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)

Communication and dementia

Warning: Content might be upsetting. I have started writing this when I was very depressed, but decided to post it anyway. I feel much better now. I also discovered that the pharmacy accidentally dispensed one tablet 200mg instead of 50mg as said on the box which is the correct dosage and I got 10 days behind on my hormone sticker plus my current emotional state. I hold no one accountable but myself. But I post this, if it can help someone. Always ensure that someone check your medication, even if you feel you are still able to take it on your own. Ok and here goes…..

Hi there. I think I mentioned somewhere that my friends got their affairs in order, while everything is still sort of ok. Well I thought I didn’t know how or what, but it finally came to me what I want to get in place.

Now talking about this in my house, did and still is not going down well. One thing I know for a fact is that my family will take care of me for ever, because they love me so much and me them.

Now, it isn’t just me that goes through stages and emotions about this dementia thing, they too mourn and at the moment are really angry and of cause scared. I really want to encourage them to get it out.

Another thing, I want to get through my shit as well.

Was on a zoom webinar last night with Teepa Snow… wow, she is awesome. She said to me something that makes so much sense. I want to talk about my death and stuff and all it does is freak my family out. She said she will see if she can organize something for me and my family…. God bless the internet. It is not that I just want to do these things, I have always organized things. I’m trying to do the mom thing, putting affairs in order, so that they will not have trouble along the road.

I know that it is bad for my family as well and that they suffer too and the same for me as well. I’m so depressed don’t know what do. The bipolar most probably plays his role as well.

I am just at the moment really at a very bad place. I’m crying my eyes out. All I want to do is die and get it over and done with. There are actually a few things I can do to accomplish this. Being depressed and making plans is never a good thing, believe me.

My family are so supportive and then there is dear Creeky, my very special friend from Corpus Christy, Texas, USA. and my other friends for Dementia Mentors. Always having my back, praying, sending messages and just loving me as I do love them.

I have to go now sorry, but will be back.

Much love and kindness

Saro (Elmarie)

PS: Just a reminder, I don’t edit my articles, as I cannot really see my mistakes and I want my blogging from the heart and authentic.

Giving up or not.

Hi there 🙂

This week me and some other friends talked about medical aid for persons with dementia. Now there was one new friend. When they asked him if he is also applying for having medical aid, he said he is only 52 and that he will be dead in 10 years because of the disease he has. I was to afraid to ask him what it was, but it must have been some form of dementia, as the group is for people with dementia.

I was so sad. The others just did not say a thing. What was in each person’s heart? Fear, acceptance, sadness or even anger?

The above words I found on facebook from a lovely person I don’t know and never have met. It is so awesome. That is how I would like to do it. I already have God in my life. The rest is yet to see.

Something I notice, is that the moment something change around me. Does not matter what, I get confused and stars crying. I can not handle it anymore if someone is so called teasing me. It is as if my brain simply freeze up and the emotions of crying shows up. I try to handle, hide it… correct word missing now. I cannot think. Some days I feel normal… five seconds in, something happen lol. So I will just have to take it day by day.

Now got to go. Lots of love and kindness.

Saro (Elmarie)