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Dementia’s journey

Dutchman

Registered User
May 26, 2017
763
Devon
I couldn’t help myself. i phoned the home today and Bridge is fine.

Im finding it strange that because i’ve lots to think about my self care, practical and the mental bit, i’ve less time to think about Bridget. i agree that it’s my time now because i’ve got to make a full recovery for both our sakes. i have no choice really as i’m pretty wacked out anyway and find a lot of the time i just want to sleep.

I’ll keep putting down a few thoughts now and again.

Bless you all

peter
 

Dutchman

Registered User
May 26, 2017
763
Devon
not quite sure what to do with myself. Im looking at loads of mindless movies, sleeping and generally lethargic. no wonder i don’t sleep at night. it’s interesting how you’re perspective on priorities changes when you’re not feeling well. Bridget is cared for but, of course, in an ideal world she‘d be fussing over me and doing all the practical stuff. She was great at that.

Now i’m just glad she doesn’t have these matters to worry her.

good night


peter
 

Wifenotcarer

Registered User
Mar 11, 2018
309
Central Scotland
Yes Peter. It is one of the benefits?? of having Dementia that you have no worries and recent dire events are simply forgotten. OH has no recollection of having been to Hospital at an ungodly hour with a suspected stroke, being given a battery of tests, including a brain scan and returned to Care Home. He has returned to his usual humorous self, albeit suddenly looking much older, while I am wracked with worry and scared to move 2 metres away from the phone. Our annual whole family holiday to the Western Isles (middle fortnight of July) has been cancelled, rebooked for next year, but I have realised that I could not go anyway as It could take up to 24 hours or more (dependent on ferry or flight) to return home to be with OH in an emergency.

Sorry to put this on your thread, Peter. Just another example of the twists and turns of this Dementia journey.
 

Dutchman

Registered User
May 26, 2017
763
Devon
Bridget’s safe and well so what am i concerned about? i’m concerned the way my emotions for her have lessened cos i’ve got my own practical and emotional stuff.

i suppose once i feel more normal i’ll fret over her. She may not remember me of course but it doesn’t matter, i still love her to bits.

peter
 

Herecomestrouble

Registered User
Dec 11, 2018
24
Bridget’s safe and well so what am i concerned about? i’m concerned the way my emotions for her have lessened cos i’ve got my own practical and emotional stuff.

i suppose once i feel more normal i’ll fret over her. She may not remember me of course but it doesn’t matter, i still love her to bits.

peter
After another too early start tot he day I came on to TP to look for comfort I guess, and have been reading this thread. Wow! What heroes and heroines you are, though that is the last that any of you feel, and in fact engage more in self torture and abuse. There is so much I would like to say/ respond/ share but it has all been said before and better by others. I would however like to share something I wrote a few weeks ago, when I couldn’t stop crying, for the myriad of complicated and convoluted reasons that we wives/ husbands/ partners/ whoever cry when our nearest and dearest have dementia...

Tears flow
From untapped oceans of grief,
Cascading down the rock face,
Eroding a path,
Wearing away,
Smoothing down.
Endless supply
From a source unknown,
Too deeply buried, hidden
To be seen
Until, after millennia,
The layers are worn away,
One by one
Like Aslan’s claw.

It is futile to resist,
To try to dam the flow,
To stem the tide.
It will break through.
Relentlessly,
Regardlessly,
Repeatedly,
Until surrender is the only option.
And there is a peace in that.
A calm from ceasing to resist,
From not resisting,
From accepting,
From “ going with the flow”,
As they say.
They who have experienced little more than a summer shower.

Being swept downstream
Over rapids and falls,
Through calm pools,
Across flood plains
Towards the ocean
Where one’s tears meet those
Wept over centuries
Of war, famine, disease, disaster,
Of loss , betrayal, death, pain,
Of being human.

Cry then.
Tears of rage,
Tears of grief,
Tears of sadness,
Tears of frustration,
Tears of uncertainty and confusion,
Tears of knowing and not knowing,
Tears of helplessness,
Tears of hopelessness,
Tears
Tears
Tears.

The facade so carefully assembled
Begins to crumble
And Is seen for what it really is.
A mask, a pretence, a disguise,
An attempt to give others what they seek,
To avoid disturbing, unsettling.
To keep the peace
And to pre-empt the predictable cliches of sympathy, encouragement and advice,
Which fall on deaf ears because it has all been heard before
And means no more now than it did then.
Best do without,
Or seek out those who know,
Those who have been there,
Those who are there.
Those with whom you can laugh through the tears
And cry through the laughter,
To whom anything can be said
And thoughts and feelings shared,
Bringing relief and comfort
And companionship on the journey.
You are not alone.

HCT x
 

Dutchman

Registered User
May 26, 2017
763
Devon
hello everyone. Well l’m up and had breakfast. I suppose that posts will be about how the impact of my surgery has had an effect on my emotions about Bridget.

Of course I’m feeling pretty low and concerned all will be well. I looked at a video of a guy who’d had the op and his wife was there to support him. Great, isn’t it a blessing when you have you loved one there to do all the support no matter what, just to say regularly how yoU feeling. And coming back to an empty house isn’t pleasant.

That’s what upsets me now the fact that %+=*&£#@@ dementia has robbed me of my loving support . Good job I can cook and do the clothes washing.

My love, my love I’m so glad you’re settled and safe and away from all this Covid and worry about me. See you soon I hope. All my love

Peter
 

Dutchman

Registered User
May 26, 2017
763
Devon
After another too early start tot he day I came on to TP to look for comfort I guess, and have been reading this thread. Wow! What heroes and heroines you are, though that is the last that any of you feel, and in fact engage more in self torture and abuse. There is so much I would like to say/ respond/ share but it has all been said before and better by others. I would however like to share something I wrote a few weeks ago, when I couldn’t stop crying, for the myriad of complicated and convoluted reasons that we wives/ husbands/ partners/ whoever cry when our nearest and dearest have dementia...

Tears flow
From untapped oceans of grief,
Cascading down the rock face,
Eroding a path,
Wearing away,
Smoothing down.
Endless supply
From a source unknown,
Too deeply buried, hidden
To be seen
Until, after millennia,
The layers are worn away,
One by one
Like Aslan’s claw.

It is futile to resist,
To try to dam the flow,
To stem the tide.
It will break through.
Relentlessly,
Regardlessly,
Repeatedly,
Until surrender is the only option.
And there is a peace in that.
A calm from ceasing to resist,
From not resisting,
From accepting,
From “ going with the flow”,
As they say.
They who have experienced little more than a summer shower.

Being swept downstream
Over rapids and falls,
Through calm pools,
Across flood plains
Towards the ocean
Where one’s tears meet those
Wept over centuries
Of war, famine, disease, disaster,
Of loss , betrayal, death, pain,
Of being human.

Cry then.
Tears of rage,
Tears of grief,
Tears of sadness,
Tears of frustration,
Tears of uncertainty and confusion,
Tears of knowing and not knowing,
Tears of helplessness,
Tears of hopelessness,
Tears
Tears
Tears.

The facade so carefully assembled
Begins to crumble
And Is seen for what it really is.
A mask, a pretence, a disguise,
An attempt to give others what they seek,
To avoid disturbing, unsettling.
To keep the peace
And to pre-empt the predictable cliches of sympathy, encouragement and advice,
Which fall on deaf ears because it has all been heard before
And means no more now than it did then.
Best do without,
Or seek out those who know,
Those who have been there,
Those who are there.
Those with whom you can laugh through the tears
And cry through the laughter,
To whom anything can be said
And thoughts and feelings shared,
Bringing relief and comfort
And companionship on the journey.
You are not alone.

HCT x
Thanks so much for your thoughts. Great poem.
You’re right we’re not alone

Peter
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
After another too early start tot he day I came on to TP to look for comfort I guess, and have been reading this thread. Wow! What heroes and heroines you are, though that is the last that any of you feel, and in fact engage more in self torture and abuse. There is so much I would like to say/ respond/ share but it has all been said before and better by others. I would however like to share something I wrote a few weeks ago, when I couldn’t stop crying, for the myriad of complicated and convoluted reasons that we wives/ husbands/ partners/ whoever cry when our nearest and dearest have dementia...

Tears flow
From untapped oceans of grief,
Cascading down the rock face,
Eroding a path,
Wearing away,
Smoothing down.
Endless supply
From a source unknown,
Too deeply buried, hidden
To be seen
Until, after millennia,
The layers are worn away,
One by one
Like Aslan’s claw.

It is futile to resist,
To try to dam the flow,
To stem the tide.
It will break through.
Relentlessly,
Regardlessly,
Repeatedly,
Until surrender is the only option.
And there is a peace in that.
A calm from ceasing to resist,
From not resisting,
From accepting,
From “ going with the flow”,
As they say.
They who have experienced little more than a summer shower.

Being swept downstream
Over rapids and falls,
Through calm pools,
Across flood plains
Towards the ocean
Where one’s tears meet those
Wept over centuries
Of war, famine, disease, disaster,
Of loss , betrayal, death, pain,
Of being human.

Cry then.
Tears of rage,
Tears of grief,
Tears of sadness,
Tears of frustration,
Tears of uncertainty and confusion,
Tears of knowing and not knowing,
Tears of helplessness,
Tears of hopelessness,
Tears
Tears
Tears.

The facade so carefully assembled
Begins to crumble
And Is seen for what it really is.
A mask, a pretence, a disguise,
An attempt to give others what they seek,
To avoid disturbing, unsettling.
To keep the peace
And to pre-empt the predictable cliches of sympathy, encouragement and advice,
Which fall on deaf ears because it has all been heard before
And means no more now than it did then.
Best do without,
Or seek out those who know,
Those who have been there,
Those who are there.
Those with whom you can laugh through the tears
And cry through the laughter,
To whom anything can be said
And thoughts and feelings shared,
Bringing relief and comfort
And companionship on the journey.
You are not alone.

HCT x
What an inspiring piece and it brought it all back to me! It takes a lot out of you to put it down but it’s a release for a bit. I have been feeling guilty for the respite break I had to go and see our daughter only two weeks before he died. I think if I had just stayed at home he wouldn’t have died. I have to think it through carefully. No he may not have died then but it was inevitable and would have come before much longer. How we cry, how we beat ourselves up, and we should not. We are human and sharing our thoughts here is a way of breaking that internal thought process that can be destructive. Keep on keeping on @Dutchman as you are so bravely doing with tears and smiles, Sue 😥:)
 

Dutchman

Registered User
May 26, 2017
763
Devon
Thanks Sue. I spoke to Bridge on the care home phone this evening and after I said it’s Peter, I love you, she said clearly, that’s nice. It got a bit muddled after that.

of course, realistically, our loved ones are looked after and cared for and I believe Bridget is as content as is humanly possible. But we add our imagination to the situation and think that they miss us and there’s a small degree of our old loves left, even though we’ve had it explained time and time again that probably there’s very little memory left ( that’s my feeling).

I torture myself thinking how it could have been, looking after each other, caring because we love them.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
61
Hi, I am getting quite down not being able to visit, Dave has deteriorated in these 3 months since my las visit, I find it all just one big head **** , glad your on the mend Peter. X
 

Dutchman

Registered User
May 26, 2017
763
Devon
Hi Sue,,

It’s so frustration and cruel that we can’t go and hug them, hold their hand , whisper in their ear. I’m assuming that you can visit but not go inside. Do you want to see him through the window? Is that possible or too heartbreaking?

I spoke to my brother in law ( Bridget’s brother) this morning. He wanted to see how I was doing and check on Bridge. He’s not one for much emotion and is very straightforward about things. He was a scientist and sees the world very much so in black and white.

But something he said touched a nerve. He thinks that Bridget is a different person now and lives in a world completely separate from me. I don’t know what she thinks all day and even the professionals take a guess at it. I only hope they’re not unsettling thoughts.

And what I do, as I believe a lot of us do, is try to hold on to the last remnant of my old love, and that’s the torture, that’s the impossiblity of it all. The sliding away cannot be stopping but I refuse to accept it and grasp at anything, and there’s very little there. The closeness has gone.

Thanks Sue

peter
 

Stacey sue

Registered User
Jan 24, 2020
61
I am sad today because as you say you hang on to what you have loved and lost.It is hard because I can’t see it ,and the memories are all there for me.. I can’t see him through a window,just the hard going one sided telephone conversation. I know he isn’t the man he was, and he is in his own little world, but I just can’t let go. I think his deterioration was so so quick that I am in denial and shock. . Thankyou as always for your support, II am sure that my family are bored with me and this!! X
 

Dutchman

Registered User
May 26, 2017
763
Devon
So what your family might be bored. They’re not going this and let’s hope they never will.

That’s why we need each other

peter
 

Dutchman

Registered User
May 26, 2017
763
Devon
Sorry Sue about your thoughts of your family. I was a bit harsh there.. But this is such an horrendous thing we’re going through I think we’re allowed any behaviour relating to our sadness.

im sitting here not wanting to go to bed as I have such dreadful upsetting dreams about Bridget. And so vivid.

As for my support, you can post me anytime with literally anything you want to unload. Im probably experiencing the same. I think I would have gone under without everyone on the forum.

love from Peter
 

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
Thanks Sue. I spoke to Bridge on the care home phone this evening and after I said it’s Peter, I love you, she said clearly, that’s nice.
My own feeling is that in that moment that is what she feels, because my husband knew it too and he used to say he loved me and I could say so do I too. I don’t know if it’s always the case, but the mind can pick out lucid moments I believe from experience, before the fog comes down again. It makes me cry to think of this but that’s alright, if one can’t cry at these heart rending moments, there is something wrong. That does not mean that I cannot feel happiness now and I try to think of three things I am grateful for each day. It’s not always easy but it does make you feel better. small things are good enough. Today for example I wanted to listen to some music and wanted something different, I searched randomly and came across beautiful harp playing which is so soothing I feel comforted while writing this post. Keep well and think of her love for you even though she is so ill in her mind x
 

Dutchman

Registered User
May 26, 2017
763
Devon
Please forgive me before I even start. I’m feeling extremely upset about my lack of recognition of Bridget’s struggles and being so self centred during her last months here at home.

And I know some would question why I need to criticise myself so harshly. But I do.

Im still sleeping in the second bedroom. Our main bedroom hasn’t been used since she left. I felt I could be close to her if I just laid on her side of the main bed, just to see what she would have seen. She was going to bed early, about 4/5 o’clock in the afternoon and pleaded with me to join her. I said no it’s far too early. And anyway, by that time she was wearing the same clothes and no personal washing for weeks.

But while I lay there I realised how lonely she must have felt and how much she needed me and I wasn’t prepared to compromise. She must have felt really unhappy and I was too wrapped up in myself to see it. And then I realise that in those last months and weeks I was perpetually complaining about her, struggling to meet her random demands.

All in all, I failed. None of us want a second go at this but if I had a second chance then I hope I would have more empathy, sympathy and kindness. Now she’s quite content in the home, I’m told, but it grips me tightly that there’s no going back and no way of explaining to her that she would understand of how sorry I am for what I did or didn’t do.

I just had to get this out. And I don’t know if it helps.

love to you all

peter
 

Batsue

Registered User
Nov 4, 2014
4,887
Scotland
You have no need to beat yourself up, you are looking back and forgetting how difficult it was to maintain empathy when faced with the situation you found yourself in. Please try to be kind to yourself, your love for Bridget shines out.
 

LadyA

Registered User
Oct 19, 2009
13,630
Ireland
@Dutchman
I've not been on for quite a while, but do drop in now an dthen.

I can so totally understand how you feel. William is now almost 6 years dead, and I still get days when I feel quite down, because I feel I totally failed. I couldn't understand what was going on. And I agonise over every time I think I failed. But you know what? We can only work with what we have at the time. And I also recognise that I was so totally overwhelmed, that dementia was like a tsunami relentless in washing over us. It was, during that time, the very most I could do to keep my head above water, so I didn't drown in it. My head tells me that I couldn't have spent literally every moment with William, mentally, I couldn't have survived that. But my heart (or maybe it's not my heart? maybe it's just the guilt monster?) says that his demands weren't much to ask, in his condition. But they were. The demands of dementia asked everything, and more. It demanded what I just hadn't got.

You've done such an awe inspiring job of taking care of your wife over the years. But dementia is insatiable. Take care of yourself now. x
 

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