Talking in square circles

[AbbyGee]

Taking things gently with my dear old geezer who's finally (after some 2.5 years) got a diagnosis of Dementia in Alzheimer's. Having discussions and explanations about the 'now' situation. Then moving on to talk about and discuss the potentials of the 'then' situation. Softly-softly - not too much at once. Uncomfortable chats but it all seemed to be OK with some tears, hugs, laughs, plans and ideas for our future.
(I know I need to do a ton of stuff including LPA and he says it's a great idea. Notes taken, in bullet points plus my own version of detail on the other side of the paper..... blah, blah, blah.)
Phew .... thought we were getting somewhere.
Started to re-introduce the topic this evening. OMG and ...... apparently I'm now talking total carp, I need a reality check, what's the problem?
It's taken so long to get to this point and it feels like .... I dunno ..... like we've got nowhere at all and even moved backwards....
Yay - just feel better having whinged. (Roll of drums ...... "And Goodnight, good people").

 

[canary]

Im afraid that your OHs reaction is par for the course with dementia.
You wont be able to have any talks about it, Im afraid and anything that you want him to do you will have to be sneaky about. I got OH to do POA because I said that it was something that we needed to do while we still had all our marbles (I used that expression because I knew it would make him laugh!). I didnt discuss it much, didnt ask him if he wanted to do it - I just took it as a done deal and got it sorted. I think it helped that I did mine too. (we both had each other plus our 2 children as attorneys, so that if anything happened to me the children could take over).

Having a diagnosis will open doors to support for you, allows to apply for some non-means tested benefits and gives you validation, but he is likely to not accept that he has anything wrong with him. Mum would only grudgingly accept that "her memory wasnt what it was", but insisted it was because of her age. Dont try and have discussions about it with him, nor try and talk over plans for the future. Unfortunately, being the carer means that you will have to increasingly take unilateral decisions.

 

[AbbyGee]

Im afraid that your OHs reaction is par for the course with dementia.
You wont be able to have any talks about it, Im afraid and anything that you want him to do you will have to be sneaky about. I got OH to do POA because I said that it was something that we needed to do while we still had all our marbles (I used that expression because I knew it would make him laugh!). I didnt discuss it much, didnt ask him if he wanted to do it - I just took it as a done deal and got it sorted. I think it helped that I did mine too. (we both had each other plus our 2 children as attorneys, so that if anything happened to me the children could take over).

Having a diagnosis will open doors to support for you, allows to apply for some non-means tested benefits and gives you validation, but he is likely to not accept that he has anything wrong with him. Mum would only grudgingly accept that "her memory wasnt what it was", but insisted it was because of her age. Dont try and have discussions about it with him, nor try and talk over plans for the future. Unfortunately, being the carer means that you will have to increasingly take unilateral decisions.

 

[AbbyGee]

OK. Thank you. I'll get on with it then.

 

[Shedrech]

come here for a 'whinge' any time @AbbyGee
you've done well to have sorted out what you have ... take that initial conversation as his permission for you to carry on and put in place whatever is needed, without any further discussion ... and simply praise and thank him each time for his brilliant idea ... keep it all as positive as possible and he may pick up on the positivity and co-operate

 

[marionq]

Totally agree - forget the kind of discussion you might have had. Get important stuff in place then choose your moment to announce rather than discuss.

Be ready for the unexpected.

 

[big l]

the hardest thing is realising that there is no reality, just ambition and hope. Keep coming here to grieve and explode and laugh (yes) and cry. We're all in the same boat. Shame there's no oars or sail or engine!

 

[jenniferjean]

Yay - just feel better having whinged.

Yes it truly does help. Thank Heavens for TP. People on here know what you are going through. Let's face it, if you haven't had to deal with it you can't understand how it is.
This morning my husband was watching the news and suddenly said to me "Why do they talk about finding a cure for dementia? It's only old age and you can't cure that".

 

[maryjoan]

But today has been bad - and I can't explain why, really. Just the losing of him and the responsibility.

Once again we arranged lunch at a time to suit him, so he could go and play bowls.
He went - but the bowls wasn't on.
He went also on Thursday, but the bowls wasn't on

He said he had put reminders on his phone - but he had got them wrong
He said he had checked his emails, but he had got that wrong.

How to help him when he doesn't think the dementia affects him?

I tried to explain it was not him that was getting it wrong - it was the dementia, and could we work out a way to help so that I can do the 'brain work' for him?

First time we have ever admitted to having to try strategies.

He is locked out of his bank accounts, he phones them up but doesn't understand what they are saying.

He locked my customer data base so I cannot get at my customers records.

Now he has somehow, managed to via his own laptop - to change the name on my emails to his name - I followed google instructions, but it just won't change back - so my customers now think an unknown man is emailing them about their family trees.

He has a cough, but the Dr having checked out many things, is sure it is a habit - but it is a habit that keeps me awake at night.

I realise we are further down the road than I thought - and it is the constant trying to think of strategies that is so wearing........

but then I look at facebook and see some lovely photos of my baby grandson up in Scotland and smile - but then am sad, because I cannot be with him ......

this dementia is only going in one direction and my heart was broken by it years ago - how DO we carers survive??

 

[JillyB61]

Taking things gently with my dear old geezer who's finally (after some 2.5 years) got a diagnosis of Dementia in Alzheimer's. Having discussions and explanations about the 'now' situation. Then moving on to talk about and discuss the potentials of the 'then' situation. Softly-softly - not too much at once. Uncomfortable chats but it all seemed to be OK with some tears, hugs, laughs, plans and ideas for our future.
(I know I need to do a ton of stuff including LPA and he says it's a great idea. Notes taken, in bullet points plus my own version of detail on the other side of the paper..... blah, blah, blah.)
Phew .... thought we were getting somewhere.
Started to re-introduce the topic this evening. OMG and ...... apparently I'm now talking total carp, I need a reality check, what's the problem?
It's taken so long to get to this point and it feels like .... I dunno ..... like we've got nowhere at all and even moved backwards....
Yay - just feel better having whinged. (Roll of drums ...... "And Goodnight, good people").

Do it, do it now. Mum and I discussed LPA then suddenly we where on a hospital ward, mum with a broken hip and me realising how fragile her mind really was. As you seem to be doing, I coaxed the process along and am very grateful to the witnesses that came into town especially to help finalise the application. I did feel I was sort of tricking her as mum was struggling anyway. It was the best decision to make however, LPA takes 12 weeks - a lot can happen in 12 weeks. It also takes time presenting document to all relevant agencies. We would have had problems waiting longer as this illness rushes on: not caring about bank accounts or bills due. Getting that LPA is a kindness to yourself and your partner.

 

[AbbyGee]

Totally agree - forget the kind of discussion you might have had. Get important stuff in place then choose your moment to announce rather than discuss.

Be ready for the unexpected.

Ha .... yes .... Monty Python! "NOBODY expects the Spanish Inquisition!" ..... )

 

[AbbyGee]

Do it, do it now. Mum and I discussed LPA then suddenly we where on a hospital ward, mum with a broken hip and me realising how fragile her mind really was. As you seem to be doing, I coaxed the process along and am very grateful to the witnesses that came into town especially to help finalise the application. I did feel I was sort of tricking her as mum was struggling anyway. It was the best decision to make however, LPA takes 12 weeks - a lot can happen in 12 weeks. It also takes time presenting document to all relevant agencies. We would have had problems waiting longer as this illness rushes on: not caring about bank accounts or bills due. Getting that LPA is a kindness to yourself and your partner.

Thank you, hunny. Yes, things have progressed a little more rapidly than expected. It rocks between a 73 year old with the behaviour of a 4 year old and the same old love of my life; the fun, laugh, host-mode drinking partner, buddy, friend, gentle man gentleman lover and big safe rock that saved me when I needed it most. My everything.
Hey, dunno what I'm weeping about! He's still here and I can still nag and whip him into action (NO - not *that* sort of action - well, not all the time ..... ) and we can still do team work on helping out another good buddy who is in need so I shall pour my tears down the drain of wasted energy and think positive thoughts.
I'm not blind to the future but - hey-ho - it ain't here yet. Let's go dance naked around the bonfire in the garden and drive too fast and run with scissors and drink too much and have fun and book into a hotel room and pretend we only just met (gets the Reception staff going!), eat too much, laugh at the sparrows fighting over a teeny puddle and then dry-dusting themselves in the earth, eat chips at 2am, let's ring doorbells and run away, play fools the whilst we may - knowing we're still in control of the foolishness. And I shall pick my Widow's Weeds with gentle care ... for, like an auction, he is going, going...... and I am holding the thought that he has not yet gone.

 

[AbbyGee]

Yes it truly does help. Thank Heavens for TP. People on here know what you are going through. Let's face it, if you haven't had to deal with it you can't understand how it is.
This morning my husband was watching the news and suddenly said to me "Why do they talk about finding a cure for dementia? It's only old age and you can't cure that".

OMG. And yes, he has voiced what is such a common misconception, bless him.