Living with dementia in lockdown for me.

I remember all started with a panic. See if we all have enough food and money. My youngest ordered lots and lots of masks and sanitizer, which is very good. For me, anxiety set in. When I am anxious, it feels like my head becomes a stone. It cannot think, reason. My words became less and less.

I dwindled down to being unable to count or any figures, I cannot read or follow a recipe anymore. I did not blog, because think is difficult, even find words. As time went on, tension become more and the moment there is conflict my brain shut down. I can literally not move or communicate. Then I cannot talk for few days. Miss every third or forth word. Difficult to hold conversation, because no social interaction. I do however have my Dementia Mentors friends with whom I try to zoom every day.

My concentration is down, I will wonder around wanting to do something, forget then find something else and then forget that something else as well, went back to my chair. When my daughters or husband go to work or somewhere, I become anxious, because I cannot remember where they went or when they come back. Then I want to send them Whatsapp and forget that and later wonder if they will be angry if I don’t send message and then forget that too.

My filter also broke. Saying things I should not say, like hurting someone or tell someone something I shouldn’t, not that we keep secrets, but sometime there are things you don’t say in public or to you family or to anyone.

It’s getting on my family’s nerves that I ask say 3 times in a row how they are and just forget I did. The forget thing is weird. I forget… it is like a black hole where nothing even ever existed. I started making jewelry, that helped keeping me stimulated, but lately I cannot think up new designs. I went to my GP yesterday and he asked me to take off my jacket and I asked him which one, as I was wearing two. He looked at me and said both…. that’s a bummer and I remember it. I don’t feel in control anymore. I get anxiety when left alone for a few minutes. Then I don’t know where everyone is.

I don’t know if any of this makes sense. I don’t catch a joke anymore, no matter how many times you explain it. It is difficult to communicate without seeing someones face. So video call works better for me to understand something. In this time of lockdown I really have no sense of day, date even time anymore. It is one big sleep time and awake time.

A human being needs to socialize, if your brain don’t function and the basic requirement of socialization even on the most basic and way, like saying hello to the lady in the pharmacy are deprived of, it shuts down. The few thoughts you have gets muddled. The other night I was lying in bed and the weirdest thing happened. I tried to think, but all the words were like a lot of colored marbles in a bag, refusing to form a sentence even a picture. That happens more and more with me. Communication, it becomes more and more difficult. When there is confrontation, I just use swear words and say bad things, because I cannot sort matter in my brain to fix confrontation.

Got to go, stay safe.

Lots of love

Saro (Elmarie)

Spooky pirate ship.

Gooey stuff hanging inside the rounds and cracks of a skull. Here and there pits in the seabed. Here and there thunderbolts and soft light in other places…. Ghost ships sailing eerily hence and forth through the mists. Here and there appear images, people’s faces, memories of happenings, just to disappear again in the fog.

Long long ago, there was a Prince and Princess. They had a beautiful little girl called Goldilocks. On the day of her baptism, three…. Where is that beads I were busy making? The blue ones would make a beautiful bracelet… gone is the concentration and effort to read a book. Goldilocks… I think my dear brain missed and forgot the name of my favorite fairy tale.

Wife, don’t you think you should make something to eat? Oh, yes I would say, just want to finish this…. gone…. again: Wife, don’t you think you should make something to eat… so by the fourth time… trouble finds me. I have no sense of when it is time for whatever. I keep on forgetting, specially while busy with something else. So sometimes I forget what I’m busy with and I forget what I’m suppose to do. That’s not the worst scenario… I cannot plan a meal, cannot follow a recipe. Forget the stove on or switch it off when I notice the stove is still on, meantime I just switched it on to cook whatever. I mean, safety comes first and I must be extra careful.

And there I go again… forgot I’m writing the masterpiece of my life about what happens when you have some form of dementia and googled DIY chicken incubators.

Another nonsense that happens, is when you are early onset and still this sexy 57 year old woman or man… how is it possible? It’s not written on my forehead. People forget, my family forget that I have new issues and challenges. Some days I just simply don’t feel well and are unable to explain why I don’t feel well. I get asked by a concerned family member, if I want to go to the doctor or clinic…. but that scares the living daylights out of me and I immediately say no. I recon they will see if something serious is going wrong. Anyway, what are the doctor or clinic going to do about me not feeling well. That’s my reasoning, but now that I see it in writing… That’s not fair, maybe they can do something. But I’m quite sure that I will be able to say yes take me to the doctor if it is necessary or my family will notice I started drooling… sis…. Pulling disgusted face.

What is particularly horrifying for me is my sweetest friends that have Lewybody Dementia. They have hallucinations… scary ones, have sleep disturbances of all kinds or don’t sleep at all. I love them so and wish I could take it away. It is terrible enough to have any sort of Dementia, but Lewybody that takes first prize for Ghost ship sailing into lots of bad misty pirate weather.

Today me and a friend tried to discuss or understand the philosophy of critical reality. At some stage I asked her to give me the book, because I lost track of what she was reading…. Attention span…. I read out loud and couldn’t read many of the words. The sounds came out wrong and the understanding… Well that ship has sailed.

Well, enough of spooky crappy stuff. Going to sleep now.

Lots of love and kindness

Saro (Elmarie)

Sticky hands and toilet tea.



Hi everyone. I just had the idea of writing some of the stories of when my children were small. All ready did one about Nita my youngest and the turmeric accident.

I so wish I could show the photos, but I don’t know how to get them on my ancient laptop. I so wish I had a new one…. state of the art new one…. in fact so new, that it will take me a while to figure it out…. I got dementia right? lmao

One day me and the two of them were playing tea tea. Table set by them all fixed, even “tea” in the cups. After about the third cup daintily sipped with pinkies in the air, I started wondering where the water came from. See the two little nuggets were still way to small to reach any tap. So the next time Lora, my eldest, went to refill the teapot, I tiptoed after her…. Dear Lord she filled the teapot out of the toilet. I was so speechless. In fact I’m still speechless. She just turned around with her lovely blonde hair like a halo and blue eyes and asked…. Mummy, do you like my tea? I just picked up the little muchkin and smothered her with kisses. After that incident I had to expand their education.

I used to drive an old… very old truck. As they grew bigger, and it rained, they put their schoolbags where their feet should be and the knees were next to their ears… Lol one day something went wrong with the hooter and we drove all the way to the garage while the hooter were hooting and hooting. First we freaked out and then we laughed so loud, that the tears were flowing down our cheeks. When we pulled into the gas station, the owner came running out, indicating I should open the bonnet and just pulled a wire…. SILENCE… SILENCE… BLISSFUL SILENCE and us laughing. I think I’m getting off the track.

What I wanted to tell was that when they were really small, I would take them out of the truck one by one, put their hands against the truck and told them to stick to the side of the truck, mummy want’s them safe and they might meet up with my hand if they don’t stick to the side of the truck. They never needed punishment. People would look at us, as if we came from Marsh. When we come back from the shop… same thing. Stick to the side, mummy want to put the shopping in the truck. Same thing when we for instance went to the doctor… I would let them sit next to each other on a chair or couch and told them to stick… they never moved. They were and still is such adorable children. I love them to the moon and back. The memories are so special. I now hear about a few of their excursions, and adventures that would never have made it past me… They definitely had some wisdom and some real moves when it came to doing…. Mummy must not find out things. Nothing ever bad. Only like hiding in the tree when I need them to do something… well, that one ended when one of them fell from the tree. No injuries, only now Mummy knows about one of the hiding places.

Lol, talking about that, one day I heard them screaming something terrible. I ran out and found one of them, can’t remember which one, most probably Nita hanging from the wire fence hooked on her panty, dress over the head. They apparently went to visit with the boys next door, by climbing over the fence. That idea definitely came from Lora, I’m convinced and sure.

Got to go. Thank you for reading and sharing my memories.

Lots of love and kindness

Saro (Elmarie)

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)

Effects of emotional trauma on person with dementia.

Hi there. I’ve really been subject to emotional trauma since yesterday. I am trying to write this in spite of how I feel. I want to get this over to people. I will not name names, but will however try to tell the incidents, as much as I can.

I live on a farm and my children have two bunnies and a few chickens outside that I’m taking care of in this lock down time. I do it with love. Yesterday when I looked out the backdoor, some cows have been send into the garden and was touching their skins against the chicken coop. I got histerical immediately. Having early onset vascular dementia with cognitive …. going down whatever have crying as one of it’s symptoms. I phoned the person whose farm it is and he removed them.

Today him and his wife came to see us. My husband went to speak to them and I heard something was wrong and went out as well. Five seconds in I was crying, and being told to stop crying and that crying is not going to help and some more of that. I couldn’t make a conversation. All I heard was this woman’s insecurity telling me, that we pretend that is our farm and do as we want to. We do not do that, for the simple reason…. every time we try and do or fix something to help them we get verbally smacked around…. words chosen in lack of other words. I tried to tell her I have dementia…. my brain is dying, unable to remember, conversation, reason etc and she just told me it does not matter to her all she want’s us is to back off and if they want to put the cows in the garden they can do so. It was such a mess. Eventually I couldn’t understand a word she said.

I also freaked out because they did not keep the distance and they are working and are getting in contact with people I don’t know. My husband, bless his soul sorted them somehow. She came in and went to sit in front of me and touched me… what if me and my husband get sick. None of us had safety measures…

My head feels like a huge hangover, if I remember correctly, God knows how I manage writing this. My head feels terrible. Like things come up in my thoughts and run out immediately again. Tried to play my game…. no use. All fuzzy. This is fuzzy, but somehow it sails over the black foggy feeling in my brain.

I could Zoom with my Dementia Mentors buddies, who could listen and got me to do the take a breath until I feel better and eventually got a smile out of me… at least I saw my smile on the camera. How I just love them. All going through same… some form/stage of dementia. My husband is such a sweetheart. One thing this lock down did well, was to bring the two of us closer again. Been married 31 years. Will love him till the end of days.There is a lot other things I wanted to say, but lack the words and further ability. Just took my meds (hubby got me to drink another extra anxiety tablet afterwards) going to sleep now. Just hope tomorrow I will feel better tomorrow, which I doubt. Things like this affects me for days afterwards. I can not handle …. a fight or whatever word…. bad things. And the tears are still running down my face.

It is the most terrifying and paralyzing thing being attacked by someone…. yes she knows about my condition, I now remember. Telling you it does not matter and just don’t care and the best is this person proclaims to be a christian…. Refusing to listen while you desperately try to explain why you reacted the way you did… making a failure of that effort…. I just cried more… this person looked like this huge thing, person looming over you with words you hardly understand and eventually does not make sense of…. I’m not blowing this up…. this is my real life experience… I’m scared, so so so scared… scared of the future, scared of dementia, scared of slipping off… scared of incidents or happenings like this that I obviously cannot handle. At what point do I just simply give up?

Saro (Elmarie)

Lock down effects on person with dementia

Want to give credit, but I have not idea anymore where I got this picture…

Hi there. Don’t know if I should ask anybody how are you, because I think this COVID-19 virus thingy is now getting everyone or most people down. If you are not staying inside and quarantined, you are an idiot.

See, I use words like idiot… not that it is a strange word, but this virus is turning some of us into things and people that we normally not would be or want to be.

Our biggest enemy, apart from the virus, is our thoughts and emotions. I have not been feeling well lately, everything feels “foggy”… like I will walk around, from here to there and have no fricken idea of what I am doing or wanted to do. Have a million things I want to do, but it just seem too much. Three pots to wash, is just too much. I feel frozen… paralyzed… It is just too much. I set myself 3 things to do. Blog, making Jewelry and playing my online game. That’s apart from caring for my children’s zoo, cooking (that is daunting as well, because I make more of a mess than anything else. The successes are much less than the messes.

I battle to think up something to cook. Google recipes, but then get bogged down in it and turn up with nothing and time for eat is long gone and my husband walk around with a slice of bread in his mouth. The only time of the the day I’m actually hungry is ten o’clock at night. Strange but true. Wonder if that’s my brain not being so fresh or what ever. Anyway, I do eat, because my husband must eat.

People does not realize that a person with dementia, whatever type, get to a stage where words are not making so much sense all the time anymore and we have to read the facial expressions and body language. to get to the whole conversation. Extreme expressions or reactions of other people absolutely put our brains in a standstill, with tears or whatever proper or improper reaction from our part. I don’t know how caregivers are doing what they are doing, but it must be difficult for them. Then on the other side, just think how fricken difficult it is for the person that actually have the dementia.

I forget, then I get reactions or feedback from other people that I have NO idea what to do with or how to react to. Being a caregiver must be difficult, but if you are a selfish I, me and myself type, put that person in an institution and get on with your life. Harsh words, but that is how I feel today. Nobody asked for this condition. It is stealing slowly but surely my whole being and life from me and I fricken hate it.

Something that also happens is, you had a fight or something with someone and all that happens, it gets stuck in your head. You don’t know how to get around it. Pieces in between just gets lost and all that gets stuck in your head is guess what…… the fucking fight. There I said the word… Fucking. Should I put a sign “not for sensitive readers” or something like that at the top. I don’t know… deal with it and just get over it…. you most probably can, while I might have some trouble with it.

Caregivers might have real trouble handling their loved ones, but guess what a person with dementia don’t know either and eventually don’t even know. My know and not know is getting less and less. I don’t really know all the time anymore when something went wrong because of me. The awareness is wearing off. It scares the living daylight out of me. Am I slipping away? My brain is deteriorating, is dying off. That is absolutely fucking horrible. I don’t feel sorry for my self, although not at this moment. Now I do feel sorry for my self and I’m crying as discreet as possible, so that my husband doesn’t see it and get upset.

I had a fight or whatever with my eldest daughter today. I tried to call again later, to try and fix things… I just couldn’t . I feel so paralyzed. I don’t know how to fix things or organize or even reason or plan anything anymore. The how is gone. Seems I can still write, most probably full of mistakes and so on, but that’s it, at least I try.

In spite of everything, I must continue to be brave and not give up. God help me… here I am!!!!!!!

Saro (Elmarie)

Day 7 of Corona virus lockdown

Been a busy day today. Cleaned the chicken beds, washed the floors, vacuumed, cooked…. and thought out some stuff I want to bake. Thinking out that stuff was hard work, since I want to do it tomorrow…..

List: Cinnamon rolls (post photo on facebook ), little blankets (sausage in a dough fried in oil. Vetkoek. Mayonnaise muffins. Much of this I want to freeze for snacks etc….

Found something interesting on facebook. Put a note on bread for Husband… If you don’t stop binging on the bread your pants is not going to fall off anymore because you don’t have hips… there will be enough at the end of the lock down around your waist to keep your pants up. Original note on Facebook said:”You are not hungry, you are bored… go watch some more TV” stuck in the fridge. Very original.

My Dementia Mentors Zoom buddies decided we should have a cowboy theme for next week. Well I don’t have anything cowboy, except for my landlord’s few cows that is grazing outside as we live on a farm. I think I will make a note: “Cowboy theme” and stick it on my forehead. Should do the trick.

We talked about snakes tonight… grrr yuk. Don’t like… nope ….no. I promised to blog a snake story, but will leave that for tomorrow. Someone also made a joke to use baby nappies as face masks, I thought I could just pull mine over my head… then they told me it was only a joke. I can be such an asshole.

My meds is kicking in and I have to go. I did play my Dawn of Titans and touched my jewelry and blogged. Personal mission accomplished. I must put in diary that someone asked me to make a video of my jewelry and post on facebook. Maybe I should and I just need to get a few things sorted. Don’t know how long that’s gonna take lol. Lora has a small stand for her cellphone…. O well at least one idea already.

Toodles! Lots of love and kindness.

Saro (Elmarie)

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)

I’m back blogging.

Ok, I’m just going to type as it comes up. I have not been blogging all this time, because I was afraid that I cannot do it anymore. It was shaky according to my standards already, but let me not be harsh on myself… I do have early onset vascular dementia after all.

I started out getting an image, which I don’t like anymore, but decided to keep it anyway. I woke up one morning somewhere end last year and my speech was almost gone and what was left, was incomprehensible. It was dreadful. I already had aphasia after the first stroke, but not that bad.

Well I started making paper beads and then jewelry. Something I just could not believe, because I have severe hand tremors. At one stage I could not write, had to be fed etc. I so felt pathetic, which of cause is stupid. How can a person feel pathetic about something you can’t help. I just tried to email from my phone some of the photos of my jewelry to my laptop, but the fricken thing updated again and of cause I will have to figure it out again from scratch. Well to make this shorter, my hand tremors improved and my speech. How that works, is beyond me, although I read on google that they use art therapy for speech problems. And of cause, God is awesome and deserve all the credit, because He is the one putting this paper bead, jewelry making thing in me. I don’t care what doctors say, that’s what happened to me. I do not take new medication, in fact the medication I’ve been taking for my hand tremors, my pharmacist is unable to get hold of.

In the meantime, I noticed that my memory is going downhill. I always was still aware of what went wrong, now most of the time I just don’t know, which in a way is bliss. Not beating myself up that much.

My family also is making progress. There is no more…. don’t worry mommy I also forget with a whole story about the forgetting. What most people don’t realize is that normal forget is something you can be reminded and you remember again or going back in your tracks or whatever trick you do to remember something…. with us there is just a black hole… nothingness. Whatever we forgot just never existed where it concerns us Us, being people that falls under the dementia umbrella. I have a note for the 30th of March in my diary to contribute for tommy otter. Who and what the hell that is, is beyond me. It is written with my pink pen in my best handwriting. Oh well, one of those things. It kind of suck to put something in your diary to remember and when you get to it, have absolutely no idea what it is.

I can’t remember what I really wanted to say, except that I wanted to see if I can still write. Well I hope it is not to shabby. My reading is starting to suck…. long things only get read about a quarter in, then the not remember kicks in.

Now since I don’t like too long stuff let me say bye. This was day 2 of total lockdown for South Africa. Hope I will be able to organize a schedule. Jewelry, blogging, online game and ofc the chickens.

Toodles

Saro (Elmarie)

Stigma

Stigma

“The negative stigma attached to issues of behavioral and mental health is the product of a long history of misunderstanding, exaggeration, and ignorance. In today’s world, many people believe that behavioral health issues, even extremely common ones like anxiety or depression, are somehow a sign of weakness.

Sensationalizing in news stories, tabloid magazines, and television shows make a point of referencing a history of mental illness in the background of a person who has committed a crime or violence. Other sources of stigma include societal factors, like the idea that asking for help is a sign of weakness, and that people who can “take care of themselves” are somehow stronger.

However, strength is not merely the measure of how much we can endure, but how we choose to deal with the problems we face.

Suffering from a behavioral health problem affects quality of life. Neurological and physiological sciences have proven that issues of behavioral health: addiction, depression, bipolar, phobias, PTSD, and more, are matters of biochemistry. With therapeutic techniques, well-managed medication, and behavioral modifications, behavioral health issues are treatable, and affected persons can live normal lives.

How can you help fight stigma?

  • Respond positively to media you encounter that works to de-stigmatize behavioral health care.
  • Respond to false statements about behavioral health conditions with truth.
  • Share your own experiences with behavioral health conditions—both your own and those of people in your life. The more exposure the general public has to a positive understanding of behavioral health, the greater their compassion will be.

If you or someone you know experiences mental health stigmas in a way that keeps them from getting care, telehealth may be a good solution. Some telehealth providers specialize in offering psychiatry and behavioral health care through online video calls. Learn more about InSight’s online psychiatry and therapy option, here.

If you are in crisis, call the National Suicide Prevention Lifeline, a free, 24-hour hotline at 1.800.273.8255. If your issue is an emergency, call 911 or go to your nearest emergency room.

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I started this blog some time ago and noow decided to post it. Please visit the blog I refed to.

Stigma has so many faces.

I will try to blog again soon.

Love and kindness

Saro (Elmarie)