I haven’t used this forum since it became Carers Connect. I work part-time, having retired from a full-time role. Spouse is 21 years older than me - he disputes that I’m his carer at all, but I don’t think he could manage without me! I suspect he’s autistic - GP thinks I could be right - but believe me, geriatric autism is very difficult to deal with. He argues with everything, and criticises everything (“not criticising, just observing!”) - well, it hurts me all the same. I feel really down because no matter what I do, it doesn’t please him. We have to eat AT 1 pm, and have supper AT 10 pm - if I’m working at my desk, I have to stop immediately. The other day I was even told that saying “I am working at 9” was “defensive” and instead, I should have said, “I’m afraid I am working at 9”. I can’t predict what will upset him, and I can’t guess which words I should use. It’s driving me crazy!
@HelpBehindTheScenes welcome back. That sounds tough.
I couldn’t cope with that at all. Whilst generally we have our evening meal at 6pm if we are busy it will be whenever. If we’ve been to a steam rally it might be very late! We nearly always eat our main meal in the kitchen, together, it was extended years ago so there’s plenty of room.
@HelpBehindTheScenes Welcome back. My husband is 23 years older than myself. He too is in denial that I am REALLY his Carer. However he is so deaf and struggles with the computer and day to day things. I too walk on eggshells constantly. I no longer love or even like my husband.
For me now it is a business arrangement. We have been married 34 years. Only way I can keep my home is to try and keep a vicious nasty old man clean and safe. I see myself as a ‘live in carer’ rather than a wife. A friend asked how I would feel if he died and was shocked when I said utter and total relief’ . I have been caring officially since Jan 2013 when he had his brain heamatoma but probably a couple of years before that.
Do you have a local Support for Carers? Sometimes they have a telephone befriender service and these volunteers have often been carers themselves. Do you have any friends or local support. I try and get out for a couple of hours but have to stay local in case he needs me to come home quickly. He thinks ‘wives should not go out without husbands’. Keep posting - check out Roll Call. We share day to day frustrations and even have a giggle at times.
23 years gap for you, 21 for me. Walking on eggshells. I bet we have much in common! He objects to the way I say things. I memorise how he says I should phrase things. (“I’m afraid that” whatever …) It works one day, then annoys him the next. I truly can’t get things right.
*Edited by moderator to protect identity *
@HelpBehindTheScenes Yes you have my sympathy. I even get pulled up about the way I pronounce ‘H’ when I pay HIS TV Licence using the automated system which asks for a postcode. He would not be able to do it due to his deafness. I am so very sorry that you are going through this. Do you WANT to go on caring for him? Do you have any other options? No one even a spouse can be made to care. Is it worth progressing seeing a good Counsellor?
Frankly if I had the finances I would get him out. No apology as he has made my life utterly and completely miserable for the 15 years. He has no friends and thinks he is superior to everyone else. Even on his Forum about Astronomy he constantly falls out with the other posters. f
Can only send you cyber hugs.
Hello selinakylie. I don’t think that was a sensitive question for your friend to ask, but it happened. I am certainly not shocked by your response and I don’t think most readers of this forum would be either.
If you are asked that question again, you could fend it off with a truthful but neutral reply. You could say something like, “It would be strange to be living on my own again, even though I would be relieved of the caring burdon.” If necessary you could continue that with, “It is easy to look back at the days when I was single and living alone, and think to myself, ‘Life was not so bad then,’ but many things have changed over time.”
This would answer the question truthfully and in a manner that would be unlikely to considered offensive.
@Denis_1610 TBH I have been caring a very long time - officially since Jan 2013 when he had the acute on chronic brain heamatoma but probably a couple of years before this as he was drinking nearly a litre of vodka a day. He is 23 years older than me. I think people who have never cared need to be aware of the ‘realities’ of caring if only to stop them sleep walking into caring. If they then CHOOSE to care, hopefully they can work at putting some infrastructure in place. I have no issues if my friend thought I was ‘hard’. TBH she is the only friend who is struggling to be supportive. The others think I am a Saint!!! I am NOT by a long way as I do struggle to stay patient and NOT show my disgust at the incontinence issues as trying to clean those gowns was NOT pleasant nor was dealing with the pants and pads.
I think we need to take ‘the gloves’ off and tell it as it is even if it upsets people!
That sounds horrible. On a forum like this, I think we can be honest with each other about the bad bits. If a friend asked you how you were, and you were going through a really difficult time, no-one should be surprised that you said what was actually on your mind.
I quite agree, selinakylie. And it is good that the person who was “shocked” was also supportive.
We can choose how we talk about our carees. We can take a neutral line or pull no punches with the unpleasant truth according to our audience. Sometimes, of course, it is best to be fully truthful, even if what we say may risk causing offence. People that have good intentions of being supportive need to know.
OK, let’s have a giggle. My wife insists on pronouncing the letter H as “haitch”, and ignores my insistence that the proper pronounciation is “aitch”. I have a working deal with her. If she is going to say “haitch”, I am going to pronounce the letter W as “woubleyou”, not “doubleyou”!
@Denis_1610 I apparently pronounce it wrongly! I do like the fact that you can still have a laugh with your wife though. I have to confess I probably do pronounce the ‘H’ too strongly rather like your wife rather than say ‘Aitch’. When I give postcode tried saying ‘Hotel Alpha’ but the automated machine wont accept it!!! The weird thing is that he is attached to headphones and TV 24/7 but if I am on the phone he takes them off and listens.
(my emboldening) Hello, HelpBehindTheScenes. So why keep on trying to get things right, when clearly there is no “right” that will satisfy him?
Is he careful about how he talks to you, sprinkling his speech with veiled apologies? He can’t be if his standards change day by day. This is just a bullying behaviour, putting himself on a pedestal of self-assumed importance and expecting you to submit.
You do not need to apologise, or even suggest an apology in your speech, if you have done nothing wrong.
I suggest that you talk to him in simple plain English, using the minimum of words. If he suggests you fancify your speech, just say something like, “Don’t be ridiculous.”
If you are caring for him, then he should not have the upper hand. Don’t feel that he should be allowed to interrupt your work without notice either. Over the years I have learned to get my caree to wait for attention if necessary. Even if I am doing something trivial, I may finish it off before going to attend. If I were to drop everything immediately every time I were interrupted, I would soon find myself with several unfinished jobs to see too. That used to happen - and my caree would criticise me for not finishing jobs!
Thanks to counselling, Learning how to avoid jobs without saying No made a huge difference to me caring for mum. Once I realised that I should be proud of what I did, not guilty about what I didn’t, I felt better. Most helpful of all was the realisation that I cared for mum not out of duty, but because I loved her. She had agoraphobia, I loved travelling. She had OCD, I didn’t. Yes, she drove me nuts at time, but I would always be there for her, as she had been for me growing up.
The ambivalence is an issue. I loved E very much when I married him but looking back, the isolation and controlling behaviour kicked in very quickly. I left my job and rented home to marry him. I worked very hard to run the business with him and in fairness I was ‘joint MD’ . I guess issues arose when I gained confidence and ironically I was ok in dealing with the media including BBC Radio and live Tv -
GMTV and broadsheet journalists. He could or would not accept that I had grown intellectually and in fairness, I needed an equal partner not a Father Figure’.
I frankly wish I had divorced him back in 2004 when we retired and I started to feel he was mega controlling. I guess we were at different stages in our lives? I wanted to do a degree and vol work but he found both threatening. He describes his previous two wives as ‘mad’ and a partner he lived with as ‘mad’ but this now sets off HUGE alarm bells…
Your last sentence - something a bit similar in our back story, too. Except - I now think that someone on the spectrum might not be able to recognise what IS mental cruelty, and therefore might reject accusations of it. The alarm bells ring too late, don’t they?
I’m lucky - I’ve had a graduate career. Though at home I laugh wrily at how the competent professional creeps around trying not to cause upset by using the wrong words or uttering a word of criticism!
@HelpBehindTheScenes E managed to control me by isolating me - easy as in 1990 no emails and I did not drive plus moved 40 miles away from the area where I had lived. I had worked for the MOD and did vol work at the local theatre so had a ‘social circle’. Most were single though and contact ceased. Also I was so busy with trying to learn how to run the Training Company. But yes the fact he was so anti me having female friends was an alarm bell. He said his second wife’s best friend had ruined their marriage. I thought even then that this was rather strange… no easy answers. For me I would like to stop caring but not financially possible. I can only try and get out for short periods and then deal with the mood swings and threats of ‘divorce because Wives should not go out without their Husbands’. I am no longer going the ‘extra mile’ re the prompting but will continue to do the basics.
Can only send cyber hugs. This is a safe place to offload and have a chat and there are several on here in similar situations…