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)

How long is forever?

Hallo dear friend

I have been searching for a picture of a woman in pain on google, but could not find a suitable one. Words paint pictures too. I have been searching for online support groups for people diagnosed with vascular or any dementia, but all I find is for caregivers. There must be other like me that still is sort of okay and can still communicate. If anyone can help me with this it will be appreciated it very much.

I woke up this morning and felt as if  I cried the whole night. Maybe I did, I will never know. My meds put me out cold. The whole day is one big crying. But what I want to say is this:

At this stage I am still aware of what is going wrong. My speech that is not good. Stupid decisions I make. My reasoning that is way off. My daughter will tell me they are going somewhere and all that is on my mind, is that I will have to handle 20 kids on my own in my aftercare center. Which is simply impossible. I will start crying and not realize that they will never leave me alone. They took most of the work over and left me with just a few, because it makes me happy and I still can do a few kids. Then it will upset them that I could even think something like that.

I will introduce myself to someone and the person will say, love, we know each other for years. My answer is just that I must have been thinking of someone else… don’t know if that answer works.

I am alone at home at the moment, my family is away for the weekend. They look after after other peoples houses and pets for an extra income on weekends. My neighbor, bless her sweet heart baby sit me sort of. She visits and we have a standing date to cook and eat something together. And everyone video call me all the time. I wonder if they realize I have to go to the bathroom every now and then. A bit awkward, but If I don’t pick up everyone leave everything and try to get here as soon as possible. Today she decided I should make the chicken livers with lots of chili. I went to the kitchen and froze. I had no idea how to. In my youth I was a great cook. I had to really think hard and hope all will be okay. Well it did turn out well 😉

Well I see it took me a few paragraphs to get to what I actually wanted to say. My family, they don’t tell me how they feel about all this dementia stuff. They don’t want me upset or unhappy. But what do they feel about it? It must be horrifying for them to see what is happening to me. They had to take over paying the accounts and all my responsibilities. They have to look at me crying all day. Realizing that I don’t remember stuff as if I never heard or knew about it. I used to be their dictionary, mumskie google. Wife, mummy knows everything and about everything. Now I just get confused. If someone talk to me with too many words, I have no idea what they say. I must still find a neutral answer to something like that, what if I agree to go on a trip to the moon or something like that or say no to a chocolate, and then remember what response I decided on. That might be the hard part, remembering the response. I think my family’s hearts are as broken as mine.

How long will I still be able to have this bit of awareness. But it is the awareness that breaks my heart. If the awareness goes away, maybe it will be better for me, but worse for my family. Who will be my caregiver? My husband is 56 and not well either anymore. He is very much deaf and his back is beyond redemption. I know my wonderful two young ladies will take care of us, but they must have a life of their own too. There are so many questions still. Will this take years? How long is forever, if you don’t know what day or date it is anymore?

Thank you for taking the time reading my block.

Love

Saro