My life with dementia and bipolar disorder.
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.
I woke up today.
Stroked a bunny after feeding him.
My youngest is coming home.
Holiday is starting today.
I had such fun with my Dementia Mentors friends last night.
Ok, I am going to try and do this every day. Counting my blessings. I challenge you to do the same. If you decide to do the same, post a link back to this post and use the red rose, thank you.
Much love and kindness.
Saro (Elmarie)
Hi there! Hope you have a lovely day. Mine is spend thinking. Hmmm the moment I say that I’m thinking lately gets me in trouble…
But let me go on thinking. Listening to Joel Osteen etc about this wonderful future awaiting you… does it still apply to me? I do believe God has the most wonderful plans for my life, but at this second I know how my end is going to be. I’m unable to work anymore, although I still go in to work every day. It’s my business, but my two wonderful daughters is taking the brunt of the work, leaving just a bit for me that I can still manage. I messed up trying to organize things twice this week and I was in serious trouble from the Love bird, Bunnies, kids and husband. I can not organize or plan things anymore at all. Cannot remember the details anymore, but whatever… I can not do that anymore.
I have been so upset yesterday, I took out some stew to defrost and cook in the pressure cooker with some nice veggies and rise. No!… said my husband, he does not want to eat three hours later, just take out a chop. Leave the eggs, it does not smell nice, don’t want potatoes, he will just eat bread later. So we each had a rasher and there I was… just couldn’t think what to do next. I cannot handle his aggression or frustration or anybody else’s. I don’t know what to do, he is entitled to venting or frustration or whatever same as everybody else and that includes me. I went hungry for the rest of the day, because I simply and still cannot think of what to do. My sweet Nita came home baked her father his favorite chocolate desert…. old man appeased and mother fed. She did not say a thing, just carried on as if nothing is wrong.
I wanted to talk about virtual friends on the internet and things like that, but I suppose I had to get this out of my system. It is terrible having dementia in whatever form. It breaks your heart and worst is when you still are aware sometimes of what went wrong. Blissful when I don’t know what I missed.
But… here is the BUT! It is also an opportunity to do new things. Mostly things you like. You can have a life with dementia, whatever form, until that time… you know … that time? We can still have many meaningful years. With loving caregivers or family, it can be okay. Just get up and do something.
Well I have not yet tied myself to a rocket and flew to the moon, but I started writing, something I always wanted to do. I found friends with the same disease than me and believe me… we are not crying or moaning all the time, we can be really funny and goof off. I already have two speaking engagements for Mental Health days. I made a video for Dementia Mentors… hiiiyaaa!!! I just don’t know how to get it on here. https://vimeo.com/362831539?fbclid=IwAR2N4X57SwyYrvQgirf-EuK3uEqpnTrNjVoho7ceFTaPTP2AzWxs2PJwwto
I hope that thing or link or whatever takes it to my video… Anyways, let me go and convince my youngest that it is very important for my general health to have some pancakes with sugar and cinnamon before bedtime.
Much love and kindness
Saro
Okay…. his name is not John, but I don’t think I should put his real name here. For those that know, will have no problem recognizing him, specially if you live in the Southern Hemisphere of the planet called earth.
Now our friend John was one of the first people visiting us when we moved here. He came and introduced the deacon from the church. We talked a lot about God and I mentioned we really have God in common and should make nice friends and visit some…… His answer, looking over his glasses:” I don’t think so!” Well so much for making our first friend.
O dear, it is difficult not to get off topic or take a very wide turn to what I want to tell about John. Let me make it short. He irritates the sh*t out me. I will do anything to avoid him. whether he is invited to something or not, he turns up. Whether he was asked to do something or not, like public speaking…. he will create his opportunity and do it anyway. He actually once invited me formally for a project that I arranged for the NPO I was chairperson of. The town are just used to him. Sometimes he gets a spanking or two… but don’t think that bothers him… no sir! It is not my intention to slander the poor soul. It was sad when his wife passed away… she did everything for him. I don’t think his intentions are ever bad… but, as I said… he irritates the living daylights out of me.
Now here comes what I actually wants to tell about. I haven’t been in church for a while, sometimes my husband goes without me. I think I have been telling that I lost my friends, no one came looking for me when I disappeared off the face of the earth. Some friends texted me, and then everything in town just went on it’s merry way. We all happen to have our own place where we sit in church.
My husband came home this morning after church and told me the following. John usually sit right across the church in line with us. My husband said he saw John sat down and the next moment he got up and left again. Not long after that, John came and sat next to my husband, asking how everything is. To which my husband replied that I’m sick and things is not well after the last stroke and with the dementia. For the rest of the service he just quietly sat next to my husband. Just silent comfort………….
Much love and kindness
Saro (Elmarie)
Now for the fun stories I remember! This one is about my youngest Nita and a container full of turmeric or actually my homemade curry mix.
Now I was on the telephone chatting away with a friend of mine, when it happened. SILENCE!!!! Now every mother should know that when your kids are quiet, they are busy with that being naughty thing. Nod your head if you know what I’m talking about.
Saying bye, I put down the phone and went searching. O, dear! I found Nita sitting in front of the bookshelf tearing out pages of my favorite books, but that was nothing, believe me. Apart from tearing out pages the little face looking up smiling was covered in curry. Yellow from top to toe.
Now in those days being naughty received a whack or two on the bum. I just couldn’t. I ran to the bedroom, covered my face with a pillow and laughed and laughed and laughed. It took some time to recover.
I went back, dusted the little nugget’s bum with a slight wack or two and pulled her through the bath.
End of story????? When dressed again she put her arms around my neck and slobbered me with kisses all over my face. What a wonderful gift kids can be. Today she is 26 years old and the sweetest loving munchkin I know, still hugging and kissing.
This is my loving memory for my family for today.
Much love and kindness
Saro (Elmarie)
Hi there, long time since I wrote a blog, but life has been hectic. Today I want to tell about my friend Omar or Hades108. It is a story of kindness and friendship. Someone showing kindness and understanding for someone with Dementia.
I have been playing an online game for the last four years, that really provides me with a lot of fun and a lot of good friends. The game is Dawn of Titans. Now Dawn of Titans is played mostly by older people that really are children at heart. I am not going to explain the game now, but might later on write about some adventures. It is not a aim and shoot game, but strategy between alliance members
One day I found Omar in league chat asking for an active alliance. I send him a message that he is welcome to join a fun active family. To my delight he joined, as I was trying to recruit for my alliance. He was level 14 and I thought he needed training and pointers to play the game. So I started with training. Then this rascal informed me that he is a beta player. Now a beta player is someone that started playing when the game first came out. He forgot his password and could not find his account. Dang, I felt like a fool, but then I realized he hasn’t been playing for three years and as the game keeps on evolving… so he was sort of a newbie lol. Not anymore thought.
Apart for communicating in game, the players communicate or hangout in Line App. My in game name is guess what…… Yup, you’re right, Saro.
Omar lives in Jordan and I in South Africa. In March this year I had another stroke. I got a message from him, saying I better get well or he walks across Africa and I don’t want to find him at my door. Sweet munchkin, it warmed my heart so much even though I was sort of really out of it. I could not communicate or think and my left side were paralyzed at the time. I found the message when I started to recover.
He always said the nicest and kindest things to me in game and in line. The next communication we had, was when that lunatic in Australia/New Zealand (can’t remember of cause) killed all that Islamic people in the Mosque. Now I am a christian and he is of the Islamic faith, but a mosque, church or temple is a place where people feel safe. So I send him a private message saying I’m sorry for his brothers and sisters in the faith got killed.
He replied that it is okay, because they believe they go to heaven if they die in a mosque, but his heart is broken for their families. So we started talking and really became friends. Now Omar is 22 I think and I’m an old lady of 56. Omar has the most wonderful manners… his mamma raised him well. When I told him I have dementia, he said that he is talking to Saro, not Saro with dementia, but a person called Saro that is kind and good. That is the most awesome thing anyone with dementia can hear or experience. Some people think when we start forgetting or get into the later stages, it is just a shell remaining. Not true, a person is a person. Somewhere in there is still a person with a story. We had a video chat the other day and he showed me the sun going down from his house’s rooftop. It was breathtaking. Doing that was so special and he just is this nice young man.,.,. He is not perfect, I’m not perfect, but small things in life is so important. During Ramadan he texted me everyday at the same time to say hello. He told me they believe to do good things during Ramadan for other people, and I guess I was one of his gifts. Thing is, it was not just a Ramadan thing, he always am my friend and I am always his friend. I am honored to know such a kind young man.
I was thinking about what to write other than dementia. Then I decided to start writing short stories from my past and family. I think it will work?
Anyway, much love and kindness
Saro
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
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
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
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
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
My life with dementia and bipolar disorder. 