Day 3 of total lock down.

I’m almost scared to use the word Corona virus or whatever it is called, as it is everywhere and now in my post as well. In South Africa we are in a total lock down for 21 days.

What is strange, is that I never want to go anywhere or even get an opportunity to go anywhere, except to work (doing limited tutoring with my daughters). Now that I can’t go anywhere, guess what…….? It feels like death itself. That emotional thing that happens when you are told not to do something and all of a sudden you really want to do it…. a bit, okay more than a bit like with children. Tell them not too and guess what, five minutes in and the deed is done.

With the dementia it is not that easy, as I am getting to forget a lot lately. Got an entry in my diary “contribute to tommy otter” what the hell that is, I don’t know and am too scared to ask. I have decided to get some sort of schedule going.

1. Blog, obviously

2. Play my online game Dawn of Titans, which I quit a while ago.

3. Make my jewelry.

4. Look after my zoo of dog, cats, bird, chickens, bunny and husband. My daughters are not here, but are stuck somewhere else. Can you imagine my one bunny “Ashes”, other one is Sparkle, tried with his little paw to remove the stone I was busy putting on his latest escape tunnel. The audacity (big word… yaaayaaa), so I fetched another one and put it on that one. When I went to feed them, I noticed that the man was quite busy, with you know what.

I see that I’m getting sidetracked again as usual. Thing is, I have decided not to keep on reading all these reports, only check out positive text messages. Keep the air freshener close to me, to use when my husband is getting overly busy on his pipe. It really sounds strange… just sucking on it, like it is a ventilator or something like that. So we should keep out of each other’s hair. Maybe the two of us have a few things to work on…. we will see.

The dementia thing is getting a bit worse. I still could figure out something went wrong, but now it happens less and less. Just blissfully have no idea if something went wrong.

Something on coping… must put this in my diary… Put up stickers. Geyser switch… up is on and down is off. Same with stove and whatever might be dangerous. For the life of me I could not figure out 2 days ago which way the geyser is on or off.

Ok… Zoo… check, Blog… check, game… check, jewelry… check, husband… still alive and kicking… check.

Bye, and stay safe.

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)

Getting stuff in order

Warning: Contents might be upsetting.

Hi there

Haven’t written in a while (getting to be a boring intro..), but I find my concentration to be shorter than that of a hamster and I get so easily distracted, it’s not even funny.

Before I get distracted again. This is still about getting stuff in order, because at some stage I will not be of sound mind anymore or whatever happens with vascular dementia. Fact is I’m going to die……. BUT ON ALL THE OTHER DAYS I’M GONNA LIVE. (Snoopy and his chum Charlie came up with that I think, but I’m going for that “all the other days” ) watch how I get distracted…. I want to do fun things, already tried one thing. My husband bought us a new mattress and I wanted to jump on it, he refused me immediately… just sitting on it and hopping, I tried to make it a bit less upsetting for him, being strict with his woman and such things. He still refused. (I waited till he left the bedroom, mattresses don’t talk… lol)

Okay, here goes. First of all I could not decide who to give power of attorney, not wanting to step on anyone’s toes of feelings, then Lora my eldest stepped up and informed me that she will take the job. Don’t know if they held a meeting or something, but made it easier for me. Then she got me in the car and got me to make an appointment with our dear local attorney Gerhard Mattheus. The living will went down a bit more difficult. I got an example from his office and it scared the living daylights out of me. Remember now here, that I don’t want to take my own life. The bipolar is just a nonsense that is being controlled by medication and family.

The living will is for if by some way or another me and my family can be spared me to be in a vegetative state as I see it. No resuscitation or machines and such, is my wish. I also thought it to be cruel to doctors, but it is my life and my decision. A decision not made lightly. My family’s first reaction to the living will idea was that I want them to kill me. By no means, it is only for when I’m going to die from something else or another, I don’t want to be resuscitated or kept alive by all means. The end of dementia is way more upsetting and scary for me than anything else. I know this must be upsetting, but life is not fair and facts are facts. Well both documents are now in place and I have peace now.

Just one more thing to be done… Give forms in booking places for me and hubby for one day in the far far future at our local Old Age Home. We know everyone there and will be happy and be cared for. I put all our documents in a file, just need to update the funeral policy details and all is finished and we can get on with our lives. Mind you trying to fix the policy over the phone was quite a nonsense. The female were incredibly rude and my husband is deaf and have no idea what email addresses are and all such foreign stuff from Marsh. I’m 56 and he is 65, I think that should explain a few things.

Well, I think I’m going to say bye for now. So lots of love and kindness

Saro (Elmarie)

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.

Giving up or not.

Hi there 🙂

This week me and some other friends talked about medical aid for persons with dementia. Now there was one new friend. When they asked him if he is also applying for having medical aid, he said he is only 52 and that he will be dead in 10 years because of the disease he has. I was to afraid to ask him what it was, but it must have been some form of dementia, as the group is for people with dementia.

I was so sad. The others just did not say a thing. What was in each person’s heart? Fear, acceptance, sadness or even anger?

The above words I found on facebook from a lovely person I don’t know and never have met. It is so awesome. That is how I would like to do it. I already have God in my life. The rest is yet to see.

Something I notice, is that the moment something change around me. Does not matter what, I get confused and stars crying. I can not handle it anymore if someone is so called teasing me. It is as if my brain simply freeze up and the emotions of crying shows up. I try to handle, hide it… correct word missing now. I cannot think. Some days I feel normal… five seconds in, something happen lol. So I will just have to take it day by day.

Now got to go. Lots of love and kindness.

Saro (Elmarie)

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)

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