So tired and feel as if I am cracking up...

[Pots and Pans]

Really tearful today. Just exhausted by OH. Feel like he is wearing me away more every day. Not so much by physical demands, but the endless repetitive questions, the constant coming to sit wherever I am ( I do some paid work from home) , regularly forgetting who I am... and getting really angry if he sees me upset. Have seen other threads where other carers note how everyone seems to forget how they too feel... just assume you can cope. Can see from threads how much worse this can get and not sure I can even do it now. OH been unwell more than a year or so but wasn't bad until this last year when a hip fracture led to post-op delirium and rapid progression of symptoms with nearly 2 months in bed with carers essential to have here all the time ( self-funded). Since early November just us two here and I can leave alone for short periods... So I can shop, but he usually tells me if I am out he will go out too and I have come home to find him on the pavement or having knocked on neighbour's door and asked if they know where I am! OH doesn't want any carers here again. Seems to think unnecessary as I don't do much anyway! So, helping with dressing,showering, doing all household stuff, all financial stuff, organising all medications and appointments, taking everywhere, daily walk round block to keep mobility, emptying commode most days, handling continence issues ( like clothes changes when needed) ... Oh, and organising all entertainment as can't use TV remote or turn on radio. That's nothing? On top of that feel like we never have any fun. It's all about the illness now. Rarely have decent conversations Even if we got a carer in for a few hours, nowhere to go anyway in this Covid world. Sorry, but feeling really fed up. But what are the options? We had an AZ support lady come once 6 months ago mostly to help us claim attendance allowance. Care home? OH has capacity ( I do have LPA) but would refuse to pay fees ( he has enough to begin with).
Apologies for rant. Like many, think I post when we have a bad day... trouble is, that's most of them nowadays... my lovely fit OH of over 45 years has turned into an angry, complaining, bewildered man who has often forgotten our past. And I feel like I am betraying him if I say anything, even here, and then feeble fit not bring a wife who can handle this. Love is love... or should be.

 

[marionq]

Many of us will recognise your feelings @Sue Stormy. They are legitimate and understandable. Who signs up for such a life? The other side is that no one wants to have Alzheimer’s either. Such a predicament and no easy answers especially now. In other times I would be recommending groups and daycare but I don’t know that they even exist at the moment. Is there any chance of a week or two respite in a decent care home just to let you draw breath?

 

[Pots and Pans]

Thanks for support. No, no chance of respite... Firstly, he wouldn't go and secondly cos of Covid would mean isolation and suspect that could be trigger for real deterioration. We are so much better than earlier in the year after hospital stay so any echo of that could be disaster. As may need to explore care home option later ( soonish?) dont want a bad experience now. No daycare in our area anyway but there is a group/ café for post Covid, I think. For now, just have to soldier on, but think this forum will help - at least someone listens to me, so thank you for quick response.

 

[Grannie G]

I`m another who has been where you are @Sue Stormy.

There came a time when I asked my neighbours not to answer the door to my husband who kept knocking on their doors asking them to find an estate agent for him so he could sell the house and go home.

Adding COVID to the mix must be as near to hell as you can get. At least I managed to get agency carers in.

When the time comes, please don`t fall into the trap of believing your husband won`t go. There are ways to get round this . If you can use this time to think it through, maybe he will accept convalescent care or carers to come into the house as cleaners to make life easier for you.

 

[Pots and Pans]

Cleaners might work.. thanks.

 

[Pusskins]

Really tearful today. Just exhausted by OH. Feel like he is wearing me away more every day. Not so much by physical demands, but the endless repetitive questions, the constant coming to sit wherever I am ( I do some paid work from home) , regularly forgetting who I am... and getting really angry if he sees me upset. Have seen other threads where other carers note how everyone seems to forget how they too feel... just assume you can cope. Can see from threads how much worse this can get and not sure I can even do it now. OH been unwell more than a year or so but wasn't bad until this last year when a hip fracture led to post-op delirium and rapid progression of symptoms with nearly 2 months in bed with carers essential to have here all the time ( self-funded). Since early November just us two here and I can leave alone for short periods... So I can shop, but he usually tells me if I am out he will go out too and I have come home to find him on the pavement or having knocked on neighbour's door and asked if they know where I am! OH doesn't want any carers here again. Seems to think unnecessary as I don't do much anyway! So, helping with dressing,showering, doing all household stuff, all financial stuff, organising all medications and appointments, taking everywhere, daily walk round block to keep mobility, emptying commode most days, handling continence issues ( like clothes changes when needed) ... Oh, and organising all entertainment as can't use TV remote or turn on radio. That's nothing? On top of that feel like we never have any fun. It's all about the illness now. Rarely have decent conversations Even if we got a carer in for a few hours, nowhere to go anyway in this Covid world. Sorry, but feeling really fed up. But what are the options? We had an AZ support lady come once 6 months ago mostly to help us claim attendance allowance. Care home? OH has capacity ( I do have LPA) but would refuse to pay fees ( he has enough to begin with).
Apologies for rant. Like many, think I post when we have a bad day... trouble is, that's most of them nowadays... my lovely fit OH of over 45 years has turned into an angry, complaining, bewildered man who has often forgotten our past. And I feel like I am betraying him if I say anything, even here, and then feeble fit not bring a wife who can handle this. Love is love... or should be.

@Sue Stormy You're in exactly the position I was in last year. I had promised myself I would care for MH right to the end, but unfortunately my own wellbeing fell short and I had to make the difficult decision to place MH into care. I didn't think this would be easy so I didn't tell him. He had a short stay in hospital in October and the night before I was to take him from there to a rest home, they gave him risperidone which calmed him and the switchover went smoothly. I didn't think in a hundred years that he would settle in as he has a very stubborn nature, but within a few weeks he had settled in nicely. I wish I hadn't had to do it as I miss him terribly, but the rest home is looking after him far better than I could and it's his wellbeing that matters most. Best wishes.

 

[Vitesse]

Really tearful today. Just exhausted by OH. Feel like he is wearing me away more every day. Not so much by physical demands, but the endless repetitive questions, the constant coming to sit wherever I am ( I do some paid work from home) , regularly forgetting who I am... and getting really angry if he sees me upset. Have seen other threads where other carers note how everyone seems to forget how they too feel... just assume you can cope. Can see from threads how much worse this can get and not sure I can even do it now. OH been unwell more than a year or so but wasn't bad until this last year when a hip fracture led to post-op delirium and rapid progression of symptoms with nearly 2 months in bed with carers essential to have here all the time ( self-funded). Since early November just us two here and I can leave alone for short periods... So I can shop, but he usually tells me if I am out he will go out too and I have come home to find him on the pavement or having knocked on neighbour's door and asked if they know where I am! OH doesn't want any carers here again. Seems to think unnecessary as I don't do much anyway! So, helping with dressing,showering, doing all household stuff, all financial stuff, organising all medications and appointments, taking everywhere, daily walk round block to keep mobility, emptying commode most days, handling continence issues ( like clothes changes when needed) ... Oh, and organising all entertainment as can't use TV remote or turn on radio. That's nothing? On top of that feel like we never have any fun. It's all about the illness now. Rarely have decent conversations Even if we got a carer in for a few hours, nowhere to go anyway in this Covid world. Sorry, but feeling really fed up. But what are the options? We had an AZ support lady come once 6 months ago mostly to help us claim attendance allowance. Care home? OH has capacity ( I do have LPA) but would refuse to pay fees ( he has enough to begin with).
Apologies for rant. Like many, think I post when we have a bad day... trouble is, that's most of them nowadays... my lovely fit OH of over 45 years has turned into an angry, complaining, bewildered man who has often forgotten our past. And I feel like I am betraying him if I say anything, even here, and then feeble fit not bring a wife who can handle this. Love is love... or should be.

i understand your feelings totally, because like many others, I’ve been there. My husband wouldn’t cooperate with any carers, day centre etc. It was just the two of us, and he had all sorts of delusions, I was at the end of my tether, and couldn’t face another day. It hasn’t been easy, and it has taken a long time, but we are now reasonably stable. I was in a constant state of tears! My GP referred MH to the mental health team and medication was changed, then added to, then tweaked! After much deliberation with my GP I have been prescribed antidepressant, which have helped me cope. (They promise me that they are not addictive, but we shall see). I know that he would not respond to carers coming to wash and dress him but I have found a lovely lady who comes as a companion to him twice a week. She sits and talks to him and looks at books (pictures as he can’t read any more). He enjoys the attention and it gives me a couple of hours to myself. At other times, when he’s not asleep he craves my attention and I can’t do anything other than be with him.
What may be different from your situation is that he is 20 years older than me, and I have decided that I want to keep him at home with me until the end, if I possibly can. i don’t want to opt for a care home, but others have different circumstances and will need to use that option. Like everyone says, we didn’t volunteer for this, but we must make the best of a bad job! Whatever you do, don’t try to go it alone. Speak to your GP, Social Services/etc. Make a nuisance of yourself, don’t put on a brave face. They will help if they realise how bad you are feeling.

 

[Pots and Pans]

Thank you. Appreciate support. Would prefer to avoid care home if possible but yes, if turns out better for MH then am.orrosted to consider for sure ( looked at one good one in July last year as consultant on first visit said might.be necessary,,,). Very good initial reaction to Donepezil meant we could avoid - to the extent that live-in carers were replaced buns couple of day shifts then no one,). And we do have some ok times. He always gets up and brings me a coffee each morning ( usually drinkable too). But being on our own in this weird new world means that if things start to go wrong they spiral down quickly as there simply isn't any real distraction feasible... nor anyone else around and I really don't feel I handle it well then. Have seen compassionate communication info but very hard to think of this when ones OH is in a temper.
But any time I post is at the end of a bad day, not beginning, and OH usually forgotten if day before ended badly, do I kinda have to do the same and take it a day at a time.
Yes, can call GP if necessary but all they can probably offer us anti- depressants and I'm not ready for that yet. @Vitesse ,- like idea of companions. How did you find?

 

[jenniferjean]

Even if we got a carer in for a few hours, nowhere to go anyway in this Covid world. Sorry, but feeling really fed up.

I have a carer come and sit with my husband for 3 hours on a Tuesday morning so I can get out. But like you say - nowhere to go. I do go out and I walk around, sometimes go to the shop, anything just to get out on my own. It's not ideal, but it's my 'me' time.
My husband was against having anyone in at first, but I organised it anyway. In the beginning it was for 2 hours and was extended later. At first he complained to me that it wasn't necessary and he wasn't very cooperative. But I did it anyway and now he just accepts it. I think now it gives him someone else to talk to other than me.
You have to give yourself some 'me' time, you need to recharge your batteries. Tell him they are there to help you. Once someone is there to engage him in conversation (that's a very loose term), he may accept it.

 

[Kapow]

I am in the same position myself....there is no conversation,nothing....sometimes he will ask the same questions over and over again,usually about the weather,what day is it,time,etc.,His mood swings are quite worrying and he was prescribed something by his consultant,as he was behaving quite aggressively towards me.Like you,I never imagined this would be our lot,and the man I married has gone,and I feel as if I am just a housekeeper to him,and I can't let my mind wander back to happier days,as it's far too upsetting.Yes...there are days,many days,when I too feel at my wit's end and feel as if this is going to be my lot now,and like another poster,my husband is 20 years older than me,and I feel my life is being sacrificed to support him.I know that sounds awful,it's supposed to be in sickness and in health,but,sometimes it's just too much.

 

[None the Wiser]

know that sounds awful,it's supposed to be in sickness and in health,but,sometimes it's just too much.

That’s it exactly “sometimes it’s just too much”.

 

[Vitesse]

Thank you. Appreciate support. Would prefer to avoid care home if possible but yes, if turns out better for MH then am.orrosted to consider for sure ( looked at one good one in July last year as consultant on first visit said might.be necessary,,,). Very good initial reaction to Donepezil meant we could avoid - to the extent that live-in carers were replaced buns couple of day shifts then no one,). And we do have some ok times. He always gets up and brings me a coffee each morning ( usually drinkable too). But being on our own in this weird new world means that if things start to go wrong they spiral down quickly as there simply isn't any real distraction feasible... nor anyone else around and I really don't feel I handle it well then. Have seen compassionate communication info but very hard to think of this when ones OH is in a temper.
But any time I post is at the end of a bad day, not beginning, and OH usually forgotten if day before ended badly, do I kinda have to do the same and take it a day at a time.
Yes, can call GP if necessary but all they can probably offer us anti- depressants and I'm not ready for that yet. @Vitesse ,- like idea of companions. How did you find?

Our county council has a system called “support with confidence” where private carers can register their details. The Council checks them out fairly rigorously and then adds them to their list. I invited several to come to meet us before choosing one. Interestingly, I thought a man would be most suitable, but my husband didnt like any of them. This lady is very experienced in dealing with dementia and Parkinson’s, and he seems to have taken to her very well. (He does sometimes tell her to leave, but she takes it in her stride!)
it may be worth checking out what help your council can give to carers.

 

[None the Wiser]

@Vitesse I wonder if we live in the same part of. the country as I too have employed someone who really understands dementia as a companion/ Carer for my husband through ‘Support with Confidence’.

 

[Pots and Pans]

@Vitesse thanks for suggestion. Have only used private agencies till now... 'Support with Confidence' sounds great and I will need help if he deteriorates so I can't go out at all. Haven't really had anything to do with the council yet except supply of bed/wheelchair etc. And call to OT who basically said nothing doing till Covid cleared Maybe should get ball rolling with a care assessment at some point - haven't been offered one, probly cos we have funds so wouldn't get any money. I believe they do some hourly respite carers but had been happy with private agency I used. But sigh, costly. And rightly or wrongly trying to pay all care bills from OH funds ( I pay everything else and our finances always been separate). And he has to agree to pay for any carer therefore as does have capacity. Not such a bad day today though. Probably cos we didn't try and do anything so less opportunity for problems.

 

[Pots and Pans]

I am in the same position myself....there is no conversation,nothing....sometimes he will ask the same questions over and over again,usually about the weather,what day is it,time,etc.,His mood swings are quite worrying and he was prescribed something by his consultant,as he was behaving quite aggressively towards me.Like you,I never imagined this would be our lot,and the man I married has gone,and I feel as if I am just a housekeeper to him,and I can't let my mind wander back to happier days,as it's far too upsetting.Yes...there are days,many days,when I too feel at my wit's end and feel as if this is going to be my lot now,and like another poster,my husband is 20 years older than me,and I feel my life is being sacrificed to support him.I know that sounds awful,it's supposed to be in sickness and in health,but,sometimes it's just too much.

I think we feel the same! The guilt is horrid when I bubble with resentment. And yes, I took the same vows and want to honour them. Think I may actually feel worse too when Covid lockdowns eased as then everyone else will be going out and about again and I/we will be stuck indoors with the telly on. Fear I will feel more resentful then. But the man I love is still here. .. just so diminished. And your OH will still be in there too. We just have to learn this new way of living and it is much harder than I thought. This forum helps me now a lot as I don't have to put on my 'yes, we're fine' face here.

 

[jennifer1967]

you are entitled to a carer assessment as well

 

[jenniferjean]

And call to OT who basically said nothing doing till Covid cleared

We have a lady from OT coming here today to do a new assessment for my husband. It was our doctor who requested it.

 

[canary]

And yes, I took the same vows and want to honour them.

My OH (husband) has dementia and Id just like to point out that the vows we took didnt stipulate that we had to do everything all by ourselves with no help. They didnt even say that we had to live in the same building - just that we wouldnt abandon them. I am fully aware that at some time I will have to make a decision about residential care and when that happens Im sure I will feel guilt, but I will remind myself that I wont be abandoning him, I will still be his carer - just in a different way. Covid is making everything harder, but the restrictions wont last forever. Once they are lifted carers for people in residential homes can go back to being their advocate, their voice when they have none, the person who spots problems and the repository of their memories, telling them who they are.

You wont abandon him either - whatever happens. If he moves into a care home you may even find that he improves in that environment. Before mum went into her care home she thought I was doing terrible things, but once she settled that went away and I felt I had got my mum back.

 

[RAF Geoff]

Cleaners might work.. thanks.

Yes cleaners do work. We had one coming twice a week(pre lockdown) and my wife looked forward to each visit when they could chat together. It didn't matter if the cleaning got completed just to see her come alive for two hours twice a week was a tonic for us both. We text her during this lockdown and all look forward to a return to near normal.

 

[Vitesse]

@Vitesse I wonder if we live in the same part of. the country as I too have employed someone who really understands dementia as a companion/ Carer for my husband through ‘Support with Confidence’.

I’m in East Sussex, what about you?