The morning after.

I woke up this morning feeling as if I have a hangover, if I remember correctly. Last drink I had was in 1994. My liver just could not cope with all the medication and alcohol at the same time.

I can’t think… my head feels like a sement brick. Not even marbles rolling around. I can’t look anyone in the eyes, being ashamed because I cried last night and am crying again now.

I still battle to get over being told that I’m so much loved that she wipes my SHIT and PIS. That sounds like swear words.  What about saying helping when you have to change your diaper. Is there anyone that understands how demeaning it is to wear diapers at 58?

I try to make it easy for myself to tell a friend or 2 about the diapers…. and now the whole world knows, so that it just not become one big black shameful secret.

What should I do if I feel insulted or wronged because I understood incorrectly? What am I to do when I say or do something wrong because I didn’t understood or thought wrongly? What if I say wrong words because I don’t have other and then I forgot I said so.

I can’t reason anymore, or plan and lots of things. I write with great difficulty because of hand tremors, but I can draw and paint, how that works, I have no idea. I suppose it must be like people that had a stroke and can’t talk anymore, but they can sing beautifully. Maybe different parts of the brain.

I just simply do not want to live anymore period.

I hate dementia!

It is demeaning, shameful, devastating and just bloody awful.

I don’t understand jokes or so many things said to me. I’m still on one topic then they are on another.

I can’t stop crying. What the hell am I to do? I feel like a bloody idiot. Then the other people eventually does not know how to treat you or how to speak to you. This is the proverbial WTF situation. How do you handle these things?

I don’t know. If I get depressed… it is never a good topic. You can see something is wrong, but you simply are not being told what is wrong. I’m still a mother and wife and a sister.

It’s my bloody brain that is dying off, everyone else has a good brain, so how can they not find a way to handle and talk to me so that it makes my life also better. I understand their lives are also disrupted and f up, but I did not ask or bloody deserve it.

Everyone has problems. They can go see a doctor, get medication and be fixed, but obviously sometimes people are better than other and refuse any help from people they deem not good enough.

Life is not fair. It never was and never will be. I love my family beyond anything else and always will. May God give that this dementia will end fast and spare me all the other things yet to come.

Jesus the light in our darkness.

Three years ago absolute darkness enveloped me. It felt like I could not see in this darkness, could not see any further future. Curled up in my corner and just felt that I’m going and want to die. I felt so alone. I couldn’t speak to anyone, because up to 2 years ago I had no idea what is wrong with me. I withdrew from the community and all the things I used to partake in etc. I cried nonstop for 2 years. First for a year because I knew something was wrong and unable to put it into speech then I felt relieved after my diagnosis to find out what was wrong with me, two years ago and then I mourned what happened to me.

I felt so out of control. When I tried to read the bible or pray, all I could do was cry and cry and cry.

Then I found this:

You, Lord, keep my lamp burning;
    my God turns my darkness into light.
29 With your help I can advance against a troop[e];
    with my God I scale a wall.

30 As for God, his way is perfect:
    The Lord’s word is flawless;
    he shields all who take refuge in him.

Psalm 18: 28 – 30

I still cry, but it is a symptom of the vascular dementia and not all the time. Jesus is my Prince of Peace, the Love of my life, the Light in my darkness. I could get up, given some days is still dark and very difficult, but are much less now. God is alive

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)

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)

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.

Giving up or not.

Hi there 🙂

This week me and some other friends talked about medical aid for persons with dementia. Now there was one new friend. When they asked him if he is also applying for having medical aid, he said he is only 52 and that he will be dead in 10 years because of the disease he has. I was to afraid to ask him what it was, but it must have been some form of dementia, as the group is for people with dementia.

I was so sad. The others just did not say a thing. What was in each person’s heart? Fear, acceptance, sadness or even anger?

The above words I found on facebook from a lovely person I don’t know and never have met. It is so awesome. That is how I would like to do it. I already have God in my life. The rest is yet to see.

Something I notice, is that the moment something change around me. Does not matter what, I get confused and stars crying. I can not handle it anymore if someone is so called teasing me. It is as if my brain simply freeze up and the emotions of crying shows up. I try to handle, hide it… correct word missing now. I cannot think. Some days I feel normal… five seconds in, something happen lol. So I will just have to take it day by day.

Now got to go. Lots of love and kindness.

Saro (Elmarie)

Nothingness…

I am so fed up… and sorry I start like that, somewhere I have to vent. Last year when I saw the Neurologist, I told her my head is so empty. It is as if all or at least most of my thoughts disappeared.. “Isn’t it lovely” she said. I don’t know if I am allowed to use a bad word now and then, but WTF? Having an empty head is fine… really?

My dementia friends talk about getting their affairs in order…. I can’t even think of what affairs. You can say that I’m writing here at this moment, but I would have liked to write something, say about aliens or interesting books or just make up stories. I used to be good writing stories.

If my head is so empty, can I put some stuff back in and what stuff would I like to put in? Where did the stuff that was in my head go? And no I’m not talking about that physical stuff that is inside of my head. There are a few choice places with dead brain cells already and lots of others… actually my brain shrunk. Maybe that’s why. less brain cells to think with. BS there must be enough left to still think. Thing is that the cells that decided to depart prematurely is in very uncomfortable places, like my frontal and temporal lobes. I still remember enough about my neuro studies, to know that. I have Vascular dementia with early onset …. or whatever.

Mind you, I stopped smoking. Hope to get some more oxygen to my brain. That’s one thing to put into my brain. Worry about yesterday or tomorrow… no thank you, it’s not going into my brain/thoughts. That is not what anybody should have in their brains. It is stupid and counter productive to anybody’s life.

And there goes the nothingness. Have to say good bye for now. Hope next time is better.

Much love and kindness

Saro (Elmarie)

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)