This isn’t a marriage much of the time..........how can I stand it?

[Wifenotcarer]

I have now had two "garden visits" with my beloved husband. He is still my beloved, but I am not his. He has no idea who I am, resents being dragged outside away from his Care Home Family and can't wait for me to leave so that he can get back in, where he is totally free of responsibilities or worries, for a meal or a sleep. To all intents and purposes, I am now a widow - living alone, managing all the financial stuff, repairs, MOT, the garden, everything by myself.

I miss him dreadfully. Miss his humour, his cuddles, his wise counsel, his shoulder to cry on. I find comfort in the fact that he is contented, healthy, well cared for, ect. but he is no longer 'mine'. Damn Dementia. Damn Covid19.

 

[Hazara8]

I have now had two "garden visits" with my beloved husband. He is still my beloved, but I am not his. He has no idea who I am, resents being dragged outside away from his Care Home Family and can't wait for me to leave so that he can get back in, where he is totally free of responsibilities or worries, for a meal or a sleep. To all intents and purposes, I am now a widow - living alone, managing all the financial stuff, repairs, MOT, the garden, everything by myself.

I miss him dreadfully. Miss his humour, his cuddles, his wise counsel, his shoulder to cry on. I find comfort in the fact that he is contented, healthy, well cared for, ect. but he is no longer 'mine'. Damn Dementia. Damn Covid19.

Acceptance is too easy a concept and yet you cannot challenge the facts in all of this, these being the daily happenings whatever they might be. Dementia is like an iceberg. A vast unknown or unseen part of it remains hidden. Despite all the researches and careful application of " tactics" to address demented behaviour, the unknowns make the management, the relationship extremely challenging. The "unknowns " are what keep us going despite the exhaustion, frustration, the daily slog of trying not to blow your top, or storm out the house and declare " enough is enough!!". The unknowns which are ' terminal lucidity ' or the fact that the blank stare of non recognition can often camouflage a "feeling" which comes about because you are there, a feeling which knows you but does not recognise the physical you. As memory decays a kind of here and now comes into play, subject to not just the neurological disease, but environment, medication, undeclared pain, etc., The 'stranger' who is the husband or wife of many years, retains something which is still a mystery. It is like that moment a particular tune or song suddenly sparks recognition.. a name evokes fleeting response, or most rewarding of all - a genuine moment of communication which is neither imagined nor a fanciful sentiment. Then one takes the " shift" in a relationship as it changes because if you don't it will ultimately destroy you. The " shift" might be the transition into Care. Whatever, it is completely one-sided in as much as the dementia partner, spouse, mother, father et al do not participate. Their journey is almost set in stone and their dementia cannot communicate with you. The person CAN.

When l was much younger l knew a lady who lived with her mother. Their lives were lively and filled with fun and it worked. Then dementia struck the mother. After a short period the mother became antagonistic to the daughter. Then, the moment came when the mother wanted the daughter " stranger" out of the house. Needless to say it was utterly devastating for the daughter. Her life was in effect destroyed. At that time dementia was seen as an "ageing " disease and the implications which accompanied the disease were not openly discussed. At least that is mo longer so. We can share on here and share " reality" and all its variants. That does not make things easier as such, but it at least allows for expression of feeling and the listening ear of all those who are living this reality. That must help. Because you do not have to explain. You do not have to convince. You do not have to make kind apology to friends or siblings who through no fault of their own, just simply cannot possibly comprehend the reality.

By the same token in this restrictive time with liberties governed by an invisible enemy and people learning about "isolation" perhaps for the very first time, one can point to a parallel existence which is being lived by so many in so many different guises and which finds voice on here, without parameters. At the same time we give voice to those living with dementia and that has to be unquestionably all-important.

 

[jennifer1967]

Acceptance is too easy a concept and yet you cannot challenge the facts in all of this, these being the daily happenings whatever they might be. Dementia is like an iceberg. A vast unknown or unseen part of it remains hidden. Despite all the researches and careful application of " tactics" to address demented behaviour, the unknowns make the management, the relationship extremely challenging. The "unknowns " are what keep us going despite the exhaustion, frustration, the daily slog of trying not to blow your top, or storm out the house and declare " enough is enough!!". The unknowns which are ' terminal lucidity ' or the fact that the blank stare of non recognition can often camouflage a "feeling" which comes about because you are there, a feeling which knows you but does not recognise the physical you. As memory decays a kind of here and now comes into play, subject to not just the neurological disease, but environment, medication, undeclared pain, etc., The 'stranger' who is the husband or wife of many years, retains something which is still a mystery. It is like that moment a particular tune or song suddenly sparks recognition.. a name evokes fleeting response, or most rewarding of all - a genuine moment of communication which is neither imagined nor a fanciful sentiment. Then one takes the " shift" in a relationship as it changes because if you don't it will ultimately destroy you. The " shift" might be the transiti

 

[jennifer1967]

well said i think you are right . my belief is treasure them while they are here. yes i cry but i try not to in front of them if possibly help it. plenty of time later but its heartbreaking how life and our marriage has gone along

 

[Buteo]

I am not a spouse any more but more like a parent to a very large and dependent toddler. The clever, empathic person she was has been taken away by Alzheimers. More of her disappears all the time. Her conversation is a random stream of consciousness and she doesn't understand most of what I say. Body language and muscle memory are all she has left. She can, with help, clean her teeth and feed herself but not much else. My tank is empty after five years of care. It's only love that keeps me caring for her, as if she's my child.

 

[Francisco]

I dont have a marriage now either. The person with dementias world narrows and narrows as they progress so that all they can see are their own needs wants and comforts. They lose the ability to see that other people have needs and feelings that they aught to consider or respond to. I remember the time I first realised that there was no "us" anymore. I had been planning things for us to do, for us to enjoy and then suddenly realised that OH did not consider me at all - there was no "us" in his mind at all, I simply wasnt there.

I have had to step back from him emotionally and, like marionq, I have built invisible armour around myself



I have felt the volcanic heat of your rage scorching my skin
And the lava of your words searing my soul,
So I have built, crystal by crystal, transparent walls around myself
And sheathed my limbs in frozen armour
Ice to fight fire.
I have packed out the cracks in my heart
With the frozen rivulets from my cheeks
And turned my eyes winter grey

Now your words slip off my frictionless surface
I am preserved within this sarcophagus
With hieroglyphics engraved on my breastbone
It doesnt matter
I dont care
I didnt want it
Anyway
Just to remind me, in case I too forget
And start to dismantle my protection

We're at the stage where there is gratitude for what I do, and there is still "us", but when she asks me what I've been doing and I reply that I was ordering the groceries, emptying the waste bin, preparing the evening meal and hoovering the lounge, she is likely to say, "Well I did all that for 40 years..." in other words, "Its about time you did something!" Gratitude yes, as long as I don't appear to be portraying myself as a full-time carer.

 

[Violetrose]

My husband has ALZ and has been Sundowning for 4 months - he forgets who I am/doesn’t recognise me, thinks I am Housekeeper/Carer, on bad days an unwelcome interloper. I find it really difficult to go along with his delusions (where do you live? Who pays you? Do you like this part of (Town)?.). It really hurts that he doesn’t know me, and I’m struggling to find a sense of humour to lighten things.
In any case our marriage no longer feels like one. I do virtually everything, or clear up after he’s tried to help, including finances, planning, shopping meal prep, tho I have help with cleaning and garden. He sleeps late (sleeping tablet effect?) and then has zero drive to get anything done. Conversation is stilted or non-existent, we don’t like the same tv progs, he is very hard to motivate to go out, even just for a walk, and increasingly I cant be bothered to coax/cajole.
This week, after I had (foolishly I realise) made going out arrangements for my birthday, to which he appeared to be committed and looking forward to, he just dropped out, and wouldn’t even come with me to a substitute event (I think he thought I was someone else). I know this is the disease, but I was very upset, and even more upset that he didn’t recognise this - I realised in the end that he had forgotten he loved me, so could not relate to this disappointed person.
How do other people mange to cope with their marriage that isn’t a marriage? - our relationship is more that of a parent/child, lodger/landlady. There could be years of this ahead, while I struggle to find a reason to carry on caring - why does anyone do this? We had a good 40 years together, but I’m not sure that balances things out - especially as I get older and tireder.
Sorry about the pity-party, its been a bad week, but I would really like to hear views and ideas for handling the times when he doesn’t know me/thinks I’m someone else. Thanks so much, and thank goodness for TP - I would be going to Carers Groups, but of course they aren’t running

I know exactly how you feel. Things are the same here. Life is pretty empty and joyless these days. I tried to get my husband to go to our holiday place a few weeks ago. His reply was “ I can’t go with you, the wife won’t like it’. He doesn’t know who I am most of the time. I have
no help for you I am afraid, but I completely understand what you are going through.

 

[Francisco]

We're at the stage where there is gratitude for what I do, and there is still "us", but when she asks me what I've been doing and I reply that I was ordering the groceries, emptying the waste bin, preparing the evening meal and hoovering the lounge, she is likely to say, "Well I did all that for 40 years..." in other words, "Its about time you did something!" Gratitude yes, as long as I don't appear to be portraying myself as a full-time carer.

New development concerning delusions. Original delusion is a belief that someone has been getting into the house and stealing things, or leaving items behind. A discovered item of clothing she has not worn for years is believed to have been left behind by an interloper, who has been taking, not valuables, but, say, a comb, or toothpicks... She had started barracading doors but has stopped after I fitted extra bolts for security.
The new recurring delusion is that her next-door neighbours in her home town almost 50 years ago (before we were married) were our recent next-door neighbours in our current city. She asks me where they have gone and I explain that I have not seen them for 45 years and that they were neighbours from her early life. This was confusing for her but she is reassured when I suggest that she has had a vivid dream and that her neighbours from her youth have become through the dream to be recent neighbours. She finds this slightly unsettling but to some extent reassuring because she is being offered an explanation which makes some sense to her.

 

[PalSal]

@ChrystIe
I am with White Rose on this.....treat it like a job. It is the disease, it will not get better so how are you going to cope? NO EXPECTATIONS. They cannot give you want you want and need, do not expect it. The big reason I did it the way I did was financial, keeping him at home is financially better for me than once I have to start paying for a care home. It has been the right decision. But it will probably be 2020 that will change for us. The early years it was hard for outsiders to see the issues and problems we faced everyday. And he was high functioning for some years. But inevitably, he has become reduced and diminished. But it is so strange .....we recently had some very bad stuff happening which made me put him on the waiting list, then we have had some days have been gentle and easy recently. It makes for confusion.
We were so young (he was 49 and I was 48- we are now 67 and 66 respectively). It was so very frustrating in the early stages. Now we have gone thru all the stages. In the early days, he was still able to do process work around the house, washing up, even laundry, short list from the store and helping out. Eventually all tasks were impossible and language & understanding went. Now even his hikes are becoming difficult although we are still at it. Every once in a while I get a little glimpse of my Nicky. But those glimpses are few and far between.

Good luck....find joy elsewhere if you can.

 

[Francisco]

@ChrystIe
I am with White Rose on this.....treat it like a job. It is the disease, it will not get better so how are you going to cope? NO EXPECTATIONS. They cannot give you want you want and need, do not expect it. The big reason I did it the way I did was financial, keeping him at home is financially better for me than once I have to start paying for a care home. It has been the right decision. But it will probably be 2020 that will change for us. The early years it was hard for outsiders to see the issues and problems we faced everyday. And he was high functioning for some years. But inevitably, he has become reduced and diminished. But it is so strange .....we recently had some very bad stuff happening which made me put him on the waiting list, then we have had some days have been gentle and easy recently. It makes for confusion.
We were so young (he was 49 and I was 48- we are now 67 and 66 respectively). It was so very frustrating in the early stages. Now we have gone thru all the stages. In the early days, he was still able to do process work around the house, washing up, even laundry, short list from the store and helping out. Eventually all tasks were impossible and language & understanding went. Now even his hikes are becoming difficult although we are still at it. Every once in a while I get a little glimpse of my Nicky. But those glimpses are few and far between.

Good luck....find joy elsewhere if you can.

Life is more than tolerable at present and I still find joy at home and elsewhere. I appreciate that at some stage, perhaps soon, any joy will be elsewhere. I will manage the circumstances at home as long as it's humanly possible. I play golf and am resolved to "play the ball where it lies". Whether I'll feel like that when I've been through what you've been through is another matter.

 

[Lilstar]

sorry i cant either i am married for 31yrs. im only 53 so all my adult life i have been married to one man. it upsets me im losing him but i deal with one day at a time. he knows me but when i cried he would normally hug me but this time it looked like he didnt know how to react. its very sad but i have to accept him how he is now and hold tight to the memories in my case of the family. my grown up kids are making collages of photos and events plus the grandchildren and put them in photo frame, other than that i still love him very much and has hard as it is i know its the dementia.

 

[Lin B]

My husband has ALZ and has been Sundowning for 4 months - he forgets who I am/doesn’t recognise me, thinks I am Housekeeper/Carer, on bad days an unwelcome interloper. I find it really difficult to go along with his delusions (where do you live? Who pays you? Do you like this part of (Town)?.). It really hurts that he doesn’t know me, and I’m struggling to find a sense of humour to lighten things.
In any case our marriage no longer feels like one. I do virtually everything, or clear up after he’s tried to help, including finances, planning, shopping meal prep, tho I have help with cleaning and garden. He sleeps late (sleeping tablet effect?) and then has zero drive to get anything done. Conversation is stilted or non-existent, we don’t like the same tv progs, he is very hard to motivate to go out, even just for a walk, and increasingly I cant be bothered to coax/cajole.
This week, after I had (foolishly I realise) made going out arrangements for my birthday, to which he appeared to be committed and looking forward to, he just dropped out, and wouldn’t even come with me to a substitute event (I think he thought I was someone else). I know this is the disease, but I was very upset, and even more upset that he didn’t recognise this - I realised in the end that he had forgotten he loved me, so could not relate to this disappointed person.
How do other people mange to cope with their marriage that isn’t a marriage? - our relationship is more that of a parent/child, lodger/landlady. There could be years of this ahead, while I struggle to find a reason to carry on caring - why does anyone do this? We had a good 40 years together, but I’m not sure that balances things out - especially as I get older and tireder.
Sorry about the pity-party, its been a bad week, but I would really like to hear views and ideas for handling the times when he doesn’t know me/thinks I’m someone else. Thanks so much, and thank goodness for TP - I would be going to Carers Groups, but of course they aren’t running

Hi there. I am experiencing similar. Hubby often thinks I am a carer, a cleaner, cook, who knows. But not his wife of almost 50 years. I am also struggling to know how to manage it. I don't even have a formal diagnosis. It is so hard. I want to do best by him but sometimes I struggle to go along with the delusions. It's like living in a world of make believe. I don't have any answers for you. Looking for them for myself. But I have huge empathy.

 

[Lin B]

I know exactly how you feel. Things are the same here. Life is pretty empty and joyless these days. I tried to get my husband to go to our holiday place a few weeks ago. His reply was “ I can’t go with you, the wife won’t like it’. He doesn’t know who I am most of the time. I have
no help for you I am afraid, but I completely understand what you are going through.

This is me too. Always a wife somewhere who is me but doesn't see me as that person.

 

[Kas 0103]

I dont have a marriage now either. The person with dementias world narrows and narrows as they progress so that all they can see are their own needs wants and comforts. They lose the ability to see that other people have needs and feelings that they aught to consider or respond to. I remember the time I first realised that there was no "us" anymore. I had been planning things for us to do, for us to enjoy and then suddenly realised that OH did not consider me at all - there was no "us" in his mind at all, I simply wasnt there.

I have had to step back from him emotionally and, like marionq, I have built invisible armour around myself



I have felt the volcanic heat of your rage scorching my skin
And the lava of your words searing my soul,
So I have built, crystal by crystal, transparent walls around myself
And sheathed my limbs in frozen armour
Ice to fight fire.
I have packed out the cracks in my heart
With the frozen rivulets from my cheeks
And turned my eyes winter grey

Now your words slip off my frictionless surface
I am preserved within this sarcophagus
With hieroglyphics engraved on my breastbone
It doesnt matter
I dont care
I didnt want it
Anyway
Just to remind me, in case I too forget
And start to dismantle my protection

@canary this just appeared on the sidebar and I hadn’t realised it was an old post - is this your poem, or did you find it somewhere? Powerful words!

 

[canary]

@canary this just appeared on the sidebar and I hadn’t realised it was an old post - is this your poem, or did you find it somewhere? Powerful words!

Its my poem - I wrote it myself

 

[Cat27]

Hi there. I am experiencing similar. Hubby often thinks I am a carer, a cleaner, cook, who knows. But not his wife of almost 50 years. I am also struggling to know how to manage it. I don't even have a formal diagnosis. It is so hard. I want to do best by him but sometimes I struggle to go along with the delusions. It's like living in a world of make believe. I don't have any answers for you. Looking for them for myself. But I have huge empathy.

Welcome to TP @Lin B. Please keep posting as you’ll get lots of support here.

 

[Kas 0103]

Its my poem - I wrote it myself

Thank you for sharing them, such searing imagery that strikes a chord…

 

[annieka 56]

My husband has ALZ and has been Sundowning for 4 months - he forgets who I am/doesn’t recognise me, thinks I am Housekeeper/Carer, on bad days an unwelcome interloper. I find it really difficult to go along with his delusions (where do you live? Who pays you? Do you like this part of (Town)?.). It really hurts that he doesn’t know me, and I’m struggling to find a sense of humour to lighten things.
In any case our marriage no longer feels like one. I do virtually everything, or clear up after he’s tried to help, including finances, planning, shopping meal prep, tho I have help with cleaning and garden. He sleeps late (sleeping tablet effect?) and then has zero drive to get anything done. Conversation is stilted or non-existent, we don’t like the same tv progs, he is very hard to motivate to go out, even just for a walk, and increasingly I cant be bothered to coax/cajole.
This week, after I had (foolishly I realise) made going out arrangements for my birthday, to which he appeared to be committed and looking forward to, he just dropped out, and wouldn’t even come with me to a substitute event (I think he thought I was someone else). I know this is the disease, but I was very upset, and even more upset that he didn’t recognise this - I realised in the end that he had forgotten he loved me, so could not relate to this disappointed person.
How do other people mange to cope with their marriage that isn’t a marriage? - our relationship is more that of a parent/child, lodger/landlady. There could be years of this ahead, while I struggle to find a reason to carry on caring - why does anyone do this? We had a good 40 years together, but I’m not sure that balances things out - especially as I get older and tireder.
Sorry about the pity-party, its been a bad week, but I would really like to hear views and ideas for handling the times when he doesn’t know me/thinks I’m someone else. Thanks so much, and thank goodness for TP - I would be going to Carers Groups, but of course they aren’t running

 

[annieka 56]

Welcome to TP @Lin B. Please keep posting as you’ll get lots of support here.

 

[annieka 56]

My husband certainly still knows me even though I feel and often look like a sad excuse of a woman who has not washed her hair for a week.
He follows my every move even now when I get up super early which I always did, to go for a shower, clean the kitchen , put the washing machine on...after 1 minute when I thought he was sleeping soundly, he's up and the toilet issues start.
We have been together for 39 years.
What gets me is that other people seem to have had wonderful relationships and fondly remember the good times.
Unfortunately we have had a lot of ups and downs, mostly to do with my husband having been a gambler all of our married life, being rubbish with money, getting into credit card debt, not paying the council tax, getting debt collectors coming to the door.
We did have good times especially bringing up 2 wonderful sons together but I do resent the way he was and the fact we still have a mortgage to pay and now I am even more responsible for everything than I ever was.
I'm worried that my resentment is taking over when I should be focused on caring for him now he is ill.