Dementia’s journey

[AliceA]

Good!!! X

Thanks everyone. I feel humbled by your responses.

ok, I won’t go. Bless you all. Peter

 

[AliceA]

Good!!! X

 

[Dutchman]

Has anyone else thought of printing your posts and replies out and making a file to keep so you can flick through. Is it easy enough to do

 

[Woo2]

No idea but it is a good idea , helpful to look back on , can be a faff going back to re read earlier posts , glad you are staying ? .

 

[Dutchman]

Making a file up of all your correspondence on TP isn’t easy. Just need to go into each thread and print. Oh well I’ve lots of time..

keep well

peter

 

[Woo2]

Hope you have enough paper and ink !

 

[Dutchman]

Perhaps I won’t print off after all. As long as the posts remain on the site then I can get at them.

today is dreary, rainy and dull. Can’t go out, well I could, but I don’t actually need anything. I’ve actually only just got up (11.30) as no one needs me to do anything.
I spoke to an Admiral Nurse last week after a particularly emotional visit to Bridget. She asked “what would actually make you feel better that is doable “. I really didn’t have a clue at the time. I do think that the absolute honest answer is that visiting upsets me and I wish I didn’t have go. It upsets me more than it does Bridget. Of course that only means one thing. And that’s why I lurch from one emotional upset to another.

She suggested not going quite as often for a month as an experiment to see if Bridget is the same, to continue phoning everyday to keep in touch. I could try that .

Anyway, I manage each day somehow.
Bless you all
Peter

 

[Louise7]

I think that taking the advice of the Admiral nurse and trying to cut down on your visits would be a good thing, particularly as at the moment it's just a case of seeing Bridget through the window. I know it's hard during the lockdown but is there anything else you can do to keep busy/occupied? It's been difficult to get out of the routine of visiting my mum, and I can't even see her through a window as she's on the second floor, but at the times when I would normally be visiting her I'm keeping busy by clearing out my cupboards and also decorating or gardening. I understand that finding something to keep your mind off things might be really difficult but try to give it a go if you can.

 

[Grahamstown]

Has anyone else thought of printing your posts and replies out and making a file to keep so you can flick through. Is it easy enough to do

When I have these conflicting thoughts about my husband, who died three months ago, I look back at my posts of a time when I was posting a lot to relieve my thoughts and pain and I find that I am taken back to that time which I would never wish back. It helps me by putting all these thoughts into some sort of perspective. I do now remember him at a time when he was so well but that is painful too. There is no easy way. Your wife sounds contented by your description and maybe that can help you to achieve some kind of peace. Kind wishes to you in your pain and go easy on yourself - Sue x

 

[Dutchman]

When I have these conflicting thoughts about my husband, who died three months ago, I look back at my posts of a time when I was posting a lot to relieve my thoughts and pain and I find that I am taken back to that time which I would never wish back. It helps me by putting all these thoughts into some sort of perspective. I do now remember him at a time when he was so well but that is painful too. There is no easy way. Your wife sounds contented by your description and maybe that can help you to achieve some kind of peace. Kind wishes to you in your pain and go easy on yourself - Sue x

Hi sue.

You know, if it’s not for the people on TP like yourself and everyone’s kind and insightful comments I would have crumbled months ago. This is literally my lifeline.

I’m very lonely. Why wouldn’t I be. I look at pictures of Bridget when she had early dementia but we still had some sort of relationship. I’m hurting because I suspect me being on my own is it now. After 29 years together you’re hard wired for each other.

To be honest I visit the home to maintain some sort of connection for myself and for whatever’s left of Bridget’s feelings for me. Bit like an old dog pining for his dead master. But Bridget's feelings for me are probably ( how can we ever tell) not as raw and painful, anyway I hope not.

Sometimes there are no words to describe our emotions, they go too deep.

Thanks Sue for your reply

peter

 

[Dutchman]

Well, I’ve got through another day and I’m in bed nice and warm. Spent too long looking at films.

I’m visiting tomorrow and taking some fruit and flowers. I’ve mentioned this before that I dream in some detail. Even sleeping I can’t escape the situation. It’s always the same. I’m talking to Bridget as though she is normal , pre dementia, and I’m upset that she’s got to go back to the home. And she doesn’t understand either and I wake up upset.

It’s torture and there’s no escape

Peter

 

[Grannie G]

Wishing you a dreamless sleep Peter.

Many people I know, myself included are having more dreams than usual during this pandemic. We are all putting it down to anxiety.

You have double the anxiety, your wife in residential care and even more separation than expected thanks to coronavirus.

 

[Dutchman]

Thank you Sylvia,

it’s not that I don’t sleep it’s my brain trying to sort stuff out. Not only am I separated from Bridget I also have health concerns of my own and I’m taking hormone tablets to stop any more cancer growing in the prostate while I wait for surgery. And there’s Covid 19 of course.

There’s a lot for me to cope with. Spoke again with an Admiral Nurse yesterday and she was pleased I’m going to the home less regularly. When I visited the home yesterday I looked at Bridget through the window and after saying hello, blowing kisses, she said “ I don’t know what to do”. Why would she ? All we can do is see each other and what am I achieving, very little..

I really do need to cut myself some slack. I’m ordinary and don’t have special qualities to manage all of this.

Thanks for the support of TP, Admiral Nurses and massive thank you for the NHS.

peter

 

[Dutchman]

I’m not sure why it is but I’m feeling more and more unhappy and lonely lately even though more time has gone by since Bridget has been in the home. I sense that people I meet have an expectation that I should be getting used to it by know. They have their lives I have mine.

The reality is that our home is not complete and I almost feel like an intruder, that I shoved Bridget away into the home for my own peace. I read of some posters feeling suicidal and that gives them comfort. I can almost understand that.

This is my journal where I can unload the way I feel so forgive if I go over and over stuff. I try to put myself back into the bad dark old days when Bridget was at her worse but the unhappiness then and unhappiness now don’t balance out. I’d like to be convinced that things have to be, on balance, better now I don’t have the stress of the dementia behaviour. But life’s not like that is it!

Peter

 

[Grannie G]

These expectations are stereotypes Peter. We are human and have the right to our feelings.

 

[Woo2]

It is exceptionally hard at the moment with lockdown, I have people around but I do feel lonely too, I am a very sociable chatty person and I miss the company of others enormously . It seems perfectly normal to me to feel the way you do , Sending you a big virtual hug ?

 

[Grannie G]

On my way home from my walk today one of my neighbours was in his drive and we were able to have quite a chatty catch up. It was so lovely to have a face to face chat with a neighbour. I only passed two people while I was out walking and even though we greeted each other they were strangers.

 

[Dutchman]

It is exceptionally hard at the moment with lockdown, I have people around but I do feel lonely too, I am a very sociable chatty person and I miss the company of others enormously . It seems perfectly normal to me to feel the way you do , Sending you a big virtual hug ?

Hi Woo2

i dont think we’ve spoken before so thanks for your reply. I’m particularly upset this morning, you know, lonely and missing Bridget .
I’m torn between visiting and not visiting. I miss seeing her but when I go it’s upsetting seeing what’s become of vibrant intelligent wife. So I go home upset. It’s just an up and down nightmare. And it’s an experience that no one else can take away from us.
I see very little point to anything sometimes and can stay in bed till hunger gets me up. I just don’t do being on my own at all well.

TP gives me support and comfort

bless you
Peter

 

[kindred]

I’m not sure why it is but I’m feeling more and more unhappy and lonely lately even though more time has gone by since Bridget has been in the home. I sense that people I meet have an expectation that I should be getting used to it by know. They have their lives I have mine.

The reality is that our home is not complete and I almost feel like an intruder, that I shoved Bridget away into the home for my own peace. I read of some posters feeling suicidal and that gives them comfort. I can almost understand that.

This is my journal where I can unload the way I feel so forgive if I go over and over stuff. I try to put myself back into the bad dark old days when Bridget was at her worse but the unhappiness then and unhappiness now don’t balance out. I’d like to be convinced that things have to be, on balance, better now I don’t have the stress of the dementia behaviour. But life’s not like that is it!

Peter

Peter, please remember the shocks you have lived through and you know I say this with fellow feeling. First of all deteriorating dementia fills our daily lives with shocks, then moving our loved ones to a care home is hell of a shock as is seeing them there in that context. That’s kind of where it stopped for me as Keith died, but you are also facing the shock of lockdown for yourself and for the home situation. These are all traumas and shocks and any one of these could floor us.
Please remember this and do not be hard on self. Please. With love, kindred.

 

[Jaded'n'faded]

I think you have given Bridget the most loving, generous and selfless thing you could - a new life that gives her comfort and constant care. Even though you wanted to keep her with you, you knew she needed more now and you selflessly sacrificed your precious life together so that she could have what she needs.

You have done a wonderful thing.