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Dementia’s journey

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I went to visit my daughter yesterday and they’d been invited to a neighbour’s birthday party and I was invited along. I was reluctant as I’m getting rubbish at social stuff like this. But I went anyway.

Its so strange being in company without Bridget. Fortunately no one asked about my circumstances so I didn’t make people feel uncomfortable. I forgot about Bridget off and on for 2 hours and felt a traitor, as if I’d abandoned her.

I’m told that Bridget would want me to be happy, to have fun, laugh, be jolly, but that easy feeling of happy contentment being together can’t be any more. I feel she’s there saying “ you’re lucky having freedom to do all this. I’m stuck in dementia, stuck in a home”.

I can either stay indoors and mope around or get out and do something. Either way it won’t make a difference to Bridget’s care and condition. In fact, if I deteriorate by neglecting myself then what good am I to Bridget?

Oh I don’t know, it’s such a awful emotional merry go round to be on.
 

jennifer1967

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Mar 15, 2020
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Southampton
if you isolate yourself, there may come a time when you will be afraid to go out. then the fear could take over and it will be harder to go out and visit Bridget. that would be awful. you dont have to be life and soul of the party but it might help to mix sometimes as a break from being on your own and so overwhelmed.
 

update2020

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Jan 2, 2020
57
0
I am finding a new social life with others like me. Once I get out there I find so many women who have lost their other halves, one way or another, by our stage of life. I particularly enjoy meeting other women in similar circumstances to me -because like you I have no headspace for a relationship with another man let alone a potential partner. I'm still very much married. Small furries are the future for me.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I feel nothing this morning. Why is that? I’m at a stage where Bridget is drifting away from me and I just can’t remember what our life was like before dementia took hold. Is it the brains way of coping? I feel so uneasy about feeling nothing - strange! I ought remain feeling sad and upset for her and my loss but I’m numb to it, like a beaten dog that no longer cares about the blows.

There’s this woman who shared my life and we knew everything about each other. Now she’s in a different world which I dip into. No matter how hard I try I can’t reach her or share any of her experiences.

Is this what happens when the brain has had enough?

Anyone else out there feel this?
 

kindred

Registered User
Apr 8, 2018
2,751
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I feel nothing this morning. Why is that? I’m at a stage where Bridget is drifting away from me and I just can’t remember what our life was like before dementia took hold. Is it the brains way of coping? I feel so uneasy about feeling nothing - strange! I ought remain feeling sad and upset for her and my loss but I’m numb to it, like a beaten dog that no longer cares about the blows.

There’s this woman who shared my life and we knew everything about each other. Now she’s in a different world which I dip into. No matter how hard I try I can’t reach her or share any of her experiences.

Is this what happens when the brain has had enough?

Anyone else out there feel this?
This happened to me too Peter. I think there gets to a point where the brain just can’t keep on reacting. You are having horrible time, all my sympathy. You are such a good man.
Kx
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Forget the last post as I’ve just looked at a photos when she was ok and sitting on the sofa that she’ll never sit on again, a photo of her cooking in our kitchen that she’ll never be in again. So many memories of ordinary life and ordinary talking that I’ll never hear again.

I’m in tears again. So it just takes a moment to change matters. Thought I’d be ok today. Why do I do this to myself, why look at photos, when I know it’s upsetting? It’s addictive as I can’t leave looking at our past life.
 

Andy54

Registered User
Sep 24, 2020
63
0
I too seem to swing between the feeling of emptiness of not being able to access D's current life or thoughts to looking at photos of better times and longing for a return to those moments. Can't seem to find any compromise between those extremes, the gap between the happier times and the present is just too great.
 

blackmortimer

Registered User
Jan 2, 2021
287
0
I think we are too ready in the modern psychobabble ridden world to use the word "addiction" to characterise almost anything and I'm not sure it's helpful. Memories serve a purpose; arguably they are part of what makes us human. We need them. So don't beat yourself up, Peter. If you need to look at old photos or recall times past, go ahead and indulge - back to my old Frank Sinatra quote "anything to get you through the night"!

I think the modern world is too ready to castigate us for dwelling on the past and to encourage us to stop it and find "new interests" or, God forbid, new relationships as though the past were some sort of affliction we should flee from. Another quote - "They are not long, the days of wine and roses". Those days won't return, nor arguably should we want them to, but there's nothing wrong in luxuriating in the memory of them as long as we accept that they can't be recreated and couldn't be even without the dementia. But then, as I've said before, I suppose we're all different.

God bless,
 

Dutchman

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May 26, 2017
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Devon, Totnes
Thank @blackmortimer @Andy54 and @kindred. Logically and realistically I know that dwelling on what can’t be upsets me and why would I do it if it upset me? Don’t make sense, right? But I’ve just come back from dragging myself to Morrison and I see Bridget in my mind on the pavement smiling walking towards me. I now I come indoors and I see her picture and I’m longing for her again.

I long for her when she was normal and I’m fed up just basically remembering the bad times. They are the strongest memories of course. But why wouldn’t I want to have the good times back when they were when we were both happy and contented? Why wouldn’t anyone want that? And that creates the hurt, the difference between the can have and the can’t have.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I’ve done something I’m ashamed of that I need to admit hopefully to those who just might understand.

I went to visit Bridget and before taking her into the dining room and while we were by ourselves I spoke to her about being on my own, lonely at home. I said “ why did you have to go and get dementia and forget me, I miss you so much, why did you leave me?” and I’m crying .

I sort of had a rant at her but, of course, all this meant nothing to her but she may have picked up on my tone of voice, accusing her. I feel so guilty for doing this but I needed to vent my hurt at her. Can you understand this?

Twelve months ago I asked myself a question. “ What is it going to be like like in 12 months time”. Well I’m still here but I anticipated being more settled than I am.

I could look for positives but I’m consumed by the longing for her and how I’m left to live this life on my own. I admit I’m lonely. I’ve never been lonely before because Bridget been always with me. Lonely means no one to share with, to cuddle up to, make plans with, to help tidy up, to say I love you, just be quiet together , to say “ see you later” and you do see them later, oh, and a trillion other things.

The company I have now is my cat lying next to me on my bed - yes I’m still in bed at 8.30 this morning.
Peter
 

None the Wiser

Registered User
Feb 3, 2020
243
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Hello @Dutchman, we are living in a kind of purgatory so it’s no wonder that from time to time we want to rant and rave. We are mourning the loss of the person and the life we had, and were going to have together. Because they‘re still alive there is no healing for us. When people talk to me about my husband I don’t recognise the person they are describing, as I‘m finding it hard to remember who he was when I’m now faced with someone who has the occasional similarity to him, but who is a stranger in so many ways.
The home my husband is in now has 4 cases of COVID so they’ve shut there doors to residents visits for a fortnight. I feel so excluded from his life, though when I can visit it’s torture too. Like you I feel as if I’m staggering around, bashing into myself. Even our children don’t really understand, they are distracted by their own lives.
The only thing we can do is ‘hold onto’ each other here.
 

Andy54

Registered User
Sep 24, 2020
63
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@Dutchman, I don't think you need to be ashamed of letting your feelings break through to the surface. I'm sure that the pre-dementia Bridget would have understood your emotions in the circumstances, and of course now if she had picked up on your tone it would have soon been forgotten. I' m sure most of us here have said similar things at some time, I know I certainly have.
 

blackmortimer

Registered User
Jan 2, 2021
287
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Bridget didn't leave you, @Dutchman. She was kidnapped by dementia. Keep that in mind. As @None the Wiser says, it's perfectly natural to want to rant and rage and of course you can't rant and rage at "dementia" only at its embodiment. I can remember getting really angry when Margaret was still at home and I was at the end of my tether, largely because I knew that I was getting out of my depth. That's when the guilt kicks in. You feel you should be able to cope but deep down you know that you can't.

I don't think Bridget will remember you being angry with her because if there is anything good about dementia it seems to be that the patient forgets what happened even a few minutes ago and presumably doesn't have the capacity to bear a grudge or blame someone else. So don't beat yourself up. Why not be extra nice to her next time you visit, take a present or something, then you'll feel better. In so many ways what matters is you.

PS glad to hear the cat is settling in.

God bless,
 

Dutchman

Registered User
May 26, 2017
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73
Devon, Totnes
I was talking to someone tonight who asked about Bridget and was taken by surprise when I said that Bridget doesn’t know me or speak anything that makes any sense. I too was surprised that they found it somewhat incomprehensible that Bridget was like she is.

I’ve got used to Bridget’s limitations over time. For others it’s a shock and they wonder how I cope when they doubt their capability to do the same. But we manage don’t we, and because we love we keep going.
 

Dutchman

Registered User
May 26, 2017
1,454
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73
Devon, Totnes
The majority of my posts don’t need a reply but I’m glad when you do. It’s mostly me getting things out, off my chest, putting into words what I feel.

Most days I feel a lack of purpose, like today. Apart from visiting Bridget during dinner time and helping her feed there little else that attracts my interest. There’s a feeling that I’m just treading water. Although, perhaps visiting her should be enough physically and emotionally for the day.

I’m encouraged to “do” things as diversions away from the sadness of losing Bridget. Do what? I simply return later to thinking about her. You’ve given me wise advice about not being hard on myself but I’m my worse enemy when it comes to judgement.

I was informed yesterday that I’ve got some health issues that need further investigation- scans and stuff. But, you know what, my emotions surrounding Bridget take away any concerns I may have over my own health. I suppose that’s something!

God bless you all. Peterx
 

kindred

Registered User
Apr 8, 2018
2,751
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The majority of my posts don’t need a reply but I’m glad when you do. It’s mostly me getting things out, off my chest, putting into words what I feel.

Most days I feel a lack of purpose, like today. Apart from visiting Bridget during dinner time and helping her feed there little else that attracts my interest. There’s a feeling that I’m just treading water. Although, perhaps visiting her should be enough physically and emotionally for the day.

I’m encouraged to “do” things as diversions away from the sadness of losing Bridget. Do what? I simply return later to thinking about her. You’ve given me wise advice about not being hard on myself but I’m my worse enemy when it comes to judgement.

I was informed yesterday that I’ve got some health issues that need further investigation- scans and stuff. But, you know what, my emotions surrounding Bridget take away any concerns I may have over my own health. I suppose that’s something!

God bless you all. Peterx
With you Peter. Yes, going to see Bridget is a huge thing each day and you probably don’t have much energy for distractions. Also you post on here which helps so many of us cope with our own grief. Thank you with all heart for what you do. Kx
 

jzw01

Registered User
Jun 12, 2021
127
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I read your posts with compassion and I'm sure there are many others who do as well. Keep posting!
 

update2020

Registered User
Jan 2, 2020
57
0
I read your posts with compassion and I'm sure there are many others who do as well. Keep posting!
Same here. We’re all in the same boat. @Dutchman Others often ask me ‘how my husband is’ or ‘hope’ he is ‘happy’ or ask ‘what he would like for his birthday’. They don’t understand and can only normalise it all to the conventions of polite conversation. I reply to all questions with exactly the same answer: “he’s in a good place” (true, the care home is excellent) and change the subject back to something about themselves. There’s only a couple of people who I could be really be honest with and who I feel could cope with the answer. So reading your posts is like looking in a mirror and having an honest conversation. Thank you.
 

Dutchman

Registered User
May 26, 2017
1,454
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73
Devon, Totnes
As all of you know our dementia world occupies us all the time. If it’s not worrying about our love one it’s our own sadness and grief that takes over. I honestly don’t have any time ( apart from sleep, and then I might have a disturbing dream about Bridget) when I don’t think about Bridget and me and how wretched it all is.

Others seeing it from afar cannot appreciate this and I suspect I’d be the same. Many, out of politeness rather than interest, ask after Bridget and, as you’ve said @update2020, I feel uncomfortable for them and try to change the subject. I suppose, because ill health, care homes, dementia and loneliness are all grim and gloomy subjects, people just don’t want to have any exposure to it, even if its just talking. And people don’t know how to talk about it and sometimes you don’t need talk just understanding quiet.

I could be wrong about this of course. Just my take on things
Peterx
 

blackmortimer

Registered User
Jan 2, 2021
287
0
I don't think you're wrong, @Dutchman . I find that people tend not to mention Margaret now and I'm grateful for that, to be honest. The only exception is my next door neighbours who, as fate would have it, happen to have an elderly relative who is in a nursing home with the same diagnosis as Margaret and whose behaviour has become very much like Margaret's. So they clearly understand and I can talk freely with them. But for the most part people are blind-sided when you mention that your wife is in a nursing home with fairly advanced dementia and clearly don't know what it's like for us. How could they? It's very much like bereavement in that people say the right things, look uncomfortable and it becomes a kindness if the bereaved move quickly on!

However, we can take comfort from the fact there are people here who really understand. You're not alone, Peter.

God bless,