To change or to adapt…

Royalty free image from Dreamstime

I have a new old hand me down grateful laptop. Yay, now maybe I can write agein.

Before I carry on with my pitty party or whatever, here is something very very sad. My eldest and I suspect my youngest as well, feel they have to change who they are or how they express themselves. That they cannot be anymore who they are, because it causes my husband, that is pushing for 70 and I suspect also have some sort or dementia, to be agressive and makes me unhappy or crying. They don’t understand that they don’t have to change who they are, but must adapt to the current situation as it happens. I have a brain disease and my husband is not the young 21 anymore, so you with the good still functioning brain will have to adapt. Hopefully while gaining all the information that you need to handle the situation, so not to become frustrated and unhappy. Use Google. I think only God knows more than Google.

My husband (he is a good and kind man and I love him very much) deffinately does not think rational or logical anymore and with the dementia, I have my own problems with communication. The eldest says she talks “vehemently”, now that’s a strong word. The other day she said she is enthusiastic and gets excited, so her voice raises and vocabulary is in line with that, which is fine and better than the word vehemently. I also get excited etc., but my perception of face expression, tone of voice etc.,simply does not compute correctly to my brain sometimes anymore. Also confusion and lack of memory…. She says that she feels it is harming us. It is NOT true. My husband does not listen to anyone or shutup and listen until the other person finished their story. He reacts with aggression to anything from the start, even before he listened what anyone said.

I realize…. maybe am the only one that realizes it, is that he cannot hear when more than one person talks at the same time. See, the man is deaf and that the fricken hearing aid is causing a lot of problems. Somehow the hearing aid is not giving through our voices correctly. Bummer…. would like to step on it, but being stone cold deaf will be the end of him. The only thing keeping him alive or whatever, is his music. I can’t even imagine that, it will be so unthinkably terrible.

Now the youngest has this problem that everyone, specifically my husband is always telling her to shut-up and that she never has a say in anything. Misconception…. she starts talking by interrupting and then husband can’t hear, he tell her to wait or shut up, then she reacts aggressive and speaks to him in a manner I NEVER would have talked to my parents, even my abusive mother.

My husband does not love himself… his body and whatever, not going to ask him and get into that, he have to sort that out, I can’t do that for him. (my daughters also does not love them selves or eccept themselves for the absolutely amazing and good people they are) So he is negative, listens to people that promotes and preaches poison all day on the internet and sad to say have this humour that a woman always don’t like the husband or that the husband is always in trouble with the wife. That is a preconcieved lie from the devil. He just never accepts that we or anyone can have a different oppinion than he as well.

Many problems starts off with inaccurate preconceived ideas and believes that are piling up in our unconsious, through a few bad experiences and mostly through the mass media that we are bombarded with in this day and age. There are so many gullible people that just swallow what they are being fed… then they send all those scams and incorrect information on to other gullable, stupid, uninformed and uneducated people. A few examples…. about races, covid 19, vaccination, or what ever the trend of the day is.

Oh well, let me stop here, can’t remember the other hundred things I wanted to say. Must admit, I edited this and am amazed at the words that I used. There is nothing like a good night’s sleep and enought hydration for dementia.. The night before I did not sleep at all and were a zombie the whole day long. Anyways, have a lovely day..

Lots of love and kindness.

Elmarie (Saro)

Day 3 of total lock down.

I’m almost scared to use the word Corona virus or whatever it is called, as it is everywhere and now in my post as well. In South Africa we are in a total lock down for 21 days.

What is strange, is that I never want to go anywhere or even get an opportunity to go anywhere, except to work (doing limited tutoring with my daughters). Now that I can’t go anywhere, guess what…….? It feels like death itself. That emotional thing that happens when you are told not to do something and all of a sudden you really want to do it…. a bit, okay more than a bit like with children. Tell them not too and guess what, five minutes in and the deed is done.

With the dementia it is not that easy, as I am getting to forget a lot lately. Got an entry in my diary “contribute to tommy otter” what the hell that is, I don’t know and am too scared to ask. I have decided to get some sort of schedule going.

1. Blog, obviously

2. Play my online game Dawn of Titans, which I quit a while ago.

3. Make my jewelry.

4. Look after my zoo of dog, cats, bird, chickens, bunny and husband. My daughters are not here, but are stuck somewhere else. Can you imagine my one bunny “Ashes”, other one is Sparkle, tried with his little paw to remove the stone I was busy putting on his latest escape tunnel. The audacity (big word… yaaayaaa), so I fetched another one and put it on that one. When I went to feed them, I noticed that the man was quite busy, with you know what.

I see that I’m getting sidetracked again as usual. Thing is, I have decided not to keep on reading all these reports, only check out positive text messages. Keep the air freshener close to me, to use when my husband is getting overly busy on his pipe. It really sounds strange… just sucking on it, like it is a ventilator or something like that. So we should keep out of each other’s hair. Maybe the two of us have a few things to work on…. we will see.

The dementia thing is getting a bit worse. I still could figure out something went wrong, but now it happens less and less. Just blissfully have no idea if something went wrong.

Something on coping… must put this in my diary… Put up stickers. Geyser switch… up is on and down is off. Same with stove and whatever might be dangerous. For the life of me I could not figure out 2 days ago which way the geyser is on or off.

Ok… Zoo… check, Blog… check, game… check, jewelry… check, husband… still alive and kicking… check.

Bye, and stay safe.

Saro (Elmarie)

Stigma

Stigma

“The negative stigma attached to issues of behavioral and mental health is the product of a long history of misunderstanding, exaggeration, and ignorance. In today’s world, many people believe that behavioral health issues, even extremely common ones like anxiety or depression, are somehow a sign of weakness.

Sensationalizing in news stories, tabloid magazines, and television shows make a point of referencing a history of mental illness in the background of a person who has committed a crime or violence. Other sources of stigma include societal factors, like the idea that asking for help is a sign of weakness, and that people who can “take care of themselves” are somehow stronger.

However, strength is not merely the measure of how much we can endure, but how we choose to deal with the problems we face.

Suffering from a behavioral health problem affects quality of life. Neurological and physiological sciences have proven that issues of behavioral health: addiction, depression, bipolar, phobias, PTSD, and more, are matters of biochemistry. With therapeutic techniques, well-managed medication, and behavioral modifications, behavioral health issues are treatable, and affected persons can live normal lives.

How can you help fight stigma?

  • Respond positively to media you encounter that works to de-stigmatize behavioral health care.
  • Respond to false statements about behavioral health conditions with truth.
  • Share your own experiences with behavioral health conditions—both your own and those of people in your life. The more exposure the general public has to a positive understanding of behavioral health, the greater their compassion will be.

If you or someone you know experiences mental health stigmas in a way that keeps them from getting care, telehealth may be a good solution. Some telehealth providers specialize in offering psychiatry and behavioral health care through online video calls. Learn more about InSight’s online psychiatry and therapy option, here.

If you are in crisis, call the National Suicide Prevention Lifeline, a free, 24-hour hotline at 1.800.273.8255. If your issue is an emergency, call 911 or go to your nearest emergency room.

856.797.4772 | Copyright © 2019 All Rights Reserved. | Privacy Policy | Disclaimer | Adminfacebooktwitterlinkedinyoutube

I started this blog some time ago and noow decided to post it. Please visit the blog I refed to.

Stigma has so many faces.

I will try to blog again soon.

Love and kindness

Saro (Elmarie)

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)

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)

Getting stuff in order

Warning: Contents might be upsetting.

Hi there

Haven’t written in a while (getting to be a boring intro..), but I find my concentration to be shorter than that of a hamster and I get so easily distracted, it’s not even funny.

Before I get distracted again. This is still about getting stuff in order, because at some stage I will not be of sound mind anymore or whatever happens with vascular dementia. Fact is I’m going to die……. BUT ON ALL THE OTHER DAYS I’M GONNA LIVE. (Snoopy and his chum Charlie came up with that I think, but I’m going for that “all the other days” ) watch how I get distracted…. I want to do fun things, already tried one thing. My husband bought us a new mattress and I wanted to jump on it, he refused me immediately… just sitting on it and hopping, I tried to make it a bit less upsetting for him, being strict with his woman and such things. He still refused. (I waited till he left the bedroom, mattresses don’t talk… lol)

Okay, here goes. First of all I could not decide who to give power of attorney, not wanting to step on anyone’s toes of feelings, then Lora my eldest stepped up and informed me that she will take the job. Don’t know if they held a meeting or something, but made it easier for me. Then she got me in the car and got me to make an appointment with our dear local attorney Gerhard Mattheus. The living will went down a bit more difficult. I got an example from his office and it scared the living daylights out of me. Remember now here, that I don’t want to take my own life. The bipolar is just a nonsense that is being controlled by medication and family.

The living will is for if by some way or another me and my family can be spared me to be in a vegetative state as I see it. No resuscitation or machines and such, is my wish. I also thought it to be cruel to doctors, but it is my life and my decision. A decision not made lightly. My family’s first reaction to the living will idea was that I want them to kill me. By no means, it is only for when I’m going to die from something else or another, I don’t want to be resuscitated or kept alive by all means. The end of dementia is way more upsetting and scary for me than anything else. I know this must be upsetting, but life is not fair and facts are facts. Well both documents are now in place and I have peace now.

Just one more thing to be done… Give forms in booking places for me and hubby for one day in the far far future at our local Old Age Home. We know everyone there and will be happy and be cared for. I put all our documents in a file, just need to update the funeral policy details and all is finished and we can get on with our lives. Mind you trying to fix the policy over the phone was quite a nonsense. The female were incredibly rude and my husband is deaf and have no idea what email addresses are and all such foreign stuff from Marsh. I’m 56 and he is 65, I think that should explain a few things.

Well, I think I’m going to say bye for now. So lots of love and kindness

Saro (Elmarie)

Tumeric and 8 months.

Now for the fun stories I remember! This one is about my youngest Nita and a container full of turmeric or actually my homemade curry mix.

Now I was on the telephone chatting away with a friend of mine, when it happened. SILENCE!!!! Now every mother should know that when your kids are quiet, they are busy with that being naughty thing. Nod your head if you know what I’m talking about.

Saying bye, I put down the phone and went searching. O, dear! I found Nita sitting in front of the bookshelf tearing out pages of my favorite books, but that was nothing, believe me. Apart from tearing out pages the little face looking up smiling was covered in curry. Yellow from top to toe.

Now in those days being naughty received a whack or two on the bum. I just couldn’t. I ran to the bedroom, covered my face with a pillow and laughed and laughed and laughed. It took some time to recover.

I went back, dusted the little nugget’s bum with a slight wack or two and pulled her through the bath.

End of story????? When dressed again she put her arms around my neck and slobbered me with kisses all over my face. What a wonderful gift kids can be. Today she is 26 years old and the sweetest loving munchkin I know, still hugging and kissing.

This is my loving memory for my family for today.

Much love and kindness

Saro (Elmarie)

Adapting to change.

Hi everyone.😊 Me and my eldest had a fight today. I suppose it’s my fault.

I feel guilty because of the stuff I can’t do anymore. But thing is, I did not ask for this dementia thing and it’s not my fault.

My house was running very smoothly up to some time ago. Everyone had his task and responsibility. Each were allotted that which they liked. So smooth running.

Now we have to adapt and I notice, that it is not that easy. Well adapting in itself is a difficult thing

I tried to make food today and halfway I suddenly felt heavy, sleepy…. As if I couldn’t move or think. It happens often now. I’ve been advised by my Dementia mentors friends, that I should go sleep, but I couldn’t. Lora actually came home to pay the bills, which I can’t do anymore. She eventually finished the cooking, for which I’m grateful.

We will have to adapt somehow. I mentioned many times how my heart is broken for me and my family. I suppose I will need to let each one come to terms with it on their own. It still is a painful thing for my family to discuss.

We have always stood together, face the problem and fought it together or found a solution. We always came through the toughest times and situations. This is no different. We have before and we always will, because we don’t have to do it on our own or own power. God is with us, have been and always will be…. and that is enough.

Much love and kindness.

Saro

I don’t want it!

I don’t want the strokes… I don’t want the dementia!!!!! It makes me miserable. Some days I feel courageous and other days I feel like this. I feel stupid, incompetent and useless. If my family reads or hears this, they will assure me that it is not the case, but it is how I feel.

The Bipolar does not help either. It is something that has been haunting me for practically all my life. Suicide attempts, horrible highs and then the terrible downs, where all is black with no hope. There is also the aggression. That is the worst of all. It makes me a monster. It harms me and my family equally and sometimes I think it harms me most because of the guild and sorrow.

I am on so much medication that if I take any more, I will be a slobbering fool. The medication is a mood stabilizer and the Dopaquel takes care of the aggression and insomnia. Obviously there is nothing to be done on the dementia medication wise. They gave me Memantine for 6 months, to see if it keeps the decline less, but I don’t see any and have stopped taking it. The other medication I take because it keeps me alive.

Then there is the anxiety and epilepsy…. I think I cover almost all the bases on what can go wrong in the head. Thank God I am mentally and behaviorally stable and don’t have personality or something like that problems.

I just can’t stop crying today. My husband is in a sh@t mood as well and that’s not helping. I cannot handle conflict. That simply is too much for me. I feel as if I cannot do anything anymore, which is not really true, I can still wipe my own butt so to speak. I keep on putting things away and when I or everyone else starts looking for something such a huge cloud of anxiety comes over me.

I cannot say something about my husband here, because it will not be right, I do love him though, but I think he needs help as well mentally. How to address that is beyond me. My kids are a tremendous help and comfort.

All these things is not written on my face, or scars or something. It is in my fricken head. As long as I keep my mouth shut nobody will be any the wiser. I do have a speech impairment because of the strokes and the cognitive impairment is …. as I said as long as I keep my mouth shut.

But how can I shut my mouth and not talk, because with the dementia in the later stages my speech will disappear all together.

Many people think that having dementia of whatever kind you are immediately unable to walk talk or function. It is not true. You can still have a meaningful life for many years until THAT DAY comes. Yes we need assistance and the assistance will be increasingly needed. But people are not all of a sudden this monsters that does not want to shower or whatever. Yes I feel sorry for the caregivers and I am very very grateful for what they do. They dedicate their lives to take care of their loved ones. Thing is the ME does not go away. I will always be there, even if it looks like I’m just a shell. Nobody can suddenly go from somebody to a nobody. Until the day you die, you will be a somebody with a name. I am Saro or Elmarie.

All this is breaking my heart for myself, my family and everyone that have the same conditions. But life is not fair. Nowhere is there any guarantee that life will or is moonshine and roses. If someone have cancer or some other disease everyone go and visit etc. Most of the people that I speak to that have dementia said that they have lost friends and even family. So many are lonely. I am so grateful for Dementia Mentors that introduced me to friends that are the same as me. Days like this I just want to curl up and die or something like that and no dear daughters of mine that reads my blogs you don’t have to put me on suicide watch. I will most probably recover and be on my merry way again. I am not going to re read this post so please put up with the mistakes and thank you for reading/listening, it is appreciated.

Saro

It is happening to us.

O dear I don’t know how to start this blog. Maybe just hello? My eldest daughter started wring a blog as well. http://adairyandsomefeathers.home.blog/2019/07/06/sad-thoughts/

Maybe writing will bring a bit of consolation or understanding that which we cannot really talk about for now. When I was first diagnosed with vascular dementia, I was so self absorbed in this horrible thing that happened to me, I did not even think of what my family must go through. There was a certain relieve to know what was wrong with me. Now it has a name and we can get educated and take it from there. It was just dark for me.

But the reality here is that I have vascular dementia, but my entire family are affected by it. They are horrified by what is happening to me, as my daughter wrote at the above link. The denial, facing the reality of the disease, watching me being affected and having to take over all my responsibilities. Putting extra stress on them, but one thing I know, is that they love me dearly and I them.

Some way we have to adapt to the circumstances and changes. But how?

THIS IS MY VERY INTENTION!!!!!

Got to go. Much love and kindness.

Saro