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)

Day 5 of lock down

I wonder how you get the picture to the side, or maybe it should be in the middle… anyways, here I start my blog with one of my random thoughts. Oh well, that’s okay too. I don’t know if I said it somewhere, but I decided that in this time I will blog again, play Dawn of Titans and do my jewelry. Well, I’m successful thus far.

Sad thing just happened. I’m looking after baby chicks that is been hatched in an incubator. One little Orpington just died. He had lovely white lines around his eyes. His dad… a formidable huge Orpington with a real bad temper died a month or so ago. I’m so not taking this very well. A wonderful thing about this chicken thing is that a few times I had the little chicken born right in my hand. That is an awesome experience.

I enjoyed my first game on Dawn of Titans. There are a lot of new players I don’t know and way to little players. Wonder where my kids went off wondering…. (mind you grown-ups between 30 and 50 years old)

My jewelry education on Youtube is quite extensive. There is this woman Darlene, I just adore her and she is so practical and awesome creative and good ideas…. and so I can go on.

Had a very nice Zoom Dementia Mentors Zoom meeting today. We had such a laugh, Peter had to chase a bumblebee out of his glasshouse where he was chatting from. Everyone is learning or doing zoom and whatever meetings now, while we have been doing it for like ever… Our Virtual Cafe’s is awesome. We are family, friends and meet everyday. So awesome. I just love the lot of them. Everyone has some form of dementia in different stages, although most of us are early onset. Some days we all have on hats, or tie dye shirts (don’t know how to spell that, not that it matter anymore for me, as long as I can communicate.

My husband is driving me around the bend. He is comfort eating and smoking his pipe, but I put my mask on when he smokes. I will most probably not go out anyway.

Have to go. Toodles

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)