Communication and dementia

Warning: Content might be upsetting. I have started writing this when I was very depressed, but decided to post it anyway. I feel much better now. I also discovered that the pharmacy accidentally dispensed one tablet 200mg instead of 50mg as said on the box which is the correct dosage and I got 10 days behind on my hormone sticker plus my current emotional state. I hold no one accountable but myself. But I post this, if it can help someone. Always ensure that someone check your medication, even if you feel you are still able to take it on your own. Ok and here goes…..

Hi there. I think I mentioned somewhere that my friends got their affairs in order, while everything is still sort of ok. Well I thought I didn’t know how or what, but it finally came to me what I want to get in place.

Now talking about this in my house, did and still is not going down well. One thing I know for a fact is that my family will take care of me for ever, because they love me so much and me them.

Now, it isn’t just me that goes through stages and emotions about this dementia thing, they too mourn and at the moment are really angry and of cause scared. I really want to encourage them to get it out.

Another thing, I want to get through my shit as well.

Was on a zoom webinar last night with Teepa Snow… wow, she is awesome. She said to me something that makes so much sense. I want to talk about my death and stuff and all it does is freak my family out. She said she will see if she can organize something for me and my family…. God bless the internet. It is not that I just want to do these things, I have always organized things. I’m trying to do the mom thing, putting affairs in order, so that they will not have trouble along the road.

I know that it is bad for my family as well and that they suffer too and the same for me as well. I’m so depressed don’t know what do. The bipolar most probably plays his role as well.

I am just at the moment really at a very bad place. I’m crying my eyes out. All I want to do is die and get it over and done with. There are actually a few things I can do to accomplish this. Being depressed and making plans is never a good thing, believe me.

My family are so supportive and then there is dear Creeky, my very special friend from Corpus Christy, Texas, USA. and my other friends for Dementia Mentors. Always having my back, praying, sending messages and just loving me as I do love them.

I have to go now sorry, but will be back.

Much love and kindness

Saro (Elmarie)

PS: Just a reminder, I don’t edit my articles, as I cannot really see my mistakes and I want my blogging from the heart and authentic.

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

His name is John.

Okay…. his name is not John, but I don’t think I should put his real name here. For those that know, will have no problem recognizing him, specially if you live in the Southern Hemisphere of the planet called earth.

Now our friend John was one of the first people visiting us when we moved here. He came and introduced the deacon from the church. We talked a lot about God and I mentioned we really have God in common and should make nice friends and visit some…… His answer, looking over his glasses:” I don’t think so!” Well so much for making our first friend.

O dear, it is difficult not to get off topic or take a very wide turn to what I want to tell about John. Let me make it short. He irritates the sh*t out me. I will do anything to avoid him. whether he is invited to something or not, he turns up. Whether he was asked to do something or not, like public speaking…. he will create his opportunity and do it anyway. He actually once invited me formally for a project that I arranged for the NPO I was chairperson of. The town are just used to him. Sometimes he gets a spanking or two… but don’t think that bothers him… no sir! It is not my intention to slander the poor soul. It was sad when his wife passed away… she did everything for him. I don’t think his intentions are ever bad… but, as I said… he irritates the living daylights out of me.

Now here comes what I actually wants to tell about. I haven’t been in church for a while, sometimes my husband goes without me. I think I have been telling that I lost my friends, no one came looking for me when I disappeared off the face of the earth. Some friends texted me, and then everything in town just went on it’s merry way. We all happen to have our own place where we sit in church.

My husband came home this morning after church and told me the following. John usually sit right across the church in line with us. My husband said he saw John sat down and the next moment he got up and left again. Not long after that, John came and sat next to my husband, asking how everything is. To which my husband replied that I’m sick and things is not well after the last stroke and with the dementia. For the rest of the service he just quietly sat next to my husband. Just silent comfort………….

Much love and kindness

Saro (Elmarie)

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

Adapting to change.

Hi everyone.😊 Me and my eldest had a fight today. I suppose it’s my fault.

I feel guilty because of the stuff I can’t do anymore. But thing is, I did not ask for this dementia thing and it’s not my fault.

My house was running very smoothly up to some time ago. Everyone had his task and responsibility. Each were allotted that which they liked. So smooth running.

Now we have to adapt and I notice, that it is not that easy. Well adapting in itself is a difficult thing

I tried to make food today and halfway I suddenly felt heavy, sleepy…. As if I couldn’t move or think. It happens often now. I’ve been advised by my Dementia mentors friends, that I should go sleep, but I couldn’t. Lora actually came home to pay the bills, which I can’t do anymore. She eventually finished the cooking, for which I’m grateful.

We will have to adapt somehow. I mentioned many times how my heart is broken for me and my family. I suppose I will need to let each one come to terms with it on their own. It still is a painful thing for my family to discuss.

We have always stood together, face the problem and fought it together or found a solution. We always came through the toughest times and situations. This is no different. We have before and we always will, because we don’t have to do it on our own or own power. God is with us, have been and always will be…. and that is enough.

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