Struggling to know if I am bad or not

[dementiawidow]

I've name changed for this because my posting history is very identifiable and I don't know if my daughters are on here.
Married for 16 years to a great DH who I have loved very much and been loved by. It's been a great relationship, happy, faithful, fulfilling. There is a 20 year age difference between us.
For the several years he's been going steadily downhill healthwise and we now know he has early onset dementia. Well, I know it; he is so far gone he doesn't know it. I have gone from being a friend, companion, lover to being a carer and basically just babysitting a shell of a man. It is completely heartbreaking and I feel really isolated and lonely in my marriage. It doesn't feel like a marriage anymore but I have promised to love and care for this person, who I have loved.
So anyway, I'm trying my hardest to take care of him as best I can. But I've recently met someone with my work who I feel attracted to and who is making me feel like an actual person again.
I wouldn't be unfaithful to my husband as long as he is alive, but I feel really guilty. I can't seem to get a grip on my moral compass at all here. Is it terrible of me to enjoy the companionship of this male friend? I'm not going to lie, if I was single there would be more to it. But am I being disloyal and unfaithful just by having this friendship?
To be clear my DH is not even capable of knowing any of this, most days he hardly knows who I am and often does not recognise me. But I still feel terrible. I want a life and fun and friendship and love, but I can't have it anymore with the man I have loved.
Am I being immoral? If he was still "with it" in his head he would be devastated by this. But he isn't even there anymore. He has left the building. But does that make it any less wrong? I really don't know what to think or how to cope anymore with all this. I am 48 by the way.

Thanks everyone - your comments are really helping me. Sandy never in a million years would I have a relationship with a married man. I've seen what that can do first hand (DF). That's not anywhere part of my questioning here.
But of course, I am a married woman. But I'm married to someone who barely knows my name. In fact I've moved into another room because I'm not comfortable sharing a bed with someone who doesn't know who I am. So what does married really mean for me now?
I want to care for my DH, he deserves it. But am I shackled emotionally to an empty shell until he dies? It's kind of like being in a relationship with a broken doll. I guess if I were more his age and we had had 30 or 40 years together I might feel that it was fine to shuffle gently into the twilight years, but I'm not and I don't.
By the way, a few people have asked about my DDs. They are from a previous relationship and are adults now. DH is not their father but they are very fond of him. DH does not have DC of his own. He has been a great step father to them. They have already told me I should give priority to my own life and happiness.

DW

What outside support do you both receive or are you carrying the bulk of this on your own?. I ask only as it sounds like there is nowhere near enough support for the two of you from the little you have posted. Where in particular is your own support in terms of respite; is your life just basically work and home?.

I really do think that talking to outside organisations could well help you no end if you have not already done that.

The Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

The Alzheimer’s Society website has lots of information, advice, fact sheets and other resources available: alzheimers.org.uk/

I actually think this is one of the situations where the onlookers don't see most of the game. If you haven't been in a relationship where one of you becomes the carer, you simply can't know how you will react.

My DH is my carer. He is very much honouring the "sickness and in health" part. We love each other very very much. He has though sacrificed a lot for me and if there is any way I could increase his happiness, I would - whether I am alive or dead. At the moment we are holding together but if it got to the point where it was untenable for him I would fully understand. We have spent years loving each other and he has spent years caring for me and whatever happens from now won't change that.

OP I understand how you feel and I'm sure lots of us do too. CommonBurdock says it wonderfully. Caring for someone severely ill is (IMHO) one of the kindest and yet hardest things to do. Carers need to draw strength and happiness from somewhere and I don't think they should be judged for doing this, even if it's not usually conventionally accepted.

AnyFucker I don't comment on threads about other women, or dogs, or even make up etc as I have no experience therefore I could give my opinion but it wouldn't be an informed opinion. It's a little arrogant to arrive and make definite sweeping statements about how people should behave when you're not in the same boat making these decisions yourself. This situation is much more serious than dogs or make up and people usually benefit from kindness and empathy rather than judging and condemning. I really think you should be more discriminate in which threads you reply to - quality of advice rather than quantity, maybe.

What a desperately sad situation. DP and I often discuss these kind of issues if we see them raised on TV or amongst our friends. We would both want the other to enjoy life if one of us 'checked out'.

It's hard to imagine ourselves in this position but the reality is, this is life for many many people and it could well be us one day.

Less judgement, more sensitivity is needed here.

You are in such a difficult situation. I can think of few things more agonising than witnessing the results of dementia in a loved one. How much more devastating it must be with a beloved husband who can no longer even remember who you are. Please do not add a sense of unwarranted guilt to your already stressful life. You have nothing to feel guilty about. Seeking out a male friend for coffee and meals out does not make you immoral in any way IMO. You have no reason to reproach yourself. You are providing care for your husband every day. The emotional toll that takes must be overwhelming. A new friendship (and even a romantic relationship) would be entirely understandable as far as I'm concerned.

I am reminded of those 19th century paintings, "A Woman's Mission," all intended to show women as the angels in the house, whose only role was to subjugate themselves for others. There is no need for you to transform yourself into such a figure.

There is a certain irony in criticising other posters for telling people what to do and then going on to do the exact same thing yourself.

I think Attila is giving you very good advice. Perhaps seeking support outside of this colleague would help you clear your mind and talk to people who have experienced similar. This sort of support is invaluable. Also check if your LA has a carer's hub. Widening your support network to talk about things that you may not be able to discuss with your family will help give you strength.

I think there is a time and place for straight talking, but empathy and sensitivity is what OP needs right now.

The hyperbole is creeping in. Who said op had to "subjugate herself"?. I am the first to say she should live her life and if she does not see herself as a long term carer I would support anyone in walking away. She asked specifically for opinions on having an affair with another man. That is what I am responding to. In my opinion, it is not the right thing to do. Do people always do the right thing... ? No, of course not.

AnyFucker, with all possible kindness - you really are in the wrong. I generally agree with the opinions you give on this forum, but not here.

OP is not breaking any marriage vows because there is no marriage left. Her husband is not merely very ill, he is not there any more. Dementia is not called "the living death" for nothing.

Dementia is also incredibly isolating for the carer. And it's not just about not being able to leave the house. It's also about watching your friends disappear because they are too afraid to associate with somebody with dementia. It's about relatives disappearing because they do not want to take onto the burden of care (that often involves cleaning shit off walls). And this isolation can last for way over a decade as dementia is a very long-term illness. What OP needs now is support and not somebody to tell her that her very natural need for emotional closeness with another adult human being is an "ego trip".

I never thought of my father as having "an affair" with his ladyfriend, even though technically he was. I saw it has him (rightly) getting on with his life. He was devastated about what had happened (and was happening ) to my mum. Nothing was going to change that. I was really happy that he had found someone to spend quality time with.

Dementiawidow - I'm glad your daughters are supportive. You should take strength in that. You don't need to feel guilty. It's totally understandable that you'll feel sad. You do need to grieve for the marriage that's gone. And for the dh that has gone

If anything my dad was able to go through the grief process better than me. His lady friend hasn't replaced the "love of his life" (it's actually good that she knew mum and knows the history - even they hadn't actually met for c40 years) but at least they enjoy each other's company

Unfortunately, there's no substitute for a mum

I think you should allow yourself to be happy, OP, and if this man makes you happy, then you should go for it. You don't have to do time for marrying an older man. This is the only life you will have and it is precious and you should take the happiness you get. You could be caring for your husband for many years. Are you not allowed to be happy for decades because you are married to someone who doesn't recognise you? It doesn't make sense. Life is messy and there aren't always clear answers, and this is one of those times. I think your loyalty to your husband is commendable and I am sure you won't let him down, but really, you are allowed to be happy too. Wish you all the best.

I quite agree with you, AutumnMadness, WRT the effect that dementia has on a marriage. It certainly sounds to me as though the OP is honouring her marriage and her husband by lovingly caring for him. IMO, she would be neither "bad" nor "immoral" to pursue the relationship she described. Although she has said she wouldn't want a romantic relationship while her husband is still living, and I certainly respect her choice in this matter, I personally would see nothing wrong with that. Indeed, in some circumstances that may well be the right thing to do.

DW,

Life is really unpredictable. At times those who are older and in poor health live many years longer than those caring for them.

Waiting for him to pass away could be a very long wait for you. If he is physically in average to good health then he could live for another 20 + years.

My normal stance is that affairs are wrong , but you are dealing with a totally different situation with a husband who isn't of sound mind. The usual advice of discuss the issues don't apply here.

Only those who have walked or are walking in your shoes know how lonely and draining such a marriage is, which is why I posted the link earlier for you. The rest of us can empathise (although some can't), but other people who have partners with dementia and alzeihmers truly know what your feeling.

Without wishing to add fuel to the fire, I actually agree with a lot of AnyFucker's comments.

This is a public forum and any registered user has the right to comment. Everyone will have a different view and opinion on this and who's to say who's right or wrong, simply because you don't share it.

I don't believe there was any cruelty in any of the comments made, they were frank responses, and whilst some may not like them or agree, that's life.

The bottom line is the OP posted a set of circumstances inviting opinions, I'm sure she can choose which ones she wishes to take comfort in and which she ones she wants to dismiss, but that really doesn't warrant some of the abuse directed at another poster for expressing their opinion!

OP I'm sorry your husband is suffering, and from some experience have an understanding of how difficult day to day life must be for you, but in honesty I really don't agree that pursuing this relationship is in your best interests.

OP, life has dealt you a bad hand, we're all agreed. You sound like the sort of person that would be plagued by guilt if you let the friendship with the new man develop. That would taint your new relationship along with your feelings for your husband, family and friends. The situation is desperately sad as it is, without adding guilt into the mix. Support and empathy from your family and entirely platonic friends would carry no guilt and enable you to deal with the circumstances of your marriage.

We are all free to give our opinions. It is a forum. It would be helpful if we could only be active on forums where we know we have experience in real life but then it wouldn't be a forum really would it?
We may not agree on whether it is right to date whilst your other half has dementia but AF has given her thoughts.
Why be so vicious if you don't agree with her.
A simple "AF I I don't agree. I think.." Is the best way to go about things. Why jump in to the point where you then criticise the username?
Mumsnet doesn't mind, if it bothers you, ignore it. I've seen usernames worse than that. Some might offend me but you know what?
IT'S ALLOWED.
So let's be adults and offer our opinions.
If they are taken, great. If not,great too.
Move on and give you piece. There, I said it. Piece.

Sometimes Mumsnet is like clique.

OP, do what you need to do to stay sane. If it helps you continue giving loving care for your H, surely better you have a discreet relationship with another adult than divorce your H and leave him to the tender mercies of the NHS/social care.

I disagree entirely with AF's opinion here, but the vitriol shown her by a couple of blowhards on this thread is fucking disgraceful. OP asked "Am I immoral?", AF replied with her honest opinion.

And quibbling about usernames? Seriously, have you even read Mumsnet?

I normally agree with AF, but on this point I'm afraid I couldn't disagree more. I can't see this as being so black and white.

In normal circumstances, if a woman came on here saying her DH is no longer the man she married and their relationship was no longer fulfilling, she would be told to leave and make a new life for herself. In this case, that would involve a woman who clearly loves her DH, leave him in a vulnerable position. If that didn't make her a "bad person" I don't know what would! She doesn't want to do this, she has also stated that she would not be unfaithful. Does that mean that she shouldn't allow herself some emotional support and tenderness from someone? Excuse me if this is harsh, but her DH is not really "with her" any more is he?

OP, I actually think the love you have for your husband stands out in your posts. You are still caring for your husband, you are not a bad person, you are struggling in a heartbreaking situation. I think you should tread very carefully with this colleague, firstly to protect your family from any further upset, but also to protect yourself from any further emotional stress. but if you enjoy the company and having some normality, then keep enjoying it, just be prepared that it may develope and you need to address that.

Fwiw, I wouldn't begrudge my DH the option of having some happiness if I were in your DH's position. Of course I have no way of knowing if your DH would feel the same.

Sometimes it's less about begrudging happiness and simply about what the right thing to do is. I'm with AF on this one.

I'm sorry to see some people saying you have to remain 'faithful' and should not embark on an 'affair'. Your DH might live another ten, twenty years. Are you supposed to remain 'faithful' until he dies? If he is best cared for by professionals, then so be it. The spirit has gone, he isn't longer the man you married.

I think you can begin another relationship with impunity.

This is such an emotive subject. I don't always agree with AnyFucker but I think she has been given a hard time on this thread.
OP you must have realised the potential problems when you married your DH. He was always going to age before you.
I have witnessed the damage caused by dementia through several of my relatives, and I know how painful it is, however, I would stay and support my DH because of my love for him. I wouldn't leave him now, so why would I do so because he became unwell through dementia?
If DH became disabled through a road accident or a work related illness I wouldn't leave so why would I do so because of dementia?
I hope my DH would do the same for me.

Nowhere has the OP suggested leaving her husband. It was suggested to her.

Ok I see that now. Thank you Add I stand by my comments above. I have always had male friends, my DH knows about them and it's not a problem. There is no problem having friends of the opposite sex, imo, but I have never felt there could be a relationship between these friends and me if it were not for dh.
I know it's tricky Dementia but he is still your husband.

I know it's tricky Dementia but he is still your husband

I know you mean well wombattoo but I think this sentence is a distillation of every thing that people don't understand about dementia.

It isn't tricky - it is life changing, devastating and possibly financially ruinous

he isn't still her husband. he is gone. She is still his wife which is why she will care for him and make sure he taken care of. but he is long gone.

I don't think it's a coincidence that the majority of people on this thread who have actual experience of close/loved ones with Alzheimer's or another form of dementia are much more sympathetic to the OP's situation.

Until you've walked a mile in such shoes, you can't judge. I for one am glad that my dad was able to find happiness and companionship again and didn't have to wait until Mum died even though "Mum" was dead long before she stopped breathing . As it happens it only took 3 years after the initial diagnosis (longer from when she started her decline) to die but it could have been 10 years or more. That's a long time to be lonely.