My question is not dissimilar to Maryjoan's (big hug to you Maryjoan, not much else I can offer) My OH was diagnosed with Alzheimer's 6 years ago and is getting iller quite slowly. We both had senior jobs in big companies and were used to being self sufficient and in charge at work. At home, I am now realising, I was more compliant because he liked to have his own way a lot and I couldn't be bothered to argue about things that weren't important. Now he is becoming very determined to do things EXACTLY as he wants, so if I suggest anything at all that he doesn't want to do he gets all stony faced and won't ever do anything I suggest (eg. taking pain killers for his sore knee, drinking more water in hot weather, getting someone in to cut the grass because he can no longer manage it but doesn't want to admit that he finds it hard, NOT DRIVING etc etc) I know some of the books say 'Never argue' but i don't directly confront him, just try gently to suggest things. But can anyone tell me what they do when confronted with a really bloody-minded person who wants his own way in everything (he even likes to go round the house at night locking up when I've just done it and have told him I've done so, because he's always done it like that and seems not to trust me, though no reason why not). I am a patient person (a Mum with vascular dementia for several years and having brought up a pair of wonderful twins have made me able to exercise a lot of patience) but these days I find I'm getting snappy with him (tho I know I shouldn't) because I wait and wait and wait for him to do the things he's decided to do (which I could do better in a quarter of the time) and won't ever accept any help or advice . I need even more patience, and i wonder how other people manage. I feel as if I exist as a sort of ghost, just here to do what he wants, with no personality of my own any more. I realise that sounds selfish, but when people say that they mourn the disappearance of their loved one, I'm mourning my own disappearance too. I now know that I should have been more assertive for the past 46 years with him, but it never mattered all that much to me because I knew who I was and how I wanted my life to be, but now I'm disappearing and I wonder how other people cope ?
I'm turning into a ghost
- Thread starter Morganlefay
- Start date
I'm sorry I can't really help as my OH was a little like yours. I too mainly went along with things because I'm easy going. He was strong minded and would do things his own way but as his illness has progressed he has become more and more compliant but I do understand where you are coming from. We went through a short period when he would see me do something like lock the doors then check for himself and it would have me raising my eyebrows and clenching my teeth but I managed to let it mostly go over my head.
Would suggesting things help rather like 'I'm going to have a cold drink now what would you like'? I often used the words the doctor said...
it could work wonders.
Drinking enough is of course is important so I guess the only thing I can really suggest is to choose your battles, let the little things go like him checking the locks as long as he is not putting himself in harm. Concentrate on trying to keep him safe and healthy and ignore the rest to keep your own sanity.
Would suggesting things help rather like 'I'm going to have a cold drink now what would you like'? I often used the words the doctor said...
it could work wonders.Drinking enough is of course is important so I guess the only thing I can really suggest is to choose your battles, let the little things go like him checking the locks as long as he is not putting himself in harm. Concentrate on trying to keep him safe and healthy and ignore the rest to keep your own sanity.
Yes my dad is a bit like this.He gets “stony faced “ when I suggest maybe he should take his laxative.He will argue with me about it.So now I tell him if he doesn’t want to take it,it will be him in pain.I cannot always be bothered to disagree with him as “black would be white “whatever I say.I pick my battles and as he has “capacity “(fluctuating) If he wants to be in pain,so be it..It gets very wearing trying to help when he has decided to be awkward..But he has always been the same..All I can say is maybe pick your battles.Easier said than done I know.
The whole blessed thing is tortuous for the carer, isn't it? I keep saying it is just SO BORING being here with someone who never speaks to me, but you have to be on the alert for all the time, just like you would with a baby. At least a baby is cute and lovable and will grow into independence. My OH is not cute - he's 73 now, and he will only grow into more dependence.
I have just had 4 nights away in Scotland and how much I loved being a 'normal' person while he daughter learnt what it was like to look after her father!
But just one week after I got back - and I am as low as ever !!! Oh well! We are all ghosts of our former selves......
I have just had 4 nights away in Scotland and how much I loved being a 'normal' person while he daughter learnt what it was like to look after her father!
But just one week after I got back - and I am as low as ever !!! Oh well! We are all ghosts of our former selves......
I work really hard to persuade him it was his idea all along
I make sure that anything I want him to do I dont ask ask him, I mention about how much it would help him if something happened.
Sometimes I just get on and organise something without asking/telling him that Im going to. Its much easier to apologise after the event
If something is not important I just let it go - its important not to sweat the small stuff. I find myself muttering under my breath - it doesnt matter, its not important, I didnt really want it anyway..........
I make sure that anything I want him to do I dont ask ask him, I mention about how much it would help him if something happened.
Sometimes I just get on and organise something without asking/telling him that Im going to. Its much easier to apologise after the event
If something is not important I just let it go - its important not to sweat the small stuff. I find myself muttering under my breath - it doesnt matter, its not important, I didnt really want it anyway..........
Sometimes one gets bamboozled into this caring thing. He doesn't think he needs carers, doesn't see me as a carer, doesn't think there is anything wrong - but there is, and it affects me more than him.....as I live his life for him, facilitating absolutely everything to make his life run as smoothly as possible.
It is demoralising, tiring, and without any gratitude from a man who as 'lost' who he was to this awful illness. I watched Casualty last night. Duffy, is aware of her dementia - how much easier that is when one can discuss it with spouse/partner as she does.
But so many of our PWD are not aware, and that puts our minds into a strange place. We, the carers, know what we are doing. But our PWD ( in my case) does not acknowledge it. I somehow feels as though we are living a fiction, a lie, for them - if that makes any sense.
You know, sometimes when I watch Prunella Scales on the narrow boat adventures with her husband I think, "but she is aware of her condition and comfortable (?) with it." She has retained, as yet, her ability to be enthusiastic about life, a privileged life maybe, but a life she is still able to enjoy. Sadly, we know what will happen eventually. A partner who displays apathy and lethargy is not a companion. Albeit unintentionally, their condition, alongside the additional problem of not being safe to be left alone, and later, unpredictable, troubled behaviour, restricts every moment of their carer's life and they, just to make matters almost intolerable, are, oh so blissfully unaware of their carer's broken dreams. Their "nothing to look forward to" futures.
Sorry, no comfort, really just bleak acceptance of the prospect of a desolate future with no happy ending.
Sorry, no comfort, really just bleak acceptance of the prospect of a desolate future with no happy ending.
My husband has never been aware of his dementia, maybe he was in the middle stages when diagnosed. He had vascular dementia and Alzheimer’s. It makes life so difficult when you can’t explain things to him. He can’t reason and thinks only of himself. I could scream a lot of the time , He resists things I want to do even though I know he will enjoy it! It’s a battle all the time.
I and my husband enjoyed those programmes so much last year and I thought they were so courageous but only the other week Timothy West gave an interview about Prunella. He said that she is deteriorating a lot and they may have to sell their house to pay for her care. I found it so sad.
So why is it some suffering with dementia are aware of there situation (and they are the ones more frequently portrayed, I guess for obvious reasons) and those that we are caring for deny that there is anything wrong with them? Which, I think, makes it so much harder for us to ever do the right thing?
Its because of a little talked about symptom of dementia called anosognosia, which is where the part of the brain that processes our awareness of ourselves gets damaged, so the person with anosognosia is unaware that have something wrong with them and are unable to comprehend that they have dementia. Like everything else, not everyone with dementia gets this symptom - although I would guess that most people with dementia do.
I agree @Susan11
I wish media would take the opportunity to make actual funding policies clear to those they report about and to readers, that would allay so many fears
I guess, as many partners, he feels he wants to do everything possible to care for his wife, and we are aware here how much that can cost, so he's voicing the general fear that unless he pays for it he will not get the care he wants for her
I wish media would take the opportunity to make actual funding policies clear to those they report about and to readers, that would allay so many fears
I guess, as many partners, he feels he wants to do everything possible to care for his wife, and we are aware here how much that can cost, so he's voicing the general fear that unless he pays for it he will not get the care he wants for her
He said it in an interview about their large house and the cost of dementia care, saying that they might have to downsize to help pay for it. It’s not so much that he would have to do it but that he was aware that they would not be able to afford the yearly cost of a care home unless they did. They would be self funding no doubt and probably don’t have ready cash. The truth of the matter is not discussed which is where the confusion arises. It does highlight the financial strains for people who are not well off but have to fund their own care.
I have been feeling like this recently as he tries to encroach on my life, telling me what to do about the silliest things and looks over my shoulder to see what I am reading and all because he has nothing left in his own life at all. I have to think of things he can look at, do but he is incapable of doing anything so round in circles we go. He is not nasty or violent but I feel my independence threatened unless I resist. Horrible way to live after a normal life.
He is also trying to violate my privacy in several ways which he would never have done before. I hate it when he does that now.
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I can't believe West doesnt have the cash given all the money he's earned from the canal programs!
I suspect most of it is in his name, thus protected but obviously the house in joint names.
