Tag: living with dementia

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
1 O 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!
2 I’m energized every time I enter
your heavenly sanctuary to seek more of your power
and drink in more of your glory.
3 For your tender mercies mean more to me than life itself.
How I love and praise you, God!
4 Daily I will worship you passionately and with all my heart.
My arms will wave to you like banners of praise.
5 I 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.
6–7 I 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!
8 With passion I pursue and cling to you.
Because I feel your grip on my life,
I keep my soul close to your heart.
9 Those who plot to destroy me shall descend into the darkness of hell.
10 They will be consumed by their own evil
and become nothing more than dust under our feet.[a]
11 These 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)

Chicken outing facilitator

My head is so foggy and down right screwed today, but it was all worth it.Actually my head feels like that chicken’s hairdo. Yesterday Fairyland pre-school had an outing to a friend of ours chicken farm. The picture is of my eldest daughter with her favorite Sylky chicken, Lora (She writes as She Wolf). This is a link to her blog, she gives her side and experience of living with my dementia. http://adairyandsomefeathers.home.blog/2019/07/25/are-two-heads-better-than-one/

Well I volunteered to do the chickens and rabbits. They came in 5 groups. First group, the teacher had to give me a few pointers as to what to tell the kiddies. Like where the chickens comes from… o dear. Second group went a bit better, but by the third group I had to keep on asking the teacher if I said this and that already. Lol one kiddie picked up a rabbit poop and put it in his mouth. I just put my hand in front of his mouth and said… spit… spit.. spit.. The next groups went a bit more difficult for me, but I managed. I am so proud of myself that I could do that. After that I still had to do my kids at the Aftercare Center… that pushed me over the edge. But I still managed.

Having dementia does not mean you are useless. You can still do things other people do and I’m not afraid to venture out. It is difficult to keep my thoughts straight writing this. I made friends on Dementia Mentors Virtual Cafe that can’t read or recognize people anymore, but they still give lectures on dementia… our side of it, to big audiences. And there I fricken cry again. I realize there will come a time when I really will not be able to do anything, but while I still can, I will live life to the fullest.

Something that is sad, is that people that loves you becomes so protective that they just don’t want you to do anything. I took my night meds the other day instead of the morning ones the other day. Nothing happened, I just slept all day, that I think just did me some good. I recently stayed 3 weeks on my own, with my friend across the road checking in on me without any trouble. I just cooked our meals for 3 weeks on my own… with instructions, but I did it without setting the house on fire or harming myself.

Can’t remember what I really wanted to say anymore. Let me go see what I can do without using my brain…. Wonder how long it is going to take me to recover.

Just a note to whoever knows me and reads this… don’t worry because my head feels shit after everything I did yesterday, I recover and will kick your fricken arse if you refuse to let me do things again. Please I want to.

Love and kindness and sorry for the bad words at the end.

Saro

What a lovely day

Today was just a westome. First my husband Andries and my youngest Nita came to visit me. (They are all looking after people’s pets and houses when they go on holiday and that way they pay their university fees) So first thing… I forgot it was fathers day and the dear donut never mentioned it to me. O well I found out about it on another chat I’m on and send him a nice message.

My friend Marian (on the left) baked me this lovely awesome yummy carrot cake.

Then my “babysitter” Marian fetched me. I was in such a hype… all over the place, even folded her washing and grating the carrots for the carrot cake. When the time came for me to make the chicken livers with a zing thing, I got stressed out and asked her to do it. It was so yummy! In between she were fixing her chickens, she is a chicken farmer and have some awesome chickens. Lora (my eldest) also are partners with her.

Look at this awesome chickens.

Then she baked the most yummiest carrot cake ever. I almost did not want to leave, but bed and taking meds time caught up with us. Thanks for being my friend Marian, I know you read my blogs.

Much love and kindness to all.

Saro

The seeking kind.

There are one type of dementia that I have not heard of, but secretly knows about. The seeking kind.

Now the thing is like that. I always carry a handbag. Not just a handbag, but the biggest one you can find. My husband recon I don’t need anything for self defense since I just need to hit someone over the head and that will be the end of any person with evil intentions.

There are however many treasures in it. Hand cream… never used. Hand sanitizer that my youngest young lady deposited in my bag, just for in case I touch something that can go viral. Never used, but it smells great. Wet wipes, but I am so not telling why I need wet wipes. It is part of a small kit my young ladies assembled for me that I have to carry everywhere I go.

A blue carpet knife. My family said I need self defense. The blade seems a bit short and it is lying right at the bottom of my huge handbag, not going to work. How do I tell a robber or evil person to hang on for a minute, I need to find my carpet knife to re arrange his face or fingers or something like that. But let me leave the knife in the bag, I just may need it.

My cellphones. One for use, quite a nice one, Huawei P20 lite. Hmmm I heard Huawei is having some troubles, but my dear head have enough troubles to worry about that one. Then my Dawn of Titans machine, the online game that I’m playing. Some chargers, earphone for just in case. The DOT machine should stay at home, because it does not have wifi or data outside of the house.

Looooong list. Then my darling Boelie, Boerboel likes to stash his hooves and toys also in my handbag.

Then the really sneaky thing, sometimes I need to place stuff in a place, so that I can find it quickly again. It lands up in my handbag. So my family find many things in my handbag. Whenever I start searching, anxiety takes hold of me. You are not going to believe all the things I find in my handbag, specially trouble as well when it is discovered that I stached something away in my bag.

Now my youngest decided to sort me out. She gave me a new bag to use, bigger than the previous one. Sorted everything beautifully and with a plan. Now I really cannot find anything, but the main thing is, my stuff for my Aftercare Centre is in there and that stuff I can find. Then I stole my husbands new bag, also given to him by my youngest and I re purposed it to put my other stuff in. Not going to give a list of that. Now am the proud owner of two bags full of treasures of the most important stuff any person may need.

So now you know about the seeking kind of dementia.

Thanks for reading.

Much love and kindness

Saro

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