Its not marriage

[SaraKate]

It's not marriage, it is caring. My husband has small white vessle damage and took the neurologists diagnosis that it was average for his age to mean that there is nothing wrong. So when he explained in confidence to a friend why he is so forgetful he said that it is because he almost never listens to me - so I think that he has forgotten something but it is that he never heard it.
I can't argue with this without insisting that he is ill, and I don't think that would be kind. I can't argue that I am not so boring that someone would rather be deaf than listen to me. So I am not behaving as I would have done, as a wife would do, which is pick up on this and argue it through, especially as it strikes at the heart of the relationship. Instead I grit my teeth and ignore it. And when he next doesnt hear something and doesnt meet me where we were supposed to meet and complains that I told him something else, I don't say anything.
I believe I am doing the right thing:
but I am not being a wife I am being a carer.
I am not treating him as my equal, I am making allowances for him.
And hiding that, as he would hate it so much.
Does anyone else feel like they are behaving out of their own character?

 

[SaraKate]

Im replying to myself here! I just read this on the 'stages of dementia'
The dominant mood at this stage is frequently what psychiatrists term a flattening of affect and withdrawal. In other words, the patient often seems less emotionally responsive than previously. This absence of emotional responsivity is probably intimately related to the patient’s denial of their deficit, which is often also notable at this stage. Although the patient is aware of their shortcomings, this awareness of decreased intellectual capacity is too painful for most persons and, hence, the psychological defense mechanism known as denial, whereby the patient seeks to hide their deficit, even from themselves where possible, becomes operative. In this context, the flattening of effect occurs because the patient is fearful of revealing their deficiencies. Consequently, the patient withdraws from participation in activities such as conversations.
I realise what I was describing above, is what you have to do if you are caring for someone with a form of dementia, and that when they suffer from 'flattening of affect and withdrawal' you (the partner) experience this very directly. So you stop being a beloved and engaging equal partner. I think this has happened to me.

 

[nae sporran]

It is like love lies, it feels horrible and unnatural but slowly you realise it is the kindest thing to do. The process of becoming a carer rather than a partner has been hard work and brings sadness as well. You have total sympathy and empathy for what it is worth, SaraKate.

 

[canary]

I am not being a wife I am being a carer.
I am not treating him as my equal, I am making allowances for him.
And hiding that, as he would hate it so much.
Does anyone else feel like they are behaving out of their own character?

I think it happens to all of us @SaraKate

There comes a time when you realise that they are not capable of things that they once were, that they cannot remember things that have happened/were told, they they can no longer follow discussions, get muddled over things they have done for years and suddenly you realise that you are a carer.

I am no longer OHs wife. I am his housekeeper, cook, nurse, lodger, entertainment officer, servant and general whipping boy - but not his wife (even though he knows who I am)

 

[karaokePete]

I'm not disagreeing with anything that has already been said @SaraKate, but do wonder if your husband may, in reality, not be hearing everything.

It may be worth having a hearing test if he does anything like listen to music or the TV at high volume as that may indicate a hearing issue..

 

[pevensey]

I'm not disagreeing with anything that has already been said @SaraKate, but do wonder if your husband may, in reality, not be hearing everything.

It may be worth having a hearing test if he does anything like listen to music or the TV at high volume as that may indicate a hearing issue..

This could have been me writing your post Sarakate, Yes I feel exactly the same, just a cook,cleaner, dresser, prop for walking, and clearing up his mess eg clothes on floor everywhere, and in bathroom about 5 clean towels every day then chucked on the floor. Every job that needs doing it's down to me. I do tell him everyday that I love him and try and give him hug but he doesn't return the sentiment.
It's so so difficult and heartbreaking. Sarakate. But I could never tell him off about his clothes just chucked everywhere or towels in bathroom because I dont want to upset him He used to be so meticulous and tidy before he got diagnosed 3 years ago. Take care.

 

[Grannie G]

I believe it is marriage. It`s the ups and downs of life which most of us are faced with at some time.

Dementia is a cruel blow but so are so many other tragedies people are faced with during their lifetimes.

I know so many of us have missed the sharing, the equality and the partnership of marriage. Sadly we are not able to influence how our lives pan out when illness strikes and when one of the partnership becomes dependent on the other does it really mean it is no longer a marriage?

 

[SaraKate]

Grannie G - it's an interesting question - does it mean it is not a marriage? It's not a marriage of equals as it was, and it's not a marriage with many joys, as it was. But it is still a marriage because if it was a job I'd quit. Nae sporran I answered your post on another forum and it's nice to see you here, talking to me. I have set a routine which works for me that I have a couple of days away from home a week with my children and my work and that gives me a different perspective and a real break. My husband really dislikes me being away but when I come home he has 'flattened affect' he is very indifferent to me and chooses to spend time alone or in activities that I am not invited to. It's tough. It helps that you shared your feelings with me. I don't feel so alone, and it is so strange to think of so many people going through this. A year ago I did not know this site existed. Now I find it a real help in coming to terms with my new life.

 

[marionq]

Whatever it is @SaraKate keep doing what you're doing in getting outside time. This problem doesn't go away and to be 24/7 carer is not good for anyone. I frequently think about how I could have organised or arranged things differently so as not to end up in my present situation as a sole carer. I do find that the days John is at a daycentre are a lifesaver but it is poor compensation if I'm honest for what was a busy varied life.

Best wishes.

 

[Peachez]

Its marriage @sarahkate, but not as we know it. My OH very similar, MCI, Parkinsons and possible MSA diagnosed, has typical blank facial expression. It can be so very frustrating . However where previously he was able to hid it from everyone but me, things have progressed and others realise there's a problem. I find now that he relies on me to speak for him, sometimes on the phone too, and can literally hide behind me like a shadow. But at home he is distant and conversation difficult. Misunderstandings and misconceptions remembering are very common. There have been times recently where he wont go out without me, which tells me just how much he relies on me, though my own perception is that he doesn't care much for me anymore.
Not sure if this helps you, but please know that you are not alone.

 

[jenniferjean]

But it is still a marriage because if it was a job I'd quit.

How true that is. We do our best @SaraKate and that's all we can do. Get as much help as you can and look after yourself.

 

[Loopiloo]

I believe it is marriage. It`s the ups and downs of life which most of us are faced with at some time.

Dementia is a cruel blow but so are so many other tragedies people are faced with during their lifetimes.

I know so many of us have missed the sharing, the equality and the partnership of marriage. Sadly we are not able to influence how our lives pan out when illness strikes and when one of the partnership becomes dependent on the other does it really mean it is no longer a marriage?

I don't think it is not a marriage. Of course it has changed due to illness but couples help and support each other through difficult times. Dementia is a cruel disease and a challenge though,no doubt about that. I always felt first and foremost I was a wife.

But everyone is different and marriage relationships are different.

 

[Olliebeak]

I'm not disagreeing with anything that has already been said @SaraKate, but do wonder if your husband may, in reality, not be hearing everything.

It may be worth having a hearing test if he does anything like listen to music or the TV at high volume as that may indicate a hearing issue..

This is a really interesting point. My husband does have hearing problems and wears aids. He is very deaf without them. But recently I have noticed he seems to have problems actually understanding what is said to him in addition. I must get his aids checked but I suspect it is another neurological symptom where the brain cannot compute the words he does hear. Similarly he is finding it harder to express what he wants to say.

You never know what curved ball dementia (Alzheimer’s in his case), is going to throw at you next! Do agree with all the comments about wife v carer which has cropped up in other threads. I liken myself to a single parent!

 

[SaraKate]

I'm very touched by everything you've all said here. It's a real comfort to come here and know that so many people are going through similar experiences and we're all struggling alone - but we're not alone. There isn't a physical hearing problem (but thanks for that heads up) its sort-of worse than that - he forgets what I say the moment I say it. And if challenged - says he habitually doesn't listen to me. Of course I prize the friends who listen to me and enjoy my company, and I feel real happiness in their company when I can be myself without constant monitoring. But I do love him still, and try to support him through this (whatever he thinks it is). I know what I think it is - that's why I come here - but I have been glad to lose the sense that I should explain, and he should know. I feel now it's compassionate to let him know what he wants to know, and come to what realisations he can bear. So it's not a marriage between equals, that has gone; but in its heart there is kindness and pity. (He would rather die than have either! so that's another kind secret too.)

 

[AliceA]

This really is marriage, perhaps not the one we planned but perhaps more so.
Two equals, no. It seems to me like the yin yan symbol one whole but the two halves are fluid, one becoming larger to hold the other in the same shape.

Life does not let us choose, what comes comes. We like to think we have choice but looking back my life has been more by chance than planning.
Joseph Campbell, of Myth fame, said about his own marriage, we sacrifice for marriage, the whole concept of it.
We do not sacrifice for a person, it is more than that. Not exactly his words, memory fails me.

When we have children we change, we become less self centred, we become more protective we find strengths we never knew we had, we found weaknesses too. This set of illnesses, they are all different, stretches us beyond our imagination.
I used to think of us as a coin, spin it and it becomes one. Now as life spins the face the world sees is mine, battered and tired may be but fiercely protective of the other face. When I wonder I look at the lovely man I married, the painting on the wall copied from a photo shortly after we met, I then my heart bounces however weary.

Love perhaps gives more pain, if we did not care it would not hurt, we would not miss what we had. Some never get the chance. I thank God I did.
Mind, sometimes it is like having a Changling around, Bless him.
Alice, very bent, battered but not broken! Well not today!

 

[SoAlone]

I think you are behaving as a wife. Many of us get to the point where we cease to argue because you are not arguing with a logical person and certainly not the man you married, therefore there isn't any point and you can't win. I think in a way it is self preservation. In my case OH is now in a NH and we have our marriage back. We are able to communicate as husband and wife, albeit with a fair bit of poetic licence on my part. Before he was assessed and deteriorated to where he needs 24 hour care, our relationship broke down almost completely.

 

[AliceA]

The tragedy is that things often have to get too bad before help arrives. My attempts are still in the pipeline and out of my control. I have taken control a bit by making arrangements that will lessen the self fund period but give help now.