Empty

Last night I had a 100 things I wanted to write about. Today my head just don’t seem to want to work. I guess today is not a good day. I wanted to cook today, but just couldn’t. Lora eventually did. I thought I will help, but used the wrong pot or pan, just couldn’t see or realize that a bigger pot was needed.

I read some of the reports from the neurologist and other specialists and the CT scan. Most of the things I googled, but here is some advise….. don’t read the fricken reports, it is upsetting. It is worse enough to live and try to cope with dementia than to read the clinical and emotionless reports. Expected cognitive decline, slight retardation and some other sh@t is not good to know. Yes you have to know what is happening to you, but some information is just too much. I used to be a highly functional, capable and intelligent person. I believe I still am within the parameters of the vascular dementia and the damage the strokes caused as well.

Jennifer that I met on Dementia Mentors used to be a doctor. She also have dementia, she told me that they very often call her to sit with someone that is dying of dementia and they go peaceful. Shawn another friend of mine from DM told his sister had a near death experience. She said it was so peaceful and happy and she felt so whole. She did not want to come back. God is awesome. He will never let me down I know. Jesus is my only hope and salvation, my peace and my joy.

At DM we also discussed “getting our affairs in order, while we still can” This is something I must thing about very hard. I know I will need to give my family power of attorney, my will and I want a living will as well…. have to figure that one out still. Me and hubby discussed this. I want to go to a place where they can care for me when the time comes instead of staying home. They can visit me a hundred times a day in the care facility and I can meet them a hundred times again, but I refuse letting them give up their lives caring for me when I’m bedridden or something like that. I know they want to, because they love me, but I’m not selfish. I want my kids to have their own family and life.

I think I said enough now…. Thanks for listening.

Much love and kindness

Saro

Topsy Turvey

Hello, hello, hello!!!!! Me here 🙂 O dear, everything is so busy in my house. The kids are doing teaching practice, I cook, try to play my game…. which sadly takes the back burner. My Titans and fellow Dawn of Titan addicts will just have to understand.

What is good, is that I cook, get everything ready to go to work etc. etc. etc. Even though it is done with reminders and instructions. Thing is, I’m still able to do that and hopefully will be able to do it for a long time still to come. Dementia creeping up on a person can be quite intimidating.

Something I enjoy doing, is to Zoom with my fellow dementia friends. It is simply awesome. Sometimes it is sad and we discuss what needs to be done before you get to that stage where you are not able to function anymore. Other times we wonder if there are other planets with interesting people on is and lots of flowers.

My eldest brought a nice snotty nose home with compliments from a class and 40 preschoolers… and passed it on to me. So I feel like a troll. Well a snotty nose is better than the german measels the youngest brought home last year. Sorry if this is a bit tmi lol.

I want to watch my Netflix series… When calls the heart. Such a warming story…. no time now. So there’s a suggestion for a good series.

My two brothers buried my mom’s ashes this weekend in my dad’s grave and I found out that my second youngest brother eloped in May. He got married in the magistrates office and never told us. That hurts. I would not have been able to go, as I cannot travel far anymore, but would have loved to phone him and say congrats. I really am happy that he found somebody after been lonely for 50 years. Never been married or had a girlfriend in his 50 years and now he found a mate. I am so happy for him.

Another thought I’m working on is to get some sort of dementia awareness and groups or connecting people with dementia in South Africa. All I find on Google is for Bipolar and depression and anxiety. I have all that, but it is nicely controlled by medication and I’m as happy as you can get. I think I must change my blogs name and take the bipolar part away, since I’m obviously so not going to write about that.

I mentioned it to some of my dementia mentors friends and were told it was very difficult to do and it took 6 years to get where they are now…. Well a person can try is my opinion.

Okay thanks for listening or reading or both. My alarm went off… time for meds and I don’t want to go sleep now. Already had my first warning to get up and get to bed.

Talk to you guys again… by the way… Topsy Turvey, got no idea what that means, but it sounds nice.

Toodles

Saro

Hi there 🙂 Here I am again… Wish I could write more, but today I would like to tell you about the name Saro.

In 1994 I started a relationship with the dear Lord Jesus Christ. One day not long after the happening someone told me the following story.:

A woman went to a small town without anyone she knew knowing. Every day she would go sit quietly in a small chapel after first putting a yellow rose on the altar and said:”Lord, to You I pledge my loyalty”. She did that for a whole week and then went home. About three weeks later a friend of hers came to visit her. Her friend gave her a bouquet of seven yellow roses. Her friend said that for three weeks as she went past the flower shop, she heard a voice telling her to buy her friend seven yellow roses and tell her Jesus pledged His loyalty to her. She said she argued and said, why not red roses for the blood of Jesus or for love. But the voice was persistent. So here are your roses and Jesus says He pledge His loyalty to you. The woman started crying and told her friend about her visits to the chapel and the yellow roses.

This story really touched my heart and I would think of it all the time. One night I woke up and I saw a hand writing on my wall: SARO. I asked what it means, because I knew it was God, and he said:”For ever faithful” I fell asleep again after that. The next morning as we left the house, next to my front door was a rose bush with yellow roses on. We did not plant it, there was no indication that anyone planted it there. It had roses all year around, never needed special care. It was special. Since then, my name was Saro in my heart. No, nobody calls me Saro, they call me Elmarie. When I write something I write it as Saro, I name my pets Saro, my name in my online game is Saro.

Saro I am…. for ever faithful to my dear Lord Jesus and He to me.

Love and kindness

Saro

One busy day!

What a busy day. Eldest daughter making and experimenting with hot sauce to sell for an extra income. She keeps on insisting that I taste it, but listen, let me tell you. It will be the day if my mouth burns so that steam is coming out my ears like a steam train and me hooting searching for water.

The youngest want to make soap for an extra income. She already bought two ingredients. Coconut oil and peroxide something. When I asked her to show me what it is that it is she bought it was drain and cement cleaner. O dear Lord. The skin will come off. So we convinced her that pealing skin off a person is not going to work. Now 7:35 pm she found a lotion recipe. Off she go like a happy little hamster. There goes my essential oil, but that is okay.

I am so proud of these two munchkins of mine. Real entrepreneurs. In between they are preparing for their teaching practice that starts tomorrow.

My friend Marian had to run after 4 little piggies that got out all day, she is bushed. I had a zoom chat with Dementia Mentors and misunderstood something about one of my friends leaving and I thought it was the zoom chat, which I live for. It is where people with dementia socialize. So I started crying and trying to give him advice. When I stopped with my advice, they kindly told me he is going nowhere. It is about some other thing that he is doing. O dear….

OH me and my husband are married 30 years today. What a wonderful thing. To love and to be loved for so long. Poor man just looked at us and shook his head.

Now I have to go take my meds and go sleep.

Oh sh@t…!!! youngest is using my almost new kitchen utensil for her lotion experiment. Eldest… don’t break it, I need it for my hot sauce. My house is a disaster area. Tomorrow my Aftercare Center starts again tomorrow after a three week holiday.

Think I must go sleep now. Nooooo don’t use my bottles, it was expensive, going to charge you with theft. I’m hungry. In between they are watching netflix. Dear Lord, how I love my family

Toodles

Saro

It is happening to us.

O dear I don’t know how to start this blog. Maybe just hello? My eldest daughter started wring a blog as well. http://adairyandsomefeathers.home.blog/2019/07/06/sad-thoughts/

Maybe writing will bring a bit of consolation or understanding that which we cannot really talk about for now. When I was first diagnosed with vascular dementia, I was so self absorbed in this horrible thing that happened to me, I did not even think of what my family must go through. There was a certain relieve to know what was wrong with me. Now it has a name and we can get educated and take it from there. It was just dark for me.

But the reality here is that I have vascular dementia, but my entire family are affected by it. They are horrified by what is happening to me, as my daughter wrote at the above link. The denial, facing the reality of the disease, watching me being affected and having to take over all my responsibilities. Putting extra stress on them, but one thing I know, is that they love me dearly and I them.

Some way we have to adapt to the circumstances and changes. But how?

THIS IS MY VERY INTENTION!!!!!

Got to go. Much love and kindness.

Saro

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)