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Dementia’s journey

blackmortimer

Registered User
Jan 2, 2021
289
0
I find it the same, @Dutchman , always feeling there's something I should be doing and then realising that there's actually no pressure because I only need to consider myself. I think it comes to the years of caring at home when there always really was something that needed to be done and it's not easy to adjust. I seem to find myself jobs, do a bit an then collapse in a heap because I don't have the energy to carry anything through. At the moment the funeral is the only thing on the horizon and given that my son and daughter have taken on the burden of the arrangements I try not to think too much about it. I find myself getting restless around lunch time because in these last weeks that has been the time when I've been getting myself ready to go down to the nursing home. Now I realise that I no longer have that, I really miss it and have to find ways to fill my afternoons. I suppose it's all part of the grieving process. I hope it gets better, but am not too optimistic at the moment. God bless.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Just come from the home after spending time helping Bridget with her supper.

She was quite lucid today which you’d think is a good thing, but the more she understands and replies the correct response it fools my mind into thinking that all is normal and we can have a relationship, that it’s not a million miles from my wife at home.

And if she understands more does she also understand me going and missing me? These thoughts mess with my mind ( said that before) and I wish at times she’d be vacant and not understand. Oh, I don’t know, I can never get it right!
 

Dutchman

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May 26, 2017
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Devon, Totnes
I went for a long walk on Dartmoor today with a walking group and even in the magnificent landscape I missed her and her company. The loss of her infects everything I do. I get tired explaining the whole situation to others who don’t want their day spoilt by me being downcast.

I look at these other people and realise that the amount of life I’ve spent with one person could not be repeated with another. And they probably feel the same. I’ve never had to think like this before and it’s disorientating and unsettling.

It sort of highlights how special a large chunk of my life has been with Bridget and how normal and ordinary it all was to be living together year after year never expecting it to end. And then I get home and I’m torn between enjoying the remainder of the day and guiltily remembering I’ve had a half enjoyable day away from her.

I thought I’d visit at dinner time tomorrow but could go at tea time. Always there’s this awkward indecision that unsettles me because I know she won’t know but part of me believes she’ll miss the earlier visit and I’m off again in a confusion of emotions.

Every day gives me fresh troublesome feelings to cope with.
 

Violet Jane

Registered User
Aug 23, 2021
412
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Dutchman, I'm sure that Bridget would not want you to feel guilty about deriving some enjoyment from life. She would want you to be happy. Feeling guilty does not make her life better in any way. I'm glad that you have had 'a half enjoyable day'.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Dutchman, I'm sure that Bridget would not want you to feel guilty about deriving some enjoyment from life. She would want you to be happy. Feeling guilty does not make her life better in any way. I'm glad that you have had 'a half enjoyable day'.
Thank for those comforting words❤️
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
I want to thank all of my readers and wish I could do so in person but at least we have this Forum where can open up to each other.

I’m often blown away by the amount of considered replies from my Forum friends who take the time in difficult circumstances to help and comfort me. I only hope that whatever I write also helps in some way.

It’s Sunday morning, it’s cold and dull here and doesn’t help my mood. I know that at this moment someone will be getting Bridget up, doing her personal care, later she’ll be having her coffee and biscuits and she’ll be looked after. All good for her.

It’s another day on my own until I visit later. Another day where she’s living a separate life to me. It’s like she left here 2 years ago because I was no good, that she hated me and couldn’t wait to leave and it’s almost like separating, a divorce. I know it’s the dementia, I really do, but the wrenching apart of me and her feels like a divorce. And I can never make it better by making her understand how much I love her.
All I can do is go and see her. The only alternative is to see her all the time and be with her more but I suspect I would be disappointed of the expected benefits.

When it’s quiet here my mind plays out all these ideas
 

canary

Registered User
Feb 25, 2014
16,138
0
South coast
Try and put these thoughts to one side, Peter. Acknowledge them, yes - they are "strange thoughts in a tired mind", but dont let them feed off you.

Bridget is ill. She hasnt divorced you and if she were not ill, she would not have moved out. None of this is your fault.
 

blackmortimer

Registered User
Jan 2, 2021
289
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I agree with @canary , @Dutchman . All the talk of divorce of getting away from you, it's just the dementia and you mustn't let it eat away at you. That's what dementia does. It was just the same with Margaret and others I've spoken to have a similar story. So don't beat yourself up. Do what you can for Bridget while you still have her, even if it's no more than helping her eat and drink. Put all negative thoughts out of your head. For me the last weeks and days were positive and I'm glad I was able to have them. For you ,God willing, the journey may continue who knows how long so cherish Bridget while you can, No one knows when the end may come. God bless.
 

update2020

Registered User
Jan 2, 2020
70
0
Yesterday I watched the documentary 'Undercover OAP: The Mole Agent ' - a sweet sad/funny documentary about life in an old people's home in Chile (BBC Storyville). The people are all elderly with mild dementia (maybe one man looks like he may have younger onset) and none are as disturbed as those I am used to, but I found it comforting - this different way of valuing life and living in the moment. The star, Sergio, aged 83 and recently widowed, (and the so-called Mole) is very sympathetic.
 

blackmortimer

Registered User
Jan 2, 2021
289
0
I've been spending the evening (a) finding and (b) sorting piles of old photos and far from being tear provoking I've found it helps me in my attempt to erase the dementia years and remember Margaret as she really was. The photos go back to 1973 and the children are going to use a selection of them to put together a sort of life of Margaret in pictures for the funeral. I've been rather low these last couple of days but going back really does help me. I don't expect the grief to go away bot there is a glimmer of hope that I may be able to live with it. God bless you all.
 

Violet Jane

Registered User
Aug 23, 2021
412
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Blackmortimer, I’m glad that you have found looking at old photographs of Margaret healing to some extent. Dementia generally goes on for so long (years in most cases) that it can be hard to remember the person before s/he became ill and it’s good to remember the many years when s/he was happy, vibrant and capable.
 

Dutchman

Registered User
May 26, 2017
1,530
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74
Devon, Totnes
I've been spending the evening (a) finding and (b) sorting piles of old photos and far from being tear provoking I've found it helps me in my attempt to erase the dementia years and remember Margaret as she really was. The photos go back to 1973 and the children are going to use a selection of them to put together a sort of life of Margaret in pictures for the funeral. I've been rather low these last couple of days but going back really does help me. I don't expect the grief to go away bot there is a glimmer of hope that I may be able to live with it. God bless you all.
I’m so glad that the photos have been a help to you. I think of you @blackmortimer going through these dark times and I’ll be with you in spirit on the day of the funeral. Just think of many of us Forum poster friends standing round you with our hands on your shoulders.

Unfortunately looking at old photos has the opposite affect on me and I look and see Bridget and her wonderful smiling face and I miss that so. I miss what she was, what we were and I continue to long for it to return. Of course that creates heartache and I quickly put the photos away. I wish I could get some comfort from looking at them but I can’t .. not yet.

God bless @blackmortimer
 

blackmortimer

Registered User
Jan 2, 2021
289
0
Thank you for your support, @Dutchman . You've no idea how much it helps. I'm glad I've had a few weeks before the funeral because it's given me space to mourn and space to remember the real Margaret. Already I begin to find the memory of the dementia years fading and the real Margaret reappearing which for me at least is a blessing. I still weep but not quite so frequently and the darkness isn't quite as all encompassing. In short I can see light at the end of the tunnel. However, much is die to your support and that of others here and for that I shall be eternally grateful. God bless you all.
 

Old Flopsy

Registered User
Sep 12, 2019
275
0
I often think about you @blackmortimer and wonder how you are filling your days now. I had got so used to visiting OH every day as the end of life approached- it was still a tremendous shock when he died. I miss the carers and residents so much- such lovely people.

@Dutchman I am so pleased that you pour your heart out every day and I hope that Bridget remains well.
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
I often think about you @blackmortimer and wonder how you are filling your days now. I had got so used to visiting OH every day as the end of life approached- it was still a tremendous shock when he died. I miss the carers and residents so much- such lovely people.

@Dutchman I am so pleased that you pour your heart out every day and I hope that Bridget remains well.
Thanks. I value your comments❤️
 

blackmortimer

Registered User
Jan 2, 2021
289
0
I often think about you @blackmortimer and wonder how you are filling your days now. I had got so used to visiting OH every day as the end of life approached- it was still a tremendous shock when he died. I miss the carers and residents so much- such lovely people.

@Dutchman I am so pleased that you pour your heart out every day and I hope that Bridget remains well.
Like you, I'd been visiting virtually every day as the end approached and like you I miss the people and the sights and sounds of the nursing home. Still I look at the clock as lunchtime approaches and have to remind myself that there's no visiting to be done and I feel a pang of sorrow at the fact that that chapter of my life has closed. The days do seem empty but I've been filling them with sorting out things like the old photos and pieces of Margaret's writing and getting them into some kind of order, weeping the while but it's cathartic for me to remember the old days when Margaret was in her prime and then there's the funeral to prepare for, not that I have a lot to do as my daughter principally and also my son are seeing to all that but I feel I need to make sure the house is clean and tidy for the refreshments afterwards. I suspect that after that I shall feel empty again and then there's Christmas but, as the saying goes, that's a whole other ball game! God bless.
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
Hello @blackmortimer and my fellow Forum friends. I think I know what you’re going through @blackmortimer although I can’t be sure, but I think I know. It’s the finality of it all. We have a purpose, no matter how small, when we visit the home but even that’s been taken from you. I dread the empty days when eventually I don’t have to visit anymore.

It’s dawning on me more and more that I’m on my own now and Bridget is living another life. No matter how much I try to connect with her with loving words, the habitual bringing of the same treats and her favourite music, there is this unbridgeable gap that separates us from each other.

The strongest emotion I have this morning is that I feel so sorry for her. A life so full of energy for family and ideas brought down by dementia. I look at her sitting quietly there in the chair as she looks out the window and I wonder if she feels a sadness and confusion. I want so much to understand, to get inside her world. I know I can’t alter anything and I know that the home has given her the best possible care which would have been impossible if she’d been with me.

But I miss her so much and I just want her to be content as much as dementia allows. I suppose also I feel sorry for myself that the imagined life we would have had is now completely different. I only wanted to care for her and protect her and, in the end, all that was taken out of my hands.

Bless you all this morning and I wish you as much peace as you can manage
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
Hello @blackmortimer. I think I know what you’re going through, although I can’t be sure, but I think I know. It’s the finality of it all. We have a purpose, no matter how small, when we visit the home but even that’s been taken from you. I dread the empty days when eventually I don’t have to visit anymore.

It’s dawning on me more and more that I’m on my own now and Bridget is living another life. No matter how much I try to connect with her with loving words, the habitual bringing of the same treats and her favourite music, there is this unbridgeable gap that separates us from each other.

The strongest emotion I have this morning is that I feel so sorry for her. A life so full of energy for family and ideas brought down by dementia. And I look at her sitting quietly there in the chair as she looks out the window and I wonder if she feels a sadness and confusion. I want so much to understand. I know I can’t alter anything and I know that the home has given her the best possible care which would have been impossible if she’d been with me.

But I miss her so much and I just want her to be content as much as dementia allows. I suppose also I feel sorry for myself that the imagined life we would have had is now completely different. I only wanted to care for her and protect her and, in the end, all that was taken out of my hands.

Bless you all this morning and I wish you as much peace as you can manage
 

update2020

Registered User
Jan 2, 2020
70
0
it's been a difficult week of bereavements and memorial services. My lingering sadness is that my husband never really got to live his life. He'll never be celebrated like these other people who completed their adult lives and fulfilled some potential. his illness set in before our children grew up and they have lived with it as carers for half their lives or more . I think it means we have to find a different purpose to life and a different language from 'loss'. That is realy hard. None of the conventional assumptions apply.
 

Dutchman

Registered User
May 26, 2017
1,530
0
74
Devon, Totnes
it's been a difficult week of bereavements and memorial services. My lingering sadness is that my husband never really got to live his life. He'll never be celebrated like these other people who completed their adult lives and fulfilled some potential. his illness set in before our children grew up and they have lived with it as carers for half their lives or more . I think it means we have to find a different purpose to life and a different language from 'loss'. That is realy hard. None of the conventional assumptions apply.
Hello @update2020. I appreciate what you are saying. The loss at anytime is dreadful but what we experience is the seemingfull waste of the life surrounded by concerns about caring for someone who cannot make sense of this world and has turned from a person full of vitality and strength to one brought down by dementia.

I often think about Bridget’s lost potential and how much more love she had to give to our family and me. In photos I see such sparkle and joy. And you’re right, normal assumptions do not count and I struggle everyday to make sense of my adjustment to how I now have to live