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Dementia’s journey

Stacey sue

Registered User
Jan 24, 2020
71
Hi, yes definitely, It is a help.I fell out with our daughter because she thinks I should be excepting of the situation, few people know how It messes with your head. SSue. X
 

Dutchman

Registered User
May 26, 2017
821
Devon
yes i know. My daughter want me to “get on with it”. she even used the term “wallowing “ when i spoke of my upset and heartbreak. I just don’t think they have a clue about how it is to live this thing day after day and the years of decline you and me had to cope with. When i asked her what if it was her husband she said “ seeing it coming she would have made preparations accordingly “ I mean, talk about clueless.

It impacts on their busy lives and they’d rather it didn’t and sort of want us to keep it at arms length from them so it doesn't bother them. Perhaps i’m being too harsh but that’s how it seems.

I bite my tongue with people sometime for the sake of harmony and grieve in private. There’s only a very few i know who understand and they are there for me. All the Forum in fact.

Bless you

Peter
 

Stacey sue

Registered User
Jan 24, 2020
71
Yes I agree, my daughter said I get upset for the sympathy vote??? How could you make preparations accordingly?? I think It’s easy for them to just carry on with their busy lives. Out of sight out of mind!! X
 

Woo2

Registered User
Apr 30, 2019
2,786
South East
Can I butt in here ,That’s quite harsh from your daughter @Stacey sue , I would say that is ignorance speaking , my dad cared for my mum and i tried to support him but probably not as well as I could have , I did have my mum for a couple of days a week to give him a break and moved in with her when he was in hospital but it wasn’t until he died unexpected and I moved mum in with me that I realised just how hard it was for him and how much more I could /should have done , we did talk every day and as he grew weaker I did more but I didn’t really know how else to help /support him as he never asked for help and saw it as his personal responsibility to care for Mum . He was very stubborn and wouldn’t let me do much more as he felt I needed to live my life and I had a young family and full time job l, am just trying to explain how it was for me, maybe your daughter just doesn’t know how best to help /support you , it’s only really once you experience it that you can really appreciate it .hope you and your daughter can work things out . Take care .
 

Dutchman

Registered User
May 26, 2017
821
Devon
How can anyone hope to understand and empathise with grief in all its forms without going through it? I never thought i would grieve so much for losing Bridget to dementia. Even when she refused to recognise me as her husband the wounding had already started long before that, so I was devastated that weekend but not completely destroyed.

I would never want anyone to go through our grief but, of course, one day we all grieve in one form or another.

peter
 

Dutchman

Registered User
May 26, 2017
821
Devon
it would be very tempting to have it out with my daughter but i’m wondering what it would achieve. She has been there for me on occasions and do i really want to add to my already fragile emotional mood.
 

Stacey sue

Registered User
Jan 24, 2020
71
No definitely not! My daughter is a critical care nurse, perhaps it has hardened her view of life and death? I think we need family at this time, I would never fall out with her, I love and need her. X
 

Hayley JS

Registered User
Feb 20, 2020
83
Hi @Dutchman and @staceysue, I'm so sorry your daughters are not able to support you at such a difficult time in your lives. I'm sure their intentions are all for the good, but that doesn't help if their comments are hurtful to you. I'm the daughter here, full time carer for my widowed mum, invisible brother and step siblings. Recently there has been a fallout between myself and mums relatives, she's oblivious to this, but they haven't contacted her for a month now. This hurts and angers me, why should a row with me impact on mum? But that's not my point... The row was caused by comments made to mum and then how I was spoken to when I challenged it. So I suppose my point is family seem to think they can cross social boundaries and say whatever they feel in a way they would never entertain with anyone else. I'm sure I've been guilty of this myself many times over the years. I don't think it's worth challenging, I tend to think let go and let God and a big fat thank-you to this forum and all its members for sharing the good times and the bad and giving us the comfort of knowing we are not alone. Best wishes to you both.
 

Dutchman

Registered User
May 26, 2017
821
Devon
i’ve just got back from a visit to my daughter and husband. Nice meal out and chat and altogether relaxed. I remembered to mention Bridget from time to time and we talked around the subject because of Covid and different things that i brought up that felt important.

I thought on the way home how i can put Bridget to one side when in the company of other people but then have a lurching of my stomach when i realise what i’ve done. I fear i will begin to have less intense connections with her, that this absence strains an already fragile relationship and Im trying to keep my personal grief and the rest of my life separate

And most of all what happens when i realise that i’ve began to remember her less and less. There is little connection there now as she doesn’t react to me much and I’m advised to construct a life of my own now. I don’t want her to become just my wife in the care home and i get on with other things.

I suppose what i’m trying to say awkwardly is that i don’t want to lose the intensity of remembrance of her as time goes on and we are more and more apart. But i can’t see how this can ever be avoided. Bridget’s dementia has made her lost to me anyway and it’s me who wants to retain those precious memories and feelings we had.

Peter
 

DianeW

Registered User
Sep 10, 2013
762
Lytham St Annes
I think what you want can’t be achieved...but that’s not to say you are going to forget her or her not be the focus of your world!!

She is very much still in your life, different to how you hoped, but that’s the disease and can’t be changed.

You absolutely have to let go of the deep grief and release some of the intensity when remembering her, because that will keep you enveloped in grief.

You will find a balance between always having the love and care for Bridget, missing her as she once was, and allowing yourself to continue to live a different life.

I think the grief and sense of loss is always with you, but as time passes you learn to find a way of living differently.....your memories are always there, some upsetting and some will give you pleasure.

Take care of you x
 

Jaded'n'faded

Registered User
Jan 23, 2019
947
High Peak
I just wanted to say that the experience of grief is different for everyone.

@Dutchman - Peter, you can't assume that because your daughter appears not to be experiencing things in the same way as you that she cares any less. You hate her judging you and yet you are quick to judge her...

Sorry if this sounds harsh but that's what I am reading in your posts. Your daughter has a family and (no doubt) a busy life so she needs to maintain a semblance of normality. You do not have those constraints and can grieve as you wish. I'm sure your daughter feels a sense of relief that 1) your wife is being cared for 24/7 and 2) that you no longer have to do the hands-on caring so she's probably somewhat less worried about you too. Won't you allow her that? She obviously cares about you immensely.
 

Dutchman

Registered User
May 26, 2017
821
Devon
You’re absolutely right. I needed to know this. Thanks

while on I’ve had this idea of printing off all my posts and replies into a file for ease of reading. Anyone else thought about this? Not sure if it would benefit me but could be worth a try as I’ve time now to do it.
If you have done it what’s the easiest way? Just taking it easy now after an early bike ride
Peter
 

big l

Registered User
Aug 15, 2015
52
At the moment I am having counselling Dutchman because I couldn't stop going over and over and over (and over) what might, should have been if only we had, he had, I had. I tormented myself and it almost became a 'comfort' to deprive myself, to self harm. My councillor - not immediately of course! introduced me to the idea that I was indulging myself, wallowingfin this blanket of sorrow because it was 'just and fitting'. Self indulgence. No I can't tell you how to STOP, only that if you don't it will destroy you, and you will not be there for Bridget at all. It's a cross between self harm and self indulgence. Hard to come to terms with, but why aren't you seeking help Dutchman? Ask yourself that.
 

Dutchman

Registered User
May 26, 2017
821
Devon
I’ve seeked help and had a number of counselling sessions and prior to lockdown was promised 6 more. Everything stopped. The counselling was withdrawn. (Counselling for Carers through the GP)

I’d probably go back to the same counsellor given the opportunity but she’s not working now because of Covid. We built up a good relationship. To start again with someone new is not something I want to do. Done the drugs from the doctor....waste of time. The help I find most accessible is here, on the Forum.

Im interested, where have you found the counselling service, unless it’s private ? I initially went private but it wasn’t carer based and cost £80 a session

Thanks for the comments. Peter
 

Dutchman

Registered User
May 26, 2017
821
Devon
you are saying exactly how I feel. It is comforting to know I am not alone. X
Stacy Sue. when will it ever end ? To you i’ll say that for some reason i’m finding it very hard today to even begin to come to terms with Bridget‘s dementia and the loneliness of it all has enveloped me. I mean, what is the point of me going to the home, to try and connect with Bridget. She doesn’t remember me going. She doesn’t remember me as her husband , so what use am i ?

Many have said that she still feels for you in her own way. Does she? That i’m here to make sure she’s ok, well the home do that as i trust them and pay them to do. I want and need to comfort her and can’t and every time i go it twists the knife again, so what’s the point.

So when will it ever end? Probably never. I just can’t make sense of any of it. Many have also said that we all grieve in our own way, well I don’t think i’m doing a very good job of it.

Im sorry to all if this all sounds defeatist but at the moment i just don’t know where to turn and sorry Sue if none of this has comforted you but i invite you in turn to unload.

Love to you , Peter
 

Dutchman

Registered User
May 26, 2017
821
Devon
At the moment I am having counselling Dutchman because I couldn't stop going over and over and over (and over) what might, should have been if only we had, he had, I had. I tormented myself and it almost became a 'comfort' to deprive myself, to self harm. My councillor - not immediately of course! introduced me to the idea that I was indulging myself, wallowingfin this blanket of sorrow because it was 'just and fitting'. Self indulgence. No I can't tell you how to STOP, only that if you don't it will destroy you, and you will not be there for Bridget at all. It's a cross between self harm and self indulgence. Hard to come to terms with, but why aren't you seeking help Dutchman? Ask yourself that.
You know what, i understand exactly where you’re coming from. It certainly is a comfort in an odd way to mentally self harm as a way of rationalising why i placed her into the home. Almost punishing myself to make it right. I wish I could stop thinking this way. Its been suggested that i turn it around, to imagine what my wife would say if she could. Trouble is i can’t imagine.
 

Stacey sue

Registered User
Jan 24, 2020
71
Hi Peter, I think we are grieving for our partners as they were, because we can’t visit and spend time with them ,we just remember the good times. Dave walked out of our house into a mental health hospital,and our experience was horrendous,he deteriorated massively ,so much so he had to go into a nursing home. The guilt I feel for this upsets me every day. He loved me more than anything, and I can’t be there for him now.!! I can not move on without seeing how the dementia has
progressed. I am sure if and when I can visit I will eventually except that he is just a shell of the man I love. I think it is so much easier for Bridget and Dave than it is for us, that’s a comfort for them not remembering there lovely life they had? I know exactly how you feel because I feel the same. I am here for you too. SSue.x
 

Grahamstown

Registered User
Jan 12, 2018
1,724
80
East of England
You’re absolutely right. I needed to know this. Thanks

while on I’ve had this idea of printing off all my posts and replies into a file for ease of reading. Anyone else thought about this? Not sure if it would benefit me but could be worth a try as I’ve time now to do it.
If you have done it what’s the easiest way? Just taking it easy now after an early bike ride
Peter
I have looked back and found it painful but it did remind me of how difficult I found looking after my husband. He died in February and at first I was looking back to see what I was thinking back a year ago but that was awful. I don’t feel the need any more. Everyone is different and I think you have to work your way through feelings to find the way out of a really dreadful situation. I have just got a new puppy and the training is keeping me busy and away from dwelling on the past, and present for that matter. I know you had difficulty with the dog, perhaps because the time was not right. Keep going Peter, you have suffered from the awful situation of having lost your wife to dementia but you are alive and must live. Sue xx
 

Dutchman

Registered User
May 26, 2017
821
Devon
You’ll be glad to hear, after the encouragement, that i’ve arranged to see a counsellor next Monday. Didn’t think there’d be someone available so soon or at all given the stress we’re all going through with Covid.
im hoping we can clear up some remaining issues ( you all know my innermost thoughts by now) and her fees are reasonable. Fingers crossed.

im really a cat person. Never been without one since 1969 so who knows, i might get another. The poor little chap i got in 2019 was returned as i couldn’t emotionally look after him....i couldn’t look after me! I’m sure Bridge would approve as she loved cats too. There i go again wanting her approval. Bizarre or perhaps not! xx
 

Dutchman

Registered User
May 26, 2017
821
Devon
Hell
Hi Peter, I think we are grieving for our partners as they were, because we can’t visit and spend time with them ,we just remember the good times. Dave walked out of our house into a mental health hospital,and our experience was horrendous,he deteriorated massively ,so much so he had to go into a nursing home. The guilt I feel for this upsets me every day. He loved me more than anything, and I can’t be there for him now.!! I can not move on without seeing how the dementia has
progressed. I am sure if and when I can visit I will eventually except that he is just a shell of the man I love. I think it is so much easier for Bridget and Dave than it is for us, that’s a comfort for them not remembering there lovely life they had? I know exactly how you feel because I feel the same. I am here for you too. SSue.x
Hello Sue.

I went to see Bridget today at the home and we sat facing each other in a specially made cubicle, her on one side of the glass, me on the other. It was strange at first sitting easily, seeing her almost being next to me. It made it easier to spend just a little more time with her. I know i probably shouldn’t of but i couldn’t resist asking her ‘“who do you think i am“ and she looked quizzically at me and i held back the tears and said “ i’m Peter” with a forced smile. She lost concentration after a while. So much gone. So much memory damaged. Bridget really is empty but, as you say, probably easier for her.


peterxx
 

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