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.

The truth about seeing.

This is me, Elmarie (Saro) 55 years old.
This is also me. Age 56
Also me age 57

Why do I post pictures of myself… DO I LOOK LIKE SOMEONE THAT HAS DEMENTIA?

NO!!!! In my opinion  I don’t look like there is anything wrong with me, a bit less makeup, but still it’s not written on my face. I walk with difficulty, but my left knee needs replacement, and what they don’t realise, is that my balance is getting worse by the day.

The way it looks to me, is that my family and whomever  else is looking at me sitting in my chair either don’t,  know, don’t  realize or whatever. I try my best… ever heard of “pretend”, “faking” to make it look like NOTHING is wrong.

When I must go and do something,  say for example cook. I can’t move. In the first place what do I make? Then with what do I start first? Then I forget I was supposed to go and prepare food. Then my husband will start nagging again he is hungry. Cycle starts again. Finaly I get up and try my very best, but the tug-of-war between remember, forget and the most horrifying anxiety paralyse me. I can’t work out a plan, reason as to what to do. I’m forever SO INCREDIBLY SCARED I MAKE MISTAKES. I’m most of the time scared. People may ask, why scared… there are nothing to be scared of… YOU ARE NOT IN MY SHOES OR HAVE MY HEAD. Let’s give it the proper name. Disability…. there it is disability!

I don’t know if this post makes sense, but that’s what it is. Most probably if my family is going to read it I will be asked if I want to go to the old age home, to the psychiatrist or doctor… that scares the shit out of me.

My family keep on being irritated and disappointed… that is how I see it and experience it, when I keep on asking the same questions, forgetting the same things. If I’m depressed and say I wish I was dead, they see it as me throwing them the suicide card or whatever. What they don’t  know or realize is that I really want too. I am trying to be responsible and remember I can’t just up and out.

I FEEL SO LONELY, DESPERATE NOT KNOWING WAT TO DO.

Saro (Elmarie)

5 Positive things.

1. I found this comfort in the bible.

For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. For we fix our attention, not on things that are seen, but on things that are unseen. What can be seen lasts only for a time, but what cannot be seen lasts for ever.
2 Corinthians 4:16‭-‬18 GNB
https://bible.com/bible/296/2co.4.16-18.GNB

2. The smell of the food my kids are preparing is awesome.

3. I really enjoyed the sun on me and the beauty around me while hanging the washing outside. We live on a farm.

4. First day of holiday, I don’t have to rush.

5. I’m really grateful that I’m healthy in spite of the dementia.

Now your turn😁🌹

Much love and kindness.

Saro (Elmarie)

4.

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)

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

About words and the effects

Hello there 🙂

I came across this awesome blog full of such wisdom. Yesterday I had to battle through so many words, good ones, harmful ones etc. I actually feel emotionally and physically drained today. I tried to share this blog, but as I have to find my way everyday anew around wordpress…. Not WordPress’s fault, I will post a link. That part I figured out.

http://pointlessoverthinking.com/2019/06/21/life-is-just-a-moment/

There you go, please go read it. It just might make a big difference.

Toodles for now.

Love and kindness

Saro (Elmarie)

Take a breath.

Photo from Mountcarmelplaceofprayer.com

Hi there. I attended two Dementia Mentors Zoom chats now, which was so awesome and comforting. One thing my friend Tru http://truthfulkindness.com/ said, was when things gets bad, just take a breath. Now at the time I just simply could not figure out why she said I should take a breath… I didn’t stop breathing, in fact I’m still breathing. I didn’t say anything, because it was one of those things I couldn’t figure out again.

Yesterday was such a lovely day, but today kind of sucks. I’m crying, my head feels sort of empty or depressed, I don’t know. I just cannot tell why I don’t feel well. I just want to sit and do nothing. I did however washed the pots and pans… not finished yet, as I decided to wash one pot at a time. I tried to pour the water out of the one pot and somehow I could not figure out which way. Sounds stupid I know and guess what… I tipped it out the wrong way and all over me and the fricken floor. I notice that I’m very impulsive, maybe that was where the tipping went wrong.

See, I think this is where the “taking a breath” comes in. Maybe I should be less harsh on my self and accept that things are going to go wrong. I just read this blog http://elaineeshbaugh.com/2019/06/17/hey-dementia-community-stop-telling-me-your-challenges-arent-a-big-deal/ Bless her lovely heart.

Take a breath, calm down and start again, I think it means. If I cannot accept myself with this disease, how am I going to make it to tomorrow? One step at a time, one day at a time or you eat an elephant one bite at a time? So many sayings for going forward.

Today, I just don’t see it and yes all these things are a big thing, not just something that can be swept under the rug. I always wondered how I’m going to die one day, but it certainly wasn’t like this. I saw some dementia patients that were already in a vegetative state. It was so upsetting. But on the other hand, I can still live another 20 years without reaching that state. These are things I sometimes or at least today think about. I have a speech impairment, but somehow I can still write. It is not poems or dissertations or essays, but here it is time for being brutally honest, whether we want to face it or not and what if I don’t write the best blog or not does not matter to me. This is a journey and things to remember, like baking muffins. This is not over thinking or thinking of dementia all the time. Somehow I have to come to terms with it.

The last few days I keep on seeing in my mind how I could easily make an entrance into a room with confidence, sit down and get down to business. Today I just cannot find it in me to get up and bake some more muffins, because Nita decided to finish hers in one day, which is a big compliment by the way.

Ok, it is time to go and wash the next pot…. one at a time, hope the floor is dry.

Much love and kindness

Saro