Hi all. My husband has vascular dementia and is confined to a wheelchair with various problems. He has always told anyone who will listen what a fantastic carer I am and he's so lucky. He was diagnosed six years ago and progress has been slow. I have never had any problems with him being abusive but two nights ago he called me a f'ing Judas, that I didn't want to care for him obviously and get someone in to take over! We have had a couple of weeks of bad nights but this came out of nowhere. I know it's the dementia but I found it incredibly hard and it upset me greatly. He goes to day centre three days a week and the manager has talked to him and it has passed. His care is full on. We have carers twice a day but it's exhausting. I've given my life to caring for him,which I don't mind but being called names and he being so nasty to me was awful. I have made arrangements for him to go to respite two nights a month now to get a break as the caring role is never ending. Please can you advise. How do other people cope with the hurt of someone who loves you and you love, calling you names and being nasty. He's fine now but it shocked me. I know we can walk away but the hurt goes with you and the tears fall.
Cared for making offensive remarks to me
- Thread starter Florence.
- Start date
Thank you Carmar. I know everything you say is true. When I was able to speak to him about it he knew he had done something wrong but not what it was, so this just shows what it's like. WE soldier on. I would hate to lose my love for him, it just gets chipped away. He adores me, always did, that's what makes it so hard.
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Sometimes I found with my husband that in his own way, he might not have known what he was doing exactly, but he was trying to do something to help. And often his attempts at helping made things so much worse.
So, although what your husband said was very hurtful and sounded very cruel - could it be that in his dementia, he has some realisation of what caring for him is doing to you, and was trying to let you know that maybe you should have more help? But it came out wrong?
So, although what your husband said was very hurtful and sounded very cruel - could it be that in his dementia, he has some realisation of what caring for him is doing to you, and was trying to let you know that maybe you should have more help? But it came out wrong?
Thanks Lady A. He may very well be trying to do this as he know what a heavy load I have but he would never, in his right mind, have been so cruel to me. A couple of days on I have been able to reflect but am still struggling with how you just accept what's said and move on. It's the next stage and no doubt I will learn to deal with these outbursts if they happen. I probably also have my own emotions to cope with with his condition deteriorating. This last issue has finally forced me to accept I need a break and use respite. He's tried it twice before and didn't like it but needs must I'm afraid and I need a break so we have to do it.
Yes it is amazing Florence, I have read, replying is hard for me today and still wish TP had a 'like' button or affirmation that you have read a post and support even if not able to respond.
Sorry you are experiencing this pain, sometimes I have responded to person with a short, sharp response and it has had good effects as if somehow shocking them out of the moment that they are frustrated with. Many times I have been driven to the end of my tether and then it breaks and they realise something of my limitations too. I agree with Lady A your husband's frustration means he can't tell you what he would really like to and of course once did. I hope the respite helps you both.
Best wishes
Sue
Thanks Sue J. It's hard for us all isn't it? Do people just scroll through and read I wonder. I came onto TP today hoping for people with like experiences to reply but maybe I'm naive. Perhaps that isn't how it is. I just thought,do you see a title of a thread and think Yes, that's me, I can advise here, or just go on and not. I don't know. It's change my view.
Yes it is amazing Florence, I have read, replying is hard for me today and still wish TP had a 'like' button or affirmation that you have read a post and support even if not able to respond.
Sorry you are experiencing this pain, sometimes I have responded to person with a short, sharp response and it has had good effects as if somehow shocking them out of the moment that they are frustrated with. Many times I have been driven to the end of my tether and then it breaks and they realise something of my limitations too. I agree with Lady A your husband's frustration means he can't tell you what he would really like to and of course once did. I hope the respite helps you both.
Best wishes
Sue
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I think sometimes, people might read, and find they just can't offer any helpful advice, or they don't want to appear as if they are being trite in the face of what you are going through. And sometimes, those going through similar experiences might feel that rather than encourage each other, you may just drag each other down, if no-one has found any workable solutions to this particular problem. Does that make sense?
[/QUOTE]Thanks Sue J. It's hard for us all isn't it? Do people just scroll through and read I wonder. I came onto TP today hoping for people with like experiences to reply but maybe I'm naive. Perhaps that isn't how it is. I just thought,do you see a title of a thread and think Yes, that's me, I can advise here, or just go on and not. I don't know. It's change my view.
QUOTE=Sue J;1312696]Yes it is amazing Florence, I have read, replying is hard for me today and still wish TP had a 'like' button or affirmation that you have read a post and support even if not able to respond.
Sorry you are experiencing this pain, sometimes I have responded to person with a short, sharp response and it has had good effects as if somehow shocking them out of the moment that they are frustrated with. Many times I have been driven to the end of my tether and then it breaks and they realise something of my limitations too. I agree with Lady A your husband's frustration means he can't tell you what he would really like to and of course once did. I hope the respite helps you both.
Best wishes
Sue
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Think my case in point was 272 views 9 replies, 2 offering advice. The title of the thread in my case was self explanatory so if one can help, read .. And reply?? Wrong??
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I do understand the heartache that this situation has caused. My husband is just over four years into his diagnosis, and like yours, has always said how grateful he is for all that I do to make life as good as possible for him/us. We are very close and do all that we can for each other.
However, back in March, my husband's dementia took a sudden dive. I was no longer the wife who loved and supported him. I was a witch (making things like chairs float, appear and disappear); within days he believed I was conspiring to murder him with the help of our son, I had killed our daughter, stolen his money, seized his home, and was keeping him prisoner. I was the most despicable, evil person on the planet. He levelled insults at me and our son right left and centre. Our son (who he loves dearly) was suddenly a 'liar' and 'snide, bullying coward'.
This was not the rantings of a UTI but a progression of the disease. In the end, he became so fearful for his life and so full of loathing for us that he turned violent and attacked our son.
This led to the next stage of the nightmare. He was admitted to a secure unit in an NHS hospital where he was deprived of his liberty for two months while his medication was tweaked to a level where he could return home. I visited every single day because I love him so much and wanted to be there for any moments of clarity where he might accept me again.
Those moments did come but there were so many days when he loathed me. He would be smiling at someone one minute then see me and the smile would instantly vanish and be replaced with a long cold stare of contempt and disgust.
It was very hard seeing this reaction to me and listening to him tell the medical staff that I was evil and disgusting.
Some days I would visit and he would be holding the hand of another patient with dementia and exchanging kisses (almost childlike, like when two toddlers kiss each other innocently).
Surprisingly, this didn't bother me. I didn't see my husband kissing another woman, I saw two desolate souls momentarily gaining some kind of peace and reassurance within this awful disease.
I think it was then that I understood the phrase 'unconditional love'. It is easier to love someone when they show you love and respect but harder to do so when they show you nothing but disgust and loathing.
We got through it all and my husband has been back home with us since early May. I have him back as he was - definitely more confused but back to my loving husband who trusts me and our son and knows we love him dearly.
He has no clue how bad things got, what he said or what he did. It would break him to know that he had caused physical and mental harm to those he loves.
For my part I love him as much as I ever did and actually feel that maybe my love for him is even stronger as a result of what it was put through.
It is quite possible these feelings of hatred and paranoia will return further down the line, once the new medication ceases to be effective. Having been put through the mill once though I know it is worth putting up with insults and sticking through it all because there is light again the other side.
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That is so helpful LynneMcV and is exactly what I was hoping for. That people out there have been there and could advise. your situation sounds very hard but Im so pleased your husband is back with you. I have unconditional love, as I think we all do, but it is sorely tested at times, especially when exhausted. My husband is confused by night and day and his meltdown was caused by my not being there all night to see what he wanted, as he thought it was day. Hey ho on we go. Thank you for taking such time to give the advice you did. Sending you a hug and hoping things will remain a bit level for you for a while.
Florence, sometimes we just don't know what to say, and sometimes we just don't have time... But we do all listen and we are in a similar (but not identical) boat. In my case, I have so few opportunities to think calmly and reply intelligently that I tend not to reply much at all. But I'm hoping that one day I'll have more time, and that I'll be able to think of something intelligent to say. But that's not guaranteed!
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PS My husband has fronto-temporal dementia (behavioural variant) and frequently makes extremely unpleasant and hurtful remarks to and about me. Most of the time I ignore or try to divert; sometimes I explode. I don't think that makes me a bad human being, just a human being.
Sent from my iPhone using Talking Point
Sent from my iPhone using Talking Point
I read it too and wish I could help. My OH is not so physically disabled and has moderate bvFTD too. After a weekend where he was unhappy with any of my efforts to do things with him, look after him etc, and he yelled and swore at me several times, I ended up going out for an hour or so and cooled down. Thus isn't helping you though. You need respite in any way you can. Sending hugs and wish I could help more.
It is difficult and heartbreaking Florence. It is beyond exhausting. Yes it is the Dementia but that is no help to you. Sometimes I think people don't consider the carer's pain and exhaustion. Of course you are hurt. You are human and so stressed. Can you get some more respite?
All I can do is send you support.
Aisling
Thank you Aisling. You sound as though you have "been there". As you will know, when you are exhausted things are so much more difficult to deal with and slights hurt more then than when you are less tired. All we can do is keep going. I have booked respite for two nights a month for the rest of the year. Last time was a nightmare but I have to try again for my own sanity. God bless you for your support. I have really identified with some of the people who have replied.
I have indeed Florence. I post under Nursing Home thread. You are in an awful position. Do you have carers to help you? Feel free to PM me.
Aisling xx
Thanks Aisling. Yes, I have carers twice a day and day centre Mon, Weds and Fri. My husband is in a wheelchair due to various problems and has vascular dementia. He is going through what I think is a new stage, more confused, especially at night. If I can get some sleep I can cope but you get past it and then can't sleep. I got 42 days a year respite put into my care package yesterday so we will start with two days a month. I will PM and thanks for your support. (My husbands family are Irish!)x
Thanks Aisling. Yes, I have carers twice a day and day centre Mon, Weds and Fri. My husband is in a wheelchair due to various problems and has vascular dementia. He is going through what I think is a new stage, more confused, especially at night. If I can get some sleep I can cope but you get past it and then can't sleep. I got 42 days a year respite put into my care package yesterday so we will start with two days a month. I will PM and thanks for your support. (My husbands family are Irish!)x
No problem Florance. PM whenever you are able. I usually check in here daily. What part of Ireland is your husbands family. I live in Midlands. Hope you have visited and had good experiences. Get sleep whenever you can. Nothing wrong with a sleep in the daytime!! I recommend it.
Aisling xxx
