Fed up

For issues specific to caring for someone with dementia.
I'm really struggling with my husband with Lewy body dementia. I'm 18 year younger, 61, he's nearly 80 and if I'm honest I don't want to be looking after him anymore. I had a lot of early trauma, have a physical disability I was born with, but am very able, have a needy mother and have anxiety and depression which has been exacerbated by his needs.I have tried many therapists but not really helped. He never really seemed to listen to me or care for me, though a man's way is often to mend things and provide, buy nice presents I realise which he did do but i always contributed a lot more, in many ways including helping and working for him so less financially in money but a lot in hours. He'd say he loved me but what does that mean when someone leaves a mess for you to clear up and doesn't appreciate you or look at you when you're talking to him or check if you're ok much?
Now it's about 10 years since the diagnosis and he is a lot worse, often doesn't understand what I'm asking him to do, confuses eg a door with a chair but then can talk very clearly, though so quietly the most used word form me is 'what?'! He can hardly manage to get his food now and went to have a shower and left some clothes on last night.
I feel so angry and irritable, I don't have time or mental space to do creative things, his daughters don't/won't help, don't even ring to ask how he is, there's family stuff there but isn't there in most families?
I don't know if he needs residential care. Probably not, he goes to a day centre 2x a week. I'm organising someone to come in as well but I know it isn't the answer, I can pick him up from the day centre and be shouting in a few moments, i shout and swear and am at risk of being rough and am then patient and calm. He has more than the 23k.
i would like to buy a camper van and travel round with my lovely rescue dog visiting friends and reading, writing walking for a couple of months and then live on my own in a little cottage and drop in and see him now and then., why aren't I allowed to do that? Of course I feel guilty and it seems that every other carer keeps going much longer. and better than me.
Thank you anyone for reading this and i wish you well in your struggles.
I'm sorry that I can't offer any ideas to help you in your situation but you're by no means alone. I do know exactly how you feel. Do remember that many men are basically shallow creatures - I'll even hold my hands up to that myself, it doesn't mean we don't care, we just don't express ourselves as women would like us to.

I'm 68 and care for my wife who's 70, she's most definitely no longer the girl I married nearly 50 years ago and I'm constantly wondering why I'm doing it, but what is the sensible alternative? There really isn't one.

I too find myself shouting at my spouse, this is not something that has happened until quite recently, cross words were never a part of our relationship, but she just rubs me up the wrong way in so many different ways so many times a day.

I feel that we've been somehow cheated out of our retirement.

There must be some help that could be provided for you, but I'm not really clued up on that stuff, someone will be along who can help on that score.

Good luck with the camper van idea, give me a wave if you pass through the New Forest: drop in for a cup of tea if you feel like it!
Miranda no words but I do understand. My husband is 79 - 23 years older than me. I am not sure what is wrong with him - osteoarthritis which seems to cause him a lot of pain and loss of movement. lupus, psoriasis which has led to cellulitis which we are just about on top off. Constant constipation which means constant accidents for me to clean up. Dementia? Not sure but he is a very controlling man so getting a diagnosis is not going to be easy as he would never co-operate.

I feel it has to get to crisis point before anyone will take notice of us.

You do sound very alone but hopefully we can offer some support here. I do not shout at my husband as frightened of him, but do struggle to stay patient when he won't take his pills or medication properly.
So I would not feel too guilty if you do lose it ' occasionally.

The only thing i can suggest if finances allow is a private counsellor to offload to.
Miranda, sadly, this is the 'flip side' of marrying an older man, isn't it, sigh. Being a generation younger than one's husband is 'great' when you are looking for someone 'older and wiser' as a husband (so to speak), but of course this is where the chickens come home to roost. Now they are just 'older and needier'.....

(A middle aged friend of mine, newly divorced (husband went off with someone else), was 'taken up' by a richer, older men, and 'doted on' for a year or two - she then got restless as he got more 'possessive', and the gloss of her having been 'wanted' by someone even though her husband had walked out, and the 'lifestyle' she had with this older man, was wearing off, finally made the decision to call time on the relationship. He'd started to develop health problems. She asked me if she'd done the right thing and I said YES YES YES YES YES!!!!!!! She'd got out 'just in time'! OK, that may be a cynical thing for me to say, but BOY was it true - he was getting more and more 'controlling' - wanted her 'home', didn't want to go out any more, didn't want 'fun' and just wanted her to 'look after him'.......)

Sadly, you want a life of your own again, and that can't really happen unless your husband dies, or goes into a care home, or, the only other possibility, you divorce him.

(I'm genuinely not sure what happens legally if you want to divorce someone with dementia - if they no longer have legal capacity, I'm not sure what happens. I assume there must be SOME way - these days we CAN divorce on grounds of insanity - it used nto to be - ie, not 'insane' but simply 'no legal capacity to consent'. You may have to wait five years, that's the only problem - though the law seems to be changing on that hopefuly?)
Well I think Jenny, that dementia does cause what most would agree is 'unreasonable behaviour' so it would be worth Miranda at least seeking legal advice.Also maybe a note from the GP saying that she was not able to cope long term as a carer? Sounds harsh I know but if I had the financial means, I would start divorce proceedings. My cats are the reason I stay because moving into rented accomodation would mean I would lose most of them..

Re your friend, yes she did the right thing. I wish I had left back in 2006 when my husband's behaviour became more and more unreasonable - linked to heavy drinking and retirement. In a good marriage, the older partner should let the younger one mature and gain confidence. Yet so many older men seem to want to stamp out any signs of independent thinking in their younger partner? Insecurity? Fear of being 'left'? Who knows.

Point I am making is that Miranda cannot be made to 'care'. If the price starts to become to high then look for ways out? I would suggest a counsellor first though to talk through options.
Well I think Jenny, that dementia does cause what most would agree is 'unreasonable behaviour' so it would be worth Miranda at least seeking legal advice.Also maybe a note from the GP saying that she was not able to cope long term as a carer? Sounds harsh I know but if I had the financial means, I would start divorce proceedings. My cats are the reason I stay because moving into rented accomodation would mean I would lose most of them..

Re your friend, yes she did the right thing. I wish I had left back in 2006 when my husband's behaviour became more and more unreasonable - linked to heavy drinking and retirement. In a good marriage, the older partner should let the younger one mature and gain confidence. Yet so many older men seem to want to stamp out any signs of independent thinking in their younger partner? Insecurity? Fear of being 'left'? Who knows.

Point I am making is that Miranda cannot be made to 'care'. If the price starts to become to high then look for ways out? I would suggest a counsellor first though to talk through options.
I realise Miranda you have tried therapists but maybe you could give it a last go? Maybe find someone who specialises in carer relationships? It does sound as if your husband is going downhill though so maybe nature will take its course?
"The older partner should let the younger one mature and gain confidence. Yet so many older men seem to want to stamp out any signs of independent thinking in their younger partner? Insecurity? Fear of being 'left'? "


I don't think a man wanting to marry a much younger woman is likely to be emotionally mature in the first place!

Glad to hear that dementia would count as 'unreasonable behaviour' from the point of view of divorce.

Helena, are you SURE you'd be so impoverished? Surely a divorce judge would award you half the house? Lots of 'divorced couples' continue to live in a house until it's sold.

Or do you assume your husband would be, let us say 'uncooperative' about the divorce, about selling the current house and splitting the proceeds with you, and indeed, in splitting anything between you? Sadly ,from what you've told us about him, I suspect that is so....
Helena - ARE you going to inherit the house when your husband does die? Are you sure your financial future is that safe?? Do you know what his will says?

It COULD be that divorce would actually be the financially SAFER option for you, before his Will could be executed?? (ie, if you haven't inherited the house??)

Ditto for Miranda!!!!
The house is in my name Jenny - not sure husband remembers this but it was a 'buy to let' and for tax reasons it was in my name . However, due to length of marriage, if we divorced, then I am pretty sure I would have to sell and give half the proceeds to him.

Yes if I left, I KNOW he would be un-coperative and lets face it, would a judge make HIM move out given his age? The only way round would be to stress that I am his carer and then it would depend if he could live alone with carers? What you and I feel is acceptable, is way above what the NHS at the moment feel is acceptable as I went through this with my late father. So leaving for me would be a huge risk and what would i do with the cats?No way could I afford a cattery for them long term.

My solicitor told me 5 years ago that I would inherit because if husband changed the will we could 'contest' based on length of marriage - now 28 years. Also husband has no contact with his children and has sisters whom he speaks to once a year so it would be hard for him to change his will I think. He could leave it to a charity I guess.......but we are at the stage where maybe mental capacity could be questioned?

I would suggest Miranda see a solicitor and get the up to date legal situaiton. I for one, would not judge her for leaving.