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.
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.
Today I would like to tell you about a very big kindness paid to me recently. Having dementia, sometimes makes you very lonely. There is always the anxiety meeting new people. Sometimes you get confused when people talk too fast…. believe me it sounds like blah blah blah. Sometimes you lose the conversation not even halfway in.
I went with a friend on a trip, not too far, only about an hour and a half drive to Jeffreys. I love my friend, she is the best ever. Before we went on the trip, we had to spend three hours in the bank, to take my signing rights off of the NPO’S financial stuff. I served 4 years as the Chairperson. That three hours, was an ordeal for me. This and that and twelve other things and me feeling like a fart in a bag of nails…. excuse the expression, but it was what it was.
When we got there, we had a lovely lunch and when we started walking…. her walking fast like Castor Semenya and me walking with my crutch far behind. Then I told her, I decided against buying panties and time is running out, so I sat myself down on a bench in the mall.
It was a bit lonely but there I was. Next moment this stranger stood in front of me. A lovely young man, nicely dressed and soft voiced. “Good day auntie, may I ask why you walk with a crutch?” I told him the left knee is not so nice anymore and he there and then sat down next to me, asking if he can pray for my knee. I said yes. So he subsequently prayed for my knee. We started talking about when we met Jesus Christ and just have a nice chat about my favorite topic…. Jesus. Then he left with me giving him a hug.
Now unfortunately I’m not jumping around with a knee all fixed and all, it is not that I did not believe or something or that God did not fix my knee. But that day, that young man left his house with a purpose and just came to stand still by a scared old lady, whose head is more on crutches than her knee. It touched my heart. I could feel the love and company of God that day as a special treat. Don’t misunderstand me, God is always with me, but just that gesture, that intent to be kind, made my whole day.
So if you are looking for something nice to do, get up, get dressed and go see if there is some old lady that you can just go and stop by and talk too. Anything will do, even just introducing yourself and sitting there and if there is conversation, do it. It will make you feel good as well.
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?
Hi everyone.😊 Me and my eldest had a fight today. I suppose it’s my fault.
I feel guilty because of the stuff I can’t do anymore. But thing is, I did not ask for this dementia thing and it’s not my fault.
My house was running very smoothly up to some time ago. Everyone had his task and responsibility. Each were allotted that which they liked. So smooth running.
Now we have to adapt and I notice, that it is not that easy. Well adapting in itself is a difficult thing
I tried to make food today and halfway I suddenly felt heavy, sleepy…. As if I couldn’t move or think. It happens often now. I’ve been advised by my Dementia mentors friends, that I should go sleep, but I couldn’t. Lora actually came home to pay the bills, which I can’t do anymore. She eventually finished the cooking, for which I’m grateful.
We will have to adapt somehow. I mentioned many times how my heart is broken for me and my family. I suppose I will need to let each one come to terms with it on their own. It still is a painful thing for my family to discuss.
We have always stood together, face the problem and fought it together or found a solution. We always came through the toughest times and situations. This is no different. We have before and we always will, because we don’t have to do it on our own or own power. God is with us, have been and always will be…. and that is enough.
I don’t want the strokes… I don’t want the dementia!!!!! It makes me miserable. Some days I feel courageous and other days I feel like this. I feel stupid, incompetent and useless. If my family reads or hears this, they will assure me that it is not the case, but it is how I feel.
The Bipolar does not help either. It is something that has been haunting me for practically all my life. Suicide attempts, horrible highs and then the terrible downs, where all is black with no hope. There is also the aggression. That is the worst of all. It makes me a monster. It harms me and my family equally and sometimes I think it harms me most because of the guild and sorrow.
I am on so much medication that if I take any more, I will be a slobbering fool. The medication is a mood stabilizer and the Dopaquel takes care of the aggression and insomnia. Obviously there is nothing to be done on the dementia medication wise. They gave me Memantine for 6 months, to see if it keeps the decline less, but I don’t see any and have stopped taking it. The other medication I take because it keeps me alive.
Then there is the anxiety and epilepsy…. I think I cover almost all the bases on what can go wrong in the head. Thank God I am mentally and behaviorally stable and don’t have personality or something like that problems.
I just can’t stop crying today. My husband is in a sh@t mood as well and that’s not helping. I cannot handle conflict. That simply is too much for me. I feel as if I cannot do anything anymore, which is not really true, I can still wipe my own butt so to speak. I keep on putting things away and when I or everyone else starts looking for something such a huge cloud of anxiety comes over me.
I cannot say something about my husband here, because it will not be right, I do love him though, but I think he needs help as well mentally. How to address that is beyond me. My kids are a tremendous help and comfort.
All these things is not written on my face, or scars or something. It is in my fricken head. As long as I keep my mouth shut nobody will be any the wiser. I do have a speech impairment because of the strokes and the cognitive impairment is …. as I said as long as I keep my mouth shut.
But how can I shut my mouth and not talk, because with the dementia in the later stages my speech will disappear all together.
Many people think that having dementia of whatever kind you are immediately unable to walk talk or function. It is not true. You can still have a meaningful life for many years until THAT DAY comes. Yes we need assistance and the assistance will be increasingly needed. But people are not all of a sudden this monsters that does not want to shower or whatever. Yes I feel sorry for the caregivers and I am very very grateful for what they do. They dedicate their lives to take care of their loved ones. Thing is the ME does not go away. I will always be there, even if it looks like I’m just a shell. Nobody can suddenly go from somebody to a nobody. Until the day you die, you will be a somebody with a name. I am Saro or Elmarie.
All this is breaking my heart for myself, my family and everyone that have the same conditions. But life is not fair. Nowhere is there any guarantee that life will or is moonshine and roses. If someone have cancer or some other disease everyone go and visit etc. Most of the people that I speak to that have dementia said that they have lost friends and even family. So many are lonely. I am so grateful for Dementia Mentors that introduced me to friends that are the same as me. Days like this I just want to curl up and die or something like that and no dear daughters of mine that reads my blogs you don’t have to put me on suicide watch. I will most probably recover and be on my merry way again. I am not going to re read this post so please put up with the mistakes and thank you for reading/listening, it is appreciated.
My head is so foggy and down right screwed today, but it was all worth it.Actually my head feels like that chicken’s hairdo. Yesterday Fairyland pre-school had an outing to a friend of ours chicken farm. The picture is of my eldest daughter with her favorite Sylky chicken, Lora (She writes as She Wolf). This is a link to her blog, she gives her side and experience of living with my dementia. http://adairyandsomefeathers.home.blog/2019/07/25/are-two-heads-better-than-one/
Well I volunteered to do the chickens and rabbits. They came in 5 groups. First group, the teacher had to give me a few pointers as to what to tell the kiddies. Like where the chickens comes from… o dear. Second group went a bit better, but by the third group I had to keep on asking the teacher if I said this and that already. Lol one kiddie picked up a rabbit poop and put it in his mouth. I just put my hand in front of his mouth and said… spit… spit.. spit.. The next groups went a bit more difficult for me, but I managed. I am so proud of myself that I could do that. After that I still had to do my kids at the Aftercare Center… that pushed me over the edge. But I still managed.
Having dementia does not mean you are useless. You can still do things other people do and I’m not afraid to venture out. It is difficult to keep my thoughts straight writing this. I made friends on Dementia Mentors Virtual Cafe that can’t read or recognize people anymore, but they still give lectures on dementia… our side of it, to big audiences. And there I fricken cry again. I realize there will come a time when I really will not be able to do anything, but while I still can, I will live life to the fullest.
Something that is sad, is that people that loves you becomes so protective that they just don’t want you to do anything. I took my night meds the other day instead of the morning ones the other day. Nothing happened, I just slept all day, that I think just did me some good. I recently stayed 3 weeks on my own, with my friend across the road checking in on me without any trouble. I just cooked our meals for 3 weeks on my own… with instructions, but I did it without setting the house on fire or harming myself.
Can’t remember what I really wanted to say anymore. Let me go see what I can do without using my brain…. Wonder how long it is going to take me to recover.
Just a note to whoever knows me and reads this… don’t worry because my head feels shit after everything I did yesterday, I recover and will kick your fricken arse if you refuse to let me do things again. Please I want to.
Love and kindness and sorry for the bad words at the end.
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.
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.
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!
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.
My life with dementia and bipolar disorder. 