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)

5 Positive things.

This is difficult today…

1. I love how my dog looks at me. He has the softest loving eyes. He makes me feel safe.

2. Woodsie our not pure bred Sylky chicken laid an egg 2 days in a row. Yesterday we heard the 4 chickens making a terrible noise. Everyone stormed out, thinking th neighbours dog is playing peeping Tom again. Nope they all stood in a circle being happy about the egg that Woodsie laid in the middle of the chicken coop.

I found another one when I went to feed them just now. It is quite a picture to see how they all looked at the egg… It was still warm. It is one cock named Becky (he has a deformed beak and is a beautiful buff Orpington) then he has 3 wifes. Kleintjie and Daisy, black Pekins and then the famous Woodsie.

I wonder if they want some offspring, since Becky is regularly doing his duty. That in itself is something to behold. The hens disappear under him, when he is doing his thing and after a big noise you just see this tiny black hen running away from underneath him. Okay, I think I just did the unmentionable and discussed our chickens sex life online… Really?

3. I love my eldest daughter’s gold coloured hair. It is so beautiful and she herself is so beautiful inside and out.

4. We got awesome gifts from one of our aftercare kid’s mothers.

5. God is good, all the time. I love my friend Asanda Kwenena, she is saying this everytime I see her and she gives me hugs and tells me she loves me. Her beautiful kids Vuvu and Olo is also in my aftercare.

Okay, see it wasn’t that difficult. Sometimes we just need to take our hand off of our face, so that we don’t just see the missery in life.

But anyway, much love and kindness.

Saro (Elmarie)

Five things to be grateful for 1.

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)

Funny… where???

Hmmmm this being brutally honest can become a bit ouch. Talked to a friend yesterday, that said that she don’t want to talk about sad things all the time. She want to have fun and laugh. It was the first time we talked one on one, usually we are part of a group chat.

I think I lost my funny somewhere, or didn’t. I’m so intense busy with dementia and dying and such stuff, that I forgot funny. I forgot to live and enjoy stuff. It is as if my mouth is saying one thing, but my heart and head are on another chapter. How to get out? How do I find my funny again. I used to be the funniest person ever and could find humor in everything.

Or what if I am having fun here and there and forgot about it? Twice now someone told me that I said something and I have absolutely no recollection of it. It is just not there.

How do I stop being scared and accept or get used to the inevitable. My grandma had vascular dementia. But I was not much there to see or experience it. My aunt, bless her beautiful soul, took care of her.

Sometimes it feels as if it is I, me and myself. I have never been a selfish person or an I, me and myself person. What stages does a person goes through when they get their diagnosis. No matter what illness. “Sorry dear, go get your stuff in order. You are going to forget your family and everyone and then you are going to die. Yes sorry dear, but Vascular dementia is terminal”

Just went to the bathroom and had an epiphany…. sometimes I get the best ideas there. Sorry if it is too much information. My head really are screwed. With the bipolar, I desperately want to take my own life and die and with the Vascular dementia I am going to die and don’t want to die. Geezzzzz how does that sound… you should see my face now… wanted to write: as if I smelled a fart…. but, oh well there goes.

This blog writing thing does something for a person. It actually helps me think and see things for how it is or not. I really hope that this musings of me help some caregiver to understand or another person with some sort of dementia to understand that they are not alone.

Got to go to bed now. Meds are almost kicking in.

Much love and kindness

Saro (Elmarie)

Missing time.

I decided to blog on my phone as well, as the things I want to say dissappear.

One thing lately, is that time dissappear. I don’t know where it goes. Also someone will tell me something or my family is talking, it is as if the first part of the sentence dissappear. I continually have to ask to start from the beginning again.

The other thing is, it feels sometimes if there is someone else in me… No I don’t have that multiple personality thingy. Sometimes it feels as if I expect too much from my family to handle this vascular dementia. It feels as if I just want to curl up inside of me and die, so that none of us have to go through a prolonged suffering on both sides. (no I’m not suicidal)

Thing is, it is not that we expect everyone to be at our back and call. It is the disease that causes an inability and even not knowing about stuff.

We will always love our families and caregivers, we will always be grateful. Sometimes it might not be evident, but it is there on the inside of us. We lose our abilities, not ourselves.

My family I know will always love me and take care of me and whatever I can do for them, I will. I have read posts of caregivers that said how they hate those they take care of and wish they die… That is horrible, but I believe those caregivers were rotten even before. It is fine to vent and my eldest daughter also blog to vent, it is heart breaking, but I’m glad to be able to know how she feels and she is never nasty.

If a way can be found how caregiver and LO can work together all will be well I believe. There are cases I read about where the LO becomes a danger, but they can be taken care of… Don’t know about that stuff. There are many videos to be watched, for instance from Teepa Snow and Jennifer Bute and Dementia Mentors etc.

Got to go, much love and kindness.

Saro (Elmarie)

Vascular dementia and communication challenges.

It is my intention with this blog to be brutally honest. It concerns my feelings, happenings etc. Some of my perceptions is not necessarily the truth, but it is how it feels to me. Fear of the unknown is absolutely devastating.

I had a very traumatic experience the other day, had to go for a colonoscopy. In the first place they had to puncture me 8 times to get a vein. Not the doctor’s fault I think, but what was terrible, was that I was most of the time not sedated. It was painful and just terrible. My confusion etc. increased after that, as is my memory and my sense of date, day, time and year is gone. I keep on getting it wrong and when I try to figure it out, it is as if there is just this big black hole.

My brother and his beautiful wife, whom I will meet really for the first time, the other time was with my mother’s funeral. I am so happy they are coming for a visit, but on the other side, it freaks met out. In the past I could say:”Ok, this and that and ten other things is what needs to be done, etc.” Now I cannot think of one thing to make for dinner, where are they going to sleep… It is just one big irrational fear inside of me. I feel out of control. I don’t have control over anything anymore… It scares me… (Note to self… (geez girl, you been such a control freak?)

Sometimes it feels so lonely, even though I have my family with me. They love me to kingdom and back. I find it increasingly difficult to communicate. To have a conversation and also I think people don’t want to hear about dementia all the time. I can talk about God… recite the bible. Talk about history, European, Egyptian or Russian or Vikings, lots of things, but then not many people go past recipes, gossip, their kids and sport. So by the way, I’m so happy the Springbucks won the rugby world cup. I never watch sport, but that I watched and I remembered the two other times we won. It is as if there is this barrier or nothingness when I try to tell or communicate something to someone else. The other thing is the words. Everyday sayings, hello how are you, fine thank you, hows the kids… no problem, but try to use or remember bigger words or have a conversation…. That kite just don’t fly anymore. Then when people see you… Oh wonderful, you look so good. O yeah I’m fine thanks dear… who the hell is this female……????

I am amazed that I can still write like this… hope it is not too bad. I forget to write my blog. I forgot to play my online game Dawn of Titans for a week… goodness, I’m suppose to be addicted to it. I will continue to write and I hope it will be for years.

Anyways, got to go.

Much love and kindness.

Saro (Elmarie)

Getting stuff in order

Warning: Contents might be upsetting.

Hi there

Haven’t written in a while (getting to be a boring intro..), but I find my concentration to be shorter than that of a hamster and I get so easily distracted, it’s not even funny.

Before I get distracted again. This is still about getting stuff in order, because at some stage I will not be of sound mind anymore or whatever happens with vascular dementia. Fact is I’m going to die……. BUT ON ALL THE OTHER DAYS I’M GONNA LIVE. (Snoopy and his chum Charlie came up with that I think, but I’m going for that “all the other days” ) watch how I get distracted…. I want to do fun things, already tried one thing. My husband bought us a new mattress and I wanted to jump on it, he refused me immediately… just sitting on it and hopping, I tried to make it a bit less upsetting for him, being strict with his woman and such things. He still refused. (I waited till he left the bedroom, mattresses don’t talk… lol)

Okay, here goes. First of all I could not decide who to give power of attorney, not wanting to step on anyone’s toes of feelings, then Lora my eldest stepped up and informed me that she will take the job. Don’t know if they held a meeting or something, but made it easier for me. Then she got me in the car and got me to make an appointment with our dear local attorney Gerhard Mattheus. The living will went down a bit more difficult. I got an example from his office and it scared the living daylights out of me. Remember now here, that I don’t want to take my own life. The bipolar is just a nonsense that is being controlled by medication and family.

The living will is for if by some way or another me and my family can be spared me to be in a vegetative state as I see it. No resuscitation or machines and such, is my wish. I also thought it to be cruel to doctors, but it is my life and my decision. A decision not made lightly. My family’s first reaction to the living will idea was that I want them to kill me. By no means, it is only for when I’m going to die from something else or another, I don’t want to be resuscitated or kept alive by all means. The end of dementia is way more upsetting and scary for me than anything else. I know this must be upsetting, but life is not fair and facts are facts. Well both documents are now in place and I have peace now.

Just one more thing to be done… Give forms in booking places for me and hubby for one day in the far far future at our local Old Age Home. We know everyone there and will be happy and be cared for. I put all our documents in a file, just need to update the funeral policy details and all is finished and we can get on with our lives. Mind you trying to fix the policy over the phone was quite a nonsense. The female were incredibly rude and my husband is deaf and have no idea what email addresses are and all such foreign stuff from Marsh. I’m 56 and he is 65, I think that should explain a few things.

Well, I think I’m going to say bye for now. So lots of love and kindness

Saro (Elmarie)

Communication and dementia

Warning: Content might be upsetting. I have started writing this when I was very depressed, but decided to post it anyway. I feel much better now. I also discovered that the pharmacy accidentally dispensed one tablet 200mg instead of 50mg as said on the box which is the correct dosage and I got 10 days behind on my hormone sticker plus my current emotional state. I hold no one accountable but myself. But I post this, if it can help someone. Always ensure that someone check your medication, even if you feel you are still able to take it on your own. Ok and here goes…..

Hi there. I think I mentioned somewhere that my friends got their affairs in order, while everything is still sort of ok. Well I thought I didn’t know how or what, but it finally came to me what I want to get in place.

Now talking about this in my house, did and still is not going down well. One thing I know for a fact is that my family will take care of me for ever, because they love me so much and me them.

Now, it isn’t just me that goes through stages and emotions about this dementia thing, they too mourn and at the moment are really angry and of cause scared. I really want to encourage them to get it out.

Another thing, I want to get through my shit as well.

Was on a zoom webinar last night with Teepa Snow… wow, she is awesome. She said to me something that makes so much sense. I want to talk about my death and stuff and all it does is freak my family out. She said she will see if she can organize something for me and my family…. God bless the internet. It is not that I just want to do these things, I have always organized things. I’m trying to do the mom thing, putting affairs in order, so that they will not have trouble along the road.

I know that it is bad for my family as well and that they suffer too and the same for me as well. I’m so depressed don’t know what do. The bipolar most probably plays his role as well.

I am just at the moment really at a very bad place. I’m crying my eyes out. All I want to do is die and get it over and done with. There are actually a few things I can do to accomplish this. Being depressed and making plans is never a good thing, believe me.

My family are so supportive and then there is dear Creeky, my very special friend from Corpus Christy, Texas, USA. and my other friends for Dementia Mentors. Always having my back, praying, sending messages and just loving me as I do love them.

I have to go now sorry, but will be back.

Much love and kindness

Saro (Elmarie)

PS: Just a reminder, I don’t edit my articles, as I cannot really see my mistakes and I want my blogging from the heart and authentic.

Thinking and troubles…

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

His name is John.

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)