Please don’t feel guilty you have done an amazing job looking after him for all this time. I got to the point with my husband I was so anxious I was having chest pain’s and thought I was having a heart attack. Like yourself struggling to get help. Husband absolutely refused, only wanted me. The social worker came to see me and said I was at breaking point. Husband is now in a lovely care home. The staff are amazing with him and myself. It’s a month today. The first week was awful he kept trying the doors wanted to get out. I hated visiting, couldn’t wait to leave. I’m now starting to enjoy my time with him. I totally understand why your not wanting to see him. You need to rest. Get your head together. Try and make a plan for what comes next. You really need to now think of yourself before you get to breaking point. Your no good to anyone then. I get days I feel so guilty and can’t stop crying but then I realise he’s having the best of care. I don’t think that will ever go. You must refuse to have him back until a care plan is put in place. I really hope you get the help you need.
why do we have to reach breaking point?
- Thread starter jay6
- Start date
Yep - this is my life too. It is so draining and so hard to explain to others why. We've also had all the comments from others over the last few year - 'Are you sure he has dementia, he seems fine, he didn't ask to get dementia' etc, whilst at home he was verbally and physically abusive so yes, I am sure he has dementia and no, I didn't ask to be a carer. And the fact that he as dementia does not make the abuse less painful or more tolerable. My husband has deteriorated over the last 8 months and can no longer walk the dog, gets lost when leaving the home and has almost no short term memory but his confusion is clearer to others, thank god.
I dread the thought of the time when he can no longer walk the dog or go and collect the bread order. He adores the dog and says when she goes, that’ll be it for him, nothing left for him. Hmmm, no comment on that one..
My husband has deteriorated too over the last 8 months or so, bad short term memory, can’t follow instructions. He had a TIA over a year ago and I’ve asked the GP if his deterioration could have been exacerbated by the TIA. I was told that no, it was just natural deterioration probably. Doesn’t matter really, you and I know along with many others on this forum that seeing and living with that deterioration is hard to deal with. His confusion is a bit clearer to others too which ‘helps’?? but he can still present as a friendly jokey person who doesn’t seem to have much wrong with him. Until he asks for the umpteenth time if the dog‘s been fed, what we’re having for dinner, he arranges things and ‘tidies’ which drives me insane…LEAVE THINGS ALONE!!!
it’s ok JaxG, I and everyone else on here don’t need any explanation as to why life is so hard and how it is draining living with it. Xx
I see what you mean, yes, I find myself (sometimes patiently 😊) explaining that no, we can’t do that because… or as I mentioned elsewhere here, no, you haven’t lost your bank card - you don’t take it with you. He seems to accept that better though it still doesn’t always stop the ranting and agitation.
My students were adult foreign students so the years of practice in speaking in short sentences using simple terms is a bonus at times. Not too much information in one go etc. I still need to work on being detached though.
It's really hard not to feel resentful and disgusted. My husband raided my son's closet & took about twenty of his dress shirts saying "they're too small" for my son. My son works from home now so he just laughed when he saw what dad had done and said: I'm gonna need *some* of those back. The behavior is so bizarre.
I am feeling pretty sad about losing him when i think of all the love and years we've had together, and also sad about icing him out--it feels so bad, but I can't really play along with him too much either--it's so emotionally exhausting. I do think when I spend quality time with him, he's calmer and happier, but it's at a direct cost to me.
This really had me laughing. YES, THE DOG HAS BEEN FED!!! two seconds later: "I think he's hungry."
All the dishes he does are greasy and he puts things away in a new place each time (but he's stopped doing the dishes for the last week or two). I realize that I have been hiding things from him so I do not lose them (This is something I read about 6 months ago on the forums and thought--oh we're not there yet). My husband is a quiet person so his progression is kind of sneaky and it's gradual, but I see a big difference from a a year ago --& it's not just me noticing and acknowledging things--it's that too--but his verbal skills are very low and his engagement is lower than ever.
Just want to say that the people on this forum are great, and it is a relief to be able to commiserate without feeling cruel or guilty. The dementia caregiver experience is literally torture and it's NOT because we do not love our spouses. It's because we do love them!
Haven't been on here for a while but thought I'd answer some of the replies as you have been good enough to read.
Update.
They eventually decided to release him saying he was referred to dementia team, so I'd get help with the abuse. But nothing happened. Surprise, surprise.
I'm keeping myself pretty much to my self as much as possible. He seems to be managing getting himself up and dresses, then sits in front of TV. Still can't really say much or risk the threat of abuse.
He has had 3 or 4 accidents which I obviously helped him and cleared up.
Made excuses not to go for a 3rd hospital appointment for his different problems so I cancelled the last outstanding one. His choice, not battling anymore.
I'm now treating each day like I'm on my own. Pop out, just to get out the house. Stay in a different room. Leaving him to do usual. Sit in front of T.V. all day.
Excepted he really believes nothing is his fault. Not that it was ever any different before the dementia. I'm to blame for just about everything, always have been.
Can't be bothered to talk to G.P.'s etc. anymore as sick of hearing 'It's his dementia (before that it was 'It's his stroke') because NO. It's dementia on top of a controlling, nasty abusive, selfish personality which has just been magnified by the dementia.
So now to reply to comments
Update.
They eventually decided to release him saying he was referred to dementia team, so I'd get help with the abuse. But nothing happened. Surprise, surprise.
I'm keeping myself pretty much to my self as much as possible. He seems to be managing getting himself up and dresses, then sits in front of TV. Still can't really say much or risk the threat of abuse.
He has had 3 or 4 accidents which I obviously helped him and cleared up.
Made excuses not to go for a 3rd hospital appointment for his different problems so I cancelled the last outstanding one. His choice, not battling anymore.
I'm now treating each day like I'm on my own. Pop out, just to get out the house. Stay in a different room. Leaving him to do usual. Sit in front of T.V. all day.
Excepted he really believes nothing is his fault. Not that it was ever any different before the dementia. I'm to blame for just about everything, always have been.
Can't be bothered to talk to G.P.'s etc. anymore as sick of hearing 'It's his dementia (before that it was 'It's his stroke') because NO. It's dementia on top of a controlling, nasty abusive, selfish personality which has just been magnified by the dementia.
So now to reply to comments
I didn't v
I didn't visit everyday and made it perfectly clear, I couldn't cope with his nastiness anymore and needed help
Sorry to hear you had to put up with the same. Makes me wonder why some nurses actually work in care profession.
Hope you managed to enjoy your respite Angela. It was like heaven when mine was in hospital. Peaceful with no stress. Bliss
I think I have now come to terms with it all and stopped feeling guilty. I know now I always did very my best before and after the stroke and dementia. Mine was very self centered long before all this.
You have probably done your best too, so you also need to stop feeling guilty yours is now in a home.
Sorry to hear anxiety was causing chest pains for you. I had the same. I think dementia effects carers in ways no one ever realises, unless you have actually been there.
I can really sympathise Jax. Even on here you get people telling you how you need to be more understanding when someone has dementia, but even they don't realise it's not just the dementia we deal when abusive behaviour is involved.
Hi there. Today at around 12pm that is what I call witching time when my Husband changes into the other person, Mr nasty. I was trying to get him out of his wheel chair and he grabbed my hand and nearly broke my fingers. I gave him a lorazepam 1mg and that seems to do the trick. That is my moan for now. Take care.
Like you @jay6 I no longer feel guilty. I do what I need to do - feed my OH, wash his clothes and bedding, try and get him into the bath, give him his pills etc. I do absolutely everything, I'm exhausted and I now know there is no help. I've explored what is on offer from Social Care - I am entitled to 8 weeks respite a year but that still means 10 months with no help. If he is violent I have been told that I will have to sell our home and essentially make myself homeless which I won't do. So like you I keep myself to myself, I don't get into conversations, fortunately he can still be left alone so I can still walk the dog, go shopping etc. It's no life and I can't wait for the day when this changes.
YES! Greasy tins or dishes and cutlery with the remains of food on. Please don’t anyone suggest I should start doing the dishes either, just what are you supposed to do when he takes offence over you ‘taking over’ or ‘doing his job’. I get accused of ‘do you think I can’t mange or something , I’m not that bad yet!’.
The other day he ran the hoover over the conservatory floor and I called through to him to ask had he done the downstairs loo floor too (that leads off it). Took me by surprise when he shot through to where I was standing and shouted at me, asking - whilst wagging his finger at me- ‘What sort of a person do you think I am. eh? What sort of a person…do you really think I’d do the floor but not bother with the loo floor.! ‘ He really went off on one, shouting at me, telling me to ‘learn to behave’😳. (he used to be a teacher). No point in arguing or defending myself as it’d only make him worse.
Maybe he’s not as bad as some of you have to deal with on here but the verbal abuse when he’s angry (he was always such a quiet man too) and being called vile names doesn’t make me want to even make the effort to attempt ‘compassionate communication’ and it’s no use telling me to try and ignore it, it’s the dementia, not him. Whatever it is, it still effing hurts.
My moan over with now.
There seem to be a lot of posts saying much the same thing about increase in rage and aggression. It makes you wonder if they are negatively impacted by Christmas and even things like cards and phonecalls.
My husband is in a Nursing Home now for dementia and I experienced all the things you are all detailing. The trouble is when you are in the eye of the storm you are so distressed and exhausted its impossible to make any headway.
One of the things I think I did wrong was I hadn't asked for help early enough and by the time we needed help we were both in crisis and unknown to social services which was a huge issue. My husband went into hospital following a fall and within 8 days I was told in a hospital corridor with everyone listening he would never be coming home he was a danger to himself and me.
Ask for a carers assessment and if you have had one get it updated. Have you got the social services advice in writing because I would ask for that.They know that they can't take a thats ok attitude when someone is at risk.
Please don't think I am coming up with all the answers I am about to start counselling as to fight for a decent place for Pete and to fight Social services and Local authority I buried my grief and despair and created an alter ego. Im now getting lots of physical symptons as a result. We are all totally screwed up!!
My husband is in a Nursing Home now for dementia and I experienced all the things you are all detailing. The trouble is when you are in the eye of the storm you are so distressed and exhausted its impossible to make any headway.
One of the things I think I did wrong was I hadn't asked for help early enough and by the time we needed help we were both in crisis and unknown to social services which was a huge issue. My husband went into hospital following a fall and within 8 days I was told in a hospital corridor with everyone listening he would never be coming home he was a danger to himself and me.
Ask for a carers assessment and if you have had one get it updated. Have you got the social services advice in writing because I would ask for that.They know that they can't take a thats ok attitude when someone is at risk.
Please don't think I am coming up with all the answers I am about to start counselling as to fight for a decent place for Pete and to fight Social services and Local authority I buried my grief and despair and created an alter ego. Im now getting lots of physical symptons as a result. We are all totally screwed up!!
Of course it does.
Even though, underneath, you know its not him, its the dementia, it is still someone who looks like your husband and sounds like your husband doing all of these things that he would previously never done..
Its bound to be upsetting
Just seeing another persona in the body of my OH makes me cry.
And @maisiecat says "We are all totally screwed up!!" and we are.
Season's bleatings!
And @maisiecat says "We are all totally screwed up!!" and we are.
Season's bleatings!
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