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.

5 things that I liked today.

Sheesshhhh this thing updated again and I will have to figure stuff out again…. will have to go without the rose today, but here goes:

1. My friend of many years from my game Dawn of Titans visited my blog…. hi Matgear 😁 It really made me happy. I’ve been neglecting my game lately and he promised to spam comment my blog unless I up my game. I did go in and stole or cap a few lands from Hugsforfree alliance.

2. Putting up the extra chicken coop was much easier today.

3. Again my dog Boelie. The two of us was sitting quite peaceful, when he jumped up and ran to the back door and gave crying sounds. I jumped up immediately and saw it was the neighbour’s dog pressing his nose hungrily against the chicken coop. I opened the door for him and like Flash and Superman combined, he stormed out and took care of the villian. Then he came back and peed on the two bunny cages and where the chickens was…. whatch out you villian, this is my territory and family. Mommies guard dog. Huge Bullmastife.

4. I finally made that oven baked veggies. It was jummy.

5. My husband send me a funny video of a woman starting her husband up like a Lister engine to mop the floor. My husband always always says he is going to start me up like a Lister engine when I’m lethargic. It is our private joke… can’t believe when he found it on facebook.

I did it. 5 things positive….. go try it, it works.

Much love and kindness

Saro

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)

What a lovely day

Today was just a westome. First my husband Andries and my youngest Nita came to visit me. (They are all looking after people’s pets and houses when they go on holiday and that way they pay their university fees) So first thing… I forgot it was fathers day and the dear donut never mentioned it to me. O well I found out about it on another chat I’m on and send him a nice message.

My friend Marian (on the left) baked me this lovely awesome yummy carrot cake.

Then my “babysitter” Marian fetched me. I was in such a hype… all over the place, even folded her washing and grating the carrots for the carrot cake. When the time came for me to make the chicken livers with a zing thing, I got stressed out and asked her to do it. It was so yummy! In between she were fixing her chickens, she is a chicken farmer and have some awesome chickens. Lora (my eldest) also are partners with her.

Look at this awesome chickens.

Then she baked the most yummiest carrot cake ever. I almost did not want to leave, but bed and taking meds time caught up with us. Thanks for being my friend Marian, I know you read my blogs.

Much love and kindness to all.

Saro