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

Dementia conversations.

Hi there 🙂

Today feels like I’m losing petal after petal of my mind flower. Got up not feeling so great. Why don’t you feel great or okay or what is wrong, would someone ask… I simply cannot really tell you. One thing however that got me crying again was the fact that I am having difficulty making conversation. Someone that talks to me just every now and then might think I’m not doing to bad. But to find the right words, following a conversation is difficult for me. Even understanding some things people say is becoming difficult. As long as they keep it simple, it is still okay.

This morning I was trying to have a conversation on Line app with a friend from Dawn of Titans, Falco. (Dawn of Titans is an online game that I’m playing) I knew what I wanted to do, but messed it up so bad. Even send her a voice message just after waking up with my voice still groggy. I just want to help her with her alliance, but I cannot do that anymore. She was so sweet. Told me it is okay, she will just read the idea and the emotion. If she needs something explained, she will ask. I just had a telephone conversation with a friend of mine and I think I did not to bad 🙂

My youngest will send me a screenshot of her study material and another one of what she wrote as an answer to a question, just to check if she did not commit plagiarism. I cannot do that anymore. By the time that I got to the piece she wrote, I can not remember what the other thing said. She phoned again and asked me to look up something in one of her psychology books… the going from one page to another or down the index is difficult, as I continuously have to go back to the question. When I read it, it is interesting, but does not really makes sense. I don’t know if that sounds right… expressing what is happening, is difficult. My concentration and focus is zip. I find that I am very impulsive as well and that also is where the problem is.

I used to be so sharp etc. My sweet sister in law Marieta always said I’m so clever and have a brilliant mind. Still knowing what I’m losing makes me sad.

Something I must try to remember, is to try not to be harsh on myself. There is no way that I can help it that these things happen. But how do you accept these things? Is it possible to get used to it? Or as I understand a time will come where I will not know these things is going wrong. In Dementia Mentors Virtual Cafe I have met many friends now that has been living with these Dementia things for many years and they are still functional, however limited and assisted. They still give talks to tell people from the person with dementia self. Not seminars about dementia etc, but from us that lives with it. There are many ways dementia can be told. From an academic and research view, Neurologists and doctors, from caretakers and then from the person living with the dementia. I have vascular dementia and there are other forms too, but it looks to me that no two persons are the same or affected the same. Some symptoms are sort of standard or something like that, but living with dementia everyone finds things different.

I am going to say goodbye for now, I’m getting myself confused now. Have a lovely day.

Much love and kindness.

Saro

About cows and suitcases.

Hi there 🙂 Few days since I wrote a blog. Been busy busy and busy. However I’ve been reading my favorite blogs. Everyone I follow are my favorites and thank you for all the new friends following my blog. I love yours too!

Yesterday was quite some day. I’m trying to help my eldest with her teaching practice projects. Now the theme is farm animals. Now thinking with dementia sometimes is like morse code. Think, think, gap, think, gap, gap, gap, think, think , quite some gap-a-thinking. Not to mention remembering: talk, talk, talk…. what the hell did we talk about? About shoes, reminds my friend, shoes… shoes… shoes? Nahhh Have I told you the story about my grandmothers chickens?…. yes dear half an hour ago. Dang.. Ok How are your chickens doing? She farms with chickens.

Now about the teaching practice projects. I’ve been trying think of nice easy projects the little ones could do. Wait, what about a mask of a cow. They can make a collage on a paper plate. Next moment, I’m trying to remember what a cows ears looks like, but in my memory image of a cow, I just don’t see ears. Not pointy ones, not hanging ones etc. Next question to my husband… Hi, does cows have ears? You must have seen his face! Of cause cows have ears, all living things have ears. For the life of me I still couldn’t picture the cow’s ears. Later we went to town and passed some cows. My husband applied the brakes very enthusiastically and showed me cows next to the road. See love, they do have ears. Big floppy ones. Ok cows have ears. In bed last night, he googled some cows and showed me the ears… sweet old darling.

Now that was just me. It was very, very cold yesterday, with strong wind and rain. My husband went out to take his suitcase out of the car and decided to go park the car in a safe place. Just guess what… he forgot that he placed the suitcase behind the car. Whoopsy daisy there he ran over the suitcase. Right in the middle, he said. I wanted to know if the suitcase was still okay and the contents. Nope not going to look. I think he was a bit worried. When we got to bed he put the suitcase on the bed… well it is still one of those old good ones. No damage, all just fine, he declared with a relieved smile.

Having dementia is not all sad and horrible, you can make the best of what you still have. It all lies in attitude and all that type of things. How you look at it. On the other hand, on a bad day I would have cried my eyes out because cows don’t have ears. Dementia is a horrible thing and difficult, but I decided to live every day to the fullest.

Got to go now. Am going to help a friend of mine that has cancer to wash. Helping others also help you. It makes you feel, you are still okay and can still mean something to someone else.

Nuf said.

Lots of love and kindness

Saro

Who am I?

Hi there 🙂

Today I would like to talk about: Who am I? Many of us go through life with the wrong perspective of who they are. Now let me tell you about this.

When we are born and growing up, there is no way in your development that really can give you a true sense of who you are. I might be wrong and there might be some super human that knew right from birth who and what they are or I have not read enough of my young ladies university psychology development books. But one thing I know.:

Our first impressions as we grow up, are what is reflected by either adult family members, older siblings, friends or strange people. It is like looking in someone elses mirror. There might be a horrible aunt, that have a deep down hatred in her life/heart that always are angry with you no matter what. Your mother might have an inferior complex and all you see is that you will never be good enough. Another person might always be negative, because of that persons life experiences. So growing up is like standing in a room full off mirrors. One makes you feel unwanted, one not good enough and even some lovely person that makes you feel loved.

Now I found that if you wait for the world and outside factors to make you feel happy, wanted etc. It is not going to happen. It will only last for a moment and then you have to go and find something else to fill up your own mirror. Somewhere in life you have to go and sit down and look at yourself and your life and figure out who and what you are. What defines you. What makes you you. One way is to make a list of your good qualities and bad qualities (you will have to be brutally honest). A list of what you like or don’t like, not someone else. You can even make a list of your accomplishments and failures. Take a good look at it. I am pretty sure that you will be much more confident and happy in finding yourself. Be your own person. True happiness and peace comes from within. Not from external factors.

Another way that I found worked for me a hundred percent was when I found out who I am in Jesus Christ. He is the one person that loves you unconditionally and He made you a wonderful being. There is no one else on this entire planet that is the same as you. Yes we all have done bad things some time or another, but who didn’t. No one is perfect. The only one that is perfect is God. God gave us His peace, that lasts forever.

And no, you are not going to be all of a sudden this hysterical happy hopping around chipmunk. We all have our ups and downs, but the difference will be…. YOU WILL KNOW WHO YOU ARE.

I would really appreciate it if you can share any of your experiences or ideas on this.

Much love and kindness

Saro

Not giving up kinda girl

Hi there. I must find a way that I can blog every day. Today was a funny day, I guess a dementia day. My cellphone updated, now I have to figure it out again. So did the apps. My emails changed and I simply could not send an email. Trying to send one to my friend Minna from Suddenly Mad, but I guess I will figure it out again. I joined a Zoom chat with Dementia Mentors and were pressing buttons hihihihi. Well somehow I have to figure out how it works lol. It sort of makes me sad, because I used to be so good with computers and cellphones and stuff. Even finding my way around WordPress seems challenging some days.

Some days I wonder if I suddenly became stupid or something. Someone told me it is the blog fairy that is moving stuff around. Sounds good to me.

Sitting here typing about what I find challenging lately and that it makes me sad, just got me thinking… I AM NOT THE GIVING UP KIND OF GIRL. No I am not and never will be. There are so many things in life that I went through and I am still here, 56 years old.

You can make it, I did. Maybe you or I don’t see it now, but I promise you will make it, whatever it is you and I are going through.

I have a coping mechanism or two. First of all, if I did not have God in my life, I would not have made it. And for goodness sake having dementia and strokes is not God punishing you or that you have so many sins etc. The Love and Grace of God is new every morning.

The other one is making jokes. It’s not bad talking between people with dementia and making jokes only people with dementia would probably understand. Peter one of the guys on Dementia Mentors said that we should live our lives to the fullest. I am doing just that. Some days are foggy yes, but other days are good.

The other day my husband send me into the store to go buy candy (I haven’t been in a store in a long time). I fetched what I wanted, the cashier recognized me and chatted me up. So I took my candy and left… She came running after me Auntie, you forgot to pay. So I went back, payed and told her, next time she sees me, she must ask me if I want to pay cash or with a card. So that was sorted.

Another funny thing I find myself doing is sensory. My hands and fingers. If I cannot remember if I took a specific pill with like a aluminium foil covering on, I just try to remember if I felt the taking out of the pill and the feeling of the sharp edges. If I do, I know I took it. I don’t know what other examples to give. But I try to remember the sound or feel of something and it helps me remember. It is very strange, but it sort of help coping. Sometimes it does not work, but most of the time it does.

I must go and sleep now. Have a lovely day or sleep well.

Please tell me if you have any things you use to cope with the dementia stuff. I would love to know. I need to learn. I will share from my side too.

I will never give up or lie down. I will go out kicking ass… that I promise!

Much love and kindness

Saro

A fairy tale

One night at a youth gathering a beautiful young lady saw a lonely knight playing piano by himself on the stage. By some instinct or what was to be, she climbed up the stairs, joining him and just listened. Hi, I am Elmarie and you? See, she knew he was a Knight of the highest order by heart, but he only replied: “Andries”

Then the proceedings started, every now and then she caught his eyes on her. A warm feeling came over her heart. That was the start of a wonderful friendship. Now this Knight was ten years older than the lady, but it mattered not at that time. After a year of friendship the two decided to be boyfriend and girlfriend in those days. He was always on time and had excellent manners. One night he phoned and said that he will be late. About 3 minutes later he was at the door. Quite tipsy from a party at work and in his hands a bunch of roses with only a petal here and there, he most definitely borrowed it from some mystical garden along the way. He was so sorry being 3 minutes late, but the lady will never forget sweet gesture.

Two years later, the Knight and the Ladies father decided that it is time that they get married. But oh no, the Lady in the meantime decided that is not going to work. See, who wants to marry an “old man” Dropped him on shot, broke his heart and next day moved to another city. Never spoke to him again for five years.

After five long years, Lady Elmarie’s father came to fetch her from the city for a visit, he was driving in another vehicle in front. A vehicle came from no where and sent the vehicle spinning through the air. He were still alive, but I don’t want to go into details here. About a week later the Ladies mother phoned her and told her she came across the Knight Andries, visiting a friend in hospital.

Well she there and then decided to phone the Knight. When he answered and heard it is she speaking, he asked quite rudely: “What do you want?” Well in the first place she apologized and asked if there was any chance to be friends. He told her he will think about it. Being a creature of great thought, he phoned back two weeks later. Well the deal was that there can only be a friendship, as he has a girlfriend. Agreed, said Lady Elmarie.

A week later Elmarie’s father passed away and was buried on Andries’s birthday 8 December 1988. They were friends again by then and it only took him one week to tell the current girlfriend that he is going back to his first love. (A whole week shorter than it took him to phone the lady back lol) The Lady and Knight were in love again… or maybe just re discovered it or most likely it never went away. See true love have a way of staying.

January 1989 the Knight took the Lady for dinner. They just sat down and without further ado, the Knight took the Ladies hand and told her that he decided that they are getting engaged on Valentines day and married on 30 September 1989. Absolutely taken by surprise, she asked him if he isn’t going to ask her if she wants to marry him. His answer was short and sweet:”You had your chance” When the family were told about it, they decided that the Knight and Lady should get married on 8 July 1989, just for in case the Lady decided to play the “run away bride”.

Now looking back over 37 years of knowing each other and 30 years being married in which were born the 2 most awesome two princesses. There has never been any regret. Friendship and love bound us together stronger each day. In bad times we stood together to face the bad times, always.

It is so heart warming to still sometimes find his eyes on me and when I ask what he thinks…. “After all these years you are still the most beautiful woman in the world.” his answer will be. Someone once said he is the calm pool under me, the busy steam buzzing about. He has always been there for me and we for each other. A greater love… I doubt I will ever find.

How did you meet your loved one? Please share it.

Much love and kindness

Saro (Elmarie)

About words and the effects

Hello there 🙂

I came across this awesome blog full of such wisdom. Yesterday I had to battle through so many words, good ones, harmful ones etc. I actually feel emotionally and physically drained today. I tried to share this blog, but as I have to find my way everyday anew around wordpress…. Not WordPress’s fault, I will post a link. That part I figured out.

http://pointlessoverthinking.com/2019/06/21/life-is-just-a-moment/

There you go, please go read it. It just might make a big difference.

Toodles for now.

Love and kindness

Saro (Elmarie)

The face!

Walking down the corridor and then stop to look into the mirror on the wall. Mirror mirror who is the fairest of them all? Or should I say… what face does the world see today.

Up with the finger, push up left side of mouth, finished. Again, up with the finger, push up the right side of the mouth, finished. Smile grotesque in the mirror. Now the eyes, what to do about the eyes. They are dull, unhappy. What to do about the eyes?

Maybe it is in the heart and in the brain. How to mend the heart that bleeds all this sadness, words and feelings onto unknown ground. Ground harsh and unyielding.

Hi, how are you? I’m fine thank you, says the parrot.

Take a breath.

Hi there. I attended two Dementia Mentors Zoom chats now, which was so awesome and comforting. One thing my friend Tru http://truthfulkindness.com/ said, was when things gets bad, just take a breath. Now at the time I just simply could not figure out why she said I should take a breath… I didn’t stop breathing, in fact I’m still breathing. I didn’t say anything, because it was one of those things I couldn’t figure out again.

Yesterday was such a lovely day, but today kind of sucks. I’m crying, my head feels sort of empty or depressed, I don’t know. I just cannot tell why I don’t feel well. I just want to sit and do nothing. I did however washed the pots and pans… not finished yet, as I decided to wash one pot at a time. I tried to pour the water out of the one pot and somehow I could not figure out which way. Sounds stupid I know and guess what… I tipped it out the wrong way and all over me and the fricken floor. I notice that I’m very impulsive, maybe that was where the tipping went wrong.

See, I think this is where the “taking a breath” comes in. Maybe I should be less harsh on my self and accept that things are going to go wrong. I just read this blog http://elaineeshbaugh.com/2019/06/17/hey-dementia-community-stop-telling-me-your-challenges-arent-a-big-deal/ Bless her lovely heart.

Take a breath, calm down and start again, I think it means. If I cannot accept myself with this disease, how am I going to make it to tomorrow? One step at a time, one day at a time or you eat an elephant one bite at a time? So many sayings for going forward.

Today, I just don’t see it and yes all these things are a big thing, not just something that can be swept under the rug. I always wondered how I’m going to die one day, but it certainly wasn’t like this. I saw some dementia patients that were already in a vegetative state. It was so upsetting. But on the other hand, I can still live another 20 years without reaching that state. These are things I sometimes or at least today think about. I have a speech impairment, but somehow I can still write. It is not poems or dissertations or essays, but here it is time for being brutally honest, whether we want to face it or not and what if I don’t write the best blog or not does not matter to me. This is a journey and things to remember, like baking muffins. This is not over thinking or thinking of dementia all the time. Somehow I have to come to terms with it.

The last few days I keep on seeing in my mind how I could easily make an entrance into a room with confidence, sit down and get down to business. Today I just cannot find it in me to get up and bake some more muffins, because Nita decided to finish hers in one day, which is a big compliment by the way.

Ok, it is time to go and wash the next pot…. one at a time, hope the floor is dry.

Much love and kindness

Saro

What a lovely day

Today was just a westome. First my husband Andries and my youngest Nita came to visit me. (They are all looking after people’s pets and houses when they go on holiday and that way they pay their university fees) So first thing… I forgot it was fathers day and the dear donut never mentioned it to me. O well I found out about it on another chat I’m on and send him a nice message.

My friend Marian (on the left) baked me this lovely awesome yummy carrot cake.

Then my “babysitter” Marian fetched me. I was in such a hype… all over the place, even folded her washing and grating the carrots for the carrot cake. When the time came for me to make the chicken livers with a zing thing, I got stressed out and asked her to do it. It was so yummy! In between she were fixing her chickens, she is a chicken farmer and have some awesome chickens. Lora (my eldest) also are partners with her.

Look at this awesome chickens.

Then she baked the most yummiest carrot cake ever. I almost did not want to leave, but bed and taking meds time caught up with us. Thanks for being my friend Marian, I know you read my blogs.

Much love and kindness to all.

Saro

Muffins LMAO

I simply got to tell this. My young ladies got me to make savory muffins just now. First time since things went south for me. I searched and searched for a recipe, got one and went to the kitchen. I went into a panic, but they just told me there is no turn around.

So first me and Nita argued whether I should first put butter in the pans or first make the dough. Right Nita won that round. Did it and thought it was not a nice job but I finished it. Then first mixed the dry ingredients with the meat, cheese and corn, then discovered that the mustard, salt and red pepper is also dry ingredients, but what the hell, I just put it in. Then mixed the wet stuff, got confused about the size of the eggs and if I should put one extra in. Good, mixed it together and spooned it into the muffin pans. The oven was already on.

Quite happy with myself, I sat down and started reading my messages on my phone. Next moment I realized I never looked what time I put the muffins into the oven.

Panic broke lose!!!! Nita said, don’t worry mum, just play it by eye, if it is brown, take it out. Lora, nahhh not to worry everything will be ok. I kept looking at my watch and I simply could not make out the time. Then I realized I must have pressed a button on my watch that changed it from pm/am and then tried to figure out how long it is in the oven.

Then Nita went to the kitchen to make us some coffee. I NEVER EVEN PUT THE MUFFINS IN THE OVEN. Everybody was laughing. It was so so funny. Then Nita put the muffins in the oven and set her timer. Now just for the results and the next batch. Going to make lots and lots of muffins.

Life with dementia can be fun too 🙂

Much love and kindness

Saro