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Dementia’s journey

big l

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Aug 15, 2015
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I found it a very tough ask, but, as I said, I am lucky enough, that, at the moment I can cope at home with my lovely husband... My heart goes out to you every time I read your posts, perhaps because I see so much of you in me and I too, dread what happens next - and how I'll cope.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
What I will say is that I was unable to manage with Bridget at home. She just didn’t want to live here anymore, fought to get away, didn’t recognise me as her husband and was dreadfully unhappy. Now she is looked after well and, as you emphasise, safe.

I didn’t plan for her to leave on a date or time. She was trying to break windows to get out and I had to phone the care home to evaluate her and luckily they had a room there and then.
All the time you feel able to manage - do so. Love and care for as long as you can but not to the detriment of your own physical and mental health. The leaving in the end for me was unavoidable and I felt I was going mad with grief and I went into shock.

keep posting
 

Dutchman

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May 26, 2017
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Hello @big l and @blackmortimer .

It’s interesting what you say about seeking out sorrow. Does feel like that sometimes. It’s as though sorrow validates the amount of love I feel for her and to be happy dilutes it.

For instance, today I’m not visiting the home and I was quite looking forward to a day off. But that uneasy feeling of abandoning her is creeping back in, feeling guilty for having a day to myself while she has no freedom from dementia and is restricted to a chair, told what to do, has to submit to the regime of the home.

Now you could say that as a dementia sufferer the environment of the home is all she wants but I feel uneasy all the time seeing her like this. I know it’s the deterioration from a lively articulate woman to what she is now that upsets me, and I know the home is the best place for her, I know all this (and I wish I could come to terms with it)but when I’m lonely for her I forget the bad old dementia days here and long for her company.

And you’re right @big l I do need relief from the grief. I try to put things into perspective but I’m constantly reminded by wardrobes full of pretty clothes, cupboards full of shoes, her perfume and creams, hundreds of albums full of our pictures and she was writing a book so I have all of her jottings - her handwriting so precious and intimate in its form.

Now when I see her she tries so hard to communicate with noises and mixed up words which upsets me so. I feel so sorry for her because it must be upsetting for her as well.

Oh dear, just writing this gets me going with tears
 
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Jaded'n'faded

Registered User
Jan 23, 2019
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High Peak
Hello @big l and @blackmortimer .

It’s interesting what you say about seeking out sorrow. Does feel like that sometimes. It’s as though sorrow validates the amount of love I feel for her and to be happy dilutes it.

For instance, today I’m not visiting the home and I was quite looking forward to a day off. But that uneasy feeling of abandoning her is creeping back in, feeling guilty for having a day to myself while she has no freedom from dementia and is restricted to a chair, told what to do, has to submit to the regime of the home.

Now you could say that as a dementia sufferer the environment of the home is all she wants but I feel uneasy all the time seeing her like this. I know it’s the deterioration from a lively articulate woman to what she is now that upsets me, and I know the home is the best place for her, I know all this (and I wish I could come to terms with it)but when I’m lonely for her I forget the bad old dementia days here and long for her company.

And you’re right @big l I do need relief from the grief. I try to put things into perspective but I’m constantly reminded by wardrobes full of pretty clothes, cupboards full of shoes, her perfume and creams, hundreds of albums full of our pictures and she was writing a book so I have all of her jottings - her handwriting so precious and intimate in its form.

Now when I see her she tries so hard to communicate with noises and mixed up words which upsets me so. I feel so sorry for her because it must be upsetting for her as well.

Oh dear, just writing this gets me going with tears
I think there's definitely something in this. You feel guilt that B is in a care home and now you are on your own. When you feel sorrow it actually lessens the guilt somewhat because by being unhappy you are paying for what you see as your 'crime' against B. (Though there is no crime - dementia put B in the CH, not you.)

If you do things that make you happy, even if only momentarily, you feel more guilt because it seems wrong to be happy when B (as you see it) is not.

So in a way, more sorrow = less guilt. And more happiness = more guilt. A bit of a Catch 22.

(I could be completely wrong.)
 

Dutchman

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May 26, 2017
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Hello @Jaded'n'faded. I agree with the catch22 analogy. Whatever we do we can’t win.

I don’t know why it happens, and there’s no particular reason, but tonight I found myself thinking about all those times when I could have been more sympathetic and kind when she was here at home. If only I had appreciated then what it would feel like for her never to walk in this house again, never to sit on the sofa again, perhaps I would’ve treated her more softer and loved her more. Guilt and remorse again

I sometimes feel this will go on for ever. Is two years too long? How long is reasonable for this level of upset? I have counselling, I consume grief books, I volunteer at the home, I try my best to be sociable and try and be upbeat and I have a relationship with you all on The Forum. I’m not sure what else I can do?
Peterxx
 

kindred

Registered User
Apr 8, 2018
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Hello @Jaded'n'faded. I agree with the catch22 analogy. Whatever we do we can’t win.

I don’t know why it happens, and there’s no particular reason, but tonight I found myself thinking about all those times when I could have been more sympathetic and kind when she was here at home. If only I had appreciated then what it would feel like for her never to walk in this house again, never to sit on the sofa again, perhaps I would’ve treated her more softer and loved her more. Guilt and remorse again

I sometimes feel this will go on for ever. Is two years too long? How long is reasonable for this level of upset? I have counselling, I consume grief books, I volunteer at the home, I try my best to be sociable and try and be upbeat and I have a relationship with you all on The Forum. I’m not sure what else I can do?
Peterxx
I hope you realise how much we appreciate you. Kindredx
 

Stacey sue

Registered User
Jan 24, 2020
109
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Peter you mirror what a lot of us are feeling,quilt ,remorse, if only ?? I have exactly same battles in my head, I am so desperate to have him back that I constantly think I could look after him at home. I know I would selfishly be doing it for me, he is beyond that now. Few people understand what this is like living in the past really and not being to except life as it is now. I get comfort from reading your post because I am not alone. x
 

blackmortimer

Registered User
Jan 2, 2021
280
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I agree, @kindred ,@Stacey sue . I wish that @Dutchman would realise just what a service he is doing to all of us in articulating what we inevitably feel and giving us at least some comfort from knowing that we're not alone in feeling as we do. When I found thus forum some months ago now it was like a light being switched on. I was in a truly dark place, racked with guilt about Margaret being in a nursing home, wondering like you whether I shouldn't have made greater efforts etc etc and then I read this blog and realised (a) that I'm not at all alone, (b) that I couldn't possibly manage at home even if it were allowed and (c) that Margaret really is best where she is, looked after by people who care and know what they're doing.

So, @Dutchman, here's one struggling swimmer you've helped to reach the shore!
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Thanks for your replies everyone. I find no value in holding back with describing feelings I have. I’m pleased that anyone can emphasise with what I feel and it’s a comfort knowing that we’re sort of in this together. I dearly wish we didn’t have to go through these emotions but life had other ideas!

My church has been my support since Bridget went into the home and I’ve decided to get baptised this Sunday. I’ve prayed for you all constantly.

What remains uppermost in my mind was my inability to cope gently and compassionately with the dementia behaviour during those dreadful years of 2018/19. I can’t undo or put right anything now but shame and remorse remain when I remember the many times I just thought of myself and how I could live without Bridget.

Bridget hardly ever thought just of herself. She wasn’t particularly bothered by fancy stuff, never wanted flash holidays and concentrated on me and family. That’s why I think it’s doubly unfair that she ends up with dementia. And the one I really want to offer understanding, love and comfort in incapable of doing so.

If there was an operation that took part of my brain out and put it in Bridget to make her well I’d book it today. Is that an equal trade off? Would she suffer more than me if the position was reversed and it was me with dementia? She was a strong practical woman - I think she’d cope better.

peterxx
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Thanks for your replies everyone. I find no value in holding back with describing feelings I have. I’m pleased that anyone can emphasise with what I feel and it’s a comfort knowing that we’re sort of in this together. I dearly wish we didn’t have to go through these emotions but life had other ideas!

My church has been my support since Bridget went into the home and I’ve decided to get baptised this Sunday. I’ve prayed for you all constantly.

What remains uppermost in my mind was my inability to cope gently and compassionately with the dementia behaviour during those dreadful years of 2018/19. I can’t undo or put right anything now but shame and remorse remain when I remember the many times I just thought of myself and how I could live without Bridget.

Bridget hardly ever thought just of herself. She wasn’t particularly bothered by fancy stuff, never wanted flash holidays and concentrated on me and family. That’s why I think it’s doubly unfair that she ends up with dementia. And the one I really want to offer understanding, love and comfort in incapable of doing so.

If there was an operation that took part of my brain out and put it in Bridget to make her well I’d book it today. Is that an equal trade off? Would she suffer more than me if the position was reversed and it was me with dementia? She was a strong practical woman - I think she’d cope better.

peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I don’t know about you but I have times when all this impacts on me stronger than ever. At this moment is one of those times.

When she left here back in August 2019 it didn’t occur to me that afternoon that she’d never again, in all our 30 years together , be walking into the same room, be making a noise, being a presence in the house. I look across the room now and it’s never going to be filled with her body. And I now find it hard to imagine her just being here. Being on your own is great sometimes but we always knew we were around later.

I suppose it’s the finality of emptiness and that vacuum that’s not being filled by someone I thought would be there for ever. I look at the chimney breast and no one crosses my line of sight. No one returns from shopping and waves at me through the window. It’s enough to send you mad with longing.
 

Old Flopsy

Registered User
Sep 12, 2019
265
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Hi @Dutchman - I for one, log on every day to read your words, so loaded with emotion. You are helping so many of us with your wise words. I too look round the home and the enormity of the truth that he will never sit on this sofa again, never pat me on the back again as I sit at the computer, never enjoy the garden we tended together over 56 years- yes it's all too much some days. But with you writing every day, I know I am not alone. Thankyou.
 

Dutchman

Registered User
May 26, 2017
1,444
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73
Devon, Totnes
Thank you @Old Flopsy for those encouraging words. I’m currently waiting for my daughter as we’re about to go out on the river kayaking. It’s one hell of a distraction but I’m always nervous.

They tell me at the home that Bridget actually asked a question yesterday, yes a real sentence with real understandable words. Such golden moments.
Peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I’m sitting on the car in M & S car park and I can’t leave. I find I’m stuck.

I’ve driven along the same road that Bridget made me drive when looking for “me” at the nearby hospital. I sat in the car that day and shouted at her “I’m here, look at me, I’m your husband, I’m Peter” and banged my chest and cried and forced her to look at me. But it never made any difference. She just ignored me and said “please, I’ve got to find him, please help, you’ve got to”. She made me do that 4 times. I thought the stress and upset would kill me.

But for her I imagine it was agony loosing your husband. What did she think when we finally got home? To never find him, to know he’s gone. Where did she imagine he’d gone and why had he gone?

I think of these things constantly and feel wretched because I couldn’t help her or comfort her. I just lost it, shouted and cried and felt heartbroken for myself, just myself. Say these things to others and they say” it must have been terrible, poor you, she’s happier now”. But only those of us going through this minefield of feelings really know the bitter reality of these emotions.

peter
 

blackmortimer

Registered User
Jan 2, 2021
280
0
I remember similar situations well, @Dutchman . There were periods when she was still at home when Margaret would think that I was the cleaning lady (probably because I seemed to spend a lot of time with the hoover!) and would come into the kitchen and ask me about my husband and what he did and whether I had any children and so on. I tried at first to explain that I was her husband and not the hired help but eventually gave up and did my best to go along with the story that she was making up for herself. Then if I said the wrong thing , something I presume that didn't mesh with her internal narrative, she would get angry and tell me to go away - back to my "husband". So I know how traumatic these dementia episodes can be. But you really mustn't beat yourself up about it. Accept that the dementia patient lives in a different world, one that we can't enter and where we are effectively useless. The irony of it all is that we're the ones left with the guilt and the regrets all the "if only's" while they've probably forgotten ll about it.

For what it's worth, I try to avoid thinking about the dementia years by forcing myself to remember the good times, the happy moments. For instance I had sudden memory of when and where we first met the other day so I tried to think through everything that happened that day, where we were, who was there, exactly what the train of events was (it was literally an "across a crowded room" moment) and this brought back something of that thunderbolt effect followed by a warm glow which was cheering. But then that works for me; maybe not for everyone.

God bless
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
God bless @blackmortimer. Thank you as always for your kind and helpful words.

I wish I had your ability to reminisce gladly and with fondness at all the good times I’ve spent with Bridget the way you are able to do when you think of Margaret .

Unfortunately my memories make me unhappy because they reminded of what I’ve lost. Perhaps one day I’ll look back and smile.

Peter
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
How are we all today? It’s raining here, overcast and generally miserable weather 🌧😠.
I was thinking that wouldn’t it be nice if I could really believe that Bridget now lives in a world where she feels safe, cared for, doesn’t worry or long for things in the past and is more or less content.

And yes, it hurts when she doesn’t recognise me or can’t return the feelings of love I desperately try to show her. But I grit my teeth and smile and hide away the hurt I feel. If I can get her to smile back at me then that’s something isn’t it? It’s hard work pretending to be ok when I’m facing her and when I leave to come home.

I'm never going to say never but I think it unlikely that I could form a new relationship with another and them with me. My brains hard wired for Bridget and the memory of 30 years together. I’m married but separated by dementia and there’s no resolution to that, no relationship you can build on.
Peter
 

blackmortimer

Registered User
Jan 2, 2021
280
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Hello, @Dutchman . It's a bit damp here in the far east but warm and muggy so I've spent an hour or so putting in some bedding plants and sorting the hanging baskets that I sort of inherited from Margaret. Once upon a time she used to do the whole thing, then more recently she directed and I did (literally!) the spade work. In fact I've been a bit late this year so I'm relieved to have the bulk of the job done and it brings me happy memories.

Like you, I couldn't even think of a new relationship. It simply wouldn't work because Margaret's always there and I suspect always will be and frankly I wouldn't want it any other way, especially now that I've rewired my brain to think about the Margaret that was back in the day and to separate her from the Margaret with dementia for whom I still care for and worry about but with whom I can never have the same relationship.

The sun's coming out, so back to the garden!
God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
Just come back from the home after helping to feed Bridget. She helps herself with her fingers and picks up the food dripping with gravy. So what! At least she still loves her food.

She sort of looks past me and her attention is normally somewhere else so I have to divert her back to looking at me but I’m never sure what she sees. Can I ever know? Just wish there was something that created a spark of interest in our lives together but I fear that’s all gone now. I try photos, music, words but nothing registers. But to not try means I’ve given up and that’s not a place I want to accept.
peter