Confusion

blackmortimer

Registered User
Jan 2, 2021
296
0
I really appreciate your obvious wish to be helpful - many thanks!
I have at various points been advised to go for PA (Health) but when my wife was more rational, it would have been a very hard sell for many reasons. Now that her mental faculties have really deteriorated, she is not capable of agreeing to this, even though she trusts me!
Maybe I'm being naive but I can't imagine coming into serious disagreement with nhs/social services about my wife's treatment.
You're not being naive, @Francisco, not at all. You know best because you're living with it. I know only too well that trying to deal with anything of a legal/official nature when your loved one has dementia can be simply a bridge too far. Best, if you can, to go with the flow and avoid conflict. If it's any consolation I've gone through the whole nine yards of diagnosis, memory clinic, hospital and now nursing home without a cross word.

Sorry again for being a bit forward - really very unBritish! I shall go and give myself a taiking to.

God bless
 

Francisco

Registered User
Jul 26, 2020
74
0
You're not being naive, @Francisco, not at all. You know best because you're living with it. I know only too well that trying to deal with anything of a legal/official nature when your loved one has dementia can be simply a bridge too far. Best, if you can, to go with the flow and avoid conflict. If it's any consolation I've gone through the whole nine yards of diagnosis, memory clinic, hospital and now nursing home without a cross word.

Sorry again for being a bit forward - really very unBritish! I shall go and give myself a taiking to.

God bless
To go through all that without a cross word is impressive! Well done to both of you!
 

Adoralan

Registered User
Mar 2, 2021
58
0
Hi @Francisco,

My family don't yet have a diagnosis for my mum for the same reason you have given. We do have power of attorney for health and finances. So far the lack of formal diagnosis hasn't been an obstacle, even though mum has just spent a long time in hospital with severe Covid. The medical staff have very quickly accepted that she does have dementia just from talking to her.

In your original post you quoted your wife as saying "I think my brain's going". Perhaps if she said something like this again you could take that as an opening for discussion if you wanted to, along the lines of "Are you worried about being confused? Would you like to talk about that?" . If you aren't concerned about getting a diagnosis you are in a position to let her take the lead in initiating any discussions about her condition. I think that even someone deep in denial is aware of what is happening to them and are frightened by it, so the opportunity to talk about it, just to you at first, might be welcome at some point. Of course, you know your wife better than anyone, so are the best person to decide whether or not any approach is suitable.

Very best wishes
 

Francisco

Registered User
Jul 26, 2020
74
0
Many thanks Adoralan. We've been together for almost half a century, so I'm playing it 'to the best of my knowledge' about my wife. She's a natural worrier and this now shows through extreme concerns about security, intruders stealing things and so on. At present this can be managed through calm reassurance and upbeat interactions.
I could be wrong but I fear that taking the opportunity to open up a discussion when she says, "I think my brain's going" would only alarm her and increase her long-standing distrust of doctors, and perhaps lead to her distrusting me. She would see it as the thin end of the wedge culminating in being placed in a dreaded care home.
Some have said there may be other treatable conditions but her behaviour strongly indicates dementia.
Some have said that medication could help but others have stressed that the impact is modest with this progressive disease - and my wife is hostile to medication, even aspirin.
What I can and must do is keep talking to the GP and become knowledgeable about what the options are as the illness progresses - there will obviously come a point when more expert help is needed.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
@Francisco I had POA for dad, both financial and health and welfare but I never used either even though I kept dad at home until he died. I took them out just in case because I was the only one looking after dad and I thought a care home may be a necessary option at some time in the future and I would need POA to pay any fees, but in truth that was never really likely because dad was such a sweet and good natured person throughout his dementia apart from the hospital stay but that is another story and we got over that eventually.

Yes, keep talking to the GP especially if you have a good one. Dads GP was wonderful and so kind and I was so thankful for that.
 

Francisco

Registered User
Jul 26, 2020
74
0
UPDATE: Life is becoming more difficult for both of us.

The periods of confusion and anger are more frequent. My darling wife inhabits a different world, fleetingly connecting with my world but frequently on a different planet, genuine memory being supplanted by false memory and bizarre imagination.

A recurring theme I’ve mentioned before concerns money: at her request I took over the finances about three years ago. But now she has lost track of how we managed our finances. Throughout our marriage we’ve been happy with a joint account, receiving our income and paying our bills with neither of us interested in or concerned about how much each of us spent. But now, because I'm managing the money, she exclaims on a daily basis that she has no money: “Show me where the money is, I have absolutely no money. You have all my money. I worked hard all my life and now I have no money. It’s appalling!” On a good day, when I get the tone and content of the response right she is reassured and grateful that I’m looking after the finances. But about half the time I get it wrong: frustrated by her zero retention of what I’ve explained many times previously, I reiterate that I’m managing OUR money, that we had a joint account since we were married more than four decades ago, that our mortgage was paid from this account, that she has cash in her purse (“how do you know there’s cash in my purse, how dare you look in my purse?”) and that she has access to money through her credit cards and her debit card. In an attempt to reinforce her connection to our house (in the face of her recent determination to move back to her childhood region to experience again the happiness of long ago) I remind her that she is a home-owner and that she and I have enjoyed living here for decades. But she has no grasp of any of this, believing that she must move back to her home area where she can reconnect with sisters, cousins, and school friends from the 1950s. She expects me to facilitate this but is unconcerned about the practicalities and my wish to remain where we’ve lived happily for nearly half a century.

She can become seriously unsettled: often she vehemently maintains, despite all the ‘evidence', that we are not married and that we don’t have a joint account. She maintains that she bought the house, an idea perhaps prompted by me reassuring her that she’s a home-owner.

When unsettled, she can become bad-tempered and verbally challenging, raising her voice, clenching her fists and finger-stabbing. Sometimes I react to this with annoyance, stubbornly disagreeing with her and ultimately leaving the room. Two minutes later, she will seek me out, sometimes to continue to express her unhappiness, and sometimes to apologise for her ‘bad behaviour’. I rightfully apologise for my bad behaviour, stressing that it’s all my fault and that she is blameless. I feel ashamed that I cannot be sufficiently supportive in the stress of the moment – but that is most definitely easier said than done. I have to fight hard to resist the strong feeling of being absolutely taken for granted.

Being supportive is a real challenge to me in the face of constant negativity and angry illogicality. The natural thing for me to do when she agitatedly and vehemently claims that people have been in our house stealing her things is to say that I have no evidence of this, that I have never witnessed anyone being in our house uninvited and that I have never had anything stolen. She interprets this as disloyalty, that I think more of others, that I don’t believe her when it’s obvious and unchallengeable that people have been getting into our house. If I say nothing, it is perceived as scepticism on my part which she finds infuriating. She would be happiest if I agree with her but I can't bring myself to, in effect, reinforce her paranoia. And if I try to divert, to change the subject, she usually cottons on and gets more agitated.

I have been in touch with the GP who is sympathetic but puts the ball back in my court with the offer face-to-face time if I bring my wife to the surgery. My wife is in complete denial and gets extremely angry if I mention a visit to the GP – I interpret this as evidence that she has some awareness of her predicament but that she determinedly doesn’t want her suspicions confirmed.
 

big l

Registered User
Aug 15, 2015
176
0
Oh how difficult it is. Firstly you wonder, is there something wrong? Then, slowly, you accept there is something wrong, then you have to enlist the doctor's support, then you have to accommodate what they suggest, memory clinic etc, then it's the legal stuff, wills, power of attorney, then it's medication, then it's means testing for support at home, attendance allowance and respite provision. And through all this we have to keep our poor dementia person happy as it all happens and stay sane ourselves. I devised a set of not very white lies to get through things, you' experiment' and 'coerce' really, however you can. You wait until you get the respite care provision, that's a whole new playing field!
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,259
0
High Peak
Oh dear. I'm sorry you are going through this. It sounds like your wife - much like my mum - could be a poster girl for dementia - she's showing all the 'classic' behaviours I'm afraid.

Obsessions with money are very common, as is moving back in time to an earlier period in their lives. If she thinks she's 30/40 years younger, it won't make sense to her that she's married to such an old man, i.e. you! (please don't be offended!) You could present her with any evidence and she still wouldn't believe it. (My mother could not recognise her younger self in photos or her old self in a mirror either.)

It's very hard to stop saying 'That couldn't possibly have happened - no one has been in the house except us' but honestly, it won't help. If you continue to say she's wrong she'll start thinking you are part of the conspiracy against her by supporting those who are stealing her money. Dementia logic is very weird. Maybe take a different tack with her: agree it is very odd. Tell her you will keep an eye on things or even that you've reported the theft, that the police have dealt with it and all the money has now been put back. It will take a bit of experimentation to find out what sort of thing she'll believe. (And imagination!)

I know you don't want to do this. I know it goes against your nature and everything you believe... but your wife has changed and unfortunately she won't get better. Somehow you have to find ways to pacify her, so if that means lying through your teeth, admitting to atrocities or agreeing with ridiculous accusations, sometimes that's just what you have to do.
 

Francisco

Registered User
Jul 26, 2020
74
0
Oh how difficult it is. Firstly you wonder, is there something wrong? Then, slowly, you accept there is something wrong, then you have to enlist the doctor's support, then you have to accommodate what they suggest, memory clinic etc, then it's the legal stuff, wills, power of attorney, then it's medication, then it's means testing for support at home, attendance allowance and respite provision. And through all this we have to keep our poor dementia person happy as it all happens and stay sane ourselves. I devised a set of not very white lies to get through things, you' experiment' and 'coerce' really, however you can. You wait until you get the respite care provision, that's a whole new playing field!
Many thanks for this very helpful. I would be interested in your thoughts on respite care provision....!
 

Francisco

Registered User
Jul 26, 2020
74
0
Oh dear. I'm sorry you are going through this. It sounds like your wife - much like my mum - could be a poster girl for dementia - she's showing all the 'classic' behaviours I'm afraid.

Obsessions with money are very common, as is moving back in time to an earlier period in their lives. If she thinks she's 30/40 years younger, it won't make sense to her that she's married to such an old man, i.e. you! (please don't be offended!) You could present her with any evidence and she still wouldn't believe it. (My mother could not recognise her younger self in photos or her old self in a mirror either.)

It's very hard to stop saying 'That couldn't possibly have happened - no one has been in the house except us' but honestly, it won't help. If you continue to say she's wrong she'll start thinking you are part of the conspiracy against her by supporting those who are stealing her money. Dementia logic is very weird. Maybe take a different tack with her: agree it is very odd. Tell her you will keep an eye on things or even that you've reported the theft, that the police have dealt with it and all the money has now been put back. It will take a bit of experimentation to find out what sort of thing she'll believe. (And imagination!)

I know you don't want to do this. I know it goes against your nature and everything you believe... but your wife has changed and unfortunately she won't get better. Somehow you have to find ways to pacify her, so if that means lying through your teeth, admitting to atrocities or agreeing with ridiculous accusations, sometimes that's just what you have to do.
"Poster girl for dementia", like it!
Your comments are very helpful, particularly concerning the futility of being reasonable in the face of outlandish accusations. I need to take a step back, not take things personally, and react mindfully rather than emotionally. I have made concessions e.g., bolts added to doors have reassured her but now she wants the doors barricading even more!
Don't feel like an old man yet.....but I probably will be by the time she's finished with me!
 

Boxy

New member
Aug 4, 2021
3
0
It's 4.30 in the morning. We're in bed, I’m dozing and she suddenly says, “Who are you?”

I explain who I am. “Do you live here?” she asks. “Yes, we’ve lived here for many years”. “Where are we?” I explain where we are, describe the house, the location, the way we made the garden which she loves. “Is anyone else here?” “No, just us two, it's our house, we own it, and only we two live here”.

“I’m a bit confused, I think my brain’s going”. “No it’s not, you've always been a bit absent-minded....I think you’ve been dreaming and the dreams have got a bit mixed up with reality”. (She is reassured, this explanation makes some kind of sense to her).“Have I been married to anyone else?” “No, just me!, you are the love of my life” (an expression I know she likes). I follow up by quoting poetry I’ve written to her – “You are my ever-unfolding dream that comes true every day, what a joy!” And “I love you Always and All Ways!” This strikes a chord, she begins to relax and relocate her bearings. All is relatively well and we manage to get back to sleep for a couple of hours.
 

JC51

Registered User
Jan 5, 2021
381
0
I really think you should do your utmost to get a diagnosis. All the help that is available unfortunately needs one, eg, attendance allowance, council tax rebate and local authority care assistance.
 

Francisco

Registered User
Jul 26, 2020
74
0
Update on the Update...
Confusion, delusions, paranoia, angry frustration and false memories have been in evidence for a couple of years now and the instances are becoming more frequent and more extreme.
There are a few triggers: a yearning for family times long departed, a persistent wish to go back to her home region where she will be reunited with parents, siblings, aunts, uncles and cousins. No matter how many times she accepts that her parents died half a century ago, it does not stop the daily anguished pleas that “I have to go home to see my family, that’s where I belong”.
For the first 10 years of retirement, she travelled the World with me and at home enjoyed regular dance classes, language classes and tennis. But over the last 3 years she has lost her bearings, joie de vivre purposefulness and optimism being replaced with ennui and despair. Enjoyable retirement has been overtaken by her feeling that without the routine and discipline required in work, life is boring, there’s no longer any reason to be in this region, and that her only chance of happiness is to return to where she grew up. I explain to her that we have happily spent more than half our lives here and that I wish her to stay here with me and make hotel visits to her home area in the Spring/Summer months – as we did on multiple occasions in 2021. Yet she persists with the need to relocate with no appreciation whatsoever of the daunting practicalities and the unrealistic expectations. She also frequently insists we’re not married despite the obvious evidence.
All this regularly recurring confusion and anxiety about moving and our relationship (I often feel like the unappreciated house servant and odd-job man, especially when she asks whether I am being paid for cooking and cleaning) causes both of us great anxiety. She often vehemently states that she alone bought our house (“Where do you live?”, she asks). Sometimes it’s bad enough for me to fleetingly wish to facilitate her departure ‘back home’, leaving me in peace.
But I know that it will never happen: she totally relies on me and she’s incapable of fending for herself. It is manageable at present mainly because there is still a significant ‘connection’ between us, sufficient love, warmth, compassion and humour to sustain us. Given the nature of this insidious illness, I do worry about how long the connection will last.
 

hybiscus

Registered User
Dec 31, 2021
14
0
Hello Fransico
I am a new member and I can't really give advise but I certainly have empathy with your situation.
Like you my husband and I still have the love we've shared for many years but I worry too
that one day he"ll look at me and say who are you.
I too feel like a slave sometimes and I'm always thinking about what I can get to interest him
but nothing other than jigsaws of a very basic kind will he do, and television .
'I've tried so many things but he just doesn't seem interested ,yet he paces the house as though he's bored.
I know everyone has been telling me to get help or I'll burn out, then what good would I be
So maybe you should consider this too, I know its not easy believe me, I feel guilty when I go to the shops and leave him for a short while
take care of yourself
regards hybiscus
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Enjoyable retirement has been overtaken by her feeling that without the routine and discipline required in work, life is boring, there’s no longer any reason to be in this region, and that her only chance of happiness is to return to where she grew up. I explain to her that we have happily spent more than half our lives here and that I wish her to stay here with me and make hotel visits to her home area in the Spring/Summer months – as we did on multiple occasions in 2021. Yet she persists with the need to relocate with no appreciation whatsoever of the daunting practicalities and the unrealistic expectations.
This compulsion to "go home" can be unbearably strong and your wife is finding it almost irresistible. Would it help to use "love lies" and tell her that you will move? Perhaps you could look at houses for sale on the internet and talk about her childhood, but not actually do anything of course. You may find that that this is sufficient to ease your wifes distress.
 

Francisco

Registered User
Jul 26, 2020
74
0
Hi @Francisco

I really do you think you need to get the GP involved. There may be some medication that will ease the anxiety.
Thanks for your advice which is what the situation suggests. The GP has been briefed but actually getting my wife to cooperate is another matter. If I mention seeing the GP she can be belligerently hostile - which I guess is connected with her vague awareness that all is not well and that she doesn't want anyone telling her uncomfortable truths. And she is and always has been extremely reluctant to take medication. These factors, plus my apprehension about how medical intervention would negatively impact on her residual mental health leaves in limbo....
 

Francisco

Registered User
Jul 26, 2020
74
0
Hi @Francisco

I really do you think you need to get the GP involved. There may be some medication that will ease the anxiety.
Thanks for your advice which is what the situation suggests. The GP has been briefed but actually getting my wife to cooperate is another matter. If I mention seeing the GP she can be belligerently hostile - which I guess is connected with her vague awareness that all is not well and that she doesn't want anyone telling her uncomfortable truths. And she is and always has been extremely reluctant to take medication. These factors, plus my apprehension about how medical intervention would negatively impact on her residual mental health leaves in limbo....
Hello Fransico
I am a new member and I can't really give advise but I certainly have empathy with your situation.
Like you my husband and I still have the love we've shared for many years but I worry too
that one day he"ll look at me and say who are you.
I too feel like a slave sometimes and I'm always thinking about what I can get to interest him
but nothing other than jigsaws of a very basic kind will he do, and television .
'I've tried so many things but he just doesn't seem interested ,yet he paces the house as though he's bored.
I know everyone has been telling me to get help or I'll burn out, then what good would I be
So maybe you should consider this too, I know its not easy believe me, I feel guilty when I go to the shops and leave him for a short while
take care of yourself
regards hybiscus
Thanks hibiscus, we're on the same unenviable journey. I've already had "Who are you?" and "Where do you live?" but thankfully only fleetingly at the moment.
We both need to take care of ourselves...
 

Francisco

Registered User
Jul 26, 2020
74
0
This compulsion to "go home" can be unbearably strong and your wife is finding it almost irresistible. Would it help to use "love lies" and tell her that you will move? Perhaps you could look at houses for sale on the internet and talk about her childhood, but not actually do anything of course. You may find that that this is sufficient to ease your wifes distress.
Thanks canary, wise words as always. I do use small white lies at present but I need to up my game!
 

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