Author: Saro (Elmarie)

Two years ago, I had two strokes and was diagnosed with vascular dementia. It was the most horrible thing that happened to me. As my cognitive impairment is already considerable, there might be a lot of grammar and spelling mistakes. This is a journal and a journey. Doing a draft, leave me with no clue as to what I wanted to write. Thank you for joining me on this venture. When family or friends read this please don't be offended if I mention something that might make you feel uncomfortable. Love you

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)

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

Dementia… new opportunities!

6109-08537039 © Masterfile Royalty-Free Model Release: Yes Property Release: Yes Senior woman laughing while dancing with man

Hi dear friend of mine, got to tell you. Many things are happening. Let me tell you, having dementia is not the end of life, you can have a wonderful life full of opportunities and happiness before that time comes… end stages. But before then… GET OUT THERE AND FRICKEN LIVE!!!!!!!!

Don’t let that day of your diagnosis when you most probably have been told to go home and get your things in order. There is life beyond that. My dearest friend Creeky thought she is the only person with dementia in …. forgot where she lives now. But she just reached out with the courage she have and the wonderful personality she has… O yes my Creeky is gorgeous and brave. She started last night her own dementia get together thingy…. blame the dementia thing for me forgetting stuff, but I am sure I got the main thing. Now she does not have to be so lonely anymore.

Now it’s my turn, but there are people that can help you with things like that.

Me and hubby just had a dance in the living room on Muss I denn and had a good kiss. Both of our bodies are in perpetual pain, but we did. I am so happy today. Am listening Avi Kaplan music… man he can sing!!!! They say music is very good for people with dementia, whatever form. Well Avi is on my list for sure. Home Free is also included… before I forget.

My Eldest Lora (writing as She Wolf) Send me a voice message encouraging me. Telling me there are still “A LOT OF TAPE ON MY ROLL” I must not doubt myself. I made a big boo boo yesterday and got everyone upside down… but Lora and Nita sorted mom’s thingy out. There are so much love and wisdom in my kids and my sweet sweet husband of 30 years. We can still do a quick dance and a kiss in spite of incredible pain in our bodies.

The day God send Dementia Mentors and my new found friends my way, made me the most fortunate and privileged woman ever. Thanks Gary and Tru. I also made a video for Dementia Mentors … It was scary and awesome, but I did it.


I’m not so scared anymore.  Anyways… toodles talk again later.

Much love and kindness
Saro (Elmarie)

Time

Hi there 🙂 Me writing knit one slip one is not good. But you know what happens. Somehow I have the attention span of a hamster and trying to get myself to do something, without doing something else….. It is difficult. Sometimes I get as far as switching on the laptop, login and start reading first. Then I have to go and take my medication and sleep. Or something else catches my attention… Like now, my daughter is on her way with my pizza lol. Okay, that was my husband’s pizza, dang, I’m hungry.

I don’t really know what I want to write about, but I read somewhere that to just sit down and start writing whatever comes to mind. Well one thing that comes to mind is Lora’s lovebird died and she got a new one… Frikkie. Still small and eating porrige and need a few feathers still. Cute little munchkin. I have a lovebird too… Saro. He is a sweetheart. Not up to too much tricks, but he is tame and I can cuddle with him. Makes me happy.

We went to a mall the other day and I freaked out. Everybody bought some clothing and I needed too, but all the people and sounds and sensory overload was too much for me. I stepped out with just a tablet that I wanted to buy. I still need clothes. My dementia mentors friends suggested I put soothing instrumental music in my ears next time to calm me down… will try that.

Lately I feel like a statue. As if I just want to sit and do nothing. Drained of energy and motivation to do anything. I have trouble to think out something, can’t remember how something happened. Just spots of nothingness. Okay yea of cause I have dementia, but it is getting to me.

Kindness and love
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)