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Dementia’s journey

Stacey sue

Registered User
Jan 24, 2020
52
Thankyou for your kind words, hope your visit goes well, I know we are just hanging on to the past , but that’s survival! This pandemic has just stopped us from moving on. SSue.
 

Philbo

Registered User
Feb 28, 2017
827
Kent
Really don’t know what I am going to do without him, not a good day ?
Hi Stacey

It is difficult enough, without dealing with this pandemic and the added stress and isolation?

My lovely wife passed away in January and though obviously devastated, I had become somewhat hardened (or numb?) by the 6+ years I had cared for her (at home, except for the last 5 months).

The finality of it all hit home though and I was glad of the wonderful support of family and friends. However, these lock down months have given us all too much time to dwell on things.

I have taken some comfort from the fact that she is free from this awful disease and I try and remember the good stuff from 48 years of marriage.

So although you will have these bad days, not so bad days will happen too. One of my friends who lost her husband a couple of years ago told me that she had had to learn how to be selfish. We can spend so much time caring for others that we forget about ourselves?

Hope this in some way helps?

Best wishes
Phil
 

Wifenotcarer

Registered User
Mar 11, 2018
297
Central Scotland
I really just want to hold her and protect my woman and i can’t. The home can do all this and I would be a fool and selfish to imagine i could give her the level of care and safety they can.
pete

But Peter you ARE doing everything you can to protect 'your woman'. She is safe, content and protected where she is. And, by following the rules - at huge emotional cost to yourself - you are ensuring that she is as safe as possible.

I, too, feel the loneliness and would give anything for one hug, but I do not suffer from GUILT. I know that Ian is content and well cared for. I am jealous of his obvious happy relationship with the staff and other residents who are now his family, and devastated that he only vaguely recognises me. His Care Home has had zero Covid cases and Ian has recovered completely from the TIA that he had - has no memory of it. He has no worries about anything, perhaps I am jealous of that too, because I worry constantly. My heart stops when I see that an incoming call is from the CH, but it is usually just to say that he has tested negative on his weekly test.

What can we do? Just keep on keeping on I suppose. There is only one way this torment will end and I do not want that to happen soon.
 

Dutchman

Registered User
May 26, 2017
713
Devon
You have mirrored nearly exactly what the home told me today. I went to see her and before she was brought to the window I spoke to one of my favourite staff. She said Bridget is happy because she regards the home as her home and the staff and residents as family. Of course I’m pleased that this has happened but, like you, I am jealous that that closeness has been taken away from me now.

They say she enjoys the flowers and treats I bring if only for a few minutes as she remembers.

I just want to finish by describing how I felt today. As I stood outside the open window, Bridget just a small distance away, it was almost like being with her and the closest I’ve been since lockdown. Also, she reacted normally, said coherent things, mentioned it was a bit breezy with the window open, almost like her past normal self. And it draws you in to thinking” what’s wrong anyway, there’s nothing wrong, let’s live our normal lives” But, of course it isn’t and it’s the dementia devil messing with you.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
52
Thankyou for your reply’s , I think that is right he does look at the staff as family and the CH as home, I just can’t bare the thought of him forgetting us and our happy life we had. I feel the pandemic has made it so much worse if it ever could be? I know at least he isn’t crying all day like me! best Wishes to you. ssue.
 

Dutchman

Registered User
May 26, 2017
713
Devon
The manager of Bridget’s home has taken the time to write to me to try and put my mind at rest.

She says that Bridge is happy, sleeps well, eats ok, and as far as she can be sure sees the home as safe and a kind place. There’s more but that’s the general gist.

I feel relieved but not any less lonely for her.

Peter
 

Dutchman

Registered User
May 26, 2017
713
Devon
it’s difficult today to put feelings into words.

Its nearly a year since Bridget went in to the home. Ive moved from wanting her back home at the beginning to just about realising that the care home is her home no matter how much i don’t like it.

In an ideal world she would’ve been by my side during my operation time. She would’ve been inventive during this lockdown to keep us interested in stuff. and we would have supported each other.

If i’m totally honest she’s becoming distant to me, a person i once knew and getting more distant as time goes on. And why not? She doesn’t recognise me as her husband. When i could go in the home there was hardly any closeness. And it frightens me that i’m losing her and one day she will be just a memory, in my heart forever but unreachable.

And i believe it would be impossible to be that close to anyone else again. If you’re together a long time loving someone then how do you live the rest of your life?

Of course i’m lonely but it’s not so raw but it’s deeper.

Bless you all Peter
 

Dutchman

Registered User
May 26, 2017
713
Devon
Thankyou for your reply’s , I think that is right he does look at the staff as family and the CH as home, I just can’t bare the thought of him forgetting us and our happy life we had. I feel the pandemic has made it so much worse if it ever could be? I know at least he isn’t crying all day like me! best Wishes to you. ssue.
Hi Sue. Oh God it hurts so much doesn’t it. And crying can’t be helped. They say it releases tension etc, but I find it just makes me feel worse and once i start, well that’s it.

Keep strong. i’m only a post away

Peter
 

Dutchman

Registered User
May 26, 2017
713
Devon
I haven’t got much to write. I visited Bridget this morning with flowers which makes me feel better but for Bridge it’s a confusing time but I get a little relief from knowing she’s well cared for

As the window was open and we were about 3 feet apart i nearly gave in to temptation, reach in and touch her hand. Oh the bliss when i’m finally allowed to actually to touch her and hug her. We take for granted physical contact until it’s denied us.

Best wishes

Peter
 

Lirene

Registered User
Sep 15, 2019
184
In an ideal world everyone would be happy and contented, nothing bad would happen - no illness, no death and certainly no bad memories or this dementia hell. This though would not be living, if we were permanently happy and content would we feel love, happiness. sympathy. Would we love someone so much we would give our life, change places with them, go to the end of the earth for that one person - No, we feel, love, adore. our souls and hearts bleed for our loved and adored ones. We try 24/7 for them, with rejection, heart breaking circumstances and pure exhaustion we plead for their memory and for their feelings and health to return, for their hearts to continue beating, to return to normality - Just one more time, just once more please Lord, then we again and again promise the Lord our souls forever for just one glimpse of their past self. If life were perfect we would not have to try, keep us going, to keep them going, but then we would not feel and to feel is human to hurt is to feel to be human to love another human more than you love yourself.
The Lord cannot give us another glimpse, we would want another and another- it would never finish and that is why we grieve for that person, and with dementia that living person. This is why we humans have memories, to remember and actually see our loved ones in our minds eye, To grieve is to be granted time for our hearts and souls to heal.
My heart goes out to you all and my prayers are for all in this world, and beyond xx
 

Dutchman

Registered User
May 26, 2017
713
Devon
I would like to give my thanks Lirene for your heartfelt and considerate reply. I think we all will benefit from your thoughts

God bless

Peter
 

Dutchman

Registered User
May 26, 2017
713
Devon
i had to phone the dementia Admiral Nurses again today just when i thought i was turning a corner with all this. i haven’t talked to them for some time and i judged this as progress.

Its repetitive and tedious i know but all sorts of stuff twists the knife of regret and guilt. The simplest thing like not being bothered to let Bridget help hang the washing out because i was quicker and she got confused and she desparatelly wanted to be included. There’s other instances where i could have been more considerate.

The nurse and I talked about my attitude and, although she tried to reassure me that nothing could have altered the final outcome of a care home, i’m left with a belief that my selfishness contributed to Bridget’s dementia.

I’m an only child and have always been somewhat self-centred and there are many times i’ve only thought of myself. Bridget, in the last months at home, often said “ you only think of yourself”. Perhaps it’s true. And if it is is i’ll never be able to rid myself of the belief I could and should have done more. I suppose ill always need reassurance to ease the guilt. Or do i just live with it?

Sorry everyone for another unloading

Peter
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,547
Kent
Just live with it @Dutchman.

We all have some regrets but what`s done is done.

It`s easy with hindsight to think of all the wonderful ways we could have improved our care but it`s usually when we are well rested and freed from the major responsibility of 24/7 caring.
 

Dutchman

Registered User
May 26, 2017
713
Devon
Thankyou for your reply’s , I think that is right he does look at the staff as family and the CH as home, I just can’t bare the thought of him forgetting us and our happy life we had. I feel the pandemic has made it so much worse if it ever could be? I know at least he isn’t crying all day like me! best Wishes to you. ssue.
Hi. Just wondering how you are? Wouldn’t it be good if we could put our arms round one another’s shoulders and just let it all out and with great understanding know what each of us is going through.

I went to visit Bridget today but she was in her room feeling a bit poorly. I’ll try again Friday. This is the time when I wish I could hug her like i used to for comfort . We’re made to look after one another and when denied it’s awful.

Peter
 

Stacey sue

Registered User
Jan 24, 2020
52
Hi, yes it would be a comfort to know some one feels the same as you? I try and put a brave face on for our daughters, they are ok until they see me upset. Went to visit Dave through the glass doors, our daughter cried when he said her name,and then I was upset ,he then got tearful,I just wanted to take him home, he didn’t get that we were outside the door,so frustrating not to just hug him, oh how I hate this disease.
his deterioration is just shocking. I feel. guilty for him being there, but can’t look after him with all that dementia brings. Hope your having a better day Peter. x
 

Dutchman

Registered User
May 26, 2017
713
Devon
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
 

Woo2

Registered User
Apr 30, 2019
2,302
South East
Peter , with all due respect , if you hadn’t of moved the ladder , then you may both have been injured and then who would of helped Bridget ?! It’s very sad to hear you blame and almost torture yourself , it could have been a combination of environmental , genetics , who knows but it isn’t anything you did . You are still very much caring for your dear Bridget , if the roles were reversed would you want you dear wife to be feeling and going through what you are ? Please do try to be kind to yourself , you are a thoroughly decent man , allow yourself some peace . Take care .