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)

Lock down effects on person with dementia

Want to give credit, but I have not idea anymore where I got this picture…

Hi there. Don’t know if I should ask anybody how are you, because I think this COVID-19 virus thingy is now getting everyone or most people down. If you are not staying inside and quarantined, you are an idiot.

See, I use words like idiot… not that it is a strange word, but this virus is turning some of us into things and people that we normally not would be or want to be.

Our biggest enemy, apart from the virus, is our thoughts and emotions. I have not been feeling well lately, everything feels “foggy”… like I will walk around, from here to there and have no fricken idea of what I am doing or wanted to do. Have a million things I want to do, but it just seem too much. Three pots to wash, is just too much. I feel frozen… paralyzed… It is just too much. I set myself 3 things to do. Blog, making Jewelry and playing my online game. That’s apart from caring for my children’s zoo, cooking (that is daunting as well, because I make more of a mess than anything else. The successes are much less than the messes.

I battle to think up something to cook. Google recipes, but then get bogged down in it and turn up with nothing and time for eat is long gone and my husband walk around with a slice of bread in his mouth. The only time of the the day I’m actually hungry is ten o’clock at night. Strange but true. Wonder if that’s my brain not being so fresh or what ever. Anyway, I do eat, because my husband must eat.

People does not realize that a person with dementia, whatever type, get to a stage where words are not making so much sense all the time anymore and we have to read the facial expressions and body language. to get to the whole conversation. Extreme expressions or reactions of other people absolutely put our brains in a standstill, with tears or whatever proper or improper reaction from our part. I don’t know how caregivers are doing what they are doing, but it must be difficult for them. Then on the other side, just think how fricken difficult it is for the person that actually have the dementia.

I forget, then I get reactions or feedback from other people that I have NO idea what to do with or how to react to. Being a caregiver must be difficult, but if you are a selfish I, me and myself type, put that person in an institution and get on with your life. Harsh words, but that is how I feel today. Nobody asked for this condition. It is stealing slowly but surely my whole being and life from me and I fricken hate it.

Something that also happens is, you had a fight or something with someone and all that happens, it gets stuck in your head. You don’t know how to get around it. Pieces in between just gets lost and all that gets stuck in your head is guess what…… the fucking fight. There I said the word… Fucking. Should I put a sign “not for sensitive readers” or something like that at the top. I don’t know… deal with it and just get over it…. you most probably can, while I might have some trouble with it.

Caregivers might have real trouble handling their loved ones, but guess what a person with dementia don’t know either and eventually don’t even know. My know and not know is getting less and less. I don’t really know all the time anymore when something went wrong because of me. The awareness is wearing off. It scares the living daylight out of me. Am I slipping away? My brain is deteriorating, is dying off. That is absolutely fucking horrible. I don’t feel sorry for my self, although not at this moment. Now I do feel sorry for my self and I’m crying as discreet as possible, so that my husband doesn’t see it and get upset.

I had a fight or whatever with my eldest daughter today. I tried to call again later, to try and fix things… I just couldn’t . I feel so paralyzed. I don’t know how to fix things or organize or even reason or plan anything anymore. The how is gone. Seems I can still write, most probably full of mistakes and so on, but that’s it, at least I try.

In spite of everything, I must continue to be brave and not give up. God help me… here I am!!!!!!!

Saro (Elmarie)