A life in the day of.........................
- Thread starter Grannie G
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Dear Sylvia,
I'm sorry, I didn't want to say anything to undermine a descision that had already been made.
That said, a year is a long time and possibly something in your experiences or the consultant's understnading of Dhiren's condition might have changed.
Without raising false hopes or making any plans at all, it might just be worth rasing it again to see if anything has changed.
Having read your posts on this thread regularly, perhaps I am just hoping that something can still be done to give you and Dhiren as many good days together as possible.
Take care,
Sandy
I'm sorry, I didn't want to say anything to undermine a descision that had already been made.
That said, a year is a long time and possibly something in your experiences or the consultant's understnading of Dhiren's condition might have changed.
Without raising false hopes or making any plans at all, it might just be worth rasing it again to see if anything has changed.
Having read your posts on this thread regularly, perhaps I am just hoping that something can still be done to give you and Dhiren as many good days together as possible.
Take care,
Sandy
Hi Sylvia,
Just wanted to say how much I value your contributions and the work of all moderators on TP. I read every day and apart from the practical information it also helps to see other views on things and also how people cope. It is amaing how support varies from one part of the country to the other.
Anyway wanted to wish you all the best and hope the Consultant's visit helps.
XX
Daddave - As you say Sylvia and many others on TP who care for partners seem to have very caring and unselfish relationships. This may not apply to all couples. It certainly did not apply in my family and the illness made an already bad situation worse. I am sorry that you have also had to deal with this. Best wishes.
Just wanted to say how much I value your contributions and the work of all moderators on TP. I read every day and apart from the practical information it also helps to see other views on things and also how people cope. It is amaing how support varies from one part of the country to the other.
Anyway wanted to wish you all the best and hope the Consultant's visit helps.
XX
Daddave - As you say Sylvia and many others on TP who care for partners seem to have very caring and unselfish relationships. This may not apply to all couples. It certainly did not apply in my family and the illness made an already bad situation worse. I am sorry that you have also had to deal with this. Best wishes.
Oh dear! Now we have word finding difficulties.............
Today;
D `They want to do it.`
S `What?`
D `You know the bad ones?`
S `Which bad ones?`
D `Who was it?`
S `Who was what?`
D `They made schools and hospitals and fairs.`
S `Are you talking about politicians?`
D `Not politics, hospitals and schools and fairs.`
S `Hospitals and schools are politics.`
D [impatient ] `You don`t know about these things. It`s not politics it`s fairs and games. We went to see them.`
S `Are you talking about the Olympics?`
D `That`s it. The Olympics.`
S `They were in China and are coming to London in 2012.`
D `And India is planning to bid for them too.`
And that`s what he wanted to tell me.
Two minutes later.......
D `What was the name of that thing again?`
S `The Olympics.`
D `That`s right. The Olympics. India wants the Olympics.`
Today;
D `They want to do it.`
S `What?`
D `You know the bad ones?`
S `Which bad ones?`
D `Who was it?`
S `Who was what?`
D `They made schools and hospitals and fairs.`
S `Are you talking about politicians?`
D `Not politics, hospitals and schools and fairs.`
S `Hospitals and schools are politics.`
D [impatient ] `You don`t know about these things. It`s not politics it`s fairs and games. We went to see them.`
S `Are you talking about the Olympics?`
D `That`s it. The Olympics.`
S `They were in China and are coming to London in 2012.`
D `And India is planning to bid for them too.`
And that`s what he wanted to tell me.
Two minutes later.......
D `What was the name of that thing again?`
S `The Olympics.`
D `That`s right. The Olympics. India wants the Olympics.`
Hi Sylvia
Its so hard when you see another decline happening. So sorry Dhiren is having trouble finding the right word.
One good thing, he still knew what he meant and what the right word was supposed to be when you answered his question.
Hope its a one-off and it doesnt happen again for a while.
Thinking of you both
Love
Janet
Its so hard when you see another decline happening. So sorry Dhiren is having trouble finding the right word.
One good thing, he still knew what he meant and what the right word was supposed to be when you answered his question.
Hope its a one-off and it doesnt happen again for a while.
Thinking of you both
Love
Janet
Hello Sylvia...Eric has been losing words for quite some time...
The most recent one this week...Out of the blue he asked...
"what's that shelf thing we take outside to cook food on?"
Eventually I twigged he meant a barbecue.
He pestered me for 2 days with the same question...sometimes phrased differently.
Now he remembers the word "barbecue"...and is throwing it into every sentence he can.....always daft and inappropriate...even using it as a surname for people...ie:...She's Fiona Barbecue...
That wouldn't be a barbecue....you couldn't take a barbecue in there...etc. etc.
But he's very pleased with himself that he remembers the word..
It is sad...but I also find it fascinating the way the brain finds a way round explaining the word without using it.
One of my earliest recollections of this with Eric was the Brown Wheelie Bin...(for garden rubbish)...that became the tin where we put the vegetation.....very clever!!!
Hoping you and Dhiren have a good weekend...
love gigi xx
The most recent one this week...Out of the blue he asked...
"what's that shelf thing we take outside to cook food on?"
Eventually I twigged he meant a barbecue.
He pestered me for 2 days with the same question...sometimes phrased differently.
Now he remembers the word "barbecue"...and is throwing it into every sentence he can.....always daft and inappropriate...even using it as a surname for people...ie:...She's Fiona Barbecue...
That wouldn't be a barbecue....you couldn't take a barbecue in there...etc. etc.
But he's very pleased with himself that he remembers the word..
It is sad...but I also find it fascinating the way the brain finds a way round explaining the word without using it.
One of my earliest recollections of this with Eric was the Brown Wheelie Bin...(for garden rubbish)...that became the tin where we put the vegetation.....very clever!!!
Hoping you and Dhiren have a good weekend...
love gigi xx
With John everything was 'the thing'.
I remember one wheelie bin day, he told me he'd put the thing out. I said, 'Oh that's good, thank you', thinking he meant the bin.
Then he said, 'But I didn't put the things in'. I said, 'What things?'. He replied, 'You know, the metal things.'
I racked my brains for a long time trying to think what metal things needed to go in the wheelie bin. In the end, I asked him to show me.
What he meant was, he'd emptied the dishwasher, but hadn't put the cutlery away!
I remember one wheelie bin day, he told me he'd put the thing out. I said, 'Oh that's good, thank you', thinking he meant the bin.
Then he said, 'But I didn't put the things in'. I said, 'What things?'. He replied, 'You know, the metal things.'
I racked my brains for a long time trying to think what metal things needed to go in the wheelie bin. In the end, I asked him to show me.
What he meant was, he'd emptied the dishwasher, but hadn't put the cutlery away!
Ron is still awake
Amazing, but it means I am in for a long night.
I know the signs.
Did we do ??? long pause.
Forgot what he was going to say.
I know you think I am mad, but can you remove this metal from my hand. Repeat, repeat.
He clenches his fist, his finger nails dig in. He thinks it is metal digging in his hand.
I open his hand, show him nothing is there. It is then OK.
Till the next time
Never mind.
Barb XX
Amazing, but it means I am in for a long night.
I know the signs.
Did we do ??? long pause.
Forgot what he was going to say.
I know you think I am mad, but can you remove this metal from my hand. Repeat, repeat.
He clenches his fist, his finger nails dig in. He thinks it is metal digging in his hand.
I open his hand, show him nothing is there. It is then OK.
Till the next time
Never mind.
Barb XX
Sometimes I am overwhelmed with a feeling of deep sadness, and tonight is one of those times.
We have had a good day today and for that I am grateful. But what constitutes a good day?
We get up in the morning.
Go for the papers.
Have breakfast.
Tidy the house.
Have lunch.
Keep each other company.
Listen to the radio.
Watch television.
He asks questions.
I answer questions.
We make futile plans.
I potter about.
He sits in his chair.
He reads the paper, or perhaps he is just looking at the paper.
We have dinner.
We have sundowning.
We watch television.
We go to bed.
He is in bed now, asleep. I`m pleased he is asleep because I know he is sleeping peacefully. It is probably the only time he is peaceful. He is not confused. He is not afraid. He does not have a bad fuzzy head. He is peaceful unless his dreams disturb him.
His face is in repose. It is not tortured. It is not frowning. He does not look troubled.
I am still up. I am having some peace of my own, a quiet time. And tonight it is a time for reflection.
And tomorrow and the day after and the day after that will be more of the same. And if it`s a day free from conflict, free from too much confusion, free from accident, and the same as today, I will be grateful.
But at the same time I am filled with a deep sadness. And I know how many on Talking Point will be filled with the same sadness.
And I know many on Talking Point have no good days
We are not alone, but we are alone, alone as anyone can be.
And this is living with dementia.
We have had a good day today and for that I am grateful. But what constitutes a good day?
We get up in the morning.
Go for the papers.
Have breakfast.
Tidy the house.
Have lunch.
Keep each other company.
Listen to the radio.
Watch television.
He asks questions.
I answer questions.
We make futile plans.
I potter about.
He sits in his chair.
He reads the paper, or perhaps he is just looking at the paper.
We have dinner.
We have sundowning.
We watch television.
We go to bed.
He is in bed now, asleep. I`m pleased he is asleep because I know he is sleeping peacefully. It is probably the only time he is peaceful. He is not confused. He is not afraid. He does not have a bad fuzzy head. He is peaceful unless his dreams disturb him.
His face is in repose. It is not tortured. It is not frowning. He does not look troubled.
I am still up. I am having some peace of my own, a quiet time. And tonight it is a time for reflection.
And tomorrow and the day after and the day after that will be more of the same. And if it`s a day free from conflict, free from too much confusion, free from accident, and the same as today, I will be grateful.
But at the same time I am filled with a deep sadness. And I know how many on Talking Point will be filled with the same sadness.
And I know many on Talking Point have no good days
We are not alone, but we are alone, alone as anyone can be.
And this is living with dementia.
Hello Sylvia,
You were sounding very sad.....but your reflections are so accurate!
The sense of loss is never far away...
And reflection brings home to us not only how much our loved one's lives are shrinking...but how much our lives are shrinking too.
I do hope your sadness has passed..and that today brings you some joy......
love gigi xx
You were sounding very sad.....but your reflections are so accurate!
The sense of loss is never far away...
And reflection brings home to us not only how much our loved one's lives are shrinking...but how much our lives are shrinking too.
......we don't ask for much, do we?
I do hope your sadness has passed..and that today brings you some joy......
love gigi xx
Dear Sylvia
I think we can all relate to that sadness. It starts when the first symptoms appear, and we realise that part of our relationship is lost. And that parts will continue to be lost, for as long as it takes, until there is no relationship left.
TP is wonderful, but we are all still alone, because no-one can truly enter into our relationship, or our grief.
I can say to you, be glad of the quiet times, because I'd give anything to have them back. But I know that doesn't help, because when I was in your situation I also was sad that so much had been lost.
It's a long, long grieving process, and the end -- well, do we really want the end?
I'm sad with you.
Love and hugs,
I think we can all relate to that sadness. It starts when the first symptoms appear, and we realise that part of our relationship is lost. And that parts will continue to be lost, for as long as it takes, until there is no relationship left.
TP is wonderful, but we are all still alone, because no-one can truly enter into our relationship, or our grief.
I can say to you, be glad of the quiet times, because I'd give anything to have them back. But I know that doesn't help, because when I was in your situation I also was sad that so much had been lost.
It's a long, long grieving process, and the end -- well, do we really want the end?
I'm sad with you.
Love and hugs,
Dear Sylvia, your post moved me to tears when I logged on this morning.
My situation is not the same as yours, but in a strange way I feel your words encompass so much that is the journey we are all on.
Bless you. Do hope that today will be a peaceful one for you both.
My situation is not the same as yours, but in a strange way I feel your words encompass so much that is the journey we are all on.
Bless you. Do hope that today will be a peaceful one for you both.
Dear Sylvia
Sometimes it hits me too but the aloneness has definitely been alleviated by belonging to Talking Point. I used to love reflective times but now I've come to dread them. In my reflective times before, there was always a clearer future, a clearer possibility of change if necessary. Now I dread looking to the future and the possibilities of change are clouded by just trying to make a very difficult situation more bearable rather than change in order to live a fulfilled life.
My heart reaches out to you and I am glad for you that you are having good days.
Love
Sometimes it hits me too but the aloneness has definitely been alleviated by belonging to Talking Point. I used to love reflective times but now I've come to dread them. In my reflective times before, there was always a clearer future, a clearer possibility of change if necessary. Now I dread looking to the future and the possibilities of change are clouded by just trying to make a very difficult situation more bearable rather than change in order to live a fulfilled life.
My heart reaches out to you and I am glad for you that you are having good days.
Love
Dear Slyvia
Just to let you know I am thinking of you.
As you know we are treading the same path in much the same way our husbands seem to be going along at the same pace.
I too have been feeling low just lately, I think it must be the onset of winter and what it may bring, pre AZ my husband never liked winter and was always depressed so now things are worse.
Hope you feel better soon Sylvia
Much love Roseann x
Just to let you know I am thinking of you.
As you know we are treading the same path in much the same way our husbands seem to be going along at the same pace.
I too have been feeling low just lately, I think it must be the onset of winter and what it may bring, pre AZ my husband never liked winter and was always depressed so now things are worse.
Hope you feel better soon Sylvia
Much love Roseann x
Dear Sylvia
I think you have put into words the feelings of everyone who is watching a loved one go through this disease. It is so cruel, robs them of live before they are dead and robs us of all our hopes and dreams for the future. I feel so sad for everyone. I hope you are feeling better today.
I too have had a really bad weekend since the meeting on friday. I havent posted the details yet because I have been so upset. I will do as I think it is important for future sufferes.
Take care of you and Dhiren and hope today is better for you.
Lots of love
Janet
I think you have put into words the feelings of everyone who is watching a loved one go through this disease. It is so cruel, robs them of live before they are dead and robs us of all our hopes and dreams for the future. I feel so sad for everyone. I hope you are feeling better today.
I too have had a really bad weekend since the meeting on friday. I havent posted the details yet because I have been so upset. I will do as I think it is important for future sufferes.
Take care of you and Dhiren and hope today is better for you.
Lots of love
Janet
Thank you.
I`m all right now. We have to be don`t we.
My post was self indulgent, but it was good to have a place where I could acknowledge my feelings, knowing they are the shared feelings of many.
We have a lovely, and very special evening to look forwards to and I will post about it in due course. Last night was a night I should really have been quite buoyant, in anticipation of this evening, but whatever we try to do to make life better, sometimes there is no escape from reality.
Perhaps that`s what hit me so hard.
I`m all right now. We have to be don`t we.
My post was self indulgent, but it was good to have a place where I could acknowledge my feelings, knowing they are the shared feelings of many.
We have a lovely, and very special evening to look forwards to and I will post about it in due course. Last night was a night I should really have been quite buoyant, in anticipation of this evening, but whatever we try to do to make life better, sometimes there is no escape from reality.
Perhaps that`s what hit me so hard.
Hope you have had a lovely evening Sylvia
and tomorow afternoon(oops today) goes well with the consultant
hugs
and tomorow afternoon(oops today) goes well with the consultant
hugs
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