• We're currently experiencing technical issues with our newsletter software, so our Dementia Talking Point monthly updates have been put on hold for now. We hope to restart the newsletter soon.

    Find out more >here<.

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

Chrystle

Registered User
Feb 15, 2018
18
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
 

Janey B

Registered User
Aug 15, 2019
39
Northwest
“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. “
[QUOTE="Chrystle, post: 1738423, member: 72130"

Sorry Christie no words of wisdom, just empathy I feel just the same. I think apathy is catching I have trouble motivating myself to do anything now, every day is the same and unfortunately I know that things will not change for the better.
 

marionq

Registered User
Apr 24, 2013
6,132
Scotland
It is very hard to bear at times. Although we know it’s the illness it’s impossible not to be hurt. Over time you adjust but you need to
Build a shell round your emotions.
 

Illy

Registered User
May 11, 2013
35
Manchester
Sorry too, I can give you no helpful words but you are not alone. I feel like a glorified housekeeper/cook/bottlewasher. I have been dispatched to the kitchen to spend my waking hours with the dog. Although my husband does still know who I am, he is totally devoid of any emotion or feelings. At least the dog loves me. Maybe a dog could help fill that void for you. Marion sums it up perfectly - build a shell around your emotions xx
 

Ruth1974

Registered User
Dec 26, 2018
108
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
 

Ruth1974

Registered User
Dec 26, 2018
108
Yes, Im 45. My daughter is 13 and recently gave me a lecture; she never had a proper dad, her big brother is going to university in September, so why don't I just get myself a boyfriend (and a stepdad for her). She suggested that we could pretend G was just some distant relative we were looking after.....
I would love to be a part of a functioning relationship. Sorry I can't offer any solutions but you are not alone x
 

jennifer1967

Registered User
Mar 15, 2020
629
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.
 

canary

Registered User
Feb 25, 2014
13,391
South coast
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
 

Veritas

Registered User
Jun 15, 2020
60
@Chrystle We haven't got to quite the same stage as you, but there's no doubt that's where we are headed. I resent it too, not just because of having zero emotional and practical support from one's spouse and having to do everything oneself. When you see other people's relationships where there is a sharing of the workload of daily life it's hard not to be envious as well as sad that this is denied to you.
 

Pusskins

Registered User
Jun 6, 2020
76
New Zealand
@Chrystle I don't know how long you have been caring for your husband, but I've only been doing it for a year. I am all the things that you are, chief cook/bottlewasher etc. MH still recognises me, but has never helped around the home, even before the dementia set in. I am exhausted and battling against making the decision to place MH in care. I am about to get home help and hopefully in home respite care. Not sure if this will delay his being placed into care or not. Do you get a break at all? Perhaps you can arrange for that to happen, but you are not alone. This situation is hell on earth, but most of us here know what you're going through and going through it ourselves. God bless.
 

Vitesse

Registered User
Oct 26, 2016
216
@Chrystle We haven't got to quite the same stage as you, but there's no doubt that's where we are headed. I resent it too, not just because of having zero emotional and practical support from one's spouse and having to do everything oneself. When you see other people's relationships where there is a sharing of the workload of daily life it's hard not to be envious as well as sad that this is denied to you.
I thought lockdown was bad, but now that people are starting to resume more normal lives, I find it really hard. Yesterday evening we were in the parking area of our block of flats, looking for imaginary people who were supposed to be coming to see us, while our neighbours were going out for the evening, all dressed up and enjoying each other’s company. I cried!!!
 

big l

Registered User
Aug 15, 2015
43
I was looking for solace and comfort too until that realisation that there is no 'realisation' for my husband, no empathy and that there will never again be any spontaneity, no treats to look forward to. So, out comes the blame monger. The 'if only' beast that looks at the FREEDOM others take for granted - to pop down to the shop - alone. To just have time to start and finish anything without interruption. The resentment is like a boil on the back of my neck, sometimes it flares up and causes me even more anger and heartache. Other people just going away for a few days... My husband knows me still, though he first showed recordable (doctor's idea) symptoms in 2007 he was only officially diagnosed with vascular dementia and Alzheimer's in 2016. Those halcyon days of promise and future are gone. It's been the 13 years of my life that have shaped the present 'me' I find myself to be exhausted and - lately - lacking any enthusiasm for anything within my reach. Gone or faded are the memories of good times. How sad is that? Oh Ruth I'm so sorry, I'm no comfort and I offer no bright future, I don't have the answer. I suppose I should be grateful that I'm 74 and have had a fair life, My heart goes out to you and your children. Invisible armour - emotional armour? I will try and find it. I live in the most beautiful countryside and have to endure watching happy, happy people out walking, cycling etc. constantly. My husband's apathy increases by the day like a dark cloud over both of us. I cry too, for what could have been. Lock down has caused us carers immeasurable pain and grief - on top of everything else... Sharing the pain on this site and not hearing 'you're doing a grand job - I don't know how you do it' . I sometimes, most of the time if I'm honest, don't know how we do it either. This poem touched my heart, I hope you won't mind me repeating it Canary, it's so true.

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 doesn't matter
I don't care
I didn't want it
Anyway

Just to remind me, in case I too forget
And start to dismantle my protection
 

vannesser

Registered User
Apr 4, 2016
344
@Chrystle I don't know how long you have been caring for your husband, but I've only been doing it for a year. I am all the things that you are, chief cook/bottlewasher etc. MH still recognises me, but has never helped around the home, even before the dementia set in. I am exhausted and battling against making the decision to place MH in care. I am about to get home help and hopefully in home respite care. Not sure if this will delay his being placed into care or not. Do you get a break at all? Perhaps you can arrange for that to happen, but you are not alone. This situation is hell on earth, but most of us here know what you're going through and going through it ourselves. God bless.
I have been looking after my husband for 4 year with vascular ,i to did all the work and finans befor ,know i have to do more as he unable to work and bed riden since june ,he remembers me some times rezt of time i his sister or mother and some times i his care and he askes me where the other virl is (he as 2 cares in 4 times a day to chang him ,i try and chang his pad if he makes a mess while out this is realy dificalt .dont talk to me alot unles its to get him a drink or food that he dont all ways eay but he talks to cares and jocks with them.if i go out shoping he goes mad wile i out and when.i come back as he thinks i am.not where i say ,i only go out 1 a week abought a hours, i dred coming back some times but i no its not him but how long does it last ,,(i am 61 he 77 hove a daughter livi g here 34 but it difficult forr her some times married 40 year gone he can not remember it xxc
 

Angtrog

Registered User
Mar 25, 2020
59
Yes I know how you are all feeling ,I to have no marriage any more Im 59 my OH is 68 .I do everything now and running around after OH .Conversation is dead as he cant explain himself any more and all he does is just sit and watch the telly. I feel envious of other couples going out enjoying themselves laughing and joking. we too have had a bad week . OH sometimes thinks Im someone else and if I go shopping (Im only out for 2 hrs a week) its a case of where have you been!. Im belting around the shops to get back home to WHAT. Is this what they call life?
 

karaokePete

Registered User
Jul 23, 2017
5,634
N Ireland
The change from a husband and wife to a parent and child relationship does make the marital home a lonely place at times.

I try to be happy in the solitude but sometimes the change produces a behaviour that rams home the sadness. My wife's Day Centre started up last week and on the first day she came out clutching a drawing of a car that she had filled in - like a child leaving a nursery. The fact that someone with a third level education was reduced to that was just so sad but I played the impressed parent anyway:(

My wife doesn't always know who I am these days and, so far, I take that in my stride. I do wonder how that will impact on me when that becomes more pervasive.
 

White Rose

Registered User
Nov 4, 2018
679
I have had to step back from him emotionally and, like marionq, I have built invisible armour around myself
Love your poem @canary and I agree with you this is the only way to deal with it. After 4 1/2 years of caring for my partner I've given up expecting anything from our 'relationship', I still love him enough to continue looking after him (I think that's the reason I continue to do so!) but I treat it almost like a job and for the past year or so have started to build my own life. It's terribly sad but I feel there's no other way, otherwise you are ground down and trampled on by their demands, needs and tantrums!
 

None the Wiser

Registered User
Feb 3, 2020
102
@canary thank you for the poem. Once again although it’s appalling it’s also so good to read so many of us feeling and experiencing the same. The physical presence of a spouse, but the lack of companionship is so very difficult to come to terms with. Today, for a split second, I heard/imagined that my husband had responded to something I said in a way that he would have done pre Alzheimer’s. “Even the bad times were good” for us a few years ago.
 

Ruth1974

Registered User
Dec 26, 2018
108
Oh Ruth! You're so young to be facing this. And it's obviously affecting your daughter and probably your son as well. Perhaps you should talk this through with someone - the helpline or a counsellor. You dont have to care for him at home if it's beyond your capabilities. Do you have a job? Don't give it up - you need a life and financial security. Very best wishes.
Thankyou x
We will put up with it for a few months longer. I work full time but that keeps me sane. He doesnt know who we are any more or where he is so its becoming a bit silly keeping him here. Id like to protect him from the virus this winter if i can but after that, I think ive done my bit!
 

Ruth1974

Registered User
Dec 26, 2018
108
Oh Ruth! You're so young to be facing this. And it's obviously affecting your daughter and probably your son as well. Perhaps you should talk this through with someone - the helpline or a counsellor. You dont have to care for him at home if it's beyond your capabilities. Do you have a job? Don't give it up - you need a life and financial security. Very best wishes.
Thankyou x
We will put up with it for a few months longer. I work full time but that keeps me sane. He doesnt know who we are any more or where he is so its becoming a bit silly keeping him here. Id like to protect him from the virus this winter if i can but after that, I think ive done my bit!
 

Veritas

Registered User
Jun 15, 2020
60
I thought lockdown was bad, but now that people are starting to resume more normal lives, I find it really hard. Yesterday evening we were in the parking area of our block of flats, looking for imaginary people who were supposed to be coming to see us, while our neighbours were going out for the evening, all dressed up and enjoying each other’s company. I cried!!!
I don't blame you. I'm sorry.