Positive

Positive. See, I just started my blog positive. It is a desperate wish of mine to start or write today’s blog positive…. NO man! not positive for COVID-19…! Positive in attitude, thoughts, any other suggestions?

Everything feels so negative. I have no contact with the outside world… wait!!!! My Zoom buddies. O dear, we can be so funny, but I notice that we find it more and more difficult to keep the conversation light and funny. All of us…. for those that don’t know, have some form of Dementia and are early onset. We understand each other and even though the contact is virtual…. we figured Zoom out plus minus before the rest of the world, I would like to think lol.

What I wanted to say is, that we actually are a close family, even though some of us are really live across the pond. The two from England Peter and Andrew are on their worst behavior. Andrew just tested positive for COVID-19 and Peter is in hospital, being tested. Now I worry my self in a spin. They are important to me, all of them are important to me and I guess we are all important to each other. I love all of my Dementia Mentor friends so much. Creeky takes me to the beach on Sundays in Corpus Christi Texas. Ok… we chat on Messenger and she show me the beach and sea and birds flying over. Just got to love the girl with that nice bottle red hair of hers.

In the beginning of the lock down thing and start of the virus, I was concerned, then it escalated to worried, then anxious and then plain scared. Now I just feel numb, don’t feel like doing anything. The dishes in the kitchen is singing:” Tomorrow, tomorrow… tomorrow” In a lovely falsetto tone. And me…. just bugger off Okay!!!!!!! Imagine the dishes and pots etc, forming a line and starts a march across the field, past the cows, waving at the crows, saying hello to the sheep or something like that. Or I just might… Okay am definitely digging up my firm believe of fairies. Fairies whose sole purpose is to make me comfortable and then clean the house, do the dishes and I can supply them with a nice menu. A girl can dream or what lol.

Got to go, our President want’s to talk to us…. God save the Queen…. no… that the Brits!

Good night, Good morning and Good afternoon dear friends and family and now, I did not drink, it is against the law here in South Africa.

Saro (Elmarie)

Lock down effects on person with dementia

Want to give credit, but I have not idea anymore where I got this picture…

Hi there. Don’t know if I should ask anybody how are you, because I think this COVID-19 virus thingy is now getting everyone or most people down. If you are not staying inside and quarantined, you are an idiot.

See, I use words like idiot… not that it is a strange word, but this virus is turning some of us into things and people that we normally not would be or want to be.

Our biggest enemy, apart from the virus, is our thoughts and emotions. I have not been feeling well lately, everything feels “foggy”… like I will walk around, from here to there and have no fricken idea of what I am doing or wanted to do. Have a million things I want to do, but it just seem too much. Three pots to wash, is just too much. I feel frozen… paralyzed… It is just too much. I set myself 3 things to do. Blog, making Jewelry and playing my online game. That’s apart from caring for my children’s zoo, cooking (that is daunting as well, because I make more of a mess than anything else. The successes are much less than the messes.

I battle to think up something to cook. Google recipes, but then get bogged down in it and turn up with nothing and time for eat is long gone and my husband walk around with a slice of bread in his mouth. The only time of the the day I’m actually hungry is ten o’clock at night. Strange but true. Wonder if that’s my brain not being so fresh or what ever. Anyway, I do eat, because my husband must eat.

People does not realize that a person with dementia, whatever type, get to a stage where words are not making so much sense all the time anymore and we have to read the facial expressions and body language. to get to the whole conversation. Extreme expressions or reactions of other people absolutely put our brains in a standstill, with tears or whatever proper or improper reaction from our part. I don’t know how caregivers are doing what they are doing, but it must be difficult for them. Then on the other side, just think how fricken difficult it is for the person that actually have the dementia.

I forget, then I get reactions or feedback from other people that I have NO idea what to do with or how to react to. Being a caregiver must be difficult, but if you are a selfish I, me and myself type, put that person in an institution and get on with your life. Harsh words, but that is how I feel today. Nobody asked for this condition. It is stealing slowly but surely my whole being and life from me and I fricken hate it.

Something that also happens is, you had a fight or something with someone and all that happens, it gets stuck in your head. You don’t know how to get around it. Pieces in between just gets lost and all that gets stuck in your head is guess what…… the fucking fight. There I said the word… Fucking. Should I put a sign “not for sensitive readers” or something like that at the top. I don’t know… deal with it and just get over it…. you most probably can, while I might have some trouble with it.

Caregivers might have real trouble handling their loved ones, but guess what a person with dementia don’t know either and eventually don’t even know. My know and not know is getting less and less. I don’t really know all the time anymore when something went wrong because of me. The awareness is wearing off. It scares the living daylight out of me. Am I slipping away? My brain is deteriorating, is dying off. That is absolutely fucking horrible. I don’t feel sorry for my self, although not at this moment. Now I do feel sorry for my self and I’m crying as discreet as possible, so that my husband doesn’t see it and get upset.

I had a fight or whatever with my eldest daughter today. I tried to call again later, to try and fix things… I just couldn’t . I feel so paralyzed. I don’t know how to fix things or organize or even reason or plan anything anymore. The how is gone. Seems I can still write, most probably full of mistakes and so on, but that’s it, at least I try.

In spite of everything, I must continue to be brave and not give up. God help me… here I am!!!!!!!

Saro (Elmarie)

Day 6 of lock down.

Titles is getting boring….

Hi, it is day 6 of our total lock down. Thus far my intention to write, play game and jewelry is successful. My friend Marian visited and we made cinnamon and sugar pancakes. She told me to make the batter. I think her intention was to let me feel I can still do somethings myself. Thing is, I could not understand the recipe. I could not understand the measurements. It is so strange, my brain just refused to make sense of it. I ended up putting a quarter cup vinegar in, very happy that I did not have to battle to get the liquid in a tablespoon and make a mess. Eventually I started crying and she took over. All you could taste was vinegar. She did not know about the vinegar measurement that I was so relieved about. Well it did not taste that bad and we finished the lot.I just made myself some chicken livers and that was a success, what a relieve and pleasure to my taste buds.

That was only one of my boo boo’s today. We had our Dementia Mentors Zoom and one guy Cecil made a quilt. That’s a story for another day, but thing is, he is so funny. He has the most wonderful sense of humor. He makes me laugh and he truly makes me happy. Well he made another joke and I insisted to give them the word in Afrikaans for a really funny guy. Grapgat. I translated it to Joker asshole. I saw everybody just looked at me and I tried again…. a big hole of jokes. But I told him, he makes me laugh and happy. He actually cried. Afterwards we talked on Messenger and I apologized. He then told me it is a word you cannot translate that belong to a certain part of a country and came up with the words a “well of jokes”. Well that is accurate and really sounds better. This guy speak I don’t know how many languages, so he could figure it out.

Got to go, sleep time and my meds is busy kicking in.

Lots of love and kindness

Saro (Elmarie)

I’m back blogging.

Ok, I’m just going to type as it comes up. I have not been blogging all this time, because I was afraid that I cannot do it anymore. It was shaky according to my standards already, but let me not be harsh on myself… I do have early onset vascular dementia after all.

I started out getting an image, which I don’t like anymore, but decided to keep it anyway. I woke up one morning somewhere end last year and my speech was almost gone and what was left, was incomprehensible. It was dreadful. I already had aphasia after the first stroke, but not that bad.

Well I started making paper beads and then jewelry. Something I just could not believe, because I have severe hand tremors. At one stage I could not write, had to be fed etc. I so felt pathetic, which of cause is stupid. How can a person feel pathetic about something you can’t help. I just tried to email from my phone some of the photos of my jewelry to my laptop, but the fricken thing updated again and of cause I will have to figure it out again from scratch. Well to make this shorter, my hand tremors improved and my speech. How that works, is beyond me, although I read on google that they use art therapy for speech problems. And of cause, God is awesome and deserve all the credit, because He is the one putting this paper bead, jewelry making thing in me. I don’t care what doctors say, that’s what happened to me. I do not take new medication, in fact the medication I’ve been taking for my hand tremors, my pharmacist is unable to get hold of.

In the meantime, I noticed that my memory is going downhill. I always was still aware of what went wrong, now most of the time I just don’t know, which in a way is bliss. Not beating myself up that much.

My family also is making progress. There is no more…. don’t worry mommy I also forget with a whole story about the forgetting. What most people don’t realize is that normal forget is something you can be reminded and you remember again or going back in your tracks or whatever trick you do to remember something…. with us there is just a black hole… nothingness. Whatever we forgot just never existed where it concerns us Us, being people that falls under the dementia umbrella. I have a note for the 30th of March in my diary to contribute for tommy otter. Who and what the hell that is, is beyond me. It is written with my pink pen in my best handwriting. Oh well, one of those things. It kind of suck to put something in your diary to remember and when you get to it, have absolutely no idea what it is.

I can’t remember what I really wanted to say, except that I wanted to see if I can still write. Well I hope it is not to shabby. My reading is starting to suck…. long things only get read about a quarter in, then the not remember kicks in.

Now since I don’t like too long stuff let me say bye. This was day 2 of total lockdown for South Africa. Hope I will be able to organize a schedule. Jewelry, blogging, online game and ofc the chickens.

Toodles

Saro (Elmarie)