Being diagnosed with vascular dementia, I decided to share my side of the story, while I still can. Sometimes it will be sad and sometimes beautiful or funny memories.
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
This is me, Elmarie (Saro) 55 years old. This is also me. Age 56Also me age 57
Why do I post pictures of myself… DO I LOOK LIKE SOMEONE THAT HAS DEMENTIA?
NO!!!! In my opinion I don’t look like there is anything wrong with me, a bit less makeup, but still it’s not written on my face. I walk with difficulty, but my left knee needs replacement, and what they don’t realise, is that my balance is getting worse by the day.
The way it looks to me, is that my family and whomever else is looking at me sitting in my chair either don’t, know, don’t realize or whatever. I try my best… ever heard of “pretend”, “faking” to make it look like NOTHING is wrong.
When I must go and do something, say for example cook. I can’t move. In the first place what do I make? Then with what do I start first? Then I forget I was supposed to go and prepare food. Then my husband will start nagging again he is hungry. Cycle starts again. Finaly I get up and try my very best, but the tug-of-war between remember, forget and the most horrifying anxiety paralyse me. I can’t work out a plan, reason as to what to do. I’m forever SO INCREDIBLY SCARED I MAKE MISTAKES. I’m most of the time scared. People may ask, why scared… there are nothing to be scared of… YOU ARE NOT IN MY SHOES OR HAVE MY HEAD. Let’s give it the proper name. Disability…. there it is disability!
I don’t know if this post makes sense, but that’s what it is. Most probably if my family is going to read it I will be asked if I want to go to the old age home, to the psychiatrist or doctor… that scares the shit out of me.
My family keep on being irritated and disappointed… that is how I see it and experience it, when I keep on asking the same questions, forgetting the same things. If I’m depressed and say I wish I was dead, they see it as me throwing them the suicide card or whatever. What they don’t know or realize is that I really want too. I am trying to be responsible and remember I can’t just up and out.
I FEEL SO LONELY, DESPERATE NOT KNOWING WAT TO DO.
This is my head, mood, emotions and and and and!!!! This is no new news to any person… human being on planet earth, except for those idiots that recon COVID 19 is some sort of alien conspiracy and putting the rest of planet earth’s population in danger of dying and dying themselves by the loads full.
I’m tired and angry. I had enough. What else can I add that starts with “I”.
I’m tired of being scared, lonely, frustrated, desperate and plain angry. How could a whole year be so horrific? 2020 is…. I lack the propper words for a suitable comparison.
I think I have just repeated myself more in a few sentences than in my entire blog.
The masks is choking a person. If you have a wet sneeze it’s snot all over your face and particularly bad if you wear one of those see threw plastic masks that covers your entire face… I leave that to your imagination. Next one a burp after a particular garlicky meal and someone said if you smoke, it can become really stuffy.
Another thing about masks, I battle to recognize people or properly understand them if voices are so muffled. You cannot see if someone smile. The world turned into one huge unfriendly place.
You can zoom and socialise like that, but that is no real touch and a presence that only two or more bodies can create in a room.
Everything changed. Well you can say “new normal” until you are blue in the face, I can’t even figure out my phone when it updates, so how do I do “new normal” when the dementia is already doing a daily “new normal” number on me. How the F do I handle this?
I feel unable to move from my chair and do the things I like or have too. I do look forward to the kids I tutor 4 days a week, but that’s another angry story. Everything is just too much for me. I stoped smoking going for 2 years now, because of the vascular dementia, but my husband insists to choose his pipe over his family and the secondhand smoke is depriving me more and more of oxygen and my brain just happily dies off more and more.
I’m fed up for comfort eating the same stuff every day, I want something else to eat. Although, I think the reality here is that I want Corona and everything just to go away. Is someone just going to draw a line on Old years eve and we step over it into 2021 and everything will be ok again???? I think not.
If you think I should change this topic or are fed up because everyone is talking or writing about Corona… suck it up and bugger off. Go read something else.
I’m lonely. When I got my diagnosis, I chose to withdraw myself, but now I want human company and interaction, not counting kids.
Another thing…. “end of year” always has it’s own problems. You miss people you lost and don’t have with you anymore over the so called “festive season”. This time is marked by suicides, many of them young people. Depression after losing your job or business in this year. Bad thing about being depressed… it is not very acceptable or fashionable to even just mention that you are depressed or have an intense desire to end your life. You just don’t do that.
I think I said enough for now. Don’t know if I made any sense at all… but that’s it for now.
How does things get lost in Dementia land? It’s actually very easy. You walk through the house on some kind of mission to do something , see something that looks very important at that moment… Thought 1… I better put that in a place where me and the family can find it immediately, it is after all something that every one is always looking for (catch, if I don’t keep on putting it somewhere else and subsequently forget about it, it would not have been missing in the first place.) Did I mention that when we forget, it is just as if something never existed… a big black hole. Other people can retrace and remember or remember later. In Dementia land, if it’s gone, it’s gone.
Thought 2… what if someone comes in and steal it… it’s my daughter’s most prized possession. .. definitely put it somewhere safe. By now you most probably are in trouble past all redemption. Brilliant idea was to give me a bag, where I can put things.
Then I lose something… that causes extreme anxiety. I do not stop searching or fiddeling or rummaging until I find what I was looking for. Nine out of ten times it is right in front of me and I’m simply unable to see it. Searching for stuff that got “lost” is one of the most terrifying things for me… wait until I start looking for my kids when they are away away from home….
Another thing that gets lost is the fact that I if asked a question… the same one I’m asking now… the previous answer keeps on disappearing. … another opportunity to get in trouble. Sometimes my family gets it, sometimes not. Make peace with it. It’s not going to change. You are the one with the good brain.
Thinking of something. … when you were a child one of the ways you learned, was to ask a million questions a day. We gave you the right answers and some uncomfortable questions we tell a different story untill you could deal with it…. Mommy, where does babies come from? Yeah righ how old are you lol.
With us, we don’t really need the real answer (unless we are still so that we can relatively understand, otherwise I’m going to tell you I don’t have stupid, I have dementia) just one that makes us happy for the moment and much important… keeps us and you safe. Just work with us, not against us.
Now instead of learning, we are losing that learned information. Our brains are dying off, if you are in denial… well get with the program, that’s how it’s going to be or already is. I so dread that day, but guess what, Im not going to know if that terrible day arrives, my family is going to experience the decline.
One thing always to remember, we always loved you, still do and forever will. I read on one of the facebook pages about a lady that became her mom’s best friend, where she felt safe and happy even though her Mom did not recognized her anymore.
My family might deny that I get in trouble for stuff, but that’s what it sometimes feel like.
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.
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.
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.
Positive. See, I just started my blog positive. It is a desperate wish of mine to start or write today’s blog positive…. NO man! not positive for COVID-19…! Positive in attitude, thoughts, any other suggestions?
Everything feels so negative. I have no contact with the outside world… wait!!!! My Zoom buddies. O dear, we can be so funny, but I notice that we find it more and more difficult to keep the conversation light and funny. All of us…. for those that don’t know, have some form of Dementia and are early onset. We understand each other and even though the contact is virtual…. we figured Zoom out plus minus before the rest of the world, I would like to think lol.
What I wanted to say is, that we actually are a close family, even though some of us are really live across the pond. The two from England Peter and Andrew are on their worst behavior. Andrew just tested positive for COVID-19 and Peter is in hospital, being tested. Now I worry my self in a spin. They are important to me, all of them are important to me and I guess we are all important to each other. I love all of my Dementia Mentor friends so much. Creeky takes me to the beach on Sundays in Corpus Christi Texas. Ok… we chat on Messenger and she show me the beach and sea and birds flying over. Just got to love the girl with that nice bottle red hair of hers.
In the beginning of the lock down thing and start of the virus, I was concerned, then it escalated to worried, then anxious and then plain scared. Now I just feel numb, don’t feel like doing anything. The dishes in the kitchen is singing:” Tomorrow, tomorrow… tomorrow” In a lovely falsetto tone. And me…. just bugger off Okay!!!!!!! Imagine the dishes and pots etc, forming a line and starts a march across the field, past the cows, waving at the crows, saying hello to the sheep or something like that. Or I just might… Okay am definitely digging up my firm believe of fairies. Fairies whose sole purpose is to make me comfortable and then clean the house, do the dishes and I can supply them with a nice menu. A girl can dream or what lol.
Got to go, our President want’s to talk to us…. God save the Queen…. no… that the Brits!
Good night, Good morning and Good afternoon dear friends and family and now, I did not drink, it is against the law here in South Africa.
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.
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?
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!!!!!!!
My life with dementia and bipolar disorder. 