Wishing a peaceful day to all sufferers and carers alike
Oh Sue! As always you are an example to us all.
Dementia Looks Like This
- Thread starter aprilbday
- Start date
Oh Sue! As always you are an example to us all.
Thanks for this Sue J
sometimes posters respond to a particular post - which is fair enough - we can't always be aware of everyone's background and back story - and sometimes words don't seem to say what we want them to
Personally, I so appreciate all the posts on this thread and in this section of the forum - I try so hard to come to terms with my dad's situation - I know I make mistakes - I know I say and write things that may sound wrong - I try to understand but know I will never completely comprehend - so I'm very grateful for all the insight you offer so generously
I agree so much gringo and shedrech - thanks so much Sue J.
To recap, aprilbday is someone who has been told she has dementia but whose scan showed nothing to allow her to receive a proper, more specific diagnosis. My wife had that same experience and I had been looking after her for nearly a decade when her dementia was progressing before she got a supposedly more precise diagnosis. During that time I tried to concentrate on whatever positives I could find and encouraged her to do the same. The leading expert who we were seeing encouraged that. And I still do it, even though she scarcely talks now, is bed/ wheelchair bound, and doubly incontinent. We have been through some heart-rending times and I'm now far more aware of what Sue is missing in life than she is. So the idea that I'm belittling what people with dementia are living with is nowhere near the truth.
I've had another look at april's replies and I don't think they suggest that she was offended by what I wrote. I have to accept that some other members have been offended and, as I have said, I'm very sorry about that.
To recap, aprilbday is someone who has been told she has dementia but whose scan showed nothing to allow her to receive a proper, more specific diagnosis. My wife had that same experience and I had been looking after her for nearly a decade when her dementia was progressing before she got a supposedly more precise diagnosis. During that time I tried to concentrate on whatever positives I could find and encouraged her to do the same. The leading expert who we were seeing encouraged that. And I still do it, even though she scarcely talks now, is bed/ wheelchair bound, and doubly incontinent. We have been through some heart-rending times and I'm now far more aware of what Sue is missing in life than she is. So the idea that I'm belittling what people with dementia are living with is nowhere near the truth.
I've had another look at april's replies and I don't think they suggest that she was offended by what I wrote. I have to accept that some other members have been offended and, as I have said, I'm very sorry about that.
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Yes we all make mistakes - BUT
Had three lovely days in London with my husband carefully organised so he could drop me off at Quaker headquarters in the Euston Rd I could travel to a conference with friends and he could take the train home. When I got to the meeting place I discovered that all my 'careful, planning had been useless. The conference is next week.
This after three frustrating days in a strange hotel bedroom where I couldn't ever find anything because the layout was different , and couldn't ever remember why I had gone into the bathroom so would wee a few drops and go out again when what I actually wanted to do was clean my teeth, When I told a friend this morning about the mixed up dates she said - meaning to reassure me 'oh I once went to the wrong committee meeting. EVERYONE DOES THAT. No they don't not dozens of times a day every single day, one is forgetfulness possibly due to stress or natural aging processes the other is dementia. Don't Please Please don't reassure us that we are 'normal' It honestly doesn't help
Had three lovely days in London with my husband carefully organised so he could drop me off at Quaker headquarters in the Euston Rd I could travel to a conference with friends and he could take the train home. When I got to the meeting place I discovered that all my 'careful, planning had been useless. The conference is next week.
This after three frustrating days in a strange hotel bedroom where I couldn't ever find anything because the layout was different , and couldn't ever remember why I had gone into the bathroom so would wee a few drops and go out again when what I actually wanted to do was clean my teeth, When I told a friend this morning about the mixed up dates she said - meaning to reassure me 'oh I once went to the wrong committee meeting. EVERYONE DOES THAT. No they don't not dozens of times a day every single day, one is forgetfulness possibly due to stress or natural aging processes the other is dementia. Don't Please Please don't reassure us that we are 'normal' It honestly doesn't help
thanks so much to april, shelagh & bill for their humorously put across stories. i think thanks also to stanley for his 'interesting' view and take on it! also a big thanks to shrimp for the more spportive view which we so often do not get.so many people when you talk with them just dismiss you saying that it happens to everyone at times. yeah ok, but not yesterday today and tomorrow and very scarily with the knowledge it will probably happen the next day as well.
like 'normal' people, it used to happen to me at times as well. now it happens lots and 'feels' very very different! i cannot and so will not try to find the words to say how it makes me feel but it is very scary and makes me tearful and i spent all my life thinking big boys don't cry. now i never seem to stop.
sorry just a bit of a rant but that also seems to happen lots now as well.
wayne
like 'normal' people, it used to happen to me at times as well. now it happens lots and 'feels' very very different! i cannot and so will not try to find the words to say how it makes me feel but it is very scary and makes me tearful and i spent all my life thinking big boys don't cry. now i never seem to stop.
sorry just a bit of a rant but that also seems to happen lots now as well.
wayne
Hi Wayne
Thanks for seeing the humor in what was written. Having a sense of humor is critical.
I am sorry to hear about your suffering. Big boys do cry and should cry! That's what tears are for-to cry! What on earth else could we do with our tears? They can tell a story when our laughter or suffering -or even just irritating allergies-dust -are too deep for words to express. So cry, Wayne. Cry when you feel like it because that's what tears are for.
And feet are made for dancing.
And mouths are made for smiles
And hearts are made your loving....
Thanks for seeing the humor in what was written. Having a sense of humor is critical.
I am sorry to hear about your suffering. Big boys do cry and should cry! That's what tears are for-to cry! What on earth else could we do with our tears? They can tell a story when our laughter or suffering -or even just irritating allergies-dust -are too deep for words to express. So cry, Wayne. Cry when you feel like it because that's what tears are for.
And feet are made for dancing.
And mouths are made for smiles
And hearts are made your loving....
You are correct! No offense taken at all. And God bless you for being a loving husband and devoted friend to your wife. Dementia is probably a good thing. I have other issues! I walk with crutches because my spine lumbar is deteriorating and just last week I learn my neck spinal area is compromised as well. I wear a neck brace now to keep my bones off of nerves and artery. My knees are bone on bone and I am obese on top of it all. So maybe having dementia will help me to forget all of those other problems. Lol
Thank you aprilbday. I agree with shedrech - truly amazing. I hope you'll continue to let us know how you are.
thanks for your lovely words and smiley thoughts. today i made myself laugh rather than cry..... was walking in a very determined manner along the high street and looked down at my watch. yes great i thought, got plenty of time..... then realized i could not remember what i had plenty of time for so i went back home!!!!
Sharing a moment:
Came home from work; got the trash and dog to take downstairs. Darn...I noticed that I still had my work badge and room key on me which I usually leave in the car. So I thought...ok...well...I will just put the badge and room key in the car when I go down to take the trash and the dog out which was right away. Kept them in my hand as to not forget to stop by the car and place them inside. Took my tiny dog out for a short bathroom break -about 3 minutes- because it was really wet and cold out. ...badge and key still in hand. Passed by the car, went through the nearby door which is only a few steps away, then I remembered that I forgot to put my badge and key in the car!!! Only they were no longer in my hand!!! I anxiously patted my pocket and they weren't there. I frantically looked in the other pocket, then inside of my mobility scooter...not there either! I must have dropped them when I came through the door!!!! Must be near the door! The door being just a few feet away -I quickly opened it and no badge and key. Frantic....I began to look on the concrete floor of the garage.....when I just had this super-creepy, uncomfortable feeling that maybe.......just maybe....no...it couldn't be...but dreadfully, I slowly went to the car...trembling at the very idea that the badge and key would be in there. No way...Please don't be there, I thought....no-I prayed God, don't let them be there! Please! Don't let me see crazy. Cautiously, I opened the door...my heart sank...there they were.
The badge and room key in my driver seat where I always throw them when I accidentally have taken them with me. Just that quick -I have no memory of putting them in there. None. Even now as I recount the details, my memory fails me. I feel shattered. I feel defeated. I feel demented, and this is what it looks like.
Came home from work; got the trash and dog to take downstairs. Darn...I noticed that I still had my work badge and room key on me which I usually leave in the car. So I thought...ok...well...I will just put the badge and room key in the car when I go down to take the trash and the dog out which was right away. Kept them in my hand as to not forget to stop by the car and place them inside. Took my tiny dog out for a short bathroom break -about 3 minutes- because it was really wet and cold out. ...badge and key still in hand. Passed by the car, went through the nearby door which is only a few steps away, then I remembered that I forgot to put my badge and key in the car!!! Only they were no longer in my hand!!! I anxiously patted my pocket and they weren't there. I frantically looked in the other pocket, then inside of my mobility scooter...not there either! I must have dropped them when I came through the door!!!! Must be near the door! The door being just a few feet away -I quickly opened it and no badge and key. Frantic....I began to look on the concrete floor of the garage.....when I just had this super-creepy, uncomfortable feeling that maybe.......just maybe....no...it couldn't be...but dreadfully, I slowly went to the car...trembling at the very idea that the badge and key would be in there. No way...Please don't be there, I thought....no-I prayed God, don't let them be there! Please! Don't let me see crazy. Cautiously, I opened the door...my heart sank...there they were.
The badge and room key in my driver seat where I always throw them when I accidentally have taken them with me. Just that quick -I have no memory of putting them in there. None. Even now as I recount the details, my memory fails me. I feel shattered. I feel defeated. I feel demented, and this is what it looks like.
Sent to Coventry
I was invited by the AS to attend a meeting at Coventry to comment on some proposed publicity material Had been before so was very confident about it. But hadn't registered that the meeting was being held in a different place. Arrived but no meeting. After some brilliant help and detective work from the staff at the United Reform church centre I found out where I was supposed to be. Got there on time but so soaked to the skin that when I got home and got ready for bed my bra had been dyed a different colour by my soaking wet sweater. Brilliant meeting. Train home was delayed by two hours because of an electrical fault and instead of being a through train to Stoke terminated at Birmingham. Had forgotten my phone (well I have got Alzheimers) so couldn't contact husband who had given up waiting for me at the station and gone home. Helpful station staff offered to ring him - but I couldn't remember the number. I did have it in my bag but was so tired cold and still wet I couldn't remember it. They ordered a taxi for me and I eventually arrived home at 8.30 pm
Fight on.
I was invited by the AS to attend a meeting at Coventry to comment on some proposed publicity material Had been before so was very confident about it. But hadn't registered that the meeting was being held in a different place. Arrived but no meeting. After some brilliant help and detective work from the staff at the United Reform church centre I found out where I was supposed to be. Got there on time but so soaked to the skin that when I got home and got ready for bed my bra had been dyed a different colour by my soaking wet sweater. Brilliant meeting. Train home was delayed by two hours because of an electrical fault and instead of being a through train to Stoke terminated at Birmingham. Had forgotten my phone (well I have got Alzheimers) so couldn't contact husband who had given up waiting for me at the station and gone home. Helpful station staff offered to ring him - but I couldn't remember the number. I did have it in my bag but was so tired cold and still wet I couldn't remember it. They ordered a taxi for me and I eventually arrived home at 8.30 pm
Fight on.
AS meetings
the whole idea of what Shelagh talks about and there being an AS meeting, created the picture in my head of an empty hall because no-one had remembered to turn up.
sorry it seemed funny to me.
wayne
ps all of this seems to be underlined on my screen and I have no idea why. maybe the pc is joining everyone else and not understanding what I am trying to say lol
the whole idea of what Shelagh talks about and there being an AS meeting, created the picture in my head of an empty hall because no-one had remembered to turn up.
sorry it seemed funny to me.
wayne
ps all of this seems to be underlined on my screen and I have no idea why. maybe the pc is joining everyone else and not understanding what I am trying to say lol
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