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Olliebeak

Registered User
Sep 13, 2014
132
Buckinghamshire
I once. heard a psychologist describe a marriage has having 3 legs. -
- the emotional relationship - love, affection and family
- the physical relationship - hugs, kisses and those familiar touches as well as sex
- the academic - sharing the “stuff” of life, shared interests, conversation, enjoying going out or staying in

If one of those legs is removed the other two can just about hold it up but if two legs go there is very little left. B**** disease
 

Joyt

Registered User
Jun 30, 2018
48
I once. heard a psychologist describe a marriage has having 3 legs. -
- the emotional relationship - love, affection and family
- the physical relationship - hugs, kisses and those familiar touches as well as sex
- the academic - sharing the “stuff” of life, shared interests, conversation, enjoying going out or staying in

If one of those legs is removed the other two can just about hold it up but if two legs go there is very little left. B**** disease
Oh that is sooo true.
 

Duggies-girl

Registered User
Sep 6, 2017
1,855
So sorry to hear this @canary I was lucky with dad as he kept his conversation and interests right to the end. It could be a bit wearing at times but I would love to have another chat with him now.

It's just not fair really.
 

White Rose

Registered User
Nov 4, 2018
558
I once. heard a psychologist describe a marriage has having 3 legs. -
- the emotional relationship - love, affection and family
- the physical relationship - hugs, kisses and those familiar touches as well as sex
- the academic - sharing the “stuff” of life, shared interests, conversation, enjoying going out or staying in

If one of those legs is removed the other two can just about hold it up but if two legs go there is very little left. B**** disease
That is so true.
 

canary

Registered User
Feb 25, 2014
12,258
South coast
It is a very difficult place that so many of us have reached. OH is trapped in his own little bubble. He can speak and, if he wants to, can talk to you about climate change, Brexit, or one of the other things that he has read on his tablet. But I suspect that when he does that it is part of the "Host mode" and he doesnt want to do that with me. He used to read out some of the things that he read, or we could watch TV together and he would pass the odd comment, but he doesnt want to anymore.
that "loneliness" is much like the moment you stand amidst the bustling life of a major city with all the ongoing activities and the normality of daily life happening all about you, and yet you cannot engage, because the loved one you cared for is no longer there, no longer a part of your physical and mental norm of daily life
This is it, this is it in a nutshell - it is like sitting next to a stranger on the underground.
I once. heard a psychologist describe a marriage has having 3 legs. -
- the emotional relationship - love, affection and family
- the physical relationship - hugs, kisses and those familiar touches as well as sex
- the academic - sharing the “stuff” of life, shared interests, conversation, enjoying going out or staying in

If one of those legs is removed the other two can just about hold it up but if two legs go there is very little left. B**** disease
Yes, all three have now gone.
I have joked that I have become a midow, but for the first time I now feel it.
 

Hazara8

Registered User
Apr 6, 2015
416
We naturally apply a " norm" of reaction and response to anyone we encounter. This is of course much more significant in a spouse or someone very close to us. Thus we recognise all the traits of indifference, stubbornness, accord, mutual understanding, humour, sadness- the list goes on. But dementia appears to create a new " norm" in which the logic of response and familiar behaviour becomes something very different. For us, a muddle and a frustrating one at that, because our " norm" no longer seems to be in tune with the loved one we have known so very well. That alienation however is seemingly the actual "norm" of the loved one. And in extremus of such, you confront the scenario of a loved one gazing into a plate of chicken and insisting to the point of increasing anger, that it is in fact fish! Or insisting that one is not yet dressed...despite being fully clothed? Each of these experienced conundrums was frequent and taxing - until l understood the credo NEVER ARGUE WITH DEMENTIA! The new " norm " inhabiting the loved one is as real to them as is the hand on their wrist, no matter how much you challenge them, that remains set in stone. But not always. Therein lies the true challenge. In ascertaining by each moment, where the new "norm" presents and the actual loved one "returns" even for an instant and you cherish that moment with a vengeance. The brain is extraordinarily complex and remarkable beyond words. Dementia in all its varied forms plays havoc with this wonderful creation and the expression is manifested in our having to bear the consequences of such in our loved ones. Our loved ones of course, bear much more in a kind of isolation, of which we continue to strive to understand as best we can. But there remains something else. Something l have seen directly and which is not fiction nor wishful thinking. That is the unfathomable power of the human spirit. The joy which shines out of weary and frail eyes at the touch of a hand.... the sudden resurgence of life in a disabled body at the sound of a familiar song.... the heart-warming sight of a group of people in the throes of late stage Alzheimer's clapping hands and being "happy" in the moment despite everything. More profound experiences l will refrain from citing here. But at the end of the day, we as human beings have the capacity to engage in a way not given to probably any other form of life on this planet. Thus any life, is precious, if not sacred. This dementia journey sheds the veil of the trivial and the mundane certainly, but above all, it informs us of our humanity and our vulnerability in a way which can only enhance what it truly means to be human and what it means to be alive.....and to know that love conquers all.
 

CherryTT4

Registered User
Dec 5, 2019
33
Wiltshire
We naturally apply a " norm" of reaction and response to anyone we encounter. This is of course much more significant in a spouse or someone very close to us. Thus we recognise all the traits of indifference, stubbornness, accord, mutual understanding, humour, sadness- the list goes on. But dementia appears to create a new " norm" in which the logic of response and familiar behaviour becomes something very different. For us, a muddle and a frustrating one at that, because our " norm" no longer seems to be in tune with the loved one we have known so very well. That alienation however is seemingly the actual "norm" of the loved one. And in extremus of such, you confront the scenario of a loved one gazing into a plate of chicken and insisting to the point of increasing anger, that it is in fact fish! Or insisting that one is not yet dressed...despite being fully clothed? Each of these experienced conundrums was frequent and taxing - until l understood the credo NEVER ARGUE WITH DEMENTIA! The new " norm " inhabiting the loved one is as real to them as is the hand on their wrist, no matter how much you challenge them, that remains set in stone. But not always. Therein lies the true challenge. In ascertaining by each moment, where the new "norm" presents and the actual loved one "returns" even for an instant and you cherish that moment with a vengeance. The brain is extraordinarily complex and remarkable beyond words. Dementia in all its varied forms plays havoc with this wonderful creation and the expression is manifested in our having to bear the consequences of such in our loved ones. Our loved ones of course, bear much more in a kind of isolation, of which we continue to strive to understand as best we can. But there remains something else. Something l have seen directly and which is not fiction nor wishful thinking. That is the unfathomable power of the human spirit. The joy which shines out of weary and frail eyes at the touch of a hand.... the sudden resurgence of life in a disabled body at the sound of a familiar song.... the heart-warming sight of a group of people in the throes of late stage Alzheimer's clapping hands and being "happy" in the moment despite everything. More profound experiences l will refrain from citing here. But at the end of the day, we as human beings have the capacity to engage in a way not given to probably any other form of life on this planet. Thus any life, is precious, if not sacred. This dementia journey sheds the veil of the trivial and the mundane certainly, but above all, it informs us of our humanity and our vulnerability in a way which can only enhance what it truly means to be human and what it means to be alive.....and to know that love conquers all.
Thank you - this helps with so much - sending hugs and xxx'x
 

Yunosida

New member
Sep 29, 2019
7
Hi Canary,
Finally I have someone who shares the same feeling as mine. Though my husband has noy been diagnosed as he refused.my life is empty.There is a person sitting infront but not communicating.worse is he ignored me. Thats the saddest part of my life.
 

canary

Registered User
Feb 25, 2014
12,258
South coast
Hello @Yunosida , yes, I think its the hardest symptom
I have found, though, from this thread that I am not alone with it and neither are you
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))
 

White Rose

Registered User
Nov 4, 2018
558
The joy which shines out of weary and frail eyes at the touch of a hand.... the sudden resurgence of life in a disabled body at the sound of a familiar song.... the heart-warming sight of a group of people in the throes of late stage Alzheimer's clapping hands and being "happy" in the moment despite everything.
Thank you for this reminder @Hazara8. My partner has been really grumpy and miserable this evening, he wants to get a job and is angry with me because I won't help him find one - I just reached out and held his hand and he smiled at me. It really doesn't take much effort to spread a little joy but we carers are just so bogged down with the day to day stresses, exhaustion, frustration, etc that I guess we forget or haven't the energy - or we're just plain resentful of everything we have to do for them at the expense of our own lives.
 

Starbright

Registered User
Apr 8, 2018
515
Hello @Yunosida , yes, I think its the hardest symptom
I have found, though, from this thread that I am not alone with it and neither are you
((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))
I feel so lonely @canary in a different way because he’s quite demanding and as long as I don’t ask him to do anything((“ There are things I have to ask him to do”))or I react quickly to anything he asks for we have a quieter life as he doesn’t get frustrated and then agitated and angry.... @White Rose I agree with you perhaps we are just too ....... exhausted with the never ending grind of this vile illness that sometimes I think is dragging me along the same road as my OH.
A x
 

Hazara8

Registered User
Apr 6, 2015
416
Thank you for this reminder @Hazara8. My partner has been really grumpy and miserable this evening, he wants to get a job and is angry with me because I won't help him find one - I just reached out and held his hand and he smiled at me. It really doesn't take much effort to spread a little joy but we carers are just so bogged down with the day to day stresses, exhaustion, frustration, etc that I guess we forget or haven't the energy - or we're just plain resentful of everything we have to do for them at the expense of our own lives.
I understand entirely. This is not at all easy because it requires a mind set which verges on a kind of "detachment " - but if you can treat the expressions of dementia in a loved one, as t'were from a stranger and NOT as from the one you know so very well, in effect not to take the flack personally but treat it like that sudden burst of rainfall just when you have put the washing out - as an irritant which belongs to something outside the fundamental I.e. the actual person. This is not a walk in the park at any level, but when we know who our loved one truly is and that grumpiness or aggression is that disruptive rainfall, then it might be slightly easier to cope. Every case is different and some find smoother pathways just by sheer luck of situation and the nature of this disease. But we are only human and not superhuman. Physical exhaustion alone can become simply unacceptable. Mental exhaustion and despair will take its toll. Denial is foolhardy as are pat solutions or trite advice. But if we can recognise what constitutes the " dementia person" as opposed to the REAL person, then we can treat the former not with contempt, but with awareness and as the imposter it is. And when you take hold of a hand, even without a word being spoken, that connection is a mutual confirmation of just what we are in essence. Hold onto that and something happens which goes beyond dementia with all of its destructive arsenal. And it is never cause for guilt when you take care of yourself, because in so doing you are then able to continue to care for the loved one in question.
 

canary

Registered User
Feb 25, 2014
12,258
South coast
I feel so lonely @canary in a different way because he’s quite demanding and as long as I don’t ask him to do anything((“ There are things I have to ask him to do”))or I react quickly to anything he asks for we have a quieter life as he doesn’t get frustrated and then agitated and angry....
I had that until fairly recently, but now there isnt even that. Its lonely either way.
 

Pipeth

Registered User
Jan 13, 2018
129
Northamptonshire
Canary wishing you continued strength through this phase, I can empathise entirely. Thank you for all your wise words and posts that always stimulates great helpful conversations on here. Sending ((((((hugs)))))
 

Pipeth

Registered User
Jan 13, 2018
129
Northamptonshire
Hazara8 Quote:And when you take hold of a hand, even without a word being spoken, that connection is a mutual confirmation of just what we are in essence. Hold onto that and something happens which goes beyond dementia with all of its destructive arsenal.

Hazara8 Your posts are so helpful, I have been adjusting to ‘new norms’ at quite a pace. My husband responds well to me now reaching for his hand And making eye contact when he is consumed with anxiety, confusion or fear.A while ago he would pull away with anger, because to him I caused his ‘problem’, (we always held hands when out and about or sitting at home.) he was at times very difficult, this phase has passed, hopefully not to return.His language is disappearing rapidly and He cannot follow TV. Like Canary is facing, loneliness was setting in for me to, as far as conversation and sharing interest. So I took someone’s advice to revive interest from his (and mine) teenage years. Hence, bought husband a portable record player and vinyls, installed a tropical fish tank and started going on short day coach trips (sitting him in front so he could watch the road). Now this sounds all very easy, but of course it wasn’t, I dragged him around buying records, Buying fish and coaxed him to get up for trips, listened to all the grumbled about other people etc.....His temperament gradually changed, music helped a lot. Except he is now months later struggling to use the record player and he is getting tired on the trips. So probably heading for another ‘new norm’, but we have made some pleasant memories after some not so good ones occurring and the essence of us exist again when I hold his hand, hopefully to last a while.
 

canary

Registered User
Feb 25, 2014
12,258
South coast
Im glad that you have managed to find some sort of connection @Pipeth and have made some happy memories .

Lots of people have mentioned music, but unfortunately OH does not like music. I think he gets stimuloous overload and if I play music he stomps off into the conservatory and shuts the door.
 

Pipeth

Registered User
Jan 13, 2018
129
Northamptonshire
Morning Canary, it has been good to have some ‘light relief’ from those dark days; you were one of the lovely people that answered my posts, letting me know I wasn’t alone. Giving me advice and knowledge to stay sane. The TV makes my OH very agitated, he takes himself out of the room and makes me feel as if I am abandoning him, he says repeatedly that it’s all rubbish and the world is mad. I very often give in and switch it off until he is in bed, which is early evening sometimes. Stimulus overload is a problem, on our day trips He can’t cope with other people chatting, so we only do short trips and he wears ear plugs or earphones. It really is like having a child to entertain, hoping he will ‘behave’. Hoping today is as good as it can be for us all on here, take care ((((hugs))))XXXX
 

DesperateofDevon

Registered User
Jul 7, 2019
2,660
💞
((((((((((hugs)))))))))))
Lots of love & virtual hugs
Today or any day can feel lonely but you are in my thoughts so not alone
Xxxx