• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

Dementia’s journey

Pusskins

Registered User
Jun 6, 2020
213
0
New Zealand
We are our own worst enemy, @Dutchman . I doubt very much that you're to blame for Bridget's dementia. I wrote a post earlier today about similar feelings of my own and received very good advice from marionq and Grannie G. The meditations of Marcus Aurelius were mentioned, one of which was : You have power over your mind - not outside events. Realize this, and you will find strength. I must follow this advice or as was also said it's a case of either sink or swim. Not giving advice here, just repeating what was said to me and I found it very helpful. I hope in time you can rise up from the depths of your despair.
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
i’m so so lonely. There i’ve said it and i’m almost afraid to admit it. It seems such a tainted word these days, almost dirty and unseemly. Oh he’s such a lonely person you might hear them say, he spent a long time talking.... i think he’s just lonely you know.

I don’t need to explain anymore to my fellow posters as you’ll all know what i mean. I certainly didn’t believe i’d be one of the lonely but here i am aching for company so i don’t have to get up every day to a empty depressing kitchen eating my breakfast alone.

Hardly any of my posts are worthy of a reply but i find a release in just writing it down.

Where are my old posters on here? Have i upset you or, as i suspect, you’ve just run out of things to say which is more likely. So Dutchman is still here stumbling through each day as miserable as ever. Am i allowed to have this self pity? i’ve been told by non grief carriers to snap out of it, stop ruminating, look forward, be brave, oh and a raft of other gee up advice. Yes, well, you try it,, see how you like it!

I now have to consider re insuring our little caravan sitting pathetically on the drive. It’s just a reminder of what we shared.

Forgive me for these emotions today. i feel a little less lonely when i’ve got it out there.

Peter
 

Agzy

Registered User
Nov 16, 2016
1,932
0
Moreton, Wirral. UK.
@Dutchman I feel for you and remember when caravanning solo with Pauline at home and able to look after herself how liberating my ‘lonliness’ felt and then I met, B, a fellow traveller with a motor home and who was my “neighbour” in Spain for 6 weeks. His wife suffered from Parkinson’s dementia and was in a nursing home in UK and no longer recognised him and so, like me, he travelled alone But, unlike me, was very lonely. We shared many a bottle of vino (probably too many) as he talked and talked of her and the times he shared with her. When we parted to go our separate ways I had a deep insight into how low he sometimes got although he said meeting me, a fellow solo traveller, had helped as all too often neighbours were couples and so close contact couldn't be the same. So I feel for you indeed And certainly no need whatsoever to apologise as TP can, to a small degree, be the fellow solo traveller for you albeit without the vino.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,980
0
Kent
Where are my old posters on here? Have i upset you or, as i suspect, you’ve just run out of things to say which is more likely.

I think you are right @Dutchman. People want to help but have run out of things to say.

So many of us left on our own have realised the only people who can really help us is ourselves. People can be understanding and sympathetic but your pain is your pain and no one can ease it for you.

We are all here to offer support but no one can make everything awful go away. Sadly dementia is here to stay.

I used to feel more sorry for my husband than I did for myself. His was the life tormented by dementia and all I could do as a loving wife was to give him as much care and attention as I could.

There are always regrets, we could have done better, but hindsight is cruel. It forgets how we were at the time.

Acceptance is the only way out. Accept what cannot be changed and change the things you can.
 

blackmortimer

Registered User
Jan 2, 2021
93
0
i’m so so lonely. There i’ve said it and i’m almost afraid to admit it. It seems such a tainted word these days, almost dirty and unseemly. Oh he’s such a lonely person you might hear them say, he spent a long time talking.... i think he’s just lonely you know.

I don’t need to explain anymore to my fellow posters as you’ll all know what i mean. I certainly didn’t believe i’d be one of the lonely but here i am aching for company so i don’t have to get up every day to a empty depressing kitchen eating my breakfast alone.

Hardly any of my posts are worthy of a reply but i find a release in just writing it down.

Where are my old posters on here? Have i upset you or, as i suspect, you’ve just run out of things to say which is more likely. So Dutchman is still here stumbling through each day as miserable as ever. Am i allowed to have this self pity? i’ve been told by non grief carriers to snap out of it, stop ruminating, look forward, be brave, oh and a raft of other gee up advice. Yes, well, you try it,, see how you like it!

I now have to consider re insuring our little caravan sitting pathetically on the drive. It’s just a reminder of what we shared.

Forgive me for these emotions today. i feel a little less lonely when i’ve got it out there.

Peter
Hello @Dutchman. I'm fairly new to this forum and have been reading through your posts with an ever-increasing feeling of "this could be me he's talking about". I had to call an ambulance last June when my wife, Margaret, who's been suffering with LBD since about 2015 at least became unmanageable and violent to the extent that I feared not such that she would harm me but that in trying to restrain her/protect myself I might harm her. She was in hospital until November and then transferred to a nursing home where sadly she will have to remain.

I have been through all the emotions you display - guilt, self-pity , leaving everything in the house just as it was on the day she left, asking why and, yes, floods of tears on a regular basis. I finding myself regularly going over the past 5/6 years, wondering where it all went wrong, chastising myself for all the things I should have done better, the times I should have been kinder, not got angry, accepted the position. But when you're so close to someone (we've been married 48 years) you don't believe that they won't in some way "come back", that's it's all a nightmare that you'll wake from, and that your remaining years will somehow be restored to you would have hoped for.

I know that the nursing home is the right place for her to be. They're very kind and caring. Like you I find such visits and occasional phone calls that I've been able to have distressing. She hasn't recognised me through the window and just walked off. She's become angry on the phone and told me to "go away and stop interfering in my life". The only upside is that perhaps she has in some way found herself a new life and inside herself she is happy. At least that's how I console myself and, who knows, it may be the case. Dementia is such a beast - it strips away everything
and gives back nothing. As you say, you think to yourself "this is what bereavement is" and hope that when the end comes you'll be prepared. Maybe, but I remain to be convinced.

People tell me regularly, that I mustn't feel responsible, that I couldn't possibly carry on caring (true I think), that "they" wouldn't allow me to anyway (again probably true as she's under a DOLS), that I should make a "new life" for myself, meet new people, all the usual things and I know they're trying to be kind but I can't make a new life, I don't want to meet new people, join a club or whatever. Anything like that would feel a betrayal. I can't move house, e.g. nearer to my children, because that would be a betrayal. So I do the housework, walk the dog, tend the garden and keep everything as it was when she went into hospital I suppose, deep down, I think there just might be a miracle and just in case everything must be ready for her to come home.

,I've gone on at some length, partly, it's true, because it helps me to talk to someone who has been down the same path but also because I would like to think that you might be helped by someone else recognising all the emotions you display and understands. You are not alone!

God bless.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
i’m so so lonely. There i’ve said it and i’m almost afraid to admit it. It seems such a tainted word these days, almost dirty and unseemly. Oh he’s such a lonely person you might hear them say, he spent a long time talking.... i think he’s just lonely you know.

I don’t need to explain anymore to my fellow posters as you’ll all know what i mean. I certainly didn’t believe i’d be one of the lonely but here i am aching for company so i don’t have to get up every day to a empty depressing kitchen eating my breakfast alone.

Hardly any of my posts are worthy of a reply but i find a release in just writing it down.

Where are my old posters on here? Have i upset you or, as i suspect, you’ve just run out of things to say which is more likely. So Dutchman is still here stumbling through each day as miserable as ever. Am i allowed to have this self pity? i’ve been told by non grief carriers to snap out of it, stop ruminating, look forward, be brave, oh and a raft of other gee up advice. Yes, well, you try it,, see how you like it!

I now have to consider re insuring our little caravan sitting pathetically on the drive. It’s just a reminder of what we shared.

Forgive me for these emotions today. i feel a little less lonely when i’ve got it out there.

Peter
Hello Peter, I always read your posts as I'm sure many others do! There are reasons why I don't reply so often: in every post I hear your grief and distress - I'd desperately like to post something that makes you feel better but that's beyond my superpowers. What I don't want to do is add another trite, unhelpful but well-meaning suggestion about taking walks, meeting new people or getting a pet.

I think @blackmortimer has hit on something - about keeping things going, not making changes, being 'ready' in case your wives return, even though you know that can't happen. And that to do these things would seem like a betrayal. You are both stuck in the cruellest limbo because the one you love is gone from you but not gone.

Not wanting to seem negative here but I really don't think it's possible for you to 'move on' right now. (And it won't be until...) That leaves you (as far as I can see, and as @Grannie G has said) with only one option really and that's acceptance. Because you cannot change things, you can't turn back time and you can't even know when this will end. You cannot make your lovely wife better or happier or have her relate to you as she always did for all those years. So many things you cannot change that are causing your heartbreak Peter. I really share your sadness though I know that doesn't help you. But, there are still things you can do, things you can change - never forget that.

I believe people need three things to be happy: something to do (i.e. some purpose), someone (or something) to love and something to look forward to. If you can put these things into your life, it helps, and don't dismiss the third one - it's really important. I have 4 cats and a tiny garden. I spent just 20 minutes outside yesterday cutting down dead stems and it looks so much tidier now. And I can see new shoots appearing. Though I'm currently feeling pretty low, it gives me hope, reminds me that life really does go on, even if not exactly the way we want it to.

I've waffled on - sorry! There are no easy answers Peter. But one thing we (on TP) can do is listen. And we won't stop.
 

Woo2

Registered User
Apr 30, 2019
3,486
0
South East
I too always read your posts @Dutchman but I do not feel qualified to make a comment as I have only lost a parent not a life partner . I do feel for you and wished I could help . We are here and listening honestly . X
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
as usual i’m blown away by the thoughts you’ve all taken time to put to paper. I’m always helped by how you can get to the nub of our problems and complicated emotions and this helps me see things in better perspective. There so much you’ve said that i’m going to take my time to take it in.

Bless you all, thank you

peter
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
I’m getting through each day as best i can like most of us. Some days are ok some not so good. It’s good to hear from you @blackmortimer and and the others that have been following me @Woo2, @Grannie G and @Jaded'n'faded and others that have been my companions on this awful journey.

I’ve got up, had breakfast, gone back to bed to read ( it’s warm) and will go out later for a walk with a friend. I’m getting a load of walking in!

Some of the overarching emotions that i feel, and i suspect others do to, are the feelings of regret and guilt for the things i did or didn’t do and things i said and the anger and spiteful things i said, in frustration i know, but said and done nevertheless.

All quite normal i agree but powerful and very hard to resolve. I need to be forgiven. The person i want to forgive me is my Bridget and she can’t do that now. So i need someone else because i can’t forgive myself. So i’m going to ask for forgiveness where i can find it. You maybe, but i wouldn’t be so presumptuous. My counsellor is someone i trust and i could ask her. I really do need this as it’s a burden i want to put down.

As i plan today i have to remember to visit Bridget even though i know it’ll bring me upset. The home have decided not to resume inside visits till mid April. In a way i’m glad because i think actually holding her and touching and speaking direct will mean i’m upset even more in different ways.

Bless you all, Peter
 

Woo2

Registered User
Apr 30, 2019
3,486
0
South East
I too feel full of guilt , regret and many other emotions , they don’t help me in any constructive way though, I have to switch them off and tell myself I am only human , I make mistakes and no one is perfect . You are a very caring person @Dutchman , that is abundantly clear , there is in my opinion nothing to forgive you for , maybe you need to forgive yourself and be as kind to yourself as you are to Bridget .
 

blackmortimer

Registered User
Jan 2, 2021
93
0
I’m getting through each day as best i can like most of us. Some days are ok some not so good. It’s good to hear from you @blackmortimer and and the others that have been following me @Woo2, @Grannie G and @Jaded'n'faded and others that have been my companions on this awful journey.

I’ve got up, had breakfast, gone back to bed to read ( it’s warm) and will go out later for a walk with a friend. I’m getting a load of walking in!

Some of the overarching emotions that i feel, and i suspect others do to, are the feelings of regret and guilt for the things i did or didn’t do and things i said and the anger and spiteful things i said, in frustration i know, but said and done nevertheless.

All quite normal i agree but powerful and very hard to resolve. I need to be forgiven. The person i want to forgive me is my Bridget and she can’t do that now. So i need someone else because i can’t forgive myself. So i’m going to ask for forgiveness where i can find it. You maybe, but i wouldn’t be so presumptuous. My counsellor is someone i trust and i could ask her. I really do need this as it’s a burden i want to put down.

As i plan today i have to remember to visit Bridget even though i know it’ll bring me upset. The home have decided not to resume inside visits till mid April. In a way i’m glad because i think actually holding her and touching and speaking direct will mean i’m upset even more in different ways.

Bless you all, Peter
You've obviously had, and are continuing to have a hard time @Dutchman. Only those who have walked in your shoes (and perhaps I am one such) can possibly understand. All the things you regret an need forgiveness for are the result of your kindness and caring, wanting to do your best, knowing that it's not good enough and venting your frustration on Bridget. I've been there. I know what it's like.

Many years ago a wise old priest once said to me something along the lines of "forgiveness doesn't have to be earned; it's there ready for you; all you have to do is ask and accept," Peter, you have asked;you are forgiven.

God bless
 

Everest1969

Registered User
Jan 9, 2021
42
0
it’s a burden i want to put down.
Hello @Dutchman , I'm new to this site and have just read your post. I'm so sorry to read how what you're going through. I'm on a steep learning path about this awful disease that a year ago I was quite oblivious to. Your sentence sums up perfectly how I feel; the need to lay down this burden, or 'get off the bus' for a while(which is how I often visualise it). I've no advice sorry, but just someone racked with a range of uncomfortable and stressful feelings. I'm glad to find a group that shares so much of the experience and has collectively, so much wisdom.
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
Oh dear, I’ve just done some sorting out of drawers and found a pile of greeting cards. One was from Bridget to me on my birthday in December, the December before she left for the home the following August 2019.

She was really struggling then but still recognised me as Peter her husband. In the card she just wrote “Bridget” in writing that was torn from the remains of what she could manage. Her name was scrawled and almost illegible but she really did try but her brain let her down and dementia got her again.

So I’m upset again knowing a woman who once taught English to my wife who struggled over every letter of a word. Evil doesn’t even come close.

peter
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
Hi everyone. good morning @Everest1969 @blackmortimer @Grannie G @Jaded'n'faded @Woo2 @Agzy @Pusskins and everyone else that replies to my posts ( anyone know how to include everyone in one go?)

Anyway, i’ve decided to try my best to give myself a one day break from fretting and crying and hurting over Bridget and see how it goes. It may not last long!

I had a long strenuous walk yesterday with family so that’s a box ticked so indoor stuff today. It’s Bridget’s birthday next week (75) and the home will spoil her rotten although she’ll not know why but she’ll know she’s special that day. I cannot fault the home in any way, in fact, they’re brilliant. Lucky us.

i’ve been reading back on some of your posts and appreciate more how we’re all drawn together by similar experiences. I thought i was so alone Bridget’s behaviour - time confusion, not washing or clothes changing, problems with the toilet and eventually not recognising me. All behaviour so common with dementia.

I’m still hurting myself by looking at pictures but i find i can’t stop doing it. And every night i dream Bridget is back with me fully recovered and we talk and have normal conversations only to wake to realise that i’m on my own again.

Love to you all Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,980
0
Kent
Oh dear, I’ve just done some sorting out of drawers and found a pile of greeting cards. One was from Bridget to me on my birthday in December, the December before she left for the home the following August 2019.

The last card I had from my husband was the birthday before he went into residential care. He wanted to get me a card but didn`t have the confidence or ability to choose one from the large selection in our local card shop.

I asked one of the staff if she would mind helping him choose while I waited outside.

He was there for a while and came out with a satisfied smile of achievement on his face. I told him `well done` and he answered, seeming quite shocked, ` It was £3.50! ` :)
 

blackmortimer

Registered User
Jan 2, 2021
93
0
I must say that I find going through drawers and coming across things like old greeting cards, photos and so on can be harrowing. The smallest thing can bring back such poignant memories of how it used to be so I feel for you @Dutchman. Now that Margaret is in a nursing home and I've sorted all the things that she needed and generally tidied up, I try to avoid opening drawers or looking in boxes where she used to accumulate things that were of interest or meaningful to her (she is quite a hoarder!). Some memories are just too painful.

God bless
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,354
0
High Peak
Hi everyone. good morning @Everest1969 @blackmortimer @Grannie G @Jaded'n'faded @Woo2 @Agzy @Pusskins and everyone else that replies to my posts ( anyone know how to include everyone in one go?)

Anyway, i’ve decided to try my best to give myself a one day break from fretting and crying and hurting over Bridget and see how it goes. It may not last long!

I had a long strenuous walk yesterday with family so that’s a box ticked so indoor stuff today. It’s Bridget’s birthday next week (75) and the home will spoil her rotten although she’ll not know why but she’ll know she’s special that day. I cannot fault the home in any way, in fact, they’re brilliant. Lucky us.

i’ve been reading back on some of your posts and appreciate more how we’re all drawn together by similar experiences. I thought i was so alone Bridget’s behaviour - time confusion, not washing or clothes changing, problems with the toilet and eventually not recognising me. All behaviour so common with dementia.

I’m still hurting myself by looking at pictures but i find i can’t stop doing it. And every night i dream Bridget is back with me fully recovered and we talk and have normal conversations only to wake to realise that i’m on my own again.

Love to you all Peter
I think this is a brilliant idea! Maybe you could start with one day a week when you do completely non-Bridget things. Perhaps if you see it in those terms, i.e. a 'day off' from the guilt and fretting, you will really be able to give yourself a break.
 

Dutchman

Registered User
May 26, 2017
1,046
0
73
Devon
Well I tried my best to have a non Bridget day yesterday and kept busy with house jobs. But the reality of Bridget’s dementia condition wanted to creep in all the time.

It’s not that I’m not convinced that’s she’s in the best possible place, being cared for constantly. I’m content with that side of things. I just go over and over how she suffered so much when she was here at home and how I was incapable of stopping her misery. Dementia took her reasoning, her capacity to love me and have compassion for me. Her desperate need to escape our home meant leaving me but she couldn’t understand what that meant.

It’s a strange thing though. When she first went into the home and I was able to be with her , she started to be nice to me. We even laid on her single bed together holding hands and she said she loved me, her Peter. Perhaps, being less stressed and anxious, she found a part of her able to connect.
Anyway that’s all gone now and she soon loses interest in my visits. Being in lockdown has damaged any hope of any further simple intimacy.

Well that’s my thoughts this morning. I hope you all have as reasonable day as you can manage

Bless you all, Peter
 

Bikerbeth

Registered User
Feb 11, 2019
1,904
0
Bedford
We can only ever try our best.
I do like @Jaded'n'faded suggestion of starting with just one day off a week.
If it does not work then don’t feel bad about it just wait until the following week to give another go.
Everyone is different and we all deal with the pain and guilt differently