Silences

[JSpil]

My partner has vascular dementia and I’ve noticed more how he stares into space more regularly. He gets absorbed in his iPad and won’t speak for hours it’s very difficult to engage in conversation.. However if the phone rings and I’m speaking it’s as though he has to interrupt. We no longer watch the same things on TV as he is only interested in the same things several times over day after day … Were drifting apart when we should be together …
Just good friends really

 

[Agzy]

We too are entering this stage and made worse in some respects when we have visitors who just talk to me and show thier discomfort at the way they are ignored or just stared at. Not always but enough so as to be noticed and noted. Makes live lonely 😞

 

[Chizz]

Hi @JSpil
Yes, you start to live together apart.

Yes its lonely and v painful.

Being doing it for some while now. He's a poem a wrote about this nearly a year ago!



Together Apart



In our bedroom, a wedding photo in a frame upon the wall,

She holds me tightly, eyes smiling, joyful. It really says it all!



We were together then, didn’t think we could be more aligned,

But over the months and years, we’ve become ever more entwined.



The clock alarm wakes me, weather forecast, what the headlines say,

Quick. The bathroom. Shave shower dress. Then downstairs to start the day.



I put the dining room light on, say hello and kiss her face.

“How yer doin’”, the carers say. Personal care is their place.



Breakfast cereal conceals split pills. The first lie of the day.

Cup of tea, a sort of chat, then select what music to play.



Cooking, toilets, washing and cleaning are my every day,

Magazines to discard, tv programmes to heckle – her way.



Don’t know exactly when dementia came, to drag us apart,

It’s odd really, affects her brain, because it affects my heart.



Memories of sun bright carefree times; the change has been quite stark.

We thought the sunlight would continue, but now we’re in the dark.



Everyone has their own story to tell, so it’s been said

Now I am guardian of her tale, her voice locked in her head.



Breakfast cereal conceals split pills. The last lie of the day.

Lower bed, tidy the covers, kiss her cheek, “Good Night” I say.



So on my own I go upstairs to a bedroom, no sweetheart,

Now we are two; I never thought we would be so far apart.



In her bedroom she can’t always sleep the night, so my name she calls,

She grabs me tightly, my eyes cry, fearful. It really says it all!


By Chizz

Apr23

©

 

[Anthoula]

Sad, so very sad.

 

[JSpil]

Hi @JSpil
Yes, you start to live together apart.

Yes its lonely and v painful.

Being doing it for some while now. He's a poem a wrote about this nearly a year ago!



Together Apart



In our bedroom, a wedding photo in a frame upon the wall,

She holds me tightly, eyes smiling, joyful. It really says it all!



We were together then, didn’t think we could be more aligned,

But over the months and years, we’ve become ever more entwined.



The clock alarm wakes me, weather forecast, what the headlines say,

Quick. The bathroom. Shave shower dress. Then downstairs to start the day.



I put the dining room light on, say hello and kiss her face.

“How yer doin’”, the carers say. Personal care is their place.



Breakfast cereal conceals split pills. The first lie of the day.

Cup of tea, a sort of chat, then select what music to play.



Cooking, toilets, washing and cleaning are my every day,

Magazines to discard, tv programmes to heckle – her way.



Don’t know exactly when dementia came, to drag us apart,

It’s odd really, affects her brain, because it affects my heart.



Memories of sun bright carefree times; the change has been quite stark.

We thought the sunlight would continue, but now we’re in the dark.



Everyone has their own story to tell, so it’s been said

Now I am guardian of her tale, her voice locked in her head.



Breakfast cereal conceals split pills. The last lie of the day.

Lower bed, tidy the covers, kiss her cheek, “Good Night” I say.



So on my own I go upstairs to a bedroom, no sweetheart,

Now we are two; I never thought we would be so far apart.



In her bedroom she can’t always sleep the night, so my name she calls,

She grabs me tightly, my eyes cry, fearful. It really says it all!


By Chizz

Apr23

©

That’s beautiful x

 

[Red Riding Hood]

That's beautiful, and so moving, @Chizz. You have a wonderful way of describing the day to day for so many of us here. Living together, apart - that's exactly how it is! It's so strange, as some days we just about manage to take it all in our stride and think we're "almost" coping. Then other days, oh dear! We notice every spill, tremor, confused look, scared expression and cry for help - or denial that help is needed. Every struggle to do what used to be a simple thing, every frustration, delusion and withdrawn, detached gaze. And each of these observations breaks our hearts all over again. It's like suffering a fresh bereavement, over and over continually. Groundhog days, I call these. We're stuck in the routine, the same struggles, and the same feeling of being so sad, but not allowed to express this. We have to keep moving forward - but forward towards what?? Ahead of us are so many more terrible things waiting to break our spirits.

Silence can be deafening, sometimes.

 

[Chizz]

That's beautiful, and so moving, @Chizz. You have a wonderful way of describing the day to day for so many of us here. Living together, apart - that's exactly how it is! It's so strange, as some days we just about manage to take it all in our stride and think we're "almost" coping. Then other days, oh dear! We notice every spill, tremor, confused look, scared expression and cry for help - or denial that help is needed. Every struggle to do what used to be a simple thing, every frustration, delusion and withdrawn, detached gaze. And each of these observations breaks our hearts all over again. It's like suffering a fresh bereavement, over and over continually. Groundhog days, I call these. We're stuck in the routine, the same struggles, and the same feeling of being so sad, but not allowed to express this. We have to keep moving forward - but forward towards what?? Ahead of us are so many more terrible things waiting to break our spirits.

Silence can be deafening, sometimes.

thank you @Red Riding Hood
Knowing there's an army of hidden people caring for loved ones is a bolster sometimes. And sometimes it's v sad as well that society values carers so little.

 

[Angela61]

Hi @JSpil
Yes, you start to live together apart.

Yes its lonely and v painful.

Being doing it for some while now. He's a poem a wrote about this nearly a year ago!



Together Apart



In our bedroom, a wedding photo in a frame upon the wall,

She holds me tightly, eyes smiling, joyful. It really says it all!



We were together then, didn’t think we could be more aligned,

But over the months and years, we’ve become ever more entwined.



The clock alarm wakes me, weather forecast, what the headlines say,

Quick. The bathroom. Shave shower dress. Then downstairs to start the day.



I put the dining room light on, say hello and kiss her face.

“How yer doin’”, the carers say. Personal care is their place.



Breakfast cereal conceals split pills. The first lie of the day.

Cup of tea, a sort of chat, then select what music to play.



Cooking, toilets, washing and cleaning are my every day,

Magazines to discard, tv programmes to heckle – her way.



Don’t know exactly when dementia came, to drag us apart,

It’s odd really, affects her brain, because it affects my heart.



Memories of sun bright carefree times; the change has been quite stark.

We thought the sunlight would continue, but now we’re in the dark.



Everyone has their own story to tell, so it’s been said

Now I am guardian of her tale, her voice locked in her head.



Breakfast cereal conceals split pills. The last lie of the day.

Lower bed, tidy the covers, kiss her cheek, “Good Night” I say.



So on my own I go upstairs to a bedroom, no sweetheart,

Now we are two; I never thought we would be so far apart.



In her bedroom she can’t always sleep the night, so my name she calls,

She grabs me tightly, my eyes cry, fearful. It really says it all!


By Chizz

Apr23

©

So well put Chizz

 

[GillP]

I recall those days, those events and those feelings well. It is hard but I’d swap apart for together apart in a heartbeat.

 

[Chizz]

I recall those days, those events and those feelings well. It is hard but I’d swap apart for together apart in a heartbeat.

Sorry @GillP if I've caused any stress to you in your current position. Not intended.

 

[jennifer1967]

my husband does the same and zones out as i call it. he too will listen to tv but not hear me talking to him. like he can only do one thing at a time. he also closes his eyes when hes had enough but the kids have got used to that now and just carry on. i think it changes and i do other things while hes watching rubbish tv.

 

[GillP]

Sorry @GillP if I've caused any stress to you in your current position. Not intended.

Oh @Chizz , thank you so much for your concern. It is appreciated. However you really have not caused any stress whatsoever and I am sorry that I made you feel that. I have read enough of your posts to know that you always speak from a good place. I was just trying to state that even in the silence there is togetherness. Maybe I am looking back with rose tinted glasses. But I also know that James’s condition at that stage was ok as in the silence there was something. Later the deterioration was such that the end was a release for him as he was no longer suffering and for me as I was not witnessing it.

Your poem is honest and poignant and beautifully written.

 

[Mobbin17]

Hi @JSpil
Yes, you start to live together apart.

Yes its lonely and v painful.

Being doing it for some while now. He's a poem a wrote about this nearly a year ago!



Together Apart



In our bedroom, a wedding photo in a frame upon the wall,

She holds me tightly, eyes smiling, joyful. It really says it all!



We were together then, didn’t think we could be more aligned,

But over the months and years, we’ve become ever more entwined.



The clock alarm wakes me, weather forecast, what the headlines say,

Quick. The bathroom. Shave shower dress. Then downstairs to start the day.



I put the dining room light on, say hello and kiss her face.

“How yer doin’”, the carers say. Personal care is their place.



Breakfast cereal conceals split pills. The first lie of the day.

Cup of tea, a sort of chat, then select what music to play.



Cooking, toilets, washing and cleaning are my every day,

Magazines to discard, tv programmes to heckle – her way.



Don’t know exactly when dementia came, to drag us apart,

It’s odd really, affects her brain, because it affects my heart.



Memories of sun bright carefree times; the change has been quite stark.

We thought the sunlight would continue, but now we’re in the dark.



Everyone has their own story to tell, so it’s been said

Now I am guardian of her tale, her voice locked in her head.



Breakfast cereal conceals split pills. The last lie of the day.

Lower bed, tidy the covers, kiss her cheek, “Good Night” I say.



So on my own I go upstairs to a bedroom, no sweetheart,

Now we are two; I never thought we would be so far apart.



In her bedroom she can’t always sleep the night, so my name she calls,

She grabs me tightly, my eyes cry, fearful. It really says it all!


By Chizz

Apr23

©

What an incredibly beautiful and heartbreakingly sad poem . Did it help to write like this ? If you can , write some more . You are indeed gifted x

 

[giuliadevivo]

I married my husband because I love him. This path wasn’t one we chose. Yet there never is a time when I feel we are apart. I check TV programmes for him before he watches them and then we wach them together. I don’t allow guests who will not take a primary interest in him. I always make sure he feels at ease. I wake up in the middle of the night to paint, but keep an eye on him with our camera. If I notice he is awake or restless I join him bab in bed.

 

[Svenson]

I am so lonely, it is breaking my heart and I am desperate. My wife has Alzheimers, and is physically good but we are so far apart. She has hallucinations that her deceased parents and brother are still alive and in the house, talking to them preparing food for them, as well as having several cuddly toys she thinks are alive, talking to them all day and putting out dishes of food. They even sleep with her [no room for me] and is relatively happy, but has little thought for me although I do everything neccessary in running the house , cooking, etc etc.
I am no spring chicken, and I realise it is the disease not my wife responsible for her actions, but this is cold comfort to my existence, and I wonder where it will end, or at times wish it would end.

 

[Izzy]

Welcome to the forum @Svenson and @giuliadevivo

. I’m so sorry to read about your situations. . It really is a heartbreaking disease. I hope you both find some comfort and support through being part of this forum.

 

[KayRich]

Watching the same TV programmes over and over really resonates, currently it is Harry Potter, a couple of weeks back it was WW2 films repeated. It’s hard not to get fed up

 

[sarahforber]

My mum is front temporal. We’re lucky in the fact she isn’t violet when she should be. But unlucky as she’s the complete opposite she’s mute, vacant a total shell, no communication what so ever hasn’t known us for 4 years now and mute for 3 years. Stares into space and won’t even give eye contact there is nothing left . it’s so sad and doesn’t get any better unfortunately we’re all in this together x

 

[deborahh]

I'm in the same boat. Together apart. Lonely making.

 

[Chizz]

I married my husband because I love him. This path wasn’t one we chose. Yet there never is a time when I feel we are apart. I check TV programmes for him before he watches them and then we wach them together. I don’t allow guests who will not take a primary interest in him. I always make sure he feels at ease. I wake up in the middle of the night to paint, but keep an eye on him with our camera. If I notice he is awake or restless I join him bab in bed.

Hi @giuliadevivo - that's a lovely post.

My OH is part of me, and I am me because of her, which is not surprising after 56 years together, but Alz's has taken her and she is a mere shadow of the person she was. We no longer have the common language that "old marrieds" have - you know, that look or that expression or that raised eyebrow that use to mean a myriad of things without words passing.
She can't follow TV programmes - images change too fast and speech too fast to process, but she likes nature pictures (Planet Earth III, Countryfile, etc) - so I watch and whilst she's facing the tv she's not really watching the programme as such. She hates violence or flashing lights/images. Shows she does take some things in.

I appreciate your painting may be therapeutic to and for you and personal. Would you want to share any of the paintings?