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Dementia’s journey

Stacey sue

Registered User
Jan 24, 2020
70
Peter you describe my experience, I remember good and bad times,mostly good and Dave was never easy in his right mind, he was difficult with dementia. Jealous, obsessive, and delusional , now they say in the CH he is polite and a nice man? I know that but it plays games with your head,I think he is like that I could have him home??
 

kindred

Registered User
Apr 8, 2018
2,508
Peter you describe my experience, I remember good and bad times,mostly good and Dave was never easy in his right mind, he was difficult with dementia. Jealous, obsessive, and delusional , now they say in the CH he is polite and a nice man? I know that but it plays games with your head,I think he is like that I could have him home??
Oh that describes my experience too. Keith went from being angry and aggressive to being the sweet, gentle person he was as a boy when I met him. I think it may have reflected my fear, anxiety and exhaustion when he was at home. But I don't see how it could have been otherwise. At the home he was surrounded by people, laughter, good food, pretty women, no wonder he was so happy there. Warmest, Geraldine
 

Dutchman

Registered User
May 26, 2017
813
Devon
hi Stacey and Geraldine.

when we see our love ones smiling and compliant it’s all too easy to imagine we can manage with them at home. But it’s a dangerous illusion i think because they’re like that because of all the professional help they’ve had.
i suspect Bridget would soon go downhill (and me with her) if she was at home.

But i miss her so much that my throat aches with crying and i just can’t function at times; i’m rooted to the sofa and numb.

What a situation to be in!!

Bless you all
Peter
 
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Stacey sue

Registered User
Jan 24, 2020
70
Yes I agree thank you for your reply’s, when I can visit and see the reality it will be easier,I hope?? SSue. xx
 

Dutchman

Registered User
May 26, 2017
813
Devon
Also, if we did bring them home thinking we could do the job of caring, the room would be lost at the home. And where would i find another if it all went pear shaped, because Bridgets home is close, the staff are wonderful, and she seems settled. i couldn’t take the chance.

And anyway, ain’t i just delaying the inevitable when Bridget gets so poorly that care arrangements would have to be made in for instance 6/12/18 months, who knows?

I spoke to a nurse today at our main hospital who’s gone through this and she said give me cancer anytime, much easier when you have some form of meaningful relationship

Peter
 

Stacey sue

Registered User
Jan 24, 2020
70
Hi, yes I agree, if it was cancer you know the outcome? . I know that this is just going to get worse, and because he is unaware it probably is not so bad for him. The fact I cannot see Dave makes it even more heart breaking.I spoke to him on the phone and although it was mostly gobbledegook, he knew me and was crying on the phone.I know dementia can cause this, but still upsetting to hear and no comfort. ?? SS
 

Dutchman

Registered User
May 26, 2017
813
Devon
Stacey, I’m so sorry to here of the distress Dave is showing and, believe me, I know how heartbreaking it is. I put on a brave smile when we look through the window at each other but I’m a mess when I get into the car.

ive got surgery next Friday so I’m told to self isolate as from this Sunday. Then afterwards I’ll be house bound so altogether its going to be a while till I see her again. Speaking on the phone is not possible as she can’t understand.

Im going to need This forum more and more

peter
 

Stacey sue

Registered User
Jan 24, 2020
70
Hope all goes well for you, All the sensible advice will still be here. Thankyou for yours and Geraldine. xx
 

Agzy

Registered User
Nov 16, 2016
1,562
Moreton, Wirral. UK.
Also, if we did bring them home thinking we could do the job of caring, the room would be lost at the home. And where would i find another if it all went pear shaped, because Bridgets home is close, the staff are wonderful, and she seems settled. i couldn’t take the chance.

And anyway, ain’t i just delaying the inevitable when Bridget gets so poorly that care arrangements would have to be made in for instance 6/12/18 months, who knows?

I spoke to a nurse today at our main hospital who’s gone through this and she said give me cancer anytime, much easier when you have some form of meaningful relationship

Peter
With you here @Dutchman as, while my Pauline was in hospital they were considering a carehome as lockdown was happening and no at home care plan or package so I brought her home. The vast majority of the time I am so glad I did as she is safer here but there are days when I so regret having her here at home withour care help.
 

Dutchman

Registered User
May 26, 2017
813
Devon
As usual i cried and was extremely miserable after seeing bridget today. I say i love you through the window but it’s clear she doesn’t understand the concept but does blow me kiss which brings a lump to my throat .

i called the Admiral Nurse when i got home and she gave me some helpful advice which i’d like to share.

She said i know it’s tempting to think you could now manage at home with her but Bridget is progressing with her dementia now and is only calm, clean and eating because of a group of carers who have worked hard for her. It’s easy to imagine her home now you’ve had a long respite from 24/7 dementia behaviour.

She said it’s very normal to feel as i do but please try to realise that Bridget is cared for, you’re not and only have yourself at home. If you’re not well Bridget will not have visits.

She said if possible love yourself for what you have done for your wife and try not to concentrate on any regrets .

She’s pleased i have this forum as a good support for one another

Bless you all

Peter
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,008
69
Dundee
Such good advice from your admiral nurse @Dutchman. She must be a good support for you and I‘m glad she appreciates the value of this forum.
 

Stacey sue

Registered User
Jan 24, 2020
70
Thanks for good advice, will try and remember this, so easy to not see or blank out the progression of dementia.? SS
 

Dutchman

Registered User
May 26, 2017
813
Devon
Thanks one and all. I’ve been encouraged by the hospital to isolate as much as I can this week.

So , as England opens up I’m advised to close down.

Best wishes everyone

peter
 

Dutchman

Registered User
May 26, 2017
813
Devon
i phone the home almost everyday when i don’t visit and ask how is Bridget. they always say she’s alright and it’s my way of clinging on to what’s left of our relationship.

Do you think i phone to often; i don’t know?

I cannot see a future where i have a normal, quite contented life, i’m rubbish at this being on my own. I sometimes go downstairs in the mornings and really believe she’ll be sitting on the sofa and asking me what do you fancy doing today. My best friend and companion robbed of her future.

Why can’t this be a dream and i wake up to normality and her company. Stupid thoughts!!

Thank God for forum friends who don’t mind me being miserable

Peter
 

kindred

Registered User
Apr 8, 2018
2,508
i phone the home almost everyday when i don’t visit and ask how is Bridget. they always say she’s alright and it’s my way of clinging on to what’s left of our relationship.

Do you think i phone to often; i don’t know?

I cannot see a future where i have a normal, quite contented life, i’m rubbish at this being on my own. I sometimes go downstairs in the mornings and really believe she’ll be sitting on the sofa and asking me what do you fancy doing today. My best friend and companion robbed of her future.

Why can’t this be a dream and i wake up to normality and her company. Stupid thoughts!!

Thank God for forum friends who don’t mind me being miserable

Peter
Here with you, Peter, we all are. I know, being on our own sucks.

One of his friends sent through some childhood photos of Keith yesterday and it was too much, I felt mad with grief..
I think eventually we find some kind of philosophy to go on with and I think phoning every day is good.
With you all the way,
With love Geraldine
 

Dutchman

Registered User
May 26, 2017
813
Devon
Oh Geraldine, photos are the worse because they are showing our loved ones, normal and happy

I have shelves of photo albums but I don’t go near any of them. I’m often told to think of the good times but that just upsets me more knowing what we had compared to now.

Im here for you

love Peter