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Dementia’s journey

Grahamstown

Registered User
Jan 12, 2018
1,710
80
East of England
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
I feel all that you are saying too. I couldn’t fulfil all his needs either. I think it’s a form of self preservation and it seems to me that you are continuing to do this by posting here all your self doubt and self recrimination. We never get it all right in life, but you lived and loved and finally lost her physical presence because she was too ill for you to continue. Perhaps you could try and recall things you did do right rather than dwell on things you feel you got wrong. Keep trying - Sue
 

Stacey sue

Registered User
Jan 24, 2020
61
I feel so lonely sometimes, I think I could care for him at home no matter what? and then I think if there was even a small part of him left in his head he could tell me he wants to come home?? That doesn’t happen!! why can’t I see this for what it is ? No one can relate to this unless you have lived it! I just want to turn back the clock!!! SSue x
 

Dutchman

Registered User
May 26, 2017
763
Devon
I feel so lonely sometimes, I think I could care for him at home no matter what? and then I think if there was even a small part of him left in his head he could tell me he wants to come home?? That doesn’t happen!! why can’t I see this for what it is ? No one can relate to this unless you have lived it! I just want to turn back the clock!!! SSue x
Oh Sue I’m sorry I can’t be much help. I, like you, believe I could cope with her being back here but that’s my heart not my head talking.

If it’s any help please remember how it was when he was at his worse at home. I got to the point where I thought I was living with a stranger. I tried to stop her behaviour by saying I was I’ll, I can’t take any more, I had to lock her in, I cried in front of her. Nothing I said made any difference.

It might not be nice but think of the bad times and imagine them again, right now, this minute back before a care home and how bad you felt. I’m very lonely but I can sleep without interruption, not worry about her meds, cleanliness, fights over clothes and washing and her abandonment of me as her husband. My darling couldn’t help any of this and I couldn’t cope.

Sue, try not to feel lonely. I’m always here for you.

Peterx
 

Stacey sue

Registered User
Jan 24, 2020
61
Thankyou.!! Yes he used to think I was his girlfriend,and ask if I was staying over? Then there was the money obsession, I seem to forget those times so easily, over the last few years there have been changes, and it’s like you get used to this new version? I am sure he isn’t lonely ,I hope not. SSue.
 

Dutchman

Registered User
May 26, 2017
763
Devon
I’m off to sleep now and I’m anxious because my dreams are so real and upsetting. Last night , in my dream, I went into the home and found her in bed , just her hair showing and I whispered Bridget and moved the cover over and got in beside her and pulled her close in my arms and it was warm and she smelled as she used to of just her warm body. I woke up.

I mean, how do I handle that? I don’t even get relief in sleep.
 

Dutchman

Registered User
May 26, 2017
763
Devon
I went to see Bridget for the first time in 10 days. As i can’t drive at the moment due to my operation my daughter Claire (Bridget’s step daughter) drove me and sat in the car.

Bridget was asleep in the lounge and she’s woken up and led to the window. Is it my imagination or has she lost more weight ? As soon as she saw me she brightend and i gave her flowers and fruit which she enjoys. I was a little shocked at her appearance. She said are you going now, blew kisses, waved goodbye.

I usually go back to the car and cry but i held back in front of Claire, i just couldn’t.
Later i phoned the home and they said she’s fine, happy, eating well. I cannot accept her being there and being content. I want to be content and happy but with her and i know, yes i know it can’t be so and, as you all know, that’s probably the most upsetting thing. That your love one canot be with you to share the rest of your life together. That future isn’t yours to decide now.

I’m sitting here, in the dark, probably going to watch another stupid movie and comfort eat.

All my love to you all

Peter
 

Stacey sue

Registered User
Jan 24, 2020
61
I have booked a slot to see Dave tomorrow through the glass door! Its upsetting just thinking about it, but I dont know how long it will be if I don’t go? Will he know me? I hope so.I think he has deteriorated during lock down, It will be hard not to touch him , I can not wait until I am allowed to give him a hug. Hope it is not too confusing for him, what an evil disease .!!! SSue
 

Dutchman

Registered User
May 26, 2017
763
Devon
Hi Sue
If your visit is anything like mine you’ll feel lots of emotions. No surprise there. I speak through the window and say i love you and are you okay but this is confusing for her. We blow kisses but you can see in her face she’s trying to work it out. I don’t stay long as i start to choke up so i go back to the car for a while..

I really just want to hold her and protect my woman and i can’t. The home can do all this and I would be a fool and selfish to imagine i could give her the level of care and safety they can.

But i’m on my own here with only my imagination and when we’re lonely and craving love we imagine we can do all sorts of things.

Love to you

pete
 

Stacey sue

Registered User
Jan 24, 2020
61
Hi, yes I agree, I will be in a mess in front of them all waffling on,because what else is there to do? I just cannot get the old Dave out of my head, maybe it will help to see him? I hope he recognises me?? We will see??
SSue. X
 

Dutchman

Registered User
May 26, 2017
763
Devon
I would like to share that I’m feeling a bit ashamed and uneasy about what I’m feeling today.

I’m getting used to the situation in that I don’t feel so much hurt and upset and I’m getting used to being on my own. Whether this is a momentary phase I don’t know. But the thing is that I feel I shouldn’t be feeling better and in some way it sullies her memory and lessens my love for her.

I don’t want to admit to others that I’m okay and things are improving. Will they think I’m shallow?

In some ways I want all the feelings I had 6 months ago to be here to heighten my feelings for her. God, this rotten dementia affects us like no other disease I can think of.

Peter
 

Woo2

Registered User
Apr 30, 2019
2,651
South East
I haven’t been in your situation Peter so I can’t speak from experience but I think that it is something that will just happen and creep up on you , I see it as a self protection instinct , especially after an op you are needing to protect yourself physically and mentally . It doesn’t mean anything detrimental regarding Bridget in my eyes but that you are getting stronger gradually. Please do be kind to yourself . I’m sure no body would ever accuse you or think you are shallow , far from it .
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,764
Kent
It`s amazing what we can come to terms with if pushed @Dutchman.

You are in a position, not of your own making, and have suffered enough for anyone. Please don`t start to feel guilty because at last it may not be as painful as it was.

Feeling better in yourself does not necessarily mean your love for your wife is diminishing. It`s more likely to mean you are coming to terms with what life has presented you with.

It`s taken a long time.
 

Stacey sue

Registered User
Jan 24, 2020
61
I am pleased you are feeling better about things. My visit was so upsetting,Dave didn’t know me or our daughter? He didn’t get that we were outside the glass door. The home have just phoned to say that a lot of the residents are like that because they have not been seeing relatives for 12 weeks! We just sat and cried which didn’t do anyone any good? Our daughter found it too upsetting,she is pregnant and will not be doing this sort of visit again. I just need to see it for what it is because I just can not move on,I still remember him at home. They said at the home he walks around most of the night so would be better to see him in the afternoon when he has had cat naps? Will go again on Thursday.
So very glad your improving, and far from shallow.!! ssue
 

Banjomansmate

Registered User
Jan 13, 2019
2,092
Dorset
I would like to share that I’m feeling a bit ashamed and uneasy about what I’m feeling today.

I’m getting used to the situation in that I don’t feel so much hurt and upset and I’m getting used to being on my own. Whether this is a momentary phase I don’t know. But the thing is that I feel I shouldn’t be feeling better and in some way it sullies her memory and lessens my love for her.

I don’t want to admit to others that I’m okay and things are improving. Will they think I’m shallow?

In some ways I want all the feelings I had 6 months ago to be here to heighten my feelings for her. God, this rotten dementia affects us like no other disease I can think of.

Peter
I think I would call it acceptance and the start of moving on with your life. We cannot all be like Queen Victoria and shut ourselves away to mourn, in your case the loss of Bridget to dementia, and neither should we, our lives are to live!
The Banjoman died in October and I have had periods of missing him and mourning for the man he was and the relationship we had before dementia changed our lives but there have been plenty of times when I have got involved in things and my life carries on. Just recently I had a period when, like you I thought ‘should I be feeling OK?’ and the obvious answer was ‘Yes, because you cannot grieve for ever’.
Today I was looking at the blue grass planted out in my garden that I had included in the floral arrangement I had made for his funeral (he played Bluegrass music) and for a few minutes I was tearful remembering something his sister-in-law said about it, (not unkindly, I should add, ) so little things can easily tip one over but then we pull ourselves together and face the world again.
Hopefully you are beginning to face the world again Peter, taking baby steps maybe but one step at a time is the only way to go!
 

Dutchman

Registered User
May 26, 2017
763
Devon
I am pleased you are feeling better about things. My visit was so upsetting,Dave didn’t know me or our daughter? He didn’t get that we were outside the glass door. The home have just phoned to say that a lot of the residents are like that because they have not been seeing relatives for 12 weeks! We just sat and cried which didn’t do anyone any good? Our daughter found it too upsetting,she is pregnant and will not be doing this sort of visit again. I just need to see it for what it is because I just can not move on,I still remember him at home. They said at the home he walks around most of the night so would be better to see him in the afternoon when he has had cat naps? Will go again on Thursday.
So very glad your improving, and far from shallow.!! ssue
I’m so sorry Stacey Sue that you had an upsetting time at the home. There’s really no avoiding being upset when we put ourselves into the position that of course will upset us.

i’m going tomorrow and i know for sure i will be in tears. But i need to go, i need to see her and i hang on to what’s left of her. I‘ll give the staff a card to read to her saying i’ll always love you , your Peter, but i know she’ll get confused over that, but so what.

Im glad things seem to be improving for me but tomorrow might be a different story.

Peter