To change or to adapt…

Royalty free image from Dreamstime

I have a new old hand me down grateful laptop. Yay, now maybe I can write agein.

Before I carry on with my pitty party or whatever, here is something very very sad. My eldest and I suspect my youngest as well, feel they have to change who they are or how they express themselves. That they cannot be anymore who they are, because it causes my husband, that is pushing for 70 and I suspect also have some sort or dementia, to be agressive and makes me unhappy or crying. They don’t understand that they don’t have to change who they are, but must adapt to the current situation as it happens. I have a brain disease and my husband is not the young 21 anymore, so you with the good still functioning brain will have to adapt. Hopefully while gaining all the information that you need to handle the situation, so not to become frustrated and unhappy. Use Google. I think only God knows more than Google.

My husband (he is a good and kind man and I love him very much) deffinately does not think rational or logical anymore and with the dementia, I have my own problems with communication. The eldest says she talks “vehemently”, now that’s a strong word. The other day she said she is enthusiastic and gets excited, so her voice raises and vocabulary is in line with that, which is fine and better than the word vehemently. I also get excited etc., but my perception of face expression, tone of voice etc.,simply does not compute correctly to my brain sometimes anymore. Also confusion and lack of memory…. She says that she feels it is harming us. It is NOT true. My husband does not listen to anyone or shutup and listen until the other person finished their story. He reacts with aggression to anything from the start, even before he listened what anyone said.

I realize…. maybe am the only one that realizes it, is that he cannot hear when more than one person talks at the same time. See, the man is deaf and that the fricken hearing aid is causing a lot of problems. Somehow the hearing aid is not giving through our voices correctly. Bummer…. would like to step on it, but being stone cold deaf will be the end of him. The only thing keeping him alive or whatever, is his music. I can’t even imagine that, it will be so unthinkably terrible.

Now the youngest has this problem that everyone, specifically my husband is always telling her to shut-up and that she never has a say in anything. Misconception…. she starts talking by interrupting and then husband can’t hear, he tell her to wait or shut up, then she reacts aggressive and speaks to him in a manner I NEVER would have talked to my parents, even my abusive mother.

My husband does not love himself… his body and whatever, not going to ask him and get into that, he have to sort that out, I can’t do that for him. (my daughters also does not love them selves or eccept themselves for the absolutely amazing and good people they are) So he is negative, listens to people that promotes and preaches poison all day on the internet and sad to say have this humour that a woman always don’t like the husband or that the husband is always in trouble with the wife. That is a preconcieved lie from the devil. He just never accepts that we or anyone can have a different oppinion than he as well.

Many problems starts off with inaccurate preconceived ideas and believes that are piling up in our unconsious, through a few bad experiences and mostly through the mass media that we are bombarded with in this day and age. There are so many gullible people that just swallow what they are being fed… then they send all those scams and incorrect information on to other gullable, stupid, uninformed and uneducated people. A few examples…. about races, covid 19, vaccination, or what ever the trend of the day is.

Oh well, let me stop here, can’t remember the other hundred things I wanted to say. Must admit, I edited this and am amazed at the words that I used. There is nothing like a good night’s sleep and enought hydration for dementia.. The night before I did not sleep at all and were a zombie the whole day long. Anyways, have a lovely day..

Lots of love and kindness.

Elmarie (Saro)

Life with art.

Watercolor with ink and color pencils by me.

Wetting paper, the whole page or just one place at a time. Picking up as much pigment on your wet brush and touch the wet page.

The most beautiful color bleeds on the spot into tiny feathery fingers. Then another color. All bright and beautiful. New images comes to mind.

A mind sometimes only seeing darkness. A brain deteriorating gradually. But the colors and images of the watercolor paint explodes into new ideas, new energy and happiness.

You still look young, a beautiful painting where no one can see the deterioration and sometimes you feel you have to explain or prove that which you loose sometimes day by day or gradually is unfortunately real. Nobody wants it, but it creeps up to you.

Then comes the tears, the waters over your page, sometimes all in the open… the whole page at once. Sometimes just spots around the corner where no one see.

But then you pick up that brush, dip it in that water, fill it with beauty. Red, purple, yellow, greens. An entire rainbow to brighten up your day. God will never leave you nor forsake you. Beautiful flowers flow out of your brush. Giving yourself and other new hope. We know the end, but we can live the in between in beautiful colors. Find out what your paintbrush is. For those that lost their paintbrushes already, help them. Take their hand and move the beautiful paint around. Ignite each others sparks to momentarily reach the surface.

Take a pen or brush or camera and discover the beautiful and whimsical beauty that will always stay in us. Let us share our beauties with each other and even leave each other encouraging notes.

Art brings your brain and imagination to life. Art can be anything, even gardening. The sky is the limit and sometimes these beauties leaves something for our loved ones to remember us by. Not with sadness, but with the joy that the colors of the rainbow brings.

With love and kindness.

Elmarie (Saro)

From life to life.

RIP Paulan

This is in memoriam of my best friend and mentor Paulan Gordon.

Paulan lived a whole ocean away from me and in person I never met her, but when we zoomed, her presence was right next to me.

I experienced Paulan as a woman of substance and authority and add love and compassion in the mix. Her wisdom and care lifted me out of a lot of ditches, of which there was quite a lot with my bipolar.

She never minded listening to me going on how I want to die sometimes. Never tried to make it off as nothing. She just loved me anyway. When I were depressed and ignored everyone, she chased me down and told me that she will never forget me, even if I was also on her calendar reminders.

We had so many laughs and interesting chats. Talked about Egyptians, Jerusalem and Lithuania and lots of other places. Going on imaginary trips… she really was so well traveled.

She always reminded me how highly functional I still am even if I felt useless. She could so easily show me the things that I should be grateful for, even though I felt that I’m just staring into a big black abyss.

It wasn’t just a mentor relationship. We divided our time together. One half for me and the other half for her. We became really friends. I miss her, there is a huge absence in my live without her, but I am happy for her that she is now in a better place.

My friend Paulan just exchanged this temporary life with eternal life, where dementia or COPD don’t exist.

A life for life. Rest in peace and softly my darling friend.

Yours forever

Elmarie Janse van Rensburg (South Africa)

About suicide.

I have been thinking about suicide a lot. Some people reckon people that say they want to commit suicide or try, are just attention seekers or even worse cowards. That is not true. Anyone of that opinion has never been in that person’s shoes, circumstances or had a chemical something going wrong in the brain. Have never heard of bipolar.

When you are depressed, you just simply see no future or way out of some situation. That is the one type of depression and it very often end in a successful suicide.

Then the bipolar or chemical problem in your brain… it is like a darkness pushing over your brain. You cannot think of anything else but to be dead. You make plans. Do research on how to commit a successful suicide. You become obsessed with it.

You cannot talk about it, because suicide or your depressed chatter, just isn’t popular and no one wants to listen or gets uneasy  during any conversation about it. 

THING IS THIS. IF YOU COMMIT SUICIDE,  YOU LEAVE YOUR FRIENDS AND FAMILY WITH LIFELONG GRIEVE, FEELING GUILTY, NOT THAT IT WILL BE THEIR FAULT. YOU MIGHT GET YOUR WISH AND DIE, BUT WHAT ABOUT THE SORROW OF THOSE THAT LOVE YOU AND CARE FOR YOU, YOU LEAVE BEHIND? GO AND SEE A DOCTOR,  TAKE YOUR MEDICATION. GET HELP IF YOU NEED TO CHANGE YOUR CIRCUMSTANCES.  IF YOU TAKE MEDICATION, PLEASE DON’T STOP TAKING IT. 

As I said, this is a difficult thing to talk about. I do apologize to those I might have traumatized or made uneasy about me talking about suicide.

Here is help, please make use of it. https://www.therapyroute.com/article/suicide-hotlines-and-crisis-lines-in-south-africa

I just had a heart to heart chat with you and me. Please you matter and are precious.

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.

Adjusting with demantia.

Hi there. Long time no see 😁🌹 I have been busy as the above shows. I’m learning from Mark Kistler’s video’s to properly draw. It makes me happy. I still do the jewelry as well.

That is from the dearest ever Heather Boyd Wire. I so love her stuff.

Something I’m really working on, is to shut up when someone becomes fedup with my repetitive questions. I was doing something the other day and I asked my eldest, Lora 30 times in a row what the date was. She actually handled it well. The tyre only bursted a bit later that night when she were tired. I’m getting a new watch,😁.

I think slowly but surely we are finally adapting to mum’s decreasing brain abilities.

Something weird is happening. I could never do simple sums … Never ever could I literally do 3 + 2= 5. I had to count on my fingers.. now I see the sum in my head and whoops there is your answer, but I cannot count. I cannot do metacognitive or where you just start somewhere and count or backwards. I can’t see it, or figure it out. When I work on a chart with figures, I can still see patterns. That’s the weirdest thing.

My jewelry and drawing and working still with a few kids grade 1 & 2 (about 4) doing their homework is keep my brain active. I notice when a petal fell off my rose, but that’s ok. I’m happy.

I had my birthday on the 10th of march and all I wanted was a margarine tub full of candy.

Guess what, I got it. I was so happy. Sometimes it feels like I’m becoming a child again, but a happy one. My bipolar is behaving for a change. That’s a miracle in itself.

I fell about 2 days ago, something I do a lot lately. Geez my knees and hip and everything is so painful, specially at night. Somehow my left foot does not lift so  well anymore. Don’t know why… My guess tiny stroke again sometime or another. I need new and more appropriate shoes, I think. Shoes also need to have something else than laces, to make it easier to put on. Bending over can make you dizzy and also make you fall. So sensible shoes it is over fashion. If you get sensible and fashionable… Jackpot. I think pants over dresses might work better, a dress over your head can be so undignified. 🤣🤣🤣🤣

One thing that also keeps me going apart from the Lord Jesus, is my Dementia Mentors friends. I love them all so much and I know they love me too. I can’t zoom that much anymore, but when I jump in and quickly have a chat it is so wonderful.

I miss my deceased brother so very much. It feels like something has been torn off of me.

Really got to say goodbye now. God bless and talk again.

Saro (Elmarie)

Another perspective on my life with dementia and 2020.

2020 Wasn’t just bad, come to think of it. This year was the healthiest I’ve been in years. One minor cold in January, blood pressure meds had to be increased and a tummy bug.

Well for one thing we saw no one. Worn masks, sanitized… no germs.

One good thing, I taught myself making wire jewelry and just started watercolor painting… So learn new skills. All my life I wanted to be creative, but never had the time… now I can do it, and I think I’m quite successful

Makes me happy. I now just must sell it.

Anyway, I hope this was a bit more positive than my latest posts.

Toodles

Saro (Elmarie)

Do people care enough?

I don’t know whether I should start venting or explaining a few things about dementia. Well choice is easy. I stopped smoking this month exactly 1 year ago. The point of stopping was to hopefully have a longer meaningful and capable life. Well, it did me no good. My husband insists to continue smoking even though he had a good chance to stop in the lockdown, because there was supposed to be a ban on the cigarettes.

Nope, he just sticked to “I smoked from even before I met you. It is my house, I will do as I wish.” Isn’t it my house as well… where am I to go? I am dependent on him. He can smoke outside, but refuse. He does not care if I die. Vascular dementia is because the veins shrink and my brain does not get enough oxygen and the cells die. If your brain die… you die… it is the command centre of your body, even your heart cannot beat without your brain give it instructions. Smoking and second hand smoking is absolutely a very effective way to speed up the dementia process. So question here is… does he still love me? Does he still love my kids, that is also still dependent on him, although they contribute to the house etc.

With the lockdown, we lost the income of the Aftercare centre and every other way that we managed to make money, so my daughters lost their Medical Aids. When someone smoke, they actually get sick. Hey fewer, sinus and can’t breath. So I can go on.

So please, don’t smoke in the room or presence of your loved one.

Got to say bye

Saro (Elmarie)

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