When did it all start!

[CherryTT4]

Sorry but this is just a vent - no need to reply as I know a lot of us are in the same boat on choppy seas and in the fog!!!

I find it increasingly difficult to accept this is now my life. My husband has still not being diagnosed but its suspected Lewy Body Dementia. Where have we as a couple gone? Although there are delusions and hallucinations I'd thought there were times of clarity but now I'm not so sure. All the forgetting where things are is getting quite extreme and hours are spent trying to find things that should have not moved. Not remembering item that were bought by him and were personal to him just another indication of fading memory. Yesterday I had a bit of a melt down and was a bit mean to him - I asked him what made us a couple what was it about us that was special - it took a long time for a reply but finally he said he could not think of anything.

We've been together for over 30 years and its like living with a stranger. Reflecting back I think there were signs that this started a few years ago - maybe after he had a knee replacement as he suffered from some delirium then. You think you are growing apart and that they don't care for you as much as they did. However now I realise it was not a conscious decision its not growing apart but fading apart. If occasionally there was a glimmer of him it would help!

 

[nae sporran]

Not a lot to offer you, but empathy and hope you find some glimpses of happiness in the darkness of dementia, CherryTT4.

 

[Shedrech]

some days can feel so bleak @CherryTT4
at least you can come here and say it as it is: I hope that helped a little

 

[CherryTT4]

some days can feel so bleak @CherryTT4
at least you can come here and say it as it is: I hope that helped a little

Seems to be v bleak today. Just had row cos he got cross because the 'lady' had gone and I'd come back so late. He stormed off and said he'd not take his tablets and would sleep in the guest room. I got him to take his tablets, or not as left them with him. They are not dementia tablets so if he doesn't take them there will be no problem. And he's in our bed. I'm not an angel how can we live with this? He's normally a mild mannered man. I hate the aggression, we've always bantered but this is different. It the indifference and almost hate of me I find difficult to cope with. If it ever got violent it would destroy me. He is not a big man and I could defend myself but it is just never a road I thought I'd ever travel. I did do what we all know is wrong , I shouted and told him I'd been here with all evening. I only really lost it cos he was verbal to me and you hope that it may shock them back to reality. Oh well its going to be a long night.

 

[Mustang66]

What your going through is grieving.....for the man who no longer understands & the loss of what you had as a couple, it is so painful, as time went on I realised there is no point in arguing with someone who can no longer comprehend, this forum is so good, no need to feel isolated as everyone understands

 

[Shedrech]

morning @CherryTT4
I hope you got to rest last night

I am concerned at your mention of aggression ... please keep yourself safe ... back off and walk away rather than dicsuss or argue ... rather than ever say 'no' to anything your husband says, try 'yes and ....(adding whatever you want to say to him)'; that way he doesn't hear an immediate negative to react to, and you get to say what you want him to do

I hope you have a safe place to retreat to, with a bolt on the door and access to a phone (keep a mobile on you) and a route to outdoors, even a window will do

sad to suggest but do you have a spare room you can sleep in ... if your husband mentions this maybe say you had an awful cough (or any excuse) and didn't want to keep distrbing him

do let his GP know how he is as even without a diagnosis, there may be meds to help

sorry if this is OTT

 

[CherryTT4]

morning @CherryTT4
I hope you got to rest last night

I am concerned at your mention of aggression ... please keep yourself safe ... back off and walk away rather than dicsuss or argue ... rather than ever say 'no' to anything your husband says, try 'yes and ....(adding whatever you want to say to him)'; that way he doesn't hear an immediate negative to react to, and you get to say what you want him to do

I hope you have a safe place to retreat to, with a bolt on the door and access to a phone (keep a mobile on you) and a route to outdoors, even a window will do

sad to suggest but do you have a spare room you can sleep in ... if your husband mentions this maybe say you had an awful cough (or any excuse) and didn't want to keep distrbing him

do let his GP know how he is as even without a diagnosis, there may be meds to help

sorry if this is OTT

Thank you for your helpful advice.

 

[Wildflowerlady]

Seems to be v bleak today. Just had row cos he got cross because the 'lady' had gone and I'd come back so late. He stormed off and said he'd not take his tablets and would sleep in the guest room. I got him to take his tablets, or not as left them with him. They are not dementia tablets so if he doesn't take them there will be no problem. And he's in our bed. I'm not an angel how can we live with this? He's normally a mild mannered man. I hate the aggression, we've always bantered but this is different. It the indifference and almost hate of me I find difficult to cope with. If it ever got violent it would destroy me. He is not a big man and I could defend myself but it is just never a road I thought I'd ever travel. I did do what we all know is wrong , I shouted and told him I'd been here with all evening. I only really lost it cos he was verbal to me and you hope that it may shock them back to reality. Oh well its going to be a long night.

Hi @CherryTT4
I want to say I fully understand where you are coming from and it is worse for you than I.
I hate the aggression too although in my case it is from my dad, as I don't live with him I can get away from it in the physical sense but it is having some affect on my mental well being. I'm not necessarily frightened of dad and like you could defend myself but its the thought of what he might do and being put in that situation.
Dad can be quite verbally aggressive with his carers too when they are only there to help him he still lives at home alone with 4 x carer visits. I wonder how long it will be before he may be physically aggressive to them.
To be honest I am getting to the point I actually hate going to see dad doesn't that sound awful because I know he can't help it. I visit dad around 4-5 afternoons a week sometimes late afternoon so I think I am catching him at the worst time of day although he can give morning carers a hard time over getting dressed etc.
I have a partner with Parkinson's so I know that my future entails being more of his carer as it progresses which it has already started to do with falls etc.I already have to do a lot of stuff without his assistance and on a bad day he needs more help.
I dread my partner getting dementia which he will be at slightly higher risk of I don't think I could cope if that happens.
Sending a hug x

 

[Vic10]

Please share your concerns with your GP, if this behaviour is out of character he may well be able to help.

 

[Buntykins]

Seems to be v bleak today. Just had row cos he got cross because the 'lady' had gone and I'd come back so late. He stormed off and said he'd not take his tablets and would sleep in the guest room. I got him to take his tablets, or not as left them with him. They are not dementia tablets so if he doesn't take them there will be no problem. And he's in our bed. I'm not an angel how can we live with this? He's normally a mild mannered man. I hate the aggression, we've always bantered but this is different. It the indifference and almost hate of me I find difficult to cope with. If it ever got violent it would destroy me. He is not a big man and I could defend myself but it is just never a road I thought I'd ever travel. I did do what we all know is wrong , I shouted and told him I'd been here with all evening. I only really lost it cos he was verbal to me and you hope that it may shock them back to reality. Oh well its going to be a long night.

 

[Buntykins]

I do understand how hurtful it can be, but over the years I have learned to remain very calm. It isn't always easy but after years of experience it really does help. He cannot help it and in his place you would feel lost and frustrated. All very sad and although my husband doesn't know who I am - he does now respond calmly which makes life easier.

 

[CherryTT4]

Hi @CherryTT4
I want to say I fully understand where you are coming from and it is worse for you than I.
I hate the aggression too although in my case it is from my dad, as I don't live with him I can get away from it in the physical sense but it is having some affect on my mental well being. I'm not necessarily frightened of dad and like you could defend myself but its the thought of what he might do and being put in that situation.
Dad can be quite verbally aggressive with his carers too when they are only there to help him he still lives at home alone with 4 x carer visits. I wonder how long it will be before he may be physically aggressive to them.
To be honest I am getting to the point I actually hate going to see dad doesn't that sound awful because I know he can't help it. I visit dad around 4-5 afternoons a week sometimes late afternoon so I think I am catching him at the worst time of day although he can give morning carers a hard time over getting dressed etc.
I have a partner with Parkinson's so I know that my future entails being more of his carer as it progresses which it has already started to do with falls etc.I already have to do a lot of stuff without his assistance and on a bad day he needs more help.
I dread my partner getting dementia which he will be at slightly higher risk of I don't think I could cope if that happens.
Sending a hug x

Thank you and sending you a hug too x

 

[CherryTT4]

I do understand how hurtful it can be, but over the years I have learned to remain very calm. It isn't always easy but after years of experience it really does help. He cannot help it and in his place you would feel lost and frustrated. All very sad and although my husband doesn't know who I am - he does now respond calmly which makes life easier.

When he doesn't know my it is not so hard - the problem time is when I 'come back' and he's getting more cross every time. I am assuming that in the end I will never re appear?

Thank you for your reply

 

[Vitesse]

When he doesn't know my it is not so hard - the problem time is when I 'come back' and he's getting more cross every time. I am assuming that in the end I will never re appear?

Thank you for your reply

My husband got very cross with me because me thought I was syphoning off his money!! It was a tirade day after day, and n9 amount of explaining to the truth to him had any effect. Experts said to distract him, walk away, go into another room etc etc. Nothing worked, he would start again as soon as I went back into him. Then he announced one day that his wife (me) had gone. I had to listen to him tell me she had taken his money, but now it was in the third person and somehow that was easier for me!! Don’t ask me why, but I have coped with that better, now he tells me his wife has died!!! I don’t quite know how I fit in his fantasy world, but we are having much nicer days, and he is calmer. (With the help of Risperidone I may add!)
Unfortunately, it’s part of the disease and we seem to have to learn ways to cope, however unfair and daunting that may be.
Chin up, Make the best of the good days!

 

[White Rose]

Sorry but this is just a vent - no need to reply as I know a lot of us are in the same boat on choppy seas and in the fog!!!

I find it increasingly difficult to accept this is now my life. My husband has still not being diagnosed but its suspected Lewy Body Dementia. Where have we as a couple gone? Although there are delusions and hallucinations I'd thought there were times of clarity but now I'm not so sure. All the forgetting where things are is getting quite extreme and hours are spent trying to find things that should have not moved. Not remembering item that were bought by him and were personal to him just another indication of fading memory. Yesterday I had a bit of a melt down and was a bit mean to him - I asked him what made us a couple what was it about us that was special - it took a long time for a reply but finally he said he could not think of anything.

We've been together for over 30 years and its like living with a stranger. Reflecting back I think there were signs that this started a few years ago - maybe after he had a knee replacement as he suffered from some delirium then. You think you are growing apart and that they don't care for you as much as they did. However now I realise it was not a conscious decision its not growing apart but fading apart. If occasionally there was a glimmer of him it would help!

It's a place so many of us have been in, we grieve for the person they once were, we have to adapt to the person they've become, a person that we may not like very much but we still have to care for them. One thing I've learned is that if I get angry with my partner he will just get more angry and uncooperative, getting angry makes the situation worse. Now I take a deep breath, try to stay calm or just walk out of the room and leave him to rant. He used to come and apologise for his behaviour but less so as the disease progresses. Why hasn't your husband been diagnosed, I would have thought he needs to be 'in the system', including getting the attendance allowance when applicable. Vent away on the Forum, it does help knowing other people understand what you're going through.

 

[CherryTT4]

It's a place so many of us have been in, we grieve for the person they once were, we have to adapt to the person they've become, a person that we may not like very much but we still have to care for them. One thing I've learned is that if I get angry with my partner he will just get more angry and uncooperative, getting angry makes the situation worse. Now I take a deep breath, try to stay calm or just walk out of the room and leave him to rant. He used to come and apologise for his behaviour but less so as the disease progresses. Why hasn't your husband been diagnosed, I would have thought he needs to be 'in the system', including getting the attendance allowance when applicable. Vent away on the Forum, it does help knowing other people understand what you're going through.

Thank you for your reply. A much quieter night. He's had a brain scan and now we are waiting for an ECG - which it next week - before he can be referred to the Memory Clinic. I'm also waiting for the LPA's to be completed.

 

[White Rose]

Thank you for your reply. A much quieter night. He's had a brain scan and now we are waiting for an ECG - which it next week - before he can be referred to the Memory Clinic. I'm also waiting for the LPA's to be completed.

That's good, sounds like you've got it covered, better to get a proper diagnosis even though it can be earth shattering when you finally know. Good luck