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Dementia’s journey

Dutchman

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May 26, 2017
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Devon, Totnes
I have purposefully looked at recent photos and videos taken in the care home of Bridget that have upset me. Being upset connects me again with her in a much more raw way
as I don’t want to lose the intimacy that longing and upset brings.( does this make sense?)

. I get uncomfortable with not missing her so much, getting used to being on my own and beginning to forget what our life together was like. I’m afraid I’ll forget it all and that I’ll have nothing left of the feelings I had and have for her. So I upset myself to force those longing grieving feelings back.
 

Wifenotcarer

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Mar 11, 2018
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75
Central Scotland
I have purposefully looked at recent photos and videos taken in the care home of Bridget that have upset me. Being upset connects me again with her in a much more raw way
as I don’t want to lose the intimacy that longing and upset brings.( does this make sense?)

. I get uncomfortable with not missing her so much, getting used to being on my own and beginning to forget what our life together was like. I’m afraid I’ll forget it all and that I’ll have nothing left of the feelings I had and have for her. So I upset myself to force those longing grieving feelings back.
I can look at the photographs of our early days, engagement, marriage, with our children and grand children right up to our Golden Wedding with no sense of loss, only happy memories.
However, I cannot look at the photos from the last six years without getting upset as they show him fading away, suffering, physically and mentally, until he is a shadow of his former self. For my own well-being, I try to focus on the 50+ happy years as a couple - more than most widowed people have - rather than dwell on the difficult latter years. We all have to find our own coping strategies - this is mine
 

Andy54

Registered User
Sep 24, 2020
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@Dutchman Hello Peter, I'm not sure that deliberately upsetting yourself is a good direction to go in. I think I would rather remember the happier times and I would worry that concentrating on the more recent sadness might push the better memories into the background. I'm in a similar situation with Deb, looking at pictures and videos of her in the care home always bring me to tears and the overwhelming feelings are of loss and pity., this really isn't how I want to remember her. The sense of longing for the pre dementia Deb will I think always be with me but that is the Deb that I want the strongest memories of. I too am getting used to (or maybe just resigned to) living alone and I do find that memories of our life together are sometimes a little patchy, the early years together and the years immediately before the dementia took hold are the strongest, it's the bits in the middle that seem to be harder to remember the detail. Deb no longer recognises me and when I visit now it's like she is seeing me for the first time and it's getting more and more difficult to get her attention.
All we can do is try to stay strong, best wishes Andy.
 

Dutchman

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May 26, 2017
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Devon, Totnes
@Dutchman Hello Peter, I'm not sure that deliberately upsetting yourself is a good direction to go in. I think I would rather remember the happier times and I would worry that concentrating on the more recent sadness might push the better memories into the background. I'm in a similar situation with Deb, looking at pictures and videos of her in the care home always bring me to tears and the overwhelming feelings are of loss and pity., this really isn't how I want to remember her. The sense of longing for the pre dementia Deb will I think always be with me but that is the Deb that I want the strongest memories of. I too am getting used to (or maybe just resigned to) living alone and I do find that memories of our life together are sometimes a little patchy, the early years together and the years immediately before the dementia took hold are the strongest, it's the bits in the middle that seem to be harder to remember the detail. Deb no longer recognises me and when I visit now it's like she is seeing me for the first time and it's getting more and more difficult to get her attention.
All we can do is try to stay strong, best wishes Andy.
@Andy54 hi there. Thanks for the considered reply. It makes sense I suppose to concentrate on the good times but they do say negative stuff always sticks like Velcro and the upset makes a big memory.

I used to say to Bridget when she was at her worse and I wasn’t coping that “ you can’t help it I know” and I’d try to rationalise the behaviour and then just get on with the day. Never did I think that this couldn’t go on for ever and I just thought we’d just muddle through. Stupid wasn’t it!!

She is safe now, content, looked after well, free from the anxiety of what it was like in 2019. So I rest easier now but lurch from missing her terribly one day to the next when I’m just about ok with it.

Like you with Debs I’m not recognised as her husband but I’m sure she gets a little joy from seeing me as someone nice who regularly comes to visit. Who knows? Thats about it and I can’t do anymore
Cheers
Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
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Kent
Apart from our wedding photo, the only photos on show are of my husband with dementia. I don`t see it as morbid or dwelling in the past, I just see them as my last memories of him, how he was and how I was able to accept him as he was.

Admittedly they are all smiley photos even if his dementia is obvious but there they are and there they will stay.

@Dutchman . There is no need to deliberately upset yourself to ensure you still have a connection with your wife. You do have a connection. You visit her, you think of her and you post about her. The connection is there and you are getting used to how she is and where she is at this stage in her and your life, which is one step towards acceptance.
 

kindred

Registered User
Apr 8, 2018
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0
@Andy54 hi there. Thanks for the considered reply. It makes sense I suppose to concentrate on the good times but they do say negative stuff always sticks like Velcro and the upset makes a big memory.

I used to say to Bridget when she was at her worse and I wasn’t coping that “ you can’t help it I know” and I’d try to rationalise the behaviour and then just get on with the day. Never did I think that this couldn’t go on for ever and I just thought we’d just muddle through. Stupid wasn’t it!!

She is safe now, content, looked after well, free from the anxiety of what it was like in 2019. So I rest easier now but lurch from missing her terribly one day to the next when I’m just about ok with it.

Like you with Debs I’m not recognised as her husband but I’m sure she gets a little joy from seeing me as someone nice who regularly comes to visit. Who knows? Thats about it and I can’t do anymore
Cheers
Peter
This whole business messes with our heads so badly. We get through as best we can.
kindredx
 

Dutchman

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May 26, 2017
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Devon, Totnes
This whole business messes with our heads so badly. We get through as best we can.
kindredx
In many way @kindred that kind of thought gives me some comfort. No matter how we’re feeling , no matter how we treat ourselves then I think we’re entitled to act that way after all we’ve been through.

Many people don’t experience even a small percentage of what we’ve had to cope with, and if Bridget hadn’t developed dementia, well, we would probably be as innocent as the next person to all the problems dementia throws up and how it “ messes with your mind”.
Peterx
 

Dutchman

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May 26, 2017
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Devon, Totnes
I was thinking ( do too much probably!) that the sadness and loneliness of being alone, and with Bridget apart from me in her home, that simple pleasures are tainted.

Simple things that we used to enjoy together such as a lovely summers morning, our walks along our coast, the excitement in the anticipation of a holiday break. The innocence is gone because there’s this knowing that it’s never the same when you can’t share it with someone you’ve known so well for the past 30 years.

I hope I won’t offend anyone here but on a different note I went to see her yesterday and she realised during my visit that she needed the loo ( this knowing is still there) and I helped her as staff were very busy. Basic bodily necessities and I gave her personal care, cleaned her and made her feel comfortable. It was as normal as breathing and I felt she appreciated my care.

So we exchange an intimacy and the intimate acts when it’s normal living together as a couple to that intimacy when you care for someone you love and you get a satisfaction from helping them when they can’t help themselves. Although it could have been otherwise I felt a closeness from that care.
 
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Dutchman

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May 26, 2017
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Devon, Totnes
Good morning everyone. Once again it’s the beginning of the better weather with warmer days and more light. And it reminds me of that period of time back in 2019 when Bridget was at her worse. I lost so much weight as we weren’t eating properly and stress killed my appetite. Pictures show me drawn and unhealthy and I wonder how I didn’t become ill.

Now much better but at what price? It’s often said that alone doesn’t mean lonely but for me I’m lonely and that seems to be an unfavourable word these days, full of miserable associations. Sure, I get some pleasure from things but nothing replaces the sharing of a life together full of normal ups and downs.
Whatever anyone says to you, going through living with a person with dementia, not coping with the caring, little sleep, stress, fear, isolation…..well, it all adds up and I just think it’s one of the worse positions in life to be in.
Just to be in one piece at the end of all this with Bridget now almost 3 years in her home. Never think coping at home with extreme dementia can be contained because it can’t go on and I was blinkered and never thought I’d loose her the way she went.
Stay strong
Peter
 
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Agzy

Registered User
Nov 16, 2016
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Moreton, Wirral. UK.
Good morning everyone. Once again it’s the beginning of the better weather with warmer days and more light. And it reminds me of that period of time back in 2019 when Bridget was at her worse. I lost so much weight as we weren’t eating properly and stress killed my appetite. Pictures show me drawn and unhealthy and I wonder how I didn’t become ill.

Now much better but at what price? It’s often said that alone doesn’t mean lonely but for me I’m lonely and that seems to be an unfavourable word these days, full of miserable associations. Sure, I get some pleasure from things but nothing replaces the sharing of a life together full of normal ups and downs.
Whatever anyone says to you, going through living with a person with dementia, not coping with the caring, little sleep, stress, fear, isolation…..well, it all adds up and I just think it’s one of the worse positions in life to be in.
@Dutchman, I know what you mean about the distinctions between being alone and being lonely as both are are so intrinsic to living with or having lived with someone with dementia. I can be on my own walking, reading and doing Sudoku but not lonely and yet sitting with Pauline as she watches repetitive TV shows and I feel so lonely. For me I think the loneliness is the loss of conversations and the wonderful memories we shared over the years now being just my memories and I pine for what was rather than what is. I feel for you as I follow your posts as I see so much as visions of my future eventually. Stay strong and keep posting please.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Hi everyone.
I guess by now you realise I often use this forum as a way of making sense of it all. The dementia, the behaviour, the stress and anxiety and the impossible task of coping with what realistically became living with a stranger who couldn’t love me anymore as her husband of 30 odd years.

I often talk to others ( probably too much! ) about my experience and you find that they just can’t comprehend what I’m saying. They have their partners and live their lives normally as I did when Bridget was ok.

And now I find it difficult to remember those normal days when we lived together. Three years alone have got me used to living without someone but, oh, how I’d love her back in a perfect world. To have someone making a noise and moving about in the house. To sit next to me with their head on my shoulder.

I often think of how self centred I’ve been when life was normal. We always thought life would just go on and if I’d known our time together was limited I would’ve loved her more, given her more time and just thought of her more.

But, I suppose, we can’t go through life thinking tomorrow’s our last, although many suggest that’s one way of making the best of our lives. But how long could I keep up that concentration.
I can’t change the past. All I’m saying is love more and never take for granted that life never changes and you’ll always have each other.
Peterx
 

DianeW

Registered User
Sep 10, 2013
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Lytham St Annes
Thats a lovely thought Peter and so very true …. since my Mum died at 59 after a short unexpected illness, my whole outlook on life changed.

Now I really do try to be thankful for what I have, to be positive and really not worry about the little things in life I used to be stressed over x
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I’ve just come back into an empty house after shopping and I’ve felt I needed a time of grief after losing Bridget to dementia. I get the photos out which show her towards the end at home really putting on a brave face with that struggle of anxiety. My poor Bridget so wanted to be normal and you can see how she’s beginning to lose it within company. Family photos reveal her distress.

I miss her so much. Yesterday at the care home she looked so peaceful and in a moment of forgetfulness I almost thought I could put her in the car ( even that would be a comforting familiarity) and bring her home, she’d remember it all and I’d look after her. Life would be ok again. But it’s all a dream isn’t it!

She has a team of carers that got her to be content and I would go under very quickly and it’s selfish.
God, this longing never goes away. How did it all end up like it did? Always thought this happened to other people, not us.
Peterx
 

Thethirdmrsc

Registered User
Apr 4, 2018
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I feel exactly the same, wishing I could take him home, and I’m only 5 months in. I find the days I go to the home emotionally and physically exhausting, and I feel guilty for living in this house. He doesn’t have much presence here, although I’ve put up more pictures of him from happier times, and I feel I’m still in the twighlight zone, and will be for some time. It’s a different unhappiness now, no anger, just sadness, and I feel he has been forgotten by all but me.
 

Dutchman

Registered User
May 26, 2017
1,780
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Devon, Totnes
I feel exactly the same, wishing I could take him home, and I’m only 5 months in. I find the days I go to the home emotionally and physically exhausting, and I feel guilty for living in this house. He doesn’t have much presence here, although I’ve put up more pictures of him from happier times, and I feel I’m still in the twighlight zone, and will be for some time. It’s a different unhappiness now, no anger, just sadness, and I feel he has been forgotten by all but me.
I’ve felt the same about feeling guilty within the house. Almost like a survivor guilt I suppose. Why should I be left within this house when we both poured love into it. But all Bridget wanted to do was to escape and live with her parents ( long dead).

I don’t feel so much that Bridget’s been forgotten, more that people have such busy lives and she not a priority compared to her being my sun and moon. Perhaps I’d be the same, who knows!

Your husband is remembered by you and sometimes that’s all we can do. I’d love to say that it gets better but I had a melt down yesterday which came out of nowhere and was overwhelmed by longing and regret. I don’t think this ever goes away and our mind just wants normality back, no matter how unrealistic that might be.
Peterx
 

kindred

Registered User
Apr 8, 2018
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I’ve felt the same about feeling guilty within the house. Almost like a survivor guilt I suppose. Why should I be left within this house when we both poured love into it. But all Bridget wanted to do was to escape and live with her parents ( long dead).

I don’t feel so much that Bridget’s been forgotten, more that people have such busy lives and she not a priority compared to her being my sun and moon. Perhaps I’d be the same, who knows!

Your husband is remembered by you and sometimes that’s all we can do. I’d love to say that it gets better but I had a melt down yesterday which came out of nowhere and was overwhelmed by longing and regret. I don’t think this ever goes away and our mind just wants normality back, no matter how unrealistic that might be.
Peterx
Thank you Peter. I draw such strength from your posts. They are so honest and often so wise. Kindredx
 

Thethirdmrsc

Registered User
Apr 4, 2018
654
0
I’ve felt the same about feeling guilty within the house. Almost like a survivor guilt I suppose. Why should I be left within this house when we both poured love into it. But all Bridget wanted to do was to escape and live with her parents ( long dead).

I don’t feel so much that Bridget’s been forgotten, more that people have such busy lives and she not a priority compared to her being my sun and moon. Perhaps I’d be the same, who knows!

Your husband is remembered by you and sometimes that’s all we can do. I’d love to say that it gets better but I had a melt down yesterday which came out of nowhere and was overwhelmed by longing and regret. I don’t think this ever goes away and our mind just wants normality back, no matter how unrealistic that might be.
Peterx
Survivors guilt, that’s exactly what it is, and I hadn’t really thought of it in the context of us.
 

Dutchman

Registered User
May 26, 2017
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Devon, Totnes
Survivors guilt, that’s exactly what it is, and I hadn’t really thought of it in the context of us.
Going on from yesterday, and just when I thought I was coming out of the woods, I cried bitterly this morning after seeing diary entries for early 2017 ( I tried to keep track right through to 2019) and all I could see was one row after another. Driving licence, wanting to move, you never talk to me, you do stuff and I do nothing.

And I’m once again plagued by the thought that I was at fault being selfish and self centred. Bridget never really thought much of herself. She was always there for others. So I think I neglected her when she wanted me the most. And the tragedy is that I can’t make amends.
Peter
 

jennifer1967

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Mar 15, 2020
11,801
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Southampton
Going on from yesterday, and just when I thought I was coming out of the woods, I cried bitterly this morning after seeing diary entries for early 2017 ( I tried to keep track right through to 2019) and all I could see was one row after another. Driving licence, wanting to move, you never talk to me, you do stuff and I do nothing.

And I’m once again plagued by the thought that I was at fault being selfish and self centred. Bridget never really thought much of herself. She was always there for others. So I think I neglected her when she wanted me the most. And the tragedy is that I can’t make amends.
Peter
can you stop blaming yourself and beating yourself up by what ifs you manage the situation as you saw it and got her more help when she needed it. that doesnt sound like someone who was selfish but shows someone with a difficult job of caring