Good and bad days by Sue.

[John4Sue]

Hello to all!
In the words of Johny Cash "My name is Sue"
John puts things up & reads things for me on internet because I am almost blind!
I had major events with strokes in Dec 2013 and life can be very variable. I had a tremendous team of people re-educate me on how to cope with the physical limitations I received! The dementia side of things is a bit different, I have good & bad days!
On a good day I am with it and things make sence (like today) but I admit days of the week don't realy happen anymore my short term memory is terrible! When I have breakfast which is really brunch John reminds me its Saturday! Some body put a poem up on here yesterday it describes so well how I feel at times. On bad days I go off into world's that seem so real. I went to a party with a man who's name I heard but had never met! John quite often says "Yes dear" it's his signal to me in front of others I am away with the fairies! He used to try to tell me real life was different to what was happening in my brain. When like now we type things on the computer John is dyslexic with his own problems but he calls me his dictionary, spelling I can still do and realy well, maths I am afraid has gone, I have also lost my little bit of French and can not seem to regain it!
I love what John reads me from this site from you all right down to April planting bacon. I wondered if she fried the strawberries, it makes perfect sence to me! I also had a perfect picture of a bacon tree with rashers of bacon hanging from the branches.
Such is my life and brain!
Sue!

 

[aprilbday]

Oh Sue and John ! What a wonderful post! It captured so much of how dementia affects you and John who is a dear!
I think it was creative Sarah planting bacon but I get confused!!!
I will send you a picture that John should describe to you. I could not find the dogs food. They were hungry and it was the last one but I couldn't find it. The picture shows you were I found it eventually. Can you guess? Here's a hint: and ice tray is near by with frozen ice. My dog food was in the freezer. Since I am the only one that lives here, and my dogs can't reach the freezer, I can deduce that I put it there. Made me sad.

 

[Grannie G]

Hello Sue and John.

How wonderful to hear how you are both making the best of your difficulties.

I think the ability to communicate with the rest of the world of dementia is one of the big big plusses of being computer literate.

I wish it had been so for my husband. He had never used a computer and it was too late for him to learn.

It helped me though and I hope it helps you too.

 

[John4Sue]

Hi April and Sylvia!
If John connects the computer to our big tv and makes the room dark I can see things just about with what's left of my eyes. April's photo of freezer sums up life well at times!
John put up the picture of your little dog looking out of the window, He is loverly!!! We had a dog named Cookie a black Labrador he was so brave and saved my life on one occasion sadly he died doing it! One day perhaps when I a little braver I will tell you about it!
I would be lost without John, we are trying to move to make things easier for him, a small cottage with flat garden for me. The place we have is big and we were mid renovation when my strokes hit us! It's just tooo tooo much now for John.
Sue!

 

[aprilbday]

Cookie sounds precious! Take your time on that.
My dog looking out the window is Pierre. He is 8 years old. I cook chicken and rice or hamburger and rice for him.

 

[john51]

There are times when I feel sorry for myself. I get angry with dementia and dwell on what I have lost. Then I ready posts like yours Sue and realise how good I have it.

Thanks for sharing. Its good to keep in perspective what we all go through.

I wonder if any of the researchers have ever thought of reviewing the posts where some of us tell it how it is for us.

All the very best Sue and John

John

 

[Soobee]

I just want to say hello and I am Sue too and I hope that if I ever needed it then my husband John would look after me as well as yours does!

It's good he reads things to you. There are a lot of funny things on this site as well as the challenges of the disease. I hope you keep posting x

 

[jhoward]

I wonder if any of the researchers have ever thought of reviewing the posts where some of us tell it how it is for us.

I've often thought that, John51 - and not only researchers but practitioners of various kinds to.!

 

[creativesarah]

I am so glad that I put on my post about planting the bacon!
You obviously have a vivid imagination like me!
I didnt fry the strawberries as there werent any on the plants but I am hopeful for a good crop next year
Today I have been shopping twice at Tesco's
We have got a lovely new gtech hoover so I did a bit of hoovering. Kid and new toy springs to mind
I dont usually rush to do the hoovering
Tomorrow I am planning to do some tie dyeing as the weather forecast is good and I am safest doing it in the garden!

 

[aprilbday]

What is hovering! Not familiar with that term in America.

 

[Beate]

Vacuuming or vacuum cleaning.

 

[John4Sue]

There are times when I feel sorry for myself. I get angry with dementia and dwell on what I have lost. Then I ready posts like yours Sue and realise how good I have it.

Thanks for sharing. Its good to keep in perspective what we all go through.

I wonder if any of the researchers have ever thought of reviewing the posts where some of us tell it how it is for us.

All the very best Sue and John

John

Hi Sue! From Sue!
Thanks for introducing yourself!
It's one of those nights for us!
I can't get back to sleep so John sat here in bed reading the posts to me!
He has decided to keep this user name for me alone now, yes he types reads it all but my thoughts etc!
He going to be creating a new user for himself! So will be lurking on here somewhere! Beware of strange men lurking!
Sue!

Hi Sue!
It all sounds nice at times on here as carer/caree but I not that good at it! We muddle along but Sue's events have hit us at the worst time of all! Our home is a building site! Nothing's finished and we have leaky roof (major) no real money to fix it! Sue has lots of legal problems to sort from her life before she came to be with me! I am on absolute overload realy!
Thanks for nice thoughts though!
John

 

[John4Sue]

Cookie sounds precious! Take your time on that.
My dog looking out the window is Pierre. He is 8 years old. I cook chicken and rice or hamburger and rice for him.

Hi Aprilbday
I think Pierre is loverly!
Cookie was a rescue dog he was my friend when John went out to work before my accident! All that has stopped now! John tells me he had terrible problems with Cook when I was in hospital!
One very wet day in Feb 2014 John brought Cook to hospital in the car. I was missing him so much, one of the nurses knew I was missing him so arranged with John that she would get me out in a wheel chair and meet John and Cook outside the hospital! When Cook saw me first time for two months he didn't know which bit to wag first! It was very muddy and Cook couldn't controll himself he just wanted to be with me! The nurse made the big mistake of bending down to stroke Cook, he was so exited and loved attention so much he didn't mean to but knocked the nurse over with excitement,
he thought she was playing with him so Cook being Cook played on! Let's just say a very muddy nurse and Sue returned to the ward! The nurse was a dog lover and was crying with laughter! Everyone was looking at two very muddy people in a hospital! Me in a wheelchair!
The nurse knew she would be in trouble with the ward sister so we went back in service lift to my room and she got me changed and clean and had a shower in my room and changed herself into clean uniform! It was one of those hilariously priceless moments you get with animals!
It was so hard on John while I was in Rennes hospital because it was two hours drive away and if he came to see me for couple of hours it was a six hour event for him! Cookie before that was never left alone! If we went out so did Cook! So John used his van to bring Cookie with him! But that meant 2hrs drive half hour walk for Cookie in Rennes and then John visit me for 2hrs another walk for Cookie before the 2hrs back again! So it was 7 hour event for John to visit me in hospital! Which he was doing three or four times a week!
It's things like that, that let you know how much some one loves you!
Many moths later when I did finaly come home it was strange but Cookie seemed to know I could not see, he almost became like a guide dog, if I fell down and could not get up he would go find John bark like crazy to tell him something was wrong pull his trouser leg to say come mum needs you! To Cook I think he thought of me as his mum!
I have some music that reminds me of Cookie, sometimes I ask John to put it on for me, I can drift away to times when I would be walking with Cookie in the forrest Throwing him sticks to fetch, he never brought the same one back! If you threw a small stick he would bring a bigger one back, then if you threw that one he would bring back half a branch, throwing that he would return dragging half a small tree! When John was cutting logs with a chainsaw Cook would wait untill the log dropped and steal it and run away with it. Months later John would find logs everywhere! The big logs he could not carry (but he didn't know that) he would roll, because our forrest is on a hillside the logs would roll a bit stop! Cookie barked at it pushed it again untill it rolled crazy but so funny to watch. Log stacking was even funnier John putting logs on stack Cookie stealing them, John always said he had to cut an extra log in four because one was for Cook!
John says I go with the fairies sometimes, yes but some times I am with the Labrador cross that some how became a guide dog with no training!
Sue

 

[John4Sue]

I am so glad that I put on my post about planting the bacon!
You obviously have a vivid imagination like me!
I didnt fry the strawberries as there werent any on the plants but I am hopeful for a good crop next year
Today I have been shopping twice at Tesco's
We have got a lovely new gtech hoover so I did a bit of hoovering. Kid and new toy springs to mind
I dont usually rush to do the hoovering
Tomorrow I am planning to do some tie dyeing as the weather forecast is good and I am safest doing it in the garden!

Hi Sarah
You not hoovering, that's boring, now you air ramming its the new craze!

I have decided that bacon trees will exist in my new world. He cooks me pork in apple and peach sauce, so now I want bacon in strawberries! I live in a crazy world so let's shake it up a bit.
Here is a thought I never forget, "Bacon and eggs! days work for a chicken, lifetime commitment for a pig!!!!"

As to tie dying bit of a sore point round here, John has had to give up on studio and all his arty stuff like you do, he was teaching me to paint and I thought I was getting quite good then my accident stopped it! John's words are he feels its unfair to do visual arty things around me because I can't see very much at times, so we have replaced that with other art forms of music audio and writing. But I do hope your dye dipping event goes well! Cant think what you call it but J used to do the wax resist thing where you put wax on then dye it and wash off the wax! A lot of his art stuff had to be sold off, his dream was to run art based holidays here in Brittany but sadly we won't be able to finish the cottages now! Money and our situation are forcing us to move!
So it's a plan now downsize to a little cottage, get a new wet bathroom put in for me, hopefully to have enough left to buy a camping car/mobile home put our little Microcar on a trailer behind and Europe is our oyster, (wish OH wouldn't say that I don't like anything that comes out of shells, the French do very much)!
Anyway then we can go house sitting for people with animals! We get to travel and holidays and paid (not a lot) while doing it!
One thing I made J promise is he keeps his watercolours so he can paint the places we visit. I can sometimes see some little things if everything is right so as I always wanted travel it will replace some other things lost!
We both 64 so let's hope for positives in future years to come, the most important thing to me is we are TOGETHER!!!!
Now it's time for everyone else to get up I think I will go to bed! How he puts up with me I don't know?????
Tired now!
Sue!

 

[John4Sue]

What is hovering! Not familiar with that term in America.

April
Hoovering/Hovering is what you do when OH has just washed the kitchen floor and does not want mark's on it! You move across the floor without being in contact with it! But please hover quietly!
Sue

 

[John4Sue]

I just want to say hello and I am Sue too and I hope that if I ever needed it then my husband John would look after me as well as yours does!

It's good he reads things to you. There are a lot of funny things on this site as well as the challenges of the disease. I hope you keep posting x

Hi Sue
think we got mixed up with replies here some where, but that's ok I got dementia! LOL!
Sorry sue!

 

[John4Sue]

There are times when I feel sorry for myself. I get angry with dementia and dwell on what I have lost. Then I ready posts like yours Sue and realise how good I have it.

Thanks for sharing. Its good to keep in perspective what we all go through.

I wonder if any of the researchers have ever thought of reviewing the posts where some of us tell it how it is for us.

All the very best Sue and John

John

Hi John
sorry got confused with replies earlier (it don't take a lot nowadays) especialy when she gets me up at 4am and wants to go to bed at 9am now she wants breakfast at 20 to 12!!!!
Mind you it is Sunday in her world (not Tuesday).
To your post.
From Sue
Both of us became very aware of less fortunates in the world while Sue was in re-education (rehab) we met some fantastic people facing far worse than us!
There is another place here in France Centre de Capape one part of it is for extreme cases of disablement. When you see totaly disabled laying face down on electric beds is best desciption, like electric wheel chair but flat, controlling them with their tounge, having races along the pathways!
I think of it this way I was reborn at 61 the new me don't function like everybody else! It's all them others that's wierd not me I am normal (for me). Any way John always said before the accident if I had a brain I would be dangerous! I should come with a government health warning!
Now I been upgraded and got half a brain he now knows what trouble REALY IS! LOL
Thanks for your thoughts John51
Sue

 

[aprilbday]

Best postings ever! Like a book. Will take time to read and enjoy all.

 

[John4Sue]

Best postings ever! Like a book. Will take time to read and enjoy all.

Sue trying to write a book. It's going to be called "Best foot forward" sub title "misadventures of stroke victim". We are great fans of Susie Kelly author of "two steps backwards" (misadventures of a English woman in france). Also Mark Greenside "I'll never be French" (no matter what I do). They have similar writing styles and give Sue a real laugh when she feels down! So influenced by their style we thought we would take a light hearted run at stroke and vascular dementia In the form of a story. That is when Sue is with John not in dementia land to do it! Mind you we get a couple of good chapters out of what happens there!
Add in the area we live in is very 1950's Somerset life so lots of humour about local events within life in a french hamlet. "Its Monday so Brittany is closed".

John writing "Five Sue's and a rabbit"! that one is TOP SECRET at moment!
We just hope you all get a laugh now and again from events or postings.
S&J

 

[creativesarah]

Sue trying to write a book. It's going to be called "Best foot forward" sub title "misadventures of stroke victim". We are great fans of Susie Kelly author of "two steps backwards" (misadventures of a English woman in france). Also Mark Greenside "I'll never be French" (no matter what I do). They have similar writing styles and give Sue a real laugh when she feels down! So influenced by their style we thought we would take a light hearted run at stroke and vascular dementia In the form of a story. That is when Sue is with John not in dementia land to do it! Mind you we get a couple of good chapters out of what happens there!
Add in the area we live in is very 1950's Somerset life so lots of humour about local events within life in a french hamlet. "Its Monday so Brittany is closed".

John writing "Five Sue's and a rabbit"! that one is TOP SECRET at moment!
We just hope you all get a laugh now and again from events or postings.
S&J

I love david Sedaris 'me talk pretty one day ' about learning french Its hilarious

https://youtu.be/vCOyqELqWF4 this is the link to it if you would like to listen to it!