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Dutchman

Registered User
May 26, 2017
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Devon, Totnes
I became a proficient liar when my husband was ill @Dutchman.

If I had told him the truth it would have resulted in confusion , anxiety, fear of the unknown and possible defensive aggression which would not have helped either of us.

We too were always straight with each other but pre dementia it was an equal relationship. Once dementia reared it`s head I lied to protect both of us, to make life easier. It`s not a crime in my book, it was just trying to make the best of a sad situation.

I hope you will be able to get some relaxation on your few days away otherwise it will have been wasted. A bit of peace and freedom from responsibility may help just a little and I really hope you will feel the benefit.

It`s not what any of us would choose. We just try to make the best of what we have.

Thanks for your reply. Nearly going. Just about to have some breakfast and then a diversion and sloping off while my daughter keeps her mum busy. Lots of rain today and tomorrow and I don’t care. Just some time to myself .
You’re right that I should relax and enjoy. I’ll catch up when I’m back
 

myss

Registered User
Jan 14, 2018
449
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@Dutchman I really do hope you pursued with your plans for a break. A well-needed break. Do not feel any guilt at all, but if you still feel the need to justify the break, then think of it as the better you feel in yourself and after your rest, the better you be for your wife.

You hear this quite a lot of this forum but 'you are only human' and we all need a break now and again to recharge ourselves.
 

Dutchman

Registered User
May 26, 2017
2,348
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76
Devon, Totnes
I became a proficient liar when my husband was ill @Dutchman.

If I had told him the truth it would have resulted in confusion , anxiety, fear of the unknown and possible defensive aggression which would not have helped either of us.

We too were always straight with each other but pre dementia it was an equal relationship. Once dementia reared it`s head I lied to protect both of us, to make life easier. It`s not a crime in my book, it was just trying to make the best of a sad situation.

I hope you will be able to get some relaxation on your few days away otherwise it will have been wasted. A bit of peace and freedom from responsibility may help just a little and I really hope you will feel the benefit.

It`s not what any of us would choose. We just try to make the best of what we have.
@Dutchman I really do hope you pursued with your plans for a break. A well-needed break. Do not feel any guilt at all, but if you still feel the need to justify the break, then think of it as the better you feel in yourself and after your rest, the better you be for your wife.

You hear this quite a lot of this forum but 'you are only human' and we all need a break now and again to recharge ourselves.
@Dutchman I really do hope you pursued with your plans for a break. A well-needed break. Do not feel any guilt at all, but if you still feel the need to justify the break, then think of it as the better you feel in yourself and after your rest, the better you be for your wife.

You hear this quite a lot of this forum but 'you are only human' and we all need a break now and again to recharge ourselves.


So, I’m here on the campsite in our little caravan till Wednesday morning. It’s raining and I’m, believe or not, feeling a bit lonely. Understandable as I’ve never gone away on my own before and, although my wife is very annoying with her VD, it just seems a bit weird. I suppose the more you are on you’re own then it gets easier ( or not).

I was ambushed by grief yesterday on the drive down and had to pull over as I couldn’t see as my eyes were welling up. Missing doing this together when we had such plans to do normal stuff together, being surrounded by all the little feminine touches in the caravan, and you know lots of other little things.

I know she’ll be fine with my daughter to pamper and care for her. She apparently went out looking for me yesterday to our local garage as that’s where we bought the car. Daughter had to rush after her and explain (they know the situation ). Funny that although I’m not her husband anymore she still misses me. I feel so sorry for her now as she didn’t ask for any of this and she must be so miserable at times.

Anyway, enough. I’m making myself miserable as well. Lots of understanding hugs to everyone out there. Only those going through this will really understand the depth of feelings surrounding dementia.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
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Kent
There was a time when on a train for a short break I felt the train was taking me further and further away from my husband. It was a terrible feeling.

They say the first is always the worst , whoever they may be, but I'm afraid that feeling I had was much later on. It doesn't get much easier but what's the alternative?

I do hope you manage to feel some benefit from your few days away @Dutchman even if it`s not joyful .
 

Izzy

Volunteer Moderator
Aug 31, 2003
73,996
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Dundee
I’m sorry you were ambushed by grief @Dutchman. It’s understandable though. I hope your break does you good. Although you will miss your wife I’m sure it will recharge your batteries.
 

Joseph Felts

New member
Feb 1, 2019
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Hey,

Ah, I'm in tears from your post. When you say you're on your own and how it would be nice to have someone appreciate what you do and have to experience, how that would make a whole world of difference. Because that's the feeling I have at times. Just feel like I'm on my own with my father, he has advanced dementia. He drives me up the wall at times. I'm the only sibling available nearby to help out and pop in, the most. 2 brothers who are in another country, my sisters are here but practically only one of them is hands on, the other is just about.

But the sister who helps the most is busy, she's in twice a week, the other one is once a week, and just about does things. Last week, my father was up and down, interfering with things, sometimes he grips things and pulls, and can damage things. I could have done with a hug myself, much less with additional kisses.

We all know what we are going through, similarly if not identically, and it's like a war. We have to probably have a cry, like I am now, as I type, have a hot cup of beverage, take a little time to assess, and then WHEN feeling better, then just pick up after them. If there's no one to say 'Well done, Dutchman', 'Here, mate, appreciate what you're doing', nearby, then log in and come here and tell us. Because, being on your own, I doubly appreciate where you're coming from.



JF.
 

marionq

Registered User
Apr 24, 2013
6,449
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Scotland
In the past year I have often felt so low that a care home for my husband seemed to be looming. I have just come back from a weeks break and my Outlook is quite different. John was fine in the care home where he has stayed previously and held my hand going home in the taxi!

We both slept soundly last night and it may be my imagination but he seems more lucid now. He has now gone off to daycare today quite relaxed so the respite did no harm and possibly a lot of good.
 

Dutchman

Registered User
May 26, 2017
2,348
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76
Devon, Totnes
There was a time when on a train for a short break I felt the train was taking me further and further away from my husband. It was a terrible feeling.

They say the first is always the worst , whoever they may be, but I'm afraid that feeling I had was much later on. It doesn't get much easier but what's the alternative?

I do hope you manage to feel some benefit from your few days away @Dutchman even if it`s not joyful .

I’ve just come back from a couple of days away and while away I really missed her and I was a bit lonely to be honest. Now I’m home and it hasn’t taken long to get rattled by her constant anxiety, fretting and general irritating behaviour. I’ve even lost my temper and I really just want to go away again. What’s wrong with me? Am I so weak that I can’t hold my temper and just be kind? I thought when I returned I could manage to understand more and give her more consideration. But it’s so difficult. Because it’s constant it’s worn away at my ability to manage her irrational behaviour and I’m on a short fuse.
 

LizzieM

Registered User
May 6, 2019
54
0
There’s nothing wrong with you - all sounds sadly very normal from a Carer POV.
You were ambushed by grief for what you have already lost when you were driving there (love driving but it does tend to make me think over things and that brings tears) and you’ve been ambushed by the human heart which never completely gives up hope that things will get better, be better etc. once you got back.
You’ve lost your temper with disappointment and frustration because on your return reality has unkindly slugged you one with the enormity of what’s actually going on, not what you hoped however unrealistic your logical mind knows that to be.
Dementia - succubus and Dementor; we can’t change it, we can’t fix it, we can’t make it better - I hate it.
I do know though that without a long enough break (if only), enough sleep (if only), eating properly (yep, can fix that one), talking to the Admiral nurse (fantastic woman) things can look very black indeed.
I’m no Pollyanna but learning to operate solo again, taking small pleasures where i can, enjoying chance conversations, reading about the lovely people that inhabit this forum sharing their knowledge and experience are all part of me trying to cope - anticipatory grief or not I’m damned if dementia is going to completely ruin my life too.
Stay strong Dutchman ((((((hug)))))).
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
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Kent
I’ve just come back from a couple of days away and while away I really missed her and I was a bit lonely to be honest. Now I’m home and it hasn’t taken long to get rattled by her constant anxiety, fretting and general irritating behaviour.

This is what happens.

When we are away the love is still there but the behaviour isn’t , we are free from the challenges and rested, even after only 24 hours of relief.

As soon as we’re home reality kicks in and overtakes all the loving feelings we had while we were away.

Managing irrational behaviour is the tallest order going I don’t think it can be managed.

All I could do was walk away to another room. I wasn’t managing anything I was just making a feeble attempt at endurance
 

Starbright

Registered User
Apr 8, 2018
572
0
I have just now had to do exactly this walk into another room @Grannie G and have yet another weep, it is so hard to ignore or manage the mood changes, the constant irrational behaviour, then when he’s rested and asleep I think tomorrow is another day I can do this I can I can. Those sleeping times are precious that’s the only time I know I still love him .

((((((Hugs ))))) A x
 

Loisand

Registered User
Dec 25, 2017
135
0
I’ve just come back from a couple of days away and while away I really missed her and I was a bit lonely to be honest. Now I’m home and it hasn’t taken long to get rattled by her constant anxiety, fretting and general irritating behaviour. I’ve even lost my temper and I really just want to go away again. What’s wrong with me? Am I so weak that I can’t hold my temper and just be kind? I thought when I returned I could manage to understand more and give her more consideration. But it’s so difficult. Because it’s constant it’s worn away at my ability to manage her irrational behaviour and I’m on a short fuse.
There isn't nothing wrong with you, it's called feelings for your loved one...
I get 7 hours of per week from careing for mom, I love it, but then you just get straight back into the routine, same old same old, I worry when I'm away, do others keep her in her routine...no....why I have always got to get her back in routine, at the same time like you she's irritating with the same questions over and over again....yep feelings for the one you care about the most...hugs across the airwaves Dutchman from another lonely person on TP x
 

lis66

Registered User
Aug 7, 2015
277
0
Feel your pain Dutchman my mother has ad and vascular dementia ,for six years it's horrendous and heartbreaking and you go through so many emotions (( hugs)) to you ,you are not alone xx
 

lis66

Registered User
Aug 7, 2015
277
0
Great point Normaleila that I should take on board regarding my mother when the time comes for her to go into care as I am really struggling with the thought of it ,but I have to think of my 85 year old father who still lives with mum x
 

Dutchman

Registered User
May 26, 2017
2,348
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76
Devon, Totnes
Hi everyone. Our carer is here and has taken wife upstairs for the long anticipated wash. Fingers crossed it happens and I’ll let you know. Carer said that her company can also do some cleaning for me during our 2 hours so that would be a help. It’s strange having another women walking around the house looking at all our stuff, commenting on what she’d like to do in the way of cleaning, bed making, clothes washing so I expect I’ll just have to get used to it. Waiting for the sound of the water pump now and then we know we’re in business.
 

Dutchman

Registered User
May 26, 2017
2,348
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76
Devon, Totnes
That's good news. Fingers crossed that the water pump starts pumping :)
Hi everyone.

I’ve arrived back home after a day at the day surgery department at our local hospital. A bloke procedure that will determine what happens next.

My brother in law looked after my wife for the day. While in the waiting room before going in to the theatre I had time to think ( too much time) and what struck me and was very upsetting is that before VD my wife would have been with me for support and comfort. We would talk, hold hands, moan a bit and be there for me. All gone. She didn’t even ask how I got on when I got home. Just fretted about me not being at home and was a general nuisance to my brother in law, so much so that I phoned my neighbour to come round and help out.

It’s so sad when that closeness and companionship is gone. You are really on your own even though you have others around you. For me only my wife would have had that special relationship that meant so much. Oh how I wish sometime that I hated her instead of how much I’ve loved her.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,415
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Newcastle
A very poignant post @Dutchman and sadly familiar. It really is hard when all empathy and closeness has gone. My wife was not interested when I left her with my sister to go for a scan at hospital one evening. Nor did she show any interest when I came home, except in relation to her own needs whilst I had been out. And I still had to wash the dishes when I got back!
 
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