Who has stolen my husband?

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Thank you.... I take comfort from your words as I know I’m not alone.
Please take care of yourself. Your biggest fear is probably the same as mine... what would happen if something happens to you and me?
With love B xx
I felt that yesterday when I tripped over and was shaken for a few minutes but I was not hurt fortunately but it did bring home how vulnerable both we and our loved ones are. Sleep well x
 

Mudgee Joy

Registered User
Dec 26, 2017
675
0
New South Wales Australia
Hello all - I am in the same boat but perhaps a little further on now as my husband make small offers of help but :(is too tired to contribute.
And thankfully I haven’t got to mopping the bathroom floor more than once a week . But still I have been an absolute “cot case” lately - as my mum would have said- :confused:crying and yesterday in public - so frustrating - someone offers a kind word and I cry !! Some meals and flowers arrived that afternoon - very kind.
I do think I will manage on my own again one day and I have to say I hope it’s while he still lives at home - I don’t want to put him in a care home because it will mean I can’t manage - and that’s hard to admit.
I should really like some laughter again and as a few have said here - days , hours or even a week away would’ve bliss and help me cope.
 

AliceA

Registered User
May 27, 2016
2,911
0
Yes, this rings so true of us too. My husband used to do everything to upkeep the houses and taught our daughter. Then we had to get people in and he questioned their every move albeit in a 'tactful' way, well to him! they were patient and understood.
Last year happily let me project manage a small extension, I did keep saying he had taught me well. This year he is quite detached........
Our daughter put up a garden light and she said how noticeable the change is, tears have welled up writing this.
All our life together we were a couple back to back, Now that has softened into a vague 'USness' I am not sure how to explain.
The nearest I can get is pregnancy being totally responsible for another soul, feeling every move they make, they reacting to my mood.
My body reacts to the situation in a similar way as when pregnant my emotions seem more intense, I tire, I want soothing 'feel good' music, I read to learn more about the new reality.
Like pregnancy I feel this is a very important stage we are going though.
Thinking of these things I realise I am preparing the home for the next stage,
'Packing a virtual bag' in case of an emergency.
As I quietly sit here old tactics fall into place. When our eldest woke up she would stay happily in her cot until she saw me. Now when I hear him stir I stay quiet! :):):)
 

AliceA

Registered User
May 27, 2016
2,911
0
Some thing happened last night. I am extremely allergic to wasps and carry an epipen. The warm weather has meant we have been inundated with queen wasps. One evaded the netted windows and got in the bathroom.
Suddenly my husband was back, he stunned it with a bat that knocked it somewhere. He spent a long time trying to find it. Finally did and flopped out exhausted. My hero was back now he sleeps ..........
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
Tears flow as I read your posts @Mudgee Joy and @AliceA which happens to me a lot now as I see his fragile body looking so dependently at me as he continues to try and be normal. Yesterday he said that he felt funny inside his head which for some reason is preying on my mind. I tried to explain to him yesterday but he can’t understand and thinks he can ‘fly to the moon’. Even that is heartbreaking.
 

AliceA

Registered User
May 27, 2016
2,911
0
Tears flow as I read your posts @Mudgee Joy and @AliceA which happens to me a lot now as I see his fragile body looking so dependently at me as he continues to try and be normal. Yesterday he said that he felt funny inside his head which for some reason is preying on my mind. I tried to explain to him yesterday but he can’t understand and thinks he can ‘fly to the moon’. Even that is heartbreaking.

Oh, it feels like been stabbed, the pain is so real.
If only we could really understand another's reality if we could it might not be as painful. We see it though our eyes. If he climbs on the roof be worried, but is he perhaps trying to convey an inner experience?
Who knows we can only guess. Our inner experience is such a mystery, some neuroscientists are saying the mind in not in the brain but the brain acts as a filter. We know so little. Xxx
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
I finally lost my OH on Friday. Went to see him in the respite care home but he was not there. There was a very old shuffly man who talked endlessly about nonesensess, who seemed to recognise me vaguely but had no idea who I was in relation to him, recoiled when I tried to give him a hug or hold his hand and instead of begging me to take him home (as I expected) could not wait to see the back of me, shooing me away, because I was, apparently, about miss my flight or the ferry?????

We have been a couple for 55 years, married for 53, all wiped from his memory.
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
I wasn’t going to log on today, but just read your heartbreaking message.
I feel so sad for you. That sudden realisation must have been very hard for you.
I know I will be there some day... who knows when and where.
But I’m sending you my love and thinking about you.
B xx
 

AliceA

Registered User
May 27, 2016
2,911
0
So very sad to hear, it must have been a real shock, I really feel for you it is heart breaking. Words are just not enough with, love Alice xxx
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
I finally lost my OH on Friday. Went to see him in the respite care home but he was not there. There was a very old shuffly man who talked endlessly about nonesensess, who seemed to recognise me vaguely but had no idea who I was in relation to him, recoiled when I tried to give him a hug or hold his hand and instead of begging me to take him home (as I expected) could not wait to see the back of me, shooing me away, because I was, apparently, about miss my flight or the ferry?????

We have been a couple for 55 years, married for 53, all wiped from his memory.
I am so sorry for this loss you have suffered. It is a tragedy for you and I can say no more than that. (((Hugs)))
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
This discussion and video about memory and feelings is all helpful to those of us battling with the disease in our loved ones. I know I need all the help I can get. Today the family came in the morning, he was still asleep in bed, we went for a walk with the dogs and he was still in bed when we got back with my white board message unread. Our daughter got him up, our son helped to shave him and he joined us for an hour and a half and then had to lie down again. They saw him as he really is and now realise why I cannot take him to the airport in three weeks time. So my instincts are right.
 

Wifenotcarer

Registered User
Mar 11, 2018
341
0
77
Central Scotland
Thank you for your kind thoughts Sadstaffs, Grahamstown and Alice]
Yesterday, I could scarce drag myself out of bed or bother to get dressed. Thankfully my widowed sister phoned, also in the dumps as her family are away on holiday and then my younger daughter called to say that she _+ Grandaughter were on their way to collect me to take me to the seaside, via the Forth Crossing road bridge which I had not crossed before We picked up my big sister too and it was wonderful. Warm and sunny all day. We walked all the way along the front and then all the way back, paddling at the watersedge. Lunch in an Italian cafe and back there for ice creams before we set off for home Blissfull. Slept like a log but woke this morning back at (or below) rock bottom again, unable to motivate myself. A little taste of freedom brings home to you what you are missing. 1.00pm and not a dish washed, bed made though I did manage to water the garden. Am I suffering from depression? I believe I am but cannot see a way out.
 

Dutchman

Registered User
May 26, 2017
2,353
0
76
Devon, Totnes
So many will understand how you feel @Dutchman
Trouble is, it’s such a lonely existence.
We are a couple, but not a couple.
It’s so hard having to do everything yourself, when you have shared your life together until this awful disease took them.
I remember when my Mom was diagnosed with cancer and it felt like something so very alien was eating her slowly. Now, so many cancers can be treated, but there is no treatment for dementia.
I now think of it as something slowly consuming my husband. It’s as if it’s eating all the happy, loving, caring, considerate parts of him, leaving me with the unpleasant bits. What makes it even worse is that he hosts so well, and family and friends never see what I see.
I can understand why you feel life would be better on your own, it would be a relief.
I am not in that position yet, but I know it will come, and I lie in bed wondering how I will cope.
Who has stolen my husband? I don’t know.... but life can be so cruel.
B xx
I’m sitting here after coming back from our family for Easter. Half way back she asks me who’s she’s married to and I say me. Now she refuses to remember our early year photos, who I was so now feel like a stranger. Who’s going to bed with you tonight I ask. He is she says. Who is he it isn’t me. So now, as I sit here, I wonder how I handle this as closeness is going and her emotions for me as her husband seems to have disappeared. I get angry and frustrated and I know that none of this she can help, it’s just this cruel dementia.
 

Dutchman

Registered User
May 26, 2017
2,353
0
76
Devon, Totnes
I’m very upset as she’s now denying that she had a husband and she loves me as a friend only. No matter how many photos I show she doesn’t accept that I’m the man she married, he’s someone else. Where he is is anyone’s guess! I hoping her daughter can talk to her and spark some memory but I suspect not. So what do l do now? Just together as friends, is that the best I can hope form? Is this the next stage downwards? How long is it to even worse circumstances?
 

karaokePete

Registered User
Jul 23, 2017
6,567
0
N Ireland
I’m very upset as she’s now denying that she had a husband and she loves me as a friend only. No matter how many photos I show she doesn’t accept that I’m the man she married, he’s someone else. Where he is is anyone’s guess! I hoping her daughter can talk to her and spark some memory but I suspect not. So what do l do now? Just together as friends, is that the best I can hope form? Is this the next stage downwards? How long is it to even worse circumstances?
This sounds similar to, but not identical to, Capgras Syndrome. This is where people/places are thought to have been replaced by identical imposters. I say similar because your wife thinks you are a friend, rather than an imposter.

I have had a couple of instances like that which I have previously documented on the forum. However, they have not been repeated for several months now. I hope that it's temporary for you too.

I recently read that this issue can be caused by the loss of the emotional connection to the person. This means that the special tie between H&W is lost so they think the spouse must be someone else.

It is an emotional issue but we do have to accept that Dementia is a progressive syndrome and wherever we are at the present time is as good as it will ever be.

It's very tough and I feel the same as you.
 

Dutchman

Registered User
May 26, 2017
2,353
0
76
Devon, Totnes
This sounds similar to, but not identical to, Capgras Syndrome. This is where people/places are thought to have been replaced by identical imposters. I say similar because your wife thinks you are a friend, rather than an imposter.

I have had a couple of instances like that which I have previously documented on the forum. However, they have not been repeated for several months now. I hope that it's temporary for you too.

I recently read that this issue can be caused by the loss of the emotional connection to the person. This means that the special tie between H&W is lost so they think the spouse must be someone else.

It is an emotional issue but we do have to accept that Dementia is a progressive syndrome and wherever we are at the present time is as good as it will ever be.

It's very tough and I feel the same as you.
Thanks karaokePete. What you say is a comfort in a way as someone can explain the ins and outs of what’s going on. I’ve often thought that now is the best it gets. It’s hard to accept that life is never going to improve .....it’s like child behaviour in reverse...your OH is not going to grow out of it. So as a friend I’m getting into her bed tonight....she doesn’t seem fazed by this at all!
 

karaokePete

Registered User
Jul 23, 2017
6,567
0
N Ireland
I make a joke about the sleeping with a stranger @Dutchman.

I have been used to my wife mistaking my identity for a parent or friend for a couple of years. However my first actual “Who are you?”, moment came last summer when my wife shook me awake between 2-3am to ask me who I was and refused to settle until I had sat up and introduced myself with the formality of a handshake! I don’t know what sort of night she felt she had been having to have woken up beside a stranger.:) That tale always gets a bit of a laugh when I tell it - better that than crying is what I say.

All that explains why I said I feel what you feel. I’ve been there, done that and, maybe I should get a T-shirt with print that reads “Hello, I’m Pete, I’m your husband” on it:D
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
TP also saved my sanity - I did not find it until my husband Henry was 10 years into dementia (vascular) and those years just the two of us at home. Then his last 5 years in a care home It has been helping me ever since through the long decline, death June 2 years ago and my grief as well as my own health problems since.

Canary I can so relate to what you say with Henry it was also personality and behaviour so changed from early on with dementia, the verbal aggression was indescribable. The fighting you all the way it is a no-win situation.

I found it difficult to tell myself it is the illness the disease that it is not him dementia, when it was him opposite me at home beside me in the car he was ravine ranting insulting and everythjng was my fault. the insults were very personal - this was my previously kind and very caring man ( kind by nature and in general as well as personally and there were times I did feel he was aware how nasty he was being. He once very quietly said "I give you a hard time don't I and I replied " yes you do".

Yet he could revert back to how nice he once was - his true self - in from of others. Off and one,

I miss what you miss the reassurance the comforting words - everything

I think we can all relate to every post on this thread. The loneliness, isolation frustration anger, resentment and more

I miss the warm hug which said so much

Thoughts and love,
Loo xxx
My heart goes out to all of you somehow you do find the strength the ability to carry on. Don't think too much about the future it is enough just getting through each day.
 

Loopiloo

Registered User
May 10, 2010
6,117
0
Scotland
Oh Pete you did make me laugh - sorry (but with you and not at you!)and yes better to laugh that cry but damned hard a times,
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Thank you for your kind thoughts Sadstaffs, Grahamstown and Alice]
Yesterday, I could scarce drag myself out of bed or bother to get dressed. Thankfully my widowed sister phoned, also in the dumps as her family are away on holiday and then my younger daughter called to say that she _+ Grandaughter were on their way to collect me to take me to the seaside, via the Forth Crossing road bridge which I had not crossed before We picked up my big sister too and it was wonderful. Warm and sunny all day. We walked all the way along the front and then all the way back, paddling at the watersedge. Lunch in an Italian cafe and back there for ice creams before we set off for home Blissfull. Slept like a log but woke this morning back at (or below) rock bottom again, unable to motivate myself. A little taste of freedom brings home to you what you are missing. 1.00pm and not a dish washed, bed made though I did manage to water the garden. Am I suffering from depression? I believe I am but cannot see a way out.
Hello @Wifenotcarer
It’s so good that your family care so much about you and took you and your big sister out for the day. I’m so pleased you had these few hours for yourself.
I can understand that waking up the next day you were rock bottom again. For me I sometimes wake up and think about how my life is now and it can hit me like a sledgehammer.
I don’t know whether you are depressed, but our lives are such that it is no surprise if we are. My GP suggested I take antidepressants, but I was adamant I didn’t want them. I felt it would stop me from being able to cope with all that is now my responsibility. But, every time my GP offered kind words I cried, and I realised that I was depressed, nothing was going to change, so perhaps antidepressants were going to help me. And for me they have helped. I don’t lie in bed crying for how our life is. I still lie in bed not sleeping and worrying about how much I want my husband to be the man he used to be. That will never happen, I know it can only get worse, but I don’t feel sorry for myself like I did.
But we are all different. We all cope differently.
Please take care of yourself.
I’m thinking about you, much love, B x