And so it goes on...

Mudgee Joy

Registered User
Dec 26, 2017
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New South Wales Australia
Hi grahamstown - I think you would understand too how it is frustrating to talk as if to a child - "that's lovely, " "well done", "that will be fine don't worry" etc - so many platitudes and frivolous conversations - sometimes I'm fine and then I can get snappy - then I am pleased he has a bad memory :rolleyes:
 

Grahamstown

Registered User
Jan 12, 2018
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East of England
Terrible day today but I have left him to his own devices which makes me realise how much I pander to him. It has been a release not doing that and doing what I want to do. Guess what it is? Better Call Saul which is perfect viewing for carers of PWD. Totally crazy but makes sense, just like our lives.
 

margherita

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May 30, 2017
3,280
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Italy, Milan and Acqui Terme
I cancelled a trip to the local cinema because I decided I couldn’t leave him. I hate myself for wondering if I had been manipulated as it is the second time I’ve had to cancel the same outing but it all appeared to be very real.
I often think OH is manipulating me. Sometimes I wonder if he doesn't really remember what happened or he only pretends not to remember.
 

try again

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Jun 21, 2018
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I am very very bad at compassionate communication, and I feel bad about it myself but the patience required is beyond my ability. I guess I can do it sometimes but by the end of the day, it does my head in. There that feels better, a short rant before I take him out for supper and try to keep him off the alcohol.

I'm with you there. Stress levels from 50% to blow in milliseconds. Don't see it coming sometimes. I truly believe the calmer I am the more my mum tries to push
 

Grahamstown

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Jan 12, 2018
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East of England
Manipulated is how I felt yesterday when he knows how to do what he wants to do, go to the pub and drink beer, but not how to do other simple things. I had a good evening, watched what I wanted to watch, did not have to do other trivial things that he usually dictates and had a couple of glasses of prosecco, very rare for me, while he had a glass of water! Mean I know but that’s what happens when you are pushed too far. Yes I know all about it being the disease not the person but after caring for him like a child I decided to treat him like one too when he misbehaves to his own detriment and so far it seems to work. I haven’t quite got over yesterday but steel has entered my soul in order to keep him going in reasonable shape. He is declining by the month.
 

Manc70

Registered User
May 30, 2018
119
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S. Yorkshire
Re feeling manipulated, I have yet to see how today goes. I have been around him and looking after him every single second for days but have arranged to go out for a few hours with an old friend at lunchtime. Already he has had to go back to bed after his breakfast and doesn’t feel great - I will get ready but hate the feeling of being unsure whether I’ll actually get out of the house and feel so guilty letting people down at the last minute. The thing that stops me going out is when he says he feels dizzy and unsteady - I’m sure it’s very real but wonder if it’s psychological, maybe a bit afraid of being left alone...... I can’t get used to my strong, intelligent, confident husband of 46 years being like this. Who would think you could feel so lonely with the person you’ve always wanted and enjoyed being with. Love and hugs to all who are struggling xx
 

canary

Registered User
Feb 25, 2014
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South coast
The thing that stops me going out is when he says he feels dizzy and unsteady - I’m sure it’s very real but wonder if it’s psychological, maybe a bit afraid of being left alone....
I think thats very likely - it was something I was thinking even before I read this bit.
If hes back in bed at least he will be safe there.
 

Elliott's mum

Registered User
Jul 18, 2017
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Hi manc70,
I know what you mean about the manipulation, my mum seems to be able to go shopping with her friends, play bingo etc, yet the week before I’m due to go on holiday suddenly she becomes very needy, and anxious, yet if she goes away for a couple of days with her friends it’s as though she’s left the planet I don’t so much as get a call to say she’s arrived! She has become very selfish even more so than ever and I think she honestly believes I should be there 24/7 for her even though “ she has been given the wrong diagnosis but the nhs won’t admit to it” !!!! She can get very angry when challenged, wants me to read every letter and sort it out immediately but won’t have them re directed to my house as apparently she “only shows them me so I know where she’s up too” But seen as though I’m now the one getting “all anxious” she’s not going to show them to me any more”! Honestly I can’t win! Don’t think I will ever be able to get my head around this dementia stuff, think time out and a bit of distance is key! After all we can’t pour from an empty cup! X
 

longlostfan

Registered User
Aug 14, 2016
111
0
Terrible day today but I have left him to his own devices which makes me realise how much I pander to him. It has been a release not doing that and doing what I want to do. Guess what it is? Better Call Saul which is perfect viewing for carers of PWD. Totally crazy but makes sense, just like our lives.
Absolutely! Better call Saul works for me for a respite. Mad but comforting in a dark dark way
 

Mudgee Joy

Registered User
Dec 26, 2017
675
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New South Wales Australia
[Guess what it is? Better Call Saul which is perfect viewing for carers of PWD. Totally crazy but makes sense, just like our lives.[/QUOTE]
Is this a tv program ?? Love to you - keep up doing whatever helps !!! MudJoy
 

Grahamstown

Registered User
Jan 12, 2018
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East of England
Went to our daughter’s for roast lunch yesterday. She said that he doesn’t do the pub thing deliberately but doesn’t know what he is doing! OK but it doesn’t help much especially when he is bleating about going to the pub again yesterday and an occasional drink, as per doctors advice, is an unknown concept. A skin cancer operation on his cheek has gone septic where a bit of suture had been left so now he is on fluclox for a week and that’s definitely no alcohol. I went to my U3A this morning and picked the fluclox up and called to tell him at 10am and got him up from a sleep, unbelievable but seems so common with dementia. He’s back in bed again now and will get up wanting a drink, sigh. Perhaps some Better Call Saul, a tv series on Netflix @Mudgee Joy , will distract us, me anyway and I think he might like it too.
 

Grahamstown

Registered User
Jan 12, 2018
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East of England
New strategy! Instead of thinking that he is the age he is and expecting him to be that age, and going bananas with frustration because he can’t help not being that age, I have this new mantra: ‘think 5 year old, think 5 year old’. It started today when I was trying to get him to do an early morning urine sample for his check up, and administering antibiotics for a skin infection following a small operation for skin cancer, ‘think 5, think 5’, and thinking back to our young children when you automatically do everything for them without question. There is a caveat though, you did teach your 5 year old day by day and month by month and they grew and learned until, hopefully, they were big enough to do things for themselves. Now all that can happen is regression to before 5 or staying stable depending how the disease goes. Even if you haven’t had children yourself, what is required to care for them is well known, and now we have got one, they just happen to be old at some stage or another. ‘Think 5 year old, think 5’!
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Yes - I have no children of my own but I totally get it. I can recall friends in their "having children" years complaining that they needed a grown up conversation - that is exactly so now.
This week I'm writing a little diary of just what happens late evening -
No 2 nights are the same - but are always rather crazy and weird. I thought if I ever get a night off it would help the carer understand what to expect - and how to move on - I always suggest " we will see to it in the morning'..
Probably what my mum may have said when I was a kid !
I miss the company and I often talk to my husband as if he is "all there" - I rarely get a good answer though.
 

Grahamstown

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Jan 12, 2018
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East of England
My husband is trying to live in both the past and the future when he is only capable of living in the present, which of course changes from moment to moment and then he can’t remember the previous moments. I can only remind him over and over again, so sad.
 

jugglingmum

Registered User
Jan 5, 2014
7,085
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Chester
Catching up with earlier posts, I found when my mum was living here that talking to her like a child to get her to have a bath and not argue on certain things worked, at the time my son was 8 so it wasn't that long since I'd had to talk to him like that (mum only stayed with me as an emergency whilst I found her suitable accomodation - she is in sheltered extra care). I know some posters haven't always felt it is the right way to go, but that was the way to avoid arguments.

On a seperate point, daughter loved Cambridge when she was there in July, so heart now set on it (predicted grades are fine, but interview process appears to be a lottery - I think interviews and offers are in Jan)
 

Angela57

Registered User
Jan 22, 2016
195
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I often think OH is manipulating me. Sometimes I wonder if he doesn't really remember what happened or he only pretends not to remember.
I felt exactly the same with my mum when I lived with her to look after her! She was obsessed (and still is, but in a home now) with her illnesses and was always complaining to me about some physical problem, and always acted like the dying swan. However, when other family members visited, she'd perk up and miraculously and be absolutely fine until they left, then she'd revert to being the dying swan again!
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
I felt exactly the same with my mum when I lived with her to look after her! She was obsessed (and still is, but in a home now) with her illnesses and was always complaining to me about some physical problem, and always acted like the dying swan. However, when other family members visited, she'd perk up and miraculously and be absolutely fine until they left, then she'd revert to being the dying swan again!
And everyone else thinks you are exaggerating :rolleyes:
Dont you just love Hostess mode........
 

Angela57

Registered User
Jan 22, 2016
195
0
And everyone else thinks you are exaggerating :rolleyes:
Dont you just love Hostess mode........
I've always maintained that my mum was/is an attention seeker, when my parents were well and retired, my dad was always telling me that he believed she was a hypochondriac, but I visited every week and she was different with me, so I didn't believe dad. After living with her and looking after her for 7 years though, I soon saw he was right. The sad bit is, I couldn't tell him that I believed him, because he was in a home with dementia and wouldn't have understood a word I said. I do feel guilty about that now.
 

Grahamstown

Registered User
Jan 12, 2018
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84
East of England
He put salt on my food as well as his own today, extraordinary considering that I never add salt and he has known this for years but no longer does. He can’t remember why we are going away for 4 days this morning. We are going to see family and friends. He has been confused in the mornings lately, but when he does his small jobs, I now say ‘good man’, and I think he likes that because so often he does things wrong and I have to take over. We shall have to do short visits so that he can recover from host mode in between. He had two days of social activities this weekend and yesterday he had to recover.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
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84
East of England
We have had 4 days away seeing family and friends. Everything worked out well but he was a complete pain in the neck the rest of the time due to the side effects of dementia. Tiredness, confusion and not knowing what was going on but it was lovely to see old friends. The husband has dementia too so seeing the two men sitting together chatting about their memory loss was both funny and poignant.
 

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