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Dementia’s journey

Thethirdmrsc

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Apr 4, 2018
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I have also moved things around, moved his clothes into different drawers, but I have put more pictures of him up, and also put some of my jewellery and stuff into a box frame, which I think looks nice. Some singletons would kill for our lives.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I don’t know who’s going to pick this up but I’m going crazy thinking the way I thought when the dementia took my Bridget away back in 2019
Bridget had what I believe was a couple of TIA’s back in 2014 while we were on holiday. She was breathless and fell back on the seat and apart from that seemed ok and recovered and I did nothing. Why o why didn’t I follow it up? Why didn’t I insist on a doctors appointment? She may have avoided getting brain damage and then dementia and we’d be ok now instead of her life ruined.
It’s my fault really that she’s like this, that I simply thought of the inconvenience of the situation and now I’m suffering and she’s another person to me.
So much lost and I’ve gone back all these years to a time when I did nothing and now I’ve ruined her life as well as my own.
 

kindred

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Apr 8, 2018
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I don’t know who’s going to pick this up but I’m going crazy thinking the way I thought when the dementia took my Bridget away back in 2019
Bridget had what I believe was a couple of TIA’s back in 2014 while we were on holiday. She was breathless and fell back on the seat and apart from that seemed ok and recovered and I did nothing. Why o why didn’t I follow it up? Why didn’t I insist on a doctors appointment? She may have avoided getting brain damage and then dementia and we’d be ok now instead of her life ruined.
It’s my fault really that she’s like this, that I simply thought of the inconvenience of the situation and now I’m suffering and she’s another person to me.
So much lost and I’ve gone back all these years to a time when I did nothing and now I’ve ruined her life as well as my own.
I’ve just picked it up Peter. I understand, you know I do. I don’t think you could have in any way avoided what happened. all sympathy and thoughts, I know how hard this is for you.
Kindredxxx
 

jennifer1967

Registered User
Mar 15, 2020
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Southampton
it really wouldnt have made any difference to the outcome. my husband had a tia and then diagnosed with vascular dementia. i didnt even know it had happened so dont beat yourself up on what might have been, you will torment yourself doing that. you looked after her the best way you could and still look after her by getting her the help that she needed when she needed it. and you are still caring for her so dont torment your self by shoulda, woulda, coulda but know you did your best
 

canary

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Feb 25, 2014
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South coast
Peter, there is no way that you could have prevented, or even anticipated a TIA. There is no treatment for them - unlike a stroke where you can do things to lessen (though not entirely prevent) damage.

Ultimately, there is nothing that you can put your finger on and say "If only I'd done........." which would have prevented the dementia. There is no rhyme or reason to it, its like a lot of other things in life - its just the way the dice falls. Stop blaming and punishing yourself
 

Dutchman

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May 26, 2017
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Devon, Totnes
I want to thank you all for your comforting comments. This is a tricky road we travel as carers caring from afar. I suppose I’m trying to make sense of it and there’s just no way I can do that. Dementia is like no other debilitating condition. When you’re unable to reason and have a meaningful conversation with someone it’s double the frustration and then I get to remember the past and how things have changed for the worse, literally in a moment when a part of Bridget’s brain was ruined
 

Thethirdmrsc

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Apr 4, 2018
654
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It’s too easy to torture yourself when there is no one to hand to tell you otherwise, and I’m sure we all do it, I know I do. Maybe if I hadn’t have moved he would be ok, maybe if I had coped better he would be here, maybe if I’d have saved better I wouldn’t be in this mess, maybe, maybe. We do what we do at the time, and we are only human. Be kind to yourself, and I will try and listen to my own advice!
 

Dutchman

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May 26, 2017
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Devon, Totnes
I’m at last convinced that I couldn’t have affected the outcome of Bridget’s dementia one way or the other. It’s taken at least over two years for the realisation to sink in.

I’m saying this because I know many of us are struggling with this same dilemma and it wears us down, beats us up and we go into self judgment mode at the drop of a hat.

An Admiral Nurse said to me that I’d have to be very powerful indeed to stop a TIA and, then to manage perfectly the outcome and caring role, you’d need to be something different to an ordinary person, learning as you went along. But I’m ordinary, not trained or a specialist.

I’ve asked myself countless times why Bridget. Was it because of this or that, weight, life style, smoking, genetics. But thousands of people get terminal diseases who lead healthy lifestyles. It’s not fair. So in many ways
I just think that we are unlucky. It doesn’t lessen how much I miss her, need her, want her back. She stroked my arm yesterday and said “there there” after I mentioned my hernia pain. She still has it in her to comfort. I live on that
 

update2020

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Jan 2, 2020
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I’m at last convinced that I couldn’t have affected the outcome of Bridget’s dementia one way or the other. It’s taken at least over two years for the realisation to sink in.

I’m saying this because I know many of us are struggling with this same dilemma and it wears us down, beats us up and we go into self judgment mode at the drop of a hat.

An Admiral Nurse said to me that I’d have to be very powerful indeed to stop a TIA and, then to manage perfectly the outcome and caring role, you’d need to be something different to an ordinary person, learning as you went along. But I’m ordinary, not trained or a specialist.

I’ve asked myself countless times why Bridget. Was it because of this or that, weight, life style, smoking, genetics. But thousands of people get terminal diseases who lead healthy lifestyles. It’s not fair. So in many ways
I just think that we are unlucky. It doesn’t lessen how much I miss her, need her, want her back. She stroked my arm yesterday and said “there there” after I mentioned my hernia pain. She still has it in her to comfort. I live on that
Great news @Dutchman . I hope that you can hold onto this.
 

Dutchman

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May 26, 2017
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Devon, Totnes
I know you know how I feel. Just need to unload sometimes.

I often wonder if I’m at all prepared for Bridget dying because I think it will be gradual rather than quick. I wish it were quick. After all I’m living on my own and have been for the past 3 years. That won’t change but to never see her again is something I can’t imagine. I visit and we have a form of relationship. To not have to go anymore will be difficult and strange.

I think it’s easy to say don’t think about it but it’s not easy for me because she’s always there by my side, in my thoughts and no matter how awful it was at the end she always remain lovingly loyal.
 

Thethirdmrsc

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Apr 4, 2018
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I haven’t even thought of that yet. Although I’ve just paid the backdated first fees of the care home, and now don’t have enough for a funeral. But his body is willing, just the brain is weak.
 

update2020

Registered User
Jan 2, 2020
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Impossible to predict. I thought my husband was physically strong and might go on for a long time. And then he died relatively quickly. Everyone was surprised. The not knowing is very hard to live with.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Just come back from a visit to Bridget. I’m not sure how others handle visits but, for me, I try to fill the time with what I’m doing or done.

I tell her all the time that I love and miss her but sometimes emotions get the better of me and I ask “ did you love me” and show her pictures of past holidays together. Irrationally I’m trying to keep hold of what we had so it’s no wonder I get upset at little or no response. And if she can’t understand she may answer wrongly and I’m open to disappointment. Moral being, I suppose, is if I don’t want answers don’t ask questions !

It’s so hard to want emotional reassurance from someone who loved me as I love her still but struggles to understand the small world around her.
I’m in a Homebase car park and don’t feel like going home.
 

CAL Y

Registered User
Jul 17, 2021
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@Dutchman . You know, you really shouldn’t torture yourself like this.
From reading your posts, I’m sure that you know she loves you very much.
Its very hard and I feel for you but I’m sure you know quite well that if she was capable of showing her love for you, she would.
Please take care and try to be strong for her.
Carole.x
 

Thethirdmrsc

Registered User
Apr 4, 2018
654
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We all want to know that we are remembered in some way. I bought a big frame and today filled it with photos of him smiling, his face full and lively, and it’s in my spare room where I sit and sew. His son says his dad didn’t recognise him, but he doesn’t go often. I’m sticking to my 3 days a week, but every visit is different, depending on his mood, and that’s something I have to get used to.
 

Dutchman

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May 26, 2017
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Devon, Totnes
Ever since dementia had a dramatic impact in 2019 Bridget has been unable to speak properly. This is a fairly rare outcome of vascular dementia and it further restricts her from communicating with me.

I’ve read all the advice about how to help when I’m with her but naturally I ask her questions, but this is discouraged as it creates anxiety. But I’m not there as a speech therapist but as a husband with longings. I wish I was able to improve her verbal communication as she tries so hard to tell me stuff. It’s so sad to watch her struggle with this.
I wonder if it’s just too late now to improve her speech. If I have hopes and nothing happens then it’s just another thing that will upset me in a long line of upsets.
 

kindred

Registered User
Apr 8, 2018
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Ever since dementia had a dramatic impact in 2019 Bridget has been unable to speak properly. This is a fairly rare outcome of vascular dementia and it further restricts her from communicating with me.

I’ve read all the advice about how to help when I’m with her but naturally I ask her questions, but this is discouraged as it creates anxiety. But I’m not there as a speech therapist but as a husband with longings. I wish I was able to improve her verbal communication as she tries so hard to tell me stuff. It’s so sad to watch her struggle with this.
I wonder if it’s just too late now to improve her speech. If I have hopes and nothing happens then it’s just another thing that will upset me in a long line of upsets.
Hello Peter. This is an interesting point and as you say, you are not a speech therapist. I understand about questions. I find that statements are better, things like
I know you love me
You look happy, I hope you are
Often get a bit better response, such as it is
All thoughts to you, with love, Kindred
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
Hello Peter. This is an interesting point and as you say, you are not a speech therapist. I understand about questions. I find that statements are better, things like
I know you love me
You look happy, I hope you are
Often get a bit better response, such as it is
All thoughts to you, with love, Kindred
Thanks @kindred. As always you are a good support for me as I lurch from one thing to another❤️
 

Dutchman

Registered User
May 26, 2017
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74
Devon, Totnes
This may sound cruel but just sometimes I just wish Bridget understood what I’m going through with missing her and being without her and on my own. She knew me inside out and we always cared for each other. She’s the one person who would look after me and now she can’t. In a strange way I want her to feel my grief and feel what I feel.

She’s all nicely looked after, wants for nothing and oblivious to the awful emotions dementia has created. I suppose I want her comfort like she used to give me. I’m lonely and if it wasn’t for my daughter being nearby and some good friends I don’t know what I would do.

Don’t you feel sometimes that this all just goes on and on with the future so uncertain. That each day just drifts into the next.
 

Thethirdmrsc

Registered User
Apr 4, 2018
654
0
I’m angry sometimes, especially when he tells me to F off, or calls me B. He will never know what we go through. I cry for him and I.