Living with dementia in lockdown for me.

I remember all started with a panic. See if we all have enough food and money. My youngest ordered lots and lots of masks and sanitizer, which is very good. For me, anxiety set in. When I am anxious, it feels like my head becomes a stone. It cannot think, reason. My words became less and less.

I dwindled down to being unable to count or any figures, I cannot read or follow a recipe anymore. I did not blog, because think is difficult, even find words. As time went on, tension become more and the moment there is conflict my brain shut down. I can literally not move or communicate. Then I cannot talk for few days. Miss every third or forth word. Difficult to hold conversation, because no social interaction. I do however have my Dementia Mentors friends with whom I try to zoom every day.

My concentration is down, I will wonder around wanting to do something, forget then find something else and then forget that something else as well, went back to my chair. When my daughters or husband go to work or somewhere, I become anxious, because I cannot remember where they went or when they come back. Then I want to send them Whatsapp and forget that and later wonder if they will be angry if I don’t send message and then forget that too.

My filter also broke. Saying things I should not say, like hurting someone or tell someone something I shouldn’t, not that we keep secrets, but sometime there are things you don’t say in public or to you family or to anyone.

It’s getting on my family’s nerves that I ask say 3 times in a row how they are and just forget I did. The forget thing is weird. I forget… it is like a black hole where nothing even ever existed. I started making jewelry, that helped keeping me stimulated, but lately I cannot think up new designs. I went to my GP yesterday and he asked me to take off my jacket and I asked him which one, as I was wearing two. He looked at me and said both…. that’s a bummer and I remember it. I don’t feel in control anymore. I get anxiety when left alone for a few minutes. Then I don’t know where everyone is.

I don’t know if any of this makes sense. I don’t catch a joke anymore, no matter how many times you explain it. It is difficult to communicate without seeing someones face. So video call works better for me to understand something. In this time of lockdown I really have no sense of day, date even time anymore. It is one big sleep time and awake time.

A human being needs to socialize, if your brain don’t function and the basic requirement of socialization even on the most basic and way, like saying hello to the lady in the pharmacy are deprived of, it shuts down. The few thoughts you have gets muddled. The other night I was lying in bed and the weirdest thing happened. I tried to think, but all the words were like a lot of colored marbles in a bag, refusing to form a sentence even a picture. That happens more and more with me. Communication, it becomes more and more difficult. When there is confrontation, I just use swear words and say bad things, because I cannot sort matter in my brain to fix confrontation.

Got to go, stay safe.

Lots of love

Saro (Elmarie)

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 7 of Corona virus lockdown

Been a busy day today. Cleaned the chicken beds, washed the floors, vacuumed, cooked…. and thought out some stuff I want to bake. Thinking out that stuff was hard work, since I want to do it tomorrow…..

List: Cinnamon rolls (post photo on facebook ), little blankets (sausage in a dough fried in oil. Vetkoek. Mayonnaise muffins. Much of this I want to freeze for snacks etc….

Found something interesting on facebook. Put a note on bread for Husband… If you don’t stop binging on the bread your pants is not going to fall off anymore because you don’t have hips… there will be enough at the end of the lock down around your waist to keep your pants up. Original note on Facebook said:”You are not hungry, you are bored… go watch some more TV” stuck in the fridge. Very original.

My Dementia Mentors Zoom buddies decided we should have a cowboy theme for next week. Well I don’t have anything cowboy, except for my landlord’s few cows that is grazing outside as we live on a farm. I think I will make a note: “Cowboy theme” and stick it on my forehead. Should do the trick.

We talked about snakes tonight… grrr yuk. Don’t like… nope ….no. I promised to blog a snake story, but will leave that for tomorrow. Someone also made a joke to use baby nappies as face masks, I thought I could just pull mine over my head… then they told me it was only a joke. I can be such an asshole.

My meds is kicking in and I have to go. I did play my Dawn of Titans and touched my jewelry and blogged. Personal mission accomplished. I must put in diary that someone asked me to make a video of my jewelry and post on facebook. Maybe I should and I just need to get a few things sorted. Don’t know how long that’s gonna take lol. Lora has a small stand for her cellphone…. O well at least one idea already.

Toodles! Lots of love and kindness.

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)

Day 5 of lock down

I wonder how you get the picture to the side, or maybe it should be in the middle… anyways, here I start my blog with one of my random thoughts. Oh well, that’s okay too. I don’t know if I said it somewhere, but I decided that in this time I will blog again, play Dawn of Titans and do my jewelry. Well, I’m successful thus far.

Sad thing just happened. I’m looking after baby chicks that is been hatched in an incubator. One little Orpington just died. He had lovely white lines around his eyes. His dad… a formidable huge Orpington with a real bad temper died a month or so ago. I’m so not taking this very well. A wonderful thing about this chicken thing is that a few times I had the little chicken born right in my hand. That is an awesome experience.

I enjoyed my first game on Dawn of Titans. There are a lot of new players I don’t know and way to little players. Wonder where my kids went off wondering…. (mind you grown-ups between 30 and 50 years old)

My jewelry education on Youtube is quite extensive. There is this woman Darlene, I just adore her and she is so practical and awesome creative and good ideas…. and so I can go on.

Had a very nice Zoom Dementia Mentors Zoom meeting today. We had such a laugh, Peter had to chase a bumblebee out of his glasshouse where he was chatting from. Everyone is learning or doing zoom and whatever meetings now, while we have been doing it for like ever… Our Virtual Cafe’s is awesome. We are family, friends and meet everyday. So awesome. I just love the lot of them. Everyone has some form of dementia in different stages, although most of us are early onset. Some days we all have on hats, or tie dye shirts (don’t know how to spell that, not that it matter anymore for me, as long as I can communicate.

My husband is driving me around the bend. He is comfort eating and smoking his pipe, but I put my mask on when he smokes. I will most probably not go out anyway.

Have to go. Toodles

Saro (Elmarie)

Day 4 of lock down.

Hi guys and girls, it is out fourth day of COVID-19 lock down. Many lovely positive things happened today, so no complaints over here.

My dearest friend Marian had her 49th birthday today and I made her a lovely little basket and lid from newspaper. She was really happy with it. She also brought us some frozen chickens and offer to to buy some necessities, so that my husband and I don’t have to be exposed. We decided to wait another 2 days, as the government old age payments were today and there would have been a lot of people. Also, she can get the stuff we need close to us, that is not that much visited by people. That’s really awesome of her.

One thing though…. my husband and his pipe smoking or smoking in general is killing me. I stopped 6 months ago. The pipe smoke gives me a headache and makes me nauseous. Tomorrow, I’m wearing a bandana or scarf around my face. I love him very much, but this is really getting too much.

Another good thing that happened was that I decided to make a Whatsapp group to keep in touch with my 3 brothers. They all thought it to be a good idea and it makes me happy, although I stated it is to chat and not to be spammed with stupid pictures …. those that some people spam your phone with mornings and nights.

I must admit that this pandemic is raising my anxiety to new levels. I do however try to just avoid negative things and search out positive things. Share the amount of people that recovered after having the virus, instead of how many are now infected or died. We have to live in confined spaces for quite some time, so we must take measures to avoid depression. Also, get closer to God, he never leaves us. He is not the one that send this, He is the one that heals. God is in the healing business not killing. His love for us is infinite and far more than we can ever imagine.

Have to go now. Hope and pray that all of you stay safe and are well.

lots of love and kindness

Saro (Elmarie)

Day 3 of total lock down.

I’m almost scared to use the word Corona virus or whatever it is called, as it is everywhere and now in my post as well. In South Africa we are in a total lock down for 21 days.

What is strange, is that I never want to go anywhere or even get an opportunity to go anywhere, except to work (doing limited tutoring with my daughters). Now that I can’t go anywhere, guess what…….? It feels like death itself. That emotional thing that happens when you are told not to do something and all of a sudden you really want to do it…. a bit, okay more than a bit like with children. Tell them not too and guess what, five minutes in and the deed is done.

With the dementia it is not that easy, as I am getting to forget a lot lately. Got an entry in my diary “contribute to tommy otter” what the hell that is, I don’t know and am too scared to ask. I have decided to get some sort of schedule going.

1. Blog, obviously

2. Play my online game Dawn of Titans, which I quit a while ago.

3. Make my jewelry.

4. Look after my zoo of dog, cats, bird, chickens, bunny and husband. My daughters are not here, but are stuck somewhere else. Can you imagine my one bunny “Ashes”, other one is Sparkle, tried with his little paw to remove the stone I was busy putting on his latest escape tunnel. The audacity (big word… yaaayaaa), so I fetched another one and put it on that one. When I went to feed them, I noticed that the man was quite busy, with you know what.

I see that I’m getting sidetracked again as usual. Thing is, I have decided not to keep on reading all these reports, only check out positive text messages. Keep the air freshener close to me, to use when my husband is getting overly busy on his pipe. It really sounds strange… just sucking on it, like it is a ventilator or something like that. So we should keep out of each other’s hair. Maybe the two of us have a few things to work on…. we will see.

The dementia thing is getting a bit worse. I still could figure out something went wrong, but now it happens less and less. Just blissfully have no idea if something went wrong.

Something on coping… must put this in my diary… Put up stickers. Geyser switch… up is on and down is off. Same with stove and whatever might be dangerous. For the life of me I could not figure out 2 days ago which way the geyser is on or off.

Ok… Zoo… check, Blog… check, game… check, jewelry… check, husband… still alive and kicking… check.

Bye, and stay safe.

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)

Standing still 2

Some time ago I wrote about, just standing still by someone to comfort. This is counting for my 5 things that made me happy.

I think I mentioned a million and one times that my friends sort of disappeared. They are busy, specially over season as this is a farming community. Some of it is I suppose my fault as well, I did not go to visit them and on the other hand, I cannot drive anymore and to get my family to drive me around to visit is another matter all together, but I suppose they are busy too and my husband is complaining about using too much petrol, unless he go and visit his friend, which is an uncle, which I suppose does not count and now I suppose I should shut up about that.

This morning me and hubby went to church for a change and was early as usual. The next moment a friend of mine, her name is also Elmarie, came to me. I was still standing in the passage, She asked me how I was and I started crying of cause as you might have guessed. She told me she missed me and loves me and then gave me a hug. She is much younger than me, but she serves the Lord with all her heart. I asked how her kids was, they were in my Aftercare center and then told her about the dementia. She gave me another hug and told me that all I ever have to remember is how much God loves me. Sometimes we forget.

When I got home I found a text message on my phone with the next bible passage:

Psalm 63 The Passion Translation (TPT)

Thirsting for God

63 For the Pure and Shining One
King David’s song when he was exiled in the Judean wilderness
O God of my life, I’m lovesick for you in this weary wilderness.
I thirst with the deepest longings to love you more,
with cravings in my heart that can’t be described.
Such yearning grips my soul for you, my God!
I’m energized every time I enter
your heavenly sanctuary to seek more of your power
and drink in more of your glory.
For your tender mercies mean more to me than life itself.
How I love and praise you, God!
Daily I will worship you passionately and with all my heart.
My arms will wave to you like banners of praise.
I overflow with praise when I come before you,
for the anointing of your presence satisfies me like nothing else.
You are such a rich banquet of pleasure to my soul.
6–7 I lie awake each night thinking of you
and reflecting on how you help me like a father.
I sing through the night under your splendor-shadow,
offering up to you my songs of delight and joy!
With passion I pursue and cling to you.
Because I feel your grip on my life,
I keep my soul close to your heart.
Those who plot to destroy me shall descend into the darkness of hell.
10 They will be consumed by their own evil
and become nothing more than dust under our feet.[a]
11 These liars will be silenced forever!
But with the anointing of a king I will dance and rejoice
along with all his lovers who trust in him.

And this song: https://youtu.be/IUhJNA0XGqc from Chris Tomlin.

Only Jesus knows our hearts and can do things like this. Send and angel to comfort you. I so love God and you should too. Another song: https://youtu.be/SAhlIHCZw5A In Moments like these a love song to the Lord of Lords.

Much love and kindness

Saro (Elmarie)