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.

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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)

Standing still 2

Some time ago I wrote about, just standing still by someone to comfort. This is counting for my 5 things that made me happy.

I think I mentioned a million and one times that my friends sort of disappeared. They are busy, specially over season as this is a farming community. Some of it is I suppose my fault as well, I did not go to visit them and on the other hand, I cannot drive anymore and to get my family to drive me around to visit is another matter all together, but I suppose they are busy too and my husband is complaining about using too much petrol, unless he go and visit his friend, which is an uncle, which I suppose does not count and now I suppose I should shut up about that.

This morning me and hubby went to church for a change and was early as usual. The next moment a friend of mine, her name is also Elmarie, came to me. I was still standing in the passage, She asked me how I was and I started crying of cause as you might have guessed. She told me she missed me and loves me and then gave me a hug. She is much younger than me, but she serves the Lord with all her heart. I asked how her kids was, they were in my Aftercare center and then told her about the dementia. She gave me another hug and told me that all I ever have to remember is how much God loves me. Sometimes we forget.

When I got home I found a text message on my phone with the next bible passage:

Psalm 63 The Passion Translation (TPT)

Thirsting for God

63 For the Pure and Shining One
King David’s song when he was exiled in the Judean wilderness
¹O God of my life, I’m lovesick for you in this weary wilderness.
I thirst with the deepest longings to love you more,
with cravings in my heart that can’t be described.
Such yearning grips my soul for you, my God!
²I’m energized every time I enter
your heavenly sanctuary to seek more of your power
and drink in more of your glory.
³For your tender mercies mean more to me than life itself.
How I love and praise you, God!
⁴Daily I will worship you passionately and with all my heart.
My arms will wave to you like banners of praise.
⁵I overflow with praise when I come before you,
for the anointing of your presence satisfies me like nothing else.
You are such a rich banquet of pleasure to my soul.
^6–7I lie awake each night thinking of you
and reflecting on how you help me like a father.
I sing through the night under your splendor-shadow,
offering up to you my songs of delight and joy!
⁸With passion I pursue and cling to you.
Because I feel your grip on my life,
I keep my soul close to your heart.
⁹Those who plot to destroy me shall descend into the darkness of hell.
¹⁰They will be consumed by their own evil
and become nothing more than dust under our feet.^[a]
¹¹These liars will be silenced forever!
But with the anointing of a king I will dance and rejoice
along with all his lovers who trust in him.

And this song: https://youtu.be/IUhJNA0XGqc from Chris Tomlin.

Only Jesus knows our hearts and can do things like this. Send and angel to comfort you. I so love God and you should too. Another song: https://youtu.be/SAhlIHCZw5A In Moments like these a love song to the Lord of Lords.

Much love and kindness

Saro (Elmarie)

An angel called Frankie

Today I would love to tell you about Frankie, my very own angel. Telling this story comes because of this post I read https://example30147.wordpress.com/ . Okay… here goes:

Long long ago, there was this… Oops, this is not a fable or fiction, but a true story.

In the 1990’s we lived in Welkom in the very flat province of the Orange Free State in South Africa, we now live in the very full of mountains Eastern Cape province of South Africa. I used to go and get my bread and milk and such at a tiny shopping center close to where we lived. There Frankie did his job. Some… ok most people would call him a beggar, but I did not see him as a beggar.

He always showed me an available place to park when he saw me coming and would stop the traffic for me to reverse and be on my way. When I came out of the shop, he carried my bags for me to my car. Now this relationship did not start up easily, because so many beggars took me for a ride because many times if I bought them bread they just dump it in the bin or disappear into the Bottle store, in front of me, some of them damage your car or threaten to kill you if you refuse to give them something. So I don’t like beggars and I don’t carry cash with me anyway.

Now Frankie was not remotely anything like that. He had lovely manners and somehow always were neat and clean even though he wore rags. Later on we started making small talk, mostly about Jesus, but later about where he lives and his girlfriend… Yes Frankie had a girlfriend and all sorts of stuff. One day I started to pull away after still chatting with Frankie through an open window, when all of a sudden he put his hand through the window… I had the fright of my life, but he only locked my door.”Madam, always remember to lock your doors and keep them locked, I want you to be safe.” Such a sweetheart.

He kept on telling me to lock my door and if I don’t remember, he will lock it for me through the window. It later on became a well remembered habit of mine to lock my car doors.I will always give him money and much more than my husband most probably knew, but I knew it was an income for him. I suspect my husband and kids also gave Frankie money while I wasn’t looking. So Frankie became part of our lives.

One time Frankie was absent and we could not find him just before the store closed that night, so we asked the owner, who by the way also always gave Frankie a little job here and there, like sweeping the pavement for money. He then told us Frankie lost the place where he lived and were sleeping behind the shop under some boxes… he never told me about it and still was just his cheery self. So we went to fetch him, dirty and hungry and took him home. We gave him a bath, something to eat and made a bed for him in the lounge. The next day we took him back and later that day after going back to ask if he was ok, he assured us he found a new home. Frankie wasn’t very clever and I know there was something medically wrong with him.

One day I stopped at a stop street right across from the Court. All of a sudden I felt someone pulling at my back door trying to get into my car. I was so afraid, but because of Frankie, my doors were locked. Strangely the two perpetrators all of a sudden just stood back with a look of horror on there faces. They then quickly turned around and ran away. When I looked in the back of my car, I saw two angels. There was no other person with me that day. This is an experience I will never forget. God’s angels always protects us, being it heavenly angels or angels in the form of our dear Frankie.

Now that is the story of our Frankie. Sometimes we would still wonder if he is ok or not or even still alive. We loved our Frankie.

I would love to hear if you have similar experiences. Just post a comment with a link to your blog, so that I can share in your experience.

Much love and kindness.

Saro

5 Things that made me happy.

I missed yesterday, but I don’t think I should put any pressure on myself. Did however started up some drafts for ideas, just hope I remember lol.

1. The unconditional love of a child. This little angel running to me with arms wide open to hug me and let met pick him up, makes me happy. I really don’t mind keeping him entertained for the whole day, while his mom is helping me in the house.

2. We are all at home, but what would really make me happy is if everybody can just get on fabulously all the time.

3. I like the color red 😉

4. I like the music of Avi Caplan. He has the most awesome bass voice and I love Acapella , music.

5. I love to sometimes just sit in my chair and do absolutely nothing.

That’s it for today. Counted my blessings and all. Enjoy your day and try out posting short lists of counting your blessings. It helps make you feel better in realizing not everything is bad.

Much love and kindness.

Saro

5 Positive things.

1. I found this comfort in the bible.

For this reason we never become discouraged. Even though our physical being is gradually decaying, yet our spiritual being is renewed day after day. And this small and temporary trouble we suffer will bring us a tremendous and eternal glory, much greater than the trouble. For we fix our attention, not on things that are seen, but on things that are unseen. What can be seen lasts only for a time, but what cannot be seen lasts for ever.
2 Corinthians 4:16‭-‬18 GNB
https://bible.com/bible/296/2co.4.16-18.GNB

2. The smell of the food my kids are preparing is awesome.

3. I really enjoyed the sun on me and the beauty around me while hanging the washing outside. We live on a farm.

4. First day of holiday, I don’t have to rush.

5. I’m really grateful that I’m healthy in spite of the dementia.

Now your turn😁🌹

Much 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)

Still on the toppic of communication.

I will start with the deffinition of communication :

The imparting or exchanging of information by speaking, writing, or using some other medium. Oxford dictionary.

Things that influence communication is as follows:

Dementia, hearing disabilities, frustration, misunderstandings, not listening, anxieties, being pissed off because of things going wrong and then not listening. Being still pissed off about yesterday, last week or last year. (sorry for the bad words) Too busy to stop and listen. Not listening to the end. So busy thinking of what you are going to say and not hearing what the other person say. Misconceptions formed about other people even before you meet them because of some stupid gossip monger. Talking in your sleep does not count as communication.

I have it up to here… Pointing with my hand flat about a bucket height above my head. Wait… some more communication screwups is quilt, sorrow and denial.

I guess by now, you get my current emotional status. How do a person deal with this. Wait… Google :

http://www.themomiverse.com/motherhood-and-family/10-positive-family-communication-rules-for-your-home/

Our words have the power to build our loved ones up and guide our communications in the right direction, or they can have the opposite effect. But our words only account for 7% of the overall message that is communicated, which means that 38% of what we communicate is done through our tone, and 55% is done through our body language.

Keeping that in mind, here are ten positive family communication rules you can follow in your home to generate loving relationships:

Think before you speak. Take the time to think about what you want to say before you say it. Make sure your words, tone and body language reflect what you mean.

Tell the truth. It might feel like the right thing to bend or hide the truth to avoid hurting your loved ones, but being dishonest breaks trust. However, the truth should always be spoken gently and with love. Being brutally honest hurts feelings, but gentle truth builds intimacy.

Respect each other’s viewpoints. Is it more important to be “right” or protect your relationship? Remember there are a lot of “rights,” depending on who you are talking to, so avoid getting caught up in right vs. wrong, and instead learn to respect each other’s differences.

Ask directly for what you want, desire or need. How many times have you said “He should just know what I need?” People are not mind readers, and many of us have short term memories. So keep saying “Will you please…?”

Listen to yourself. The only way for us to know how our words and tone truly sound to others is to pay attention to ourselves. Listen to how slow or fast you speak, how soft or loud you are, how loving or angry you may sound. This is what your family members hear.

Let others speak. You know how frustrating it can be when you are trying to speak and someone cuts you off in the middle of your sentence. Allowing others to speak until they are finished without interrupting is a great rule for everyone to follow.

No psychics allowed. Avoid making assumptions about another’s thoughts, feelings, or anticipated behavior because none of us are mind readers. If you want to check in with someone and ask if your assumptions are true, that is okay, but you must never act on them (as if they are true) by making accusations or criticisms.

Be open about your feelings. Give absolute permission for all family members to verbalize (not act out) what they feel, see, want, think and sense. Be careful that you do not squelch feelings and perceptions you disagree with. Acknowledge and validate all feelings so there is freedom to express again in the future.

Be a good listener. When someone is speaking to you, give them your attention. Avoid thinking about what you are going to say next. Focus on what is being said, what your family member might be feeling, and how you can empathize.

Enhance your communications. You can improve your communications by learning to ask for clarification or checking in with your family member to verify your understanding. Simply say, “So what I’m hearing you say is…”, and repeat back what you heard. Communication is something we do every day, yet it’s still one of the most difficult areas in a relationship to navigate. If we practice and pass on healthy communication rules to our children, it will be easier for them to have successful relationships.

I have copied and pasted exactly as the link above for easy reference. How to implement it, is for now beyond me.

I’m still frustrated, because I’m unable to express myself correctly. With the dementia other people’s body language sometimes are difficult for me to read. Normal chit chat is easy, but getting a bit deeper… Gone are the words.

Is it realistic to expect to be happy all day every day… Don’t think so. You know turning to God will be a good idea. He’s the Prince of peace.

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)

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)