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Dementia’s journey

Woo2

Registered User
Apr 30, 2019
2,229
South East
You aren’t weak at all, you are human . Sometimes we allow that guilt monster more room in our mind than we should , other times we can boot him off . It’s a bumpy road we travel .
 

Hazara8

Registered User
Apr 6, 2015
486
T
I know what i’m currently feeling is seen as illogical and i’m advised not to dwell.

I have this strong feeling of blame, that I somehow was the start of the cause of Bridgets vascular dementia. The reason i say this is i've often thought of an accident Bridget had some 21 years ago for which i was largely to blame. She fell off a ladder which i hadn’t checked to be secure and moved out of the way as she fell so as not to get hurt myself. There you are, thinking of myself again.

Our daughter mentioned this today and it made me think that, although no one really knows what causes dementia, and there are certain contributory factors, an accident
like Bridgets could have been one of those causes.

I can’t put the past right but it gives me regrets and guilt which are not not going away

Peter
One, if not the most fundamental factor in all of this, is the problem with past/memory. It can wreak havoc on the heart and mind and yet, in reality, no longer exists. The leafing through the photograph album is often seen as beneficial, restoring what was good and happy times. With dementia ( a damaged brain and mind) this can bring about a kind of " comfort" or a moment of release from confusion and anxiety, much like a familiar tune or colour or a particular voice.
But with capacity and being free of the scourge of dementia, the past can prove to be a menace because it is non-existent, cannot be changed and simply lives in the mind's eye with all its doubts and its and buts, an alien concoction in a mind living in the now. Therein lies the fundamental conundrum. So, what is to be done? Deny it, fight it, try and replace it? None of these things will resolve the dilemma. Only FACTS have meaning. All the numerous debates over past events, trials and tribulations which we hear of day in and day out, whether about slavery, historical misdemeanors or even the awareness or lack of on respect of Covid-19 -- all of it is in actual FACT dead and gone. So the "now " is all we have. As you draw in a breath that very act has to be " now ", not even a micro second before nor after, but NOW. This is where we are. This is where our loved one is also. With dementia that " here and now" can be seemingly a permanent thing. It is an irony, but perhaps a " positive" irony, that when one waves goodbye to a loved one living with dementia, they can immediately continue their life without angst or sentiment or tears borne out of separation or solitude . It is probably the most important credo in the world of dementia per se, the term COMFORT. Enabling that at every moment, the ultimate and best practice found in the good Homes, must be seen as wholly positive. Are they content, are they being properly cared for and protected, are they in essence "happy ". These things being in place, then it remains for us to look very closely at ourselves. Which part of " me " evokes sadness and grief. Which " image" brings about all of that. Does my imaginary scenario exacerbate that pain, that regret and make for perpetual angst and sorrow.

As with the reality of NOW and it is literally a truth - the happy events, the joy and mutual love of a relationship which are now the past, nevertheless were as real in their " now" as our own ""now" being lived out. None of what has gone before can be ever changed because it took place. Therefore the happiness of that time as with the darker moments, at that moment, was the reality and truth.

With this pandemic and the restrictions involved, makes for challenging times and visiting a loved one moreso. But if one can come to terms with what is a reality which can never ever be changed in fact and not even in mindful or wishful thinking which is mischievous , then perhaps a genuine sense of well being will come about. The dementia journey for those who are acting as Carer for a loved one can be the most challenging and heartfelt journey taken in a lifetime. On here there is ample testimony to that fact. Thus we are not alone. And maybe this journey makes for a deep and abiding awareness of just who we are, in a rather violent and confused world, which devotes so much of it's time to both the trivial and the self.

My warmest wishes.
 

Lirene

Registered User
Sep 15, 2019
184
Please don’t blame yourself Peter. Accidents happen to everyone no one goes through this life accident free it’s part if our life’s rich pattern. Everything that happens on this Earth is man-made by us, every event - be it war, famine, floods, fires, earthquakes, hurricanes disease, pandemic, dementia are all attributable in one way or another to ourselves as human beings. Pollution, wars etc etc minds old and young not being able to cope with life itself and just shutting down - dementia, a mind just overwhelmed, the wiring may be jumbled but the person is still there - somewhere.
You name it we as humans do it and abuse it. We rage against everyone and everything, our world is angry and everything that happens shows how angry it is and we are.
We do it ourselves, we blame everyone and everything but it is us, it is all man-made by us as humans. It’s not your fault Peter it’s the fault of life. But it is life Peter, the only one we have in the only world we have. Bridget would never blame you, as you would not her. She would never want you to blame yourself either.
None of us know what life has in store, that is how the Lord made it because if we did know we would never be able to live a life or save a life. You must live your life and Bridget hers - together but just slightly apart, who still love each other and know that they do, but just shown in a different way, still thinking of each other but just in a different way.
Life is very different from how we imagined but all the blame will get you nowhere, be calm be gentle, help everyone where you can but always be there for Bridget, the person who you would give your life for - she only has you.
This is our hell - on earth.
My prayers for you and everyone xx
 

Dutchman

Registered User
May 26, 2017
706
Devon
I’m coping, just.

I’m beginning to feel better now knowing that Bridget is well cared for and oblivious to the troubles outside. However, that comes at a cost to me because when I feel better I also feel as if I shouldn’t. Guilt again.

I tell myself why should l sometimes feel at ease when my lovely wife is away from me, when I don’t feel or can’t feel like crying because I miss her. Just numb, with my emotions wrung out over the past years?

Bless you all
 

Dutchman

Registered User
May 26, 2017
706
Devon
I’m getting hard to it all out of necessity but I’m fighting it because for some reason i don’t want to lose the heartache and sadness that Bridget’s dementia has brought me. Is that weird? I’m also afraid that this prolonged absence is going to inevitably make her distant to me. One hell of a difference from being with her for 30 years to 10 mins 3/4 times a week. Do we ever get used to being alone?

When we’re finally allowed into the home i’m going to be scared of that first meeting. All this time with no touching, when all I want to do is envelope her in my arms and whisper i love you.

Peter
 

Dutchman

Registered User
May 26, 2017
706
Devon
Well i got my wish. I’m back with heartbreak and crying. Just when I thought I’d gotten over the worse I go to see Bridget in the home and she comes to the open window. She immediately mouthed my a kiss and her face brightened when i passed through some flowers. Coming in she said?... and i said i can’t. Come again soon she said and i lied and said i’ll come tomorrow. Everything seemed so normal but it’s not, far from it.

I really thought i was adapting to the distance between us then I’m hit like a sledgehammer when i see my lovely wife of 30 years before me again. And it’s only last Saturday i saw her.

It’s all somehow so unreal living our lives like this. And i have to do this mostly on my own.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
52
I agree, this is so hard not being able to touch and hold!! I can’t wait for that visit, I am sure it will make a small difference to him? Like to think that he will know we haven’t abandoned him? At the moment I am sure he thinks the Carers are his family. Must admit that upsets me ,but is lovely for him. I hope not too much longer,but am not holding my breath.. your not on your own Peter. x
 

Dutchman

Registered User
May 26, 2017
706
Devon
Hi Sue

Is it wrong that I’m getting used to this loneliness? As I don’t have a choice I’m finding I’m more and more gritting my teeth and trying to be stoic about it all. Its a coping strategy I know but it hurts so much, as you know, when we’re just human and hurting, and i’m tired, really tired, of feeling rubbish a lot.

It’s a sort of compensation that our loved and dear ones are content in their homes but it gives me little comfort being without her.

i’m always here for you xxx
 

Dutchman

Registered User
May 26, 2017
706
Devon
I’m still awake when usually, by this time, i’m off to bed. Im thinking that my daughter wants me to get a dog as a companion and i’m not sure. There’s no quick fix to lonelliness and a pet is an easy answer but one not to be rushed.

In a way it’s another confirmation that Bridget is not coming back to me and my companion of some 30 years is lost to me, as if that was another life that we both had, and of course it was. I rage against the reality that Bridget now not only doesn’t recognise me as her loving husband but i’m told is quite happy in the home and has a new family.

Bless you all

Peter
 

Dutchman

Registered User
May 26, 2017
706
Devon
I decided to go on a main shopping visit this morning. The journey took me me right past where i would normally turn off for Bridget’s care home and I could have quite easily turned off but decided not to as every time i go i get upset. I’ll go tomorrow instead.

I’m becoming a bit of a coward when it comes to visiting as i’m finding i’m not really getting the comfort and satisfaction i want from seeing her. Is that hard and selfish? To be honest, because Bridget’s unable to return my feelings, it’s becoming more of a duty to the one i love unconditionally. I never thought it would come to this !

Bless you all

Peter
 

Scraggy mag

Registered User
Oct 30, 2018
29
My husband is still at home with me but you only give and nothing comes back it is so hard when they gave been loving partners for years but you have to look after yourself now you cant change what's happening .be selfish and take care of yourself do what makes you happy .I dread the time when I have to put my oh in a care home but I know it will come and I hope I can deal with it and try to enjoy life . It is so sad take care
 

Stacey sue

Registered User
Jan 24, 2020
52
Hi I have to go and visit as hard as this is through the window, I find it cruel for me and not so much hopefully for Dave, but I have to see that he isn’t like I remember him? Otherwise I would have him out of there. No two days are the same, It seems life has stopped for now, Don’t want to think about future without him. God bless xx
 

Dutchman

Registered User
May 26, 2017
706
Devon
I went this morning to see Bridget and of course i was upset as usual see her and not being able to touch.

It’s becoming apparent now that she is happier now in the care home than the awful time she spent here wanting to escape and extremely unhappy, confused and anxious. It was a living nightmare for us both.

I spoke again to an Admiral Nurse as i often do after one of my visits and she said that you’ve done the kindness thing i could have done, so that your wife can be settled and content in her dementia world.

I guess that’s probably true but it’s taken nearly 12 months of agony and heartbreak to go anywhere near appreciating what the Nurse has said. Being on my own now is something i’m not adapting to anyway easily. It’s sucks!

Bless you all

Peter
 

Dutchman

Registered User
May 26, 2017
706
Devon
i’m sitting in the quiet and late evening trying to not get upset over losing Bridget to dementia. I’m in self preservation mode at the moment but i can’t keep it up for long.

I almost convinced myself this morning that things were improving for me but all the photo albums on the shelf, not opened for 12 months now, remind me of our good time’s and i get no comfort from this. How do we resign ourselves to the tremendous heartbreak we feel, so personal and intimate?

Perhaps we never ever recover from losing the one we love. Even having experienced all the dementia problems doesn’t, in the end, diminish our love that remains.

i’m off to visit Bridget tomorrow and who knows how i’ll feel......numb, nervous definitely, upset always,

Peter
 

Dutchman

Registered User
May 26, 2017
706
Devon
Hello everyone. Went to see Bridget this afternoon but It’s really the wrong day as the they’re short staffed and busy extremely busy.

Anyway i said i love you and she said it back. Always loves the flowers i take and i also include a pretty card which i trust the staff read to her.

Then she just turns around and walks away which is good for me as i know she doesn’t hanker after me and fret. Still i want her love and cannot it get back from her.

No wonder i’m become more or less hardened to it otherwise i’d be a mess

Peter
 

kindred

Registered User
Apr 8, 2018
2,457
Hello everyone. Went to see Bridget this afternoon but It’s really the wrong day as the they’re short staffed and busy extremely busy.

Anyway i said i love you and she said it back. Always loves the flowers i take and i also include a pretty card which i trust the staff read to her.

Then she just turns around and walks away which is good for me as i know she doesn’t hanker after me and fret. Still i want her love and cannot it get back from her.

No wonder i’m become more or less hardened to it otherwise i’d be a mess

Peter
Peter, I always read your posts and feel with you all the way. That is lovely about taking the flowers and the little card. Of course you still want her love. You are such a good man and your posts encourage and help others to talk openly of their loss and pain. This is so valuable. Family visits are happening more now, by appointment, in the nursing home where I volunteer. These are so vital.
Thank you for keeping us in touch the way you do.
warmest, Geraldine
 

Dutchman

Registered User
May 26, 2017
706
Devon
hi Kindred. Thanks for the kind comments.
Can’t see the value in not being honest when we all share in soom ways the feelings of heartache and separation from our loved ones.

I wake each day thinking about Bridget doing the same, now separately, when we used to talk together about what the day might bring and have that companionship. Now someone else wakes her, gets her ready for another day in her dementia world. I have a sort of routine in the morning to get me up otherwise i probably wouldn’t see the point in getting up. I suppose i’m lucky that i have a caring family, friends and neighbours, and the Forum for support.

The home are telling me that she goes into other bedrooms and gets into the bed . Ok, but difficult to find her if she’s not been seen for a little while. Frightening if the residents are still in the room!! They said they are handling it and not to worry. Nothing i can do about it anyway is there? That’s dementia for you!
Bless you, Peter
 

Dutchman

Registered User
May 26, 2017
706
Devon
It comes suddenly.

I’m standing there washing the dishes this evening when I get this sinking feeling that I’m alone doing this just for myself. But that’s not it, what really gives me an awful feeling is that Bridget won’t be here forever and i’m going to have to face life completely without her.

I’m assuming that dementia and it’s complications will finally take her from me. And although i try not to look too far into the future , it’s my nightmare waiting to happen. If i’m finding it difficult to manage my feeling now what’s it going to do to me when the time comes?

And although the past few years were extremely difficult for us both i still see her as she was before dementia and tend to live off of those memories . Bless her, she never asked for this cruelty and i can’t even comfort her, just say i love you through an open window.

I just had to get this moment out.

Peter