, but I could not say why.

Before I go any further, my cognitive impairment is already considerable and the two strokes does not help much. I googled cognitive impairment (I used to be a neuro therapist, which says a lot of the dementia) and it means my thinking process is not good any more. People think dementia is only forgetting, but that is only one of the symptoms. So if my spelling or grammar is not so good, please forgive and know that I’m really trying to do something here. I might repeat myself or a sentence might not make sense. My speech are impaired due to the strokes. The speech therapist said it is not all about the words, it is about bringing over the idea of what I want to say.

One day I woke up and I could not think or really speak, so my family took me to our doctor. My blood pressure was sky high, so he gave me some medication for it. My hands always shook, but all of a sudden it started shaking so much that I could not eat on my own or write at all. My walking was off. So once again my family took me to the doctor, with a note with what is wrong, because I could not say what is wrong. He immediately got me admitted at the hospital. A CT scan were done and it showed the two strokes and the multiple infarctions across my brain. So there are many parts over my brain that died off. The two big strokes were new, but the rest were already old.

The neurologist said I do not have parkinsons (the hands shaking) or anything else apart from the two big strokes and the infarctions, which caused my brain to shrink.

Finally I found the most wonderful psychiatrist. I made sure she had all the medical reports and CT scan results. So October 2018 I was diagnosed with vascular dementia.

I decided to be honest in my blogs and I’m crying so much now that I will have to continue later.

Thank you for reading my blog.

Love

Saro