Tag: Dementia and COVID-19

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)

Living with dementia in lockdown for me.

I remember all started with a panic. See if we all have enough food and money. My youngest ordered lots and lots of masks and sanitizer, which is very good. For me, anxiety set in. When I am anxious, it feels like my head becomes a stone. It cannot think, reason. My words became less and less.

I dwindled down to being unable to count or any figures, I cannot read or follow a recipe anymore. I did not blog, because think is difficult, even find words. As time went on, tension become more and the moment there is conflict my brain shut down. I can literally not move or communicate. Then I cannot talk for few days. Miss every third or forth word. Difficult to hold conversation, because no social interaction. I do however have my Dementia Mentors friends with whom I try to zoom every day.

My concentration is down, I will wonder around wanting to do something, forget then find something else and then forget that something else as well, went back to my chair. When my daughters or husband go to work or somewhere, I become anxious, because I cannot remember where they went or when they come back. Then I want to send them Whatsapp and forget that and later wonder if they will be angry if I don’t send message and then forget that too.

My filter also broke. Saying things I should not say, like hurting someone or tell someone something I shouldn’t, not that we keep secrets, but sometime there are things you don’t say in public or to you family or to anyone.

It’s getting on my family’s nerves that I ask say 3 times in a row how they are and just forget I did. The forget thing is weird. I forget… it is like a black hole where nothing even ever existed. I started making jewelry, that helped keeping me stimulated, but lately I cannot think up new designs. I went to my GP yesterday and he asked me to take off my jacket and I asked him which one, as I was wearing two. He looked at me and said both…. that’s a bummer and I remember it. I don’t feel in control anymore. I get anxiety when left alone for a few minutes. Then I don’t know where everyone is.

I don’t know if any of this makes sense. I don’t catch a joke anymore, no matter how many times you explain it. It is difficult to communicate without seeing someones face. So video call works better for me to understand something. In this time of lockdown I really have no sense of day, date even time anymore. It is one big sleep time and awake time.

A human being needs to socialize, if your brain don’t function and the basic requirement of socialization even on the most basic and way, like saying hello to the lady in the pharmacy are deprived of, it shuts down. The few thoughts you have gets muddled. The other night I was lying in bed and the weirdest thing happened. I tried to think, but all the words were like a lot of colored marbles in a bag, refusing to form a sentence even a picture. That happens more and more with me. Communication, it becomes more and more difficult. When there is confrontation, I just use swear words and say bad things, because I cannot sort matter in my brain to fix confrontation.

Got to go, stay safe.

Lots of love

Saro (Elmarie)