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No light at the end of a dark tunnel

Joolie58

Registered User
Jul 12, 2017
38
My husband finally got his diagnosis of Lewy Body Dementia in April of this year after two years of going and froing with medical appointments . His deterioration has been rapid and there have been many tough times over the last three years . At present his mood is very low and today after having a shouting fit at me he fell into a deep mood crying and telling me he was fed up of taking tablets that he would have to take for the rest of his life and they didn’t make any difference .He said he just wanted to turn the clocks and years back to a time when he didn’t have dementia , he just wanted to feel normal to be able to get up , think clearly , go out and do all the things normal men did . Instead he was a prisoner in the house because his head wouldn’t let him just get on with life it was permanently under a cloud .... there was no more sunshine in his life . I tried to explain that I was trying to help him to see there was life left to live and I would have hoped that I brought some sunshine into his life . He said I mean something but he’s not sure what but it’s not sunshine . (Having a virtual knife stuck straight in my heart is becoming common but non the less hurtful ) . I don’t know how to answer his questions , he will only get out of bed if he has somewhere to go and then generally gets up just in time to go . The rest of the time he spends in bed saying he doesn’t feel right downstairs . I’ve tried and keep trying anything and everything I can think of to help him and keep him motivated but I’m failing miserably . Can anyone give me any OR George any advice .... feeling so incredibly sad
 

Manc70

Registered User
May 30, 2018
119
S. Yorkshire
My husband finally got his diagnosis of Lewy Body Dementia in April of this year after two years of going and froing with medical appointments . His deterioration has been rapid and there have been many tough times over the last three years . At present his mood is very low and today after having a shouting fit at me he fell into a deep mood crying and telling me he was fed up of taking tablets that he would have to take for the rest of his life and they didn’t make any difference .He said he just wanted to turn the clocks and years back to a time when he didn’t have dementia , he just wanted to feel normal to be able to get up , think clearly , go out and do all the things normal men did . Instead he was a prisoner in the house because his head wouldn’t let him just get on with life it was permanently under a cloud .... there was no more sunshine in his life . I tried to explain that I was trying to help him to see there was life left to live and I would have hoped that I brought some sunshine into his life . He said I mean something but he’s not sure what but it’s not sunshine . (Having a virtual knife stuck straight in my heart is becoming common but non the less hurtful ) . I don’t know how to answer his questions , he will only get out of bed if he has somewhere to go and then generally gets up just in time to go . The rest of the time he spends in bed saying he doesn’t feel right downstairs . I’ve tried and keep trying anything and everything I can think of to help him and keep him motivated but I’m failing miserably . Can anyone give me any OR George any advice .... feeling so incredibly sad
I am so sorry for the situation you are in and my thoughts are with you. You are right, it is so very sad. My husband was diagnosed with Alzheimer’s earlier this year and the neurologist said almost as a throw away comment that it’s probably Lewy Bodies. There is so much in your post I can identify with especially regarding how my husband feels. Yesterday I had to try and talk him round from a deep depression (not for the first time) saying he wasn’t the man he was, his brain isn’t working and he’s no good for anybody and there is nothing in his life anymore and being petrified of the future. As you say it’s like a knife through your heart, I spoke about the love we have and the kids and grandkids but he feels we will be better off without him. I will add he did come round a bit but I felt emotionally exhausted. I still don’t know if he has LBD, at times when I read about it I can tick all the boxes re his symptoms then other times he doesn’t seem as bad - although he has had increasing doses of Rivastigmine which I think has helped, especially with his aggression. He still has hallucinations but not as bad as they were, there have been spiders, slugs rats etc in the bed and bedroom, on the walls, coming down from the ceiling, once he was so sure I found myself getting up to check!, water cascading through the door and down the stairs, people stood at the bedroom door or outside looking in, also his hearing is very very sensitive, thinking people are outside or has to check the rooms in the bungalow because he’s heard something.
He has a problem telling the time, has stopped reading books, forgot how to do his signature the other day - so so many things - but he can have a fair discussion about Brexit or the news and loves having a good moan about the idiot Trump. Can’t follow a drama series. It’s all so confusing and I don’t know whether we will benefit or not by knowing the type of Alzheimer’s he does have. He doesn’t know my 70th is coming up (no matter how many times I remind him!) or that we have been married 47 years but can comment on a problem our daughter asked about last week.
I’m sorry I’m not being much help to your question about any advice but just want you to know I feel for you and you are not alone. . We are coping at the moment (again I think the meds have helped), the days when we manage to do something outside the home are better but he then sleeps for hours.
I have seen online that LBD have a helpline and wonder if they will be of help to you.
Please take good care of yourself, I hope you have some support from family or friends. Xxx
 
Last edited by a moderator:

karaokePete

Registered User
Jul 23, 2017
5,262
N Ireland
Hello @Joolie58, don't underestimate the effect that apathy, depression and anxiety can have in dementia. These conditions are commonly found in people with dementia. My wife is medicated for depression and anxiety as well as her Alzheimer's and it does help, although not a cure.

There is a Society Factsheet about this and you can read it by clicking the PDF line of the following link
Apathy, depression and anxiety (444)
PDF printable version

I find that dealing with these issues is one of the most difficult aspects of my caring for my wife as constant repeated reassurance is required.
 

Joolie58

Registered User
Jul 12, 2017
38
Hi Manc70, I can’t thank you enough for your reply , for the first time (unlike the many times I’ve tried to talk to medical professionals ) I was reading words written by someone who was describing my life exactly and I feel for you too because I related to everything you are having to go through . I’ve had the “I’m useless, I’m not a man any more , and you would be better off without me “ conversations too many times . You describing how bad thinks can seem at times and then the next day things can seem so much better is so typical of Lewy Body and had me very confused when the first symptoms started to appear because he was like Jekyll and Hide but after his diagnosis it was one of the boxes to tick . He was started on Rivastigmine but it didn’t suit him so he’s now on Donepazil and takes quetiapine for his hallucinations and voices which like your husbands have been awful and to him all to real His sleep quality is very poor as he has REM Sleep through the night but can sleep the whole day as well . I’ve known him to sleep 22 hours out of 24 ! I really hope you get to celebrate your 70th in a lovely way treats are all to rare but special days need to be marked xx I do have friends and family but they don’t see the half of it and 24 hours on your own can be never ending ... but bless you , you have just lifted this 24 hours for me . Take care and I’m always here to listen too .. thanks Julie x
 

Sad Staffs

Registered User
Jun 26, 2018
677
My husband finally got his diagnosis of Lewy Body Dementia in April of this year after two years of going and froing with medical appointments . His deterioration has been rapid and there have been many tough times over the last three years . At present his mood is very low and today after having a shouting fit at me he fell into a deep mood crying and telling me he was fed up of taking tablets that he would have to take for the rest of his life and they didn’t make any difference .He said he just wanted to turn the clocks and years back to a time when he didn’t have dementia , he just wanted to feel normal to be able to get up , think clearly , go out and do all the things normal men did . Instead he was a prisoner in the house because his head wouldn’t let him just get on with life it was permanently under a cloud .... there was no more sunshine in his life . I tried to explain that I was trying to help him to see there was life left to live and I would have hoped that I brought some sunshine into his life . He said I mean something but he’s not sure what but it’s not sunshine . (Having a virtual knife stuck straight in my heart is becoming common but non the less hurtful ) . I don’t know how to answer his questions , he will only get out of bed if he has somewhere to go and then generally gets up just in time to go . The rest of the time he spends in bed saying he doesn’t feel right downstairs . I’ve tried and keep trying anything and everything I can think of to help him and keep him motivated but I’m failing miserably . Can anyone give me any OR George any advice .... feeling so incredibly sad
Hi Julie
I understand all you are going through, and @Manc70 comments are really interesting, supportive and informative.
The one difference for me is that I don’t think my husband really believes he has dementia. He talks about it, I don’t hide it when talking to others, but I don’t think he sees it as real, or perhaps it’s not him?

My husbands dementia has confused me. He too will talk about Trump, Brexit, other items on the news, but then I have to tell him to pull his pants down to sit on loo. He stopped reading books, he starts them, then I think he can’t keep up with the characters or the plot. He won’t answer the house phone as I don’t think he can work out the buttons. And when his mobile rings, he just looks at it and I have to say answer it, by which time it’s cut off!

In truth his only interest is me, and he is obsessive about me. A bit like a puppy following me around. It drives me mad that he never gives me any space. I turn around and he is there checking where I am all the time. If I’m not with him he just sits staring out of the window. It’s soul destroying for us both.

It must be very distressing for you as your husband is so upset. They can’t medicate my husbands dementia because he has stents in his kidneys, but he does take Mirtazapine and they recently increased his dose. That made a massive difference at night. He takes his tablet at 9.45, then bed at 10 when I have to put his incontinent pads, booster pads, and pull up pants over the top. I get him into bed and sometimes we have good nights.

I wish I had some useful advice for you, but I have no idea how to motivate my husband. He just has no interest, he is obsessive, aggressive which is instant, shocking and really upsets me. When he frightens me I react, shout back at him, knowing it’s the wrong thing, but I feel so sad that the man that has cherished me, cared for me, and loved me unconditionally, now appears to think so little of me. It’s so distressing .

I do feel for you, and send my love. Talking Point has been a life line for me. Please keep in touch. It doesn’t matter on here what you say, someone will understand, someone will care, someone will offer you support.
Take care, love B xx
 

Martarita

Registered User
May 11, 2018
112
Hi joolie , I'm so sorry to hear what your going through,my OH went through something very similar to what you've described,when first diagnosed he didn't understand what was going on ,he was very anxious all the time especially early evening his anxiety got really bad at that time of day he didn't know what he wanted ,I would sit very close to him holding his hand trying to reassure him, it was so hard and very upsetting he'd be crying and wanting to go to bed or to go out walking which we did for a while but it really takes it out of you I was crying a lot didn't know what to do for him ,so I made an appointment to see the doctor ,he was really understanding he prescribed antidepressants which after about 3 to 4 weeks started to work and he's been on them ever since they really did help maybe going to the doctors is something for you to think about ,I really know how you're feeling take care hope it soon gets better for you and your OH .xx
 

maryjoan

Registered User
Mar 25, 2017
1,399
South of the Border
Hi Julie
I understand all you are going through, and @Manc70 comments are really interesting, supportive and informative.
The one difference for me is that I don’t think my husband really believes he has dementia. He talks about it, I don’t hide it when talking to others, but I don’t think he sees it as real, or perhaps it’s not him?

My husbands dementia has confused me. He too will talk about Trump, Brexit, other items on the news, but then I have to tell him to pull his pants down to sit on loo. He stopped reading books, he starts them, then I think he can’t keep up with the characters or the plot. He won’t answer the house phone as I don’t think he can work out the buttons. And when his mobile rings, he just looks at it and I have to say answer it, by which time it’s cut off!

In truth his only interest is me, and he is obsessive about me. A bit like a puppy following me around. It drives me mad that he never gives me any space. I turn around and he is there checking where I am all the time. If I’m not with him he just sits staring out of the window. It’s soul destroying for us both.

It must be very distressing for you as your husband is so upset. They can’t medicate my husbands dementia because he has stents in his kidneys, but he does take Mirtazapine and they recently increased his dose. That made a massive difference at night. He takes his tablet at 9.45, then bed at 10 when I have to put his incontinent pads, booster pads, and pull up pants over the top. I get him into bed and sometimes we have good nights.

I wish I had some useful advice for you, but I have no idea how to motivate my husband. He just has no interest, he is obsessive, aggressive which is instant, shocking and really upsets me. When he frightens me I react, shout back at him, knowing it’s the wrong thing, but I feel so sad that the man that has cherished me, cared for me, and loved me unconditionally, now appears to think so little of me. It’s so distressing .

I do feel for you, and send my love. Talking Point has been a life line for me. Please keep in touch. It doesn’t matter on here what you say, someone will understand, someone will care, someone will offer you support.
Take care, love B xx[/QUOTE

it is not him, it looks like him, but it is this wicked awful disease. Remember the man he was, because that is who he is, not this person you live with now. Nurture him, care for him, as you do, but it is simply not the man you fell in love with - that is the only way I can look at this - others may have different or better ideas.
 

Grahamstown

Registered User
Jan 12, 2018
1,636
East of England
To be honest I don’t think rational conversation works very well with my husband, I have learned over the time he has been ill, to try and give him the answer he wants, which is quite often just saying um or yes or even nothing and it usually works, because he has forgotten so quickly. If I try answering as if he is rational it deteriorates rapidly as I go round in circles and I get frustrated and think surely he isn’t as bad as this. That is the worst of it, thinking that he will be his old self but knowing he won’t. It is very much like a relationship with a four-five year old child, with no prospect of improvement, just getting worse. I am used to it now but it still upsets me when we meet friends or acquaintances and he stands up straight, smiles his old smile and says how well he is. Often the conversation is about the past so he can cope with that. He relapses so quickly once we are alone. Host mode is the very devil for partners, but can’t be maintained long. He too is doing so little it’s frightening, sleeping a lot and getting less inclined to have any exercise, but I cannot worry about that because I have too much to do for us as it is.
 

kindred

Registered User
Apr 8, 2018
2,360
My husband finally got his diagnosis of Lewy Body Dementia in April of this year after two years of going and froing with medical appointments . His deterioration has been rapid and there have been many tough times over the last three years . At present his mood is very low and today after having a shouting fit at me he fell into a deep mood crying and telling me he was fed up of taking tablets that he would have to take for the rest of his life and they didn’t make any difference .He said he just wanted to turn the clocks and years back to a time when he didn’t have dementia , he just wanted to feel normal to be able to get up , think clearly , go out and do all the things normal men did . Instead he was a prisoner in the house because his head wouldn’t let him just get on with life it was permanently under a cloud .... there was no more sunshine in his life . I tried to explain that I was trying to help him to see there was life left to live and I would have hoped that I brought some sunshine into his life . He said I mean something but he’s not sure what but it’s not sunshine . (Having a virtual knife stuck straight in my heart is becoming common but non the less hurtful ) . I don’t know how to answer his questions , he will only get out of bed if he has somewhere to go and then generally gets up just in time to go . The rest of the time he spends in bed saying he doesn’t feel right downstairs . I’ve tried and keep trying anything and everything I can think of to help him and keep him motivated but I’m failing miserably . Can anyone give me any OR George any advice .... feeling so incredibly sad
My husband spent a lot of time in bed, not feeling right downstairs, sweetheart. I do understand. I moved my centre of operations up there, read paper up there alongside him etc. Then after about a year of this, one day he came downstairs and said simply
I don't want to be alone any more.
So he lived downstairs after that.
something happened, I'll never know what, but this mood may not be for ever and sometimes, yes, antidepressants are really helpful.
with love, Geraldine
 

Manc70

Registered User
May 30, 2018
119
S. Yorkshire
Hi Manc70, I can’t thank you enough for your reply , for the first time (unlike the many times I’ve tried to talk to medical professionals ) I was reading words written by someone who was describing my life exactly and I feel for you too because I related to everything you are having to go through . I’ve had the “I’m useless, I’m not a man any more , and you would be better off without me “ conversations too many times . You describing how bad thinks can seem at times and then the next day things can seem so much better is so typical of Lewy Body and had me very confused when the first symptoms started to appear because he was like Jekyll and Hide but after his diagnosis it was one of the boxes to tick . He was started on Rivastigmine but it didn’t suit him so he’s now on Donepazil and takes quetiapine for his hallucinations and voices which like your husbands have been awful and to him all to real His sleep quality is very poor as he has REM Sleep through the night but can sleep the whole day as well . I’ve known him to sleep 22 hours out of 24 ! I really hope you get to celebrate your 70th in a lovely way treats are all to rare but special days need to be marked xx I do have friends and family but they don’t see the half of it and 24 hours on your own can be never ending ... but bless you , you have just lifted this 24 hours for me . Take care and I’m always here to listen too .. thanks Julie x
Hi Julie, that’s such a lovely generous reply to my post, thank you x You helped me get things in perspective a bit especially saying about the Jekyll and Hyde behaviour, my husband jumps from deep depression to almost euphoria in minutes and I don’t know which is the more tiring for me. I’m lucky enough to have supportive friends and family but they really don’t know the half of what life is truly like, he can act almost like his ‘normal’ self for short periods and I suppose I protect our kids and grandkids to a certain extent as they have their lives to get on with. He did go into hospital for a three night sleep study but would you believe had 3 good nights sleep - mind you so did I!! May I ask you if diagnosing LBD involved an MRI scan or if other tests were involved (please ignore if I am encroaching on your privacy) - I’m not sure why the neurologist isn’t giving us a definite diagnosis, maybe he will when we see him in January. I omitted to mention that he is on Citalopram for his depression which I think made a big difference to his more aggressive moods.
Regarding my 70th, it was going to be family going out for a meal but a couple of weeks ago I decided what the hell, to just go for it and hired our village hall, a DJ, a bar and a hog roast (our local butcher is going to do hot pork and beef sandwiches if the weather looks too bad), lots of cakes, daughters are going to decorate the hall and 70ish people invited (again depends on the weather as some travelling over the Pennines in the middle of December). Plus our lovely son has said he will take responsibility for his dad who we expect will want to leave after an hour or so - he will come back home with him and stay if need be, I can’t believe all will go well but fingers crossed.
Although I don’t wish this life on anyone else it is a comfort to know I am not alone and the wonderful people on TP are so supportive even when having such difficult times themselves. Please take care, thinking of you S xx
 

Manc70

Registered User
May 30, 2018
119
S. Yorkshire
Hi Julie
I understand all you are going through, and @Manc70 comments are really interesting, supportive and informative.
The one difference for me is that I don’t think my husband really believes he has dementia. He talks about it, I don’t hide it when talking to others, but I don’t think he sees it as real, or perhaps it’s not him?

My husbands dementia has confused me. He too will talk about Trump, Brexit, other items on the news, but then I have to tell him to pull his pants down to sit on loo. He stopped reading books, he starts them, then I think he can’t keep up with the characters or the plot. He won’t answer the house phone as I don’t think he can work out the buttons. And when his mobile rings, he just looks at it and I have to say answer it, by which time it’s cut off!

In truth his only interest is me, and he is obsessive about me. A bit like a puppy following me around. It drives me mad that he never gives me any space. I turn around and he is there checking where I am all the time. If I’m not with him he just sits staring out of the window. It’s soul destroying for us both.

It must be very distressing for you as your husband is so upset. They can’t medicate my husbands dementia because he has stents in his kidneys, but he does take Mirtazapine and they recently increased his dose. That made a massive difference at night. He takes his tablet at 9.45, then bed at 10 when I have to put his incontinent pads, booster pads, and pull up pants over the top. I get him into bed and sometimes we have good nights.

I wish I had some useful advice for you, but I have no idea how to motivate my husband. He just has no interest, he is obsessive, aggressive which is instant, shocking and really upsets me. When he frightens me I react, shout back at him, knowing it’s the wrong thing, but I feel so sad that the man that has cherished me, cared for me, and loved me unconditionally, now appears to think so little of me. It’s so distressing .

I do feel for you, and send my love. Talking Point has been a life line for me. Please keep in touch. It doesn’t matter on here what you say, someone will understand, someone will care, someone will offer you support.
Take care, love B xx
Hi B, I find your posts really interesting and there is always something that makes me want to shout yes yes it’s just like that. You say your husband is obsessed with you and mine is the same - he was always loving (that isn’t to say we haven’t had our ups and downs) but now I can’t turn round without him being there, sometimes when I come out of the bathroom he’s stood there, can’t have an early night for a read or a lie in - we go to bed together, get up together, it’s suffocating me - but then I wonder is it going to change and I should be enjoying this togetherness while I can. Mind you I feel as though I contradict myself because some days he’s a real a.... to me, talk about confused.com.
I’ve been thinking about you getting ready for next week, I expect the waiting is the hardest part and although not easy will be better when you actually start the process. I’m sure you will dread being without your husband but I hope you are going to enjoy, if that’s the right word, some ‘you’ time while you recover, read a book, watch your favourite programmes, just rest and sleep when you want, get your strength back. He will be looked after and survive and be back with you before you know it.
I’ve found the perfect place for us to have our coffee and cake one of these days. It is a lovely retro cafe in the Yorkshire countryside with china cups, saucers and teapots, none of them matching, cake to die for, they even provide a box to take home what you don’t manage to eat, the slice is so big. There are classic cars to look at and a shop full of fabulous clothes, dresses 50s style with tiny waists and flared(?) skirts, shame my waist went AWOL years ago. We will plan our world cruise along with other friends on TP.
Anyway B, I shall be thinking about you next week. Take care, sending much love and best wishes S xxx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi B, I find your posts really interesting and there is always something that makes me want to shout yes yes it’s just like that. You say your husband is obsessed with you and mine is the same - he was always loving (that isn’t to say we haven’t had our ups and downs) but now I can’t turn round without him being there, sometimes when I come out of the bathroom he’s stood there, can’t have an early night for a read or a lie in - we go to bed together, get up together, it’s suffocating me - but then I wonder is it going to change and I should be enjoying this togetherness while I can. Mind you I feel as though I contradict myself because some days he’s a real a.... to me, talk about confused.com.
I’ve been thinking about you getting ready for next week, I expect the waiting is the hardest part and although not easy will be better when you actually start the process. I’m sure you will dread being without your husband but I hope you are going to enjoy, if that’s the right word, some ‘you’ time while you recover, read a book, watch your favourite programmes, just rest and sleep when you want, get your strength back. He will be looked after and survive and be back with you before you know it.
I’ve found the perfect place for us to have our coffee and cake one of these days. It is a lovely retro cafe in the Yorkshire countryside with china cups, saucers and teapots, none of them matching, cake to die for, they even provide a box to take home what you don’t manage to eat, the slice is so big. There are classic cars to look at and a shop full of fabulous clothes, dresses 50s style with tiny waists and flared(?) skirts, shame my waist went AWOL years ago. We will plan our world cruise along with other friends on TP.
Anyway B, I shall be thinking about you next week. Take care, sending much love and best wishes S xxx
Evening S, I was just writing to you, so I deleted it all and started again. I sometimes wish I could do that with my life! But I’m sure I would do it all over again. There is one thing I would do, and that is make sure we spent any savings on fab holidays, so social care had to pay something. It gets me so angry that you work, save for a rainy day, and we are penalised. Oh dear... on my high horse again.
I love that you have found the perfect place for our coffee and cake. It sounds wonderful and very interesting. China cups, odd saucers, cake to die for (I doubt I will need the box, pig that I am). The shops sound fab, not that I would get into them either. And we can dream/plan our cruise.... one day, yes, one day.
Wow, your 70th birthday party sounds brilliant. I am so pleased you are doing that. I hope your plans run smoothly and I look forward to hearing all about it.
I’ve been busy today writing down all the notes for the care home, and how I care for my husband. Especially how to deal with his incontinence. I wrote it and felt so dreadfully upset for him, it’s so degrading. It’s bad enough that I have to do such personal things for him, but the fact that different people, strangers, will be doing it really breaks my heart. He has always been such a private proud man.
What is worse is that I can now control his constant peeing and keep him dry. Trying to explain how I do that is difficult for him, for me, and for them. I don’t know whether he will get upset, distressed or aggressive if what they do doesn’t work for him how he wants it. I know it’s what they do....
He has never had a lot of patience, he is now devoid of patience! Gets very angry, very quickly, but usually it’s gone as quick as it arrives, although we do have the occasional sulky days!
I’ve given no thought to my operation, perhaps that is a good thing? It will be so strange, hard, for me to come home with my two cousins, who will then go home and then I will have nearly two weeks on my own. It should sound good, I should be looking forward to the space I’ve yearned for, but it’s not right. He should be there looking after me, but he will never be able to do that again.
Oh dear, now I’m stupidly upsetting myself again. I need that coffee and cake with you S.... I’ll have to make do with a tramadol and hot water bottle!
Thanks for your lovely message. I will let you know how I get on.
It’s always really good to talk to you.
With love, take care of yourself, and good luck with the planning for your special birthday. Barbara xx
 

Manc70

Registered User
May 30, 2018
119
S. Yorkshire
Evening S, I was just writing to you, so I deleted it all and started again. I sometimes wish I could do that with my life! But I’m sure I would do it all over again. There is one thing I would do, and that is make sure we spent any savings on fab holidays, so social care had to pay something. It gets me so angry that you work, save for a rainy day, and we are penalised. Oh dear... on my high horse again.
I love that you have found the perfect place for our coffee and cake. It sounds wonderful and very interesting. China cups, odd saucers, cake to die for (I doubt I will need the box, pig that I am). The shops sound fab, not that I would get into them either. And we can dream/plan our cruise.... one day, yes, one day.
Wow, your 70th birthday party sounds brilliant. I am so pleased you are doing that. I hope your plans run smoothly and I look forward to hearing all about it.
I’ve been busy today writing down all the notes for the care home, and how I care for my husband. Especially how to deal with his incontinence. I wrote it and felt so dreadfully upset for him, it’s so degrading. It’s bad enough that I have to do such personal things for him, but the fact that different people, strangers, will be doing it really breaks my heart. He has always been such a private proud man.
What is worse is that I can now control his constant peeing and keep him dry. Trying to explain how I do that is difficult for him, for me, and for them. I don’t know whether he will get upset, distressed or aggressive if what they do doesn’t work for him how he wants it. I know it’s what they do....
He has never had a lot of patience, he is now devoid of patience! Gets very angry, very quickly, but usually it’s gone as quick as it arrives, although we do have the occasional sulky days!
I’ve given no thought to my operation, perhaps that is a good thing? It will be so strange, hard, for me to come home with my two cousins, who will then go home and then I will have nearly two weeks on my own. It should sound good, I should be looking forward to the space I’ve yearned for, but it’s not right. He should be there looking after me, but he will never be able to do that again.
Oh dear, now I’m stupidly upsetting myself again. I need that coffee and cake with you S.... I’ll have to make do with a tramadol and hot water bottle!
Thanks for your lovely message. I will let you know how I get on.
It’s always really good to talk to you.
With love, take care of yourself, and good luck with the planning for your special birthday. Barbara xx
Hi Barbara, I just had to send a reply. My heart breaks for you worrying about your husband. I know we have a moan about them, we have to let it out sometimes, but I do understand you being so very upset for him, of course you will be, our hearts break for our proud, strong men who never in a million years would have thought this would happen to them. We can say what we like but we are still very protective of them - I can’t bear it if, and it has happened, I mention something strange he has done and the person (friend?) thinks it’s funny. I hope I didn’t sound flippant about you having time to yourself when you home from hospital - I know it will be difficult, your emotions may be all over the place - be sure I’m here for you, and you have lots of friends on here routing for you. I’m also sending best wishes to your husband for his stay in the care home.
Don’t get me started on the unfairness of working hard and saving etc........ it does make you think. We have AA and now have a reduced council tax but I don’t have a clue about social workers etc, I suppose you learn things as you go along we never thought we would need. Oh well I will shut up now. Once again take care, with love Shirley xx
 

Sad Staffs

Registered User
Jun 26, 2018
677
Hi Barbara, I just had to send a reply. My heart breaks for you worrying about your husband. I know we have a moan about them, we have to let it out sometimes, but I do understand you being so very upset for him, of course you will be, our hearts break for our proud, strong men who never in a million years would have thought this would happen to them. We can say what we like but we are still very protective of them - I can’t bear it if, and it has happened, I mention something strange he has done and the person (friend?) thinks it’s funny. I hope I didn’t sound flippant about you having time to yourself when you home from hospital - I know it will be difficult, your emotions may be all over the place - be sure I’m here for you, and you have lots of friends on here routing for you. I’m also sending best wishes to your husband for his stay in the care home.
Don’t get me started on the unfairness of working hard and saving etc........ it does make you think. We have AA and now have a reduced council tax but I don’t have a clue about social workers etc, I suppose you learn things as you go along we never thought we would need. Oh well I will shut up now. Once again take care, with love Shirley xx
Oh, Shirley, thank you. I would never think you flippant.
I’m just so grateful you are there, and I can talk to you. And I have coffee, cake and cruise to mull over, in my dreams anyway...!!
I’m getting his clothes together and putting his name in them. I’m sure there will be battles doing this. I’m trying to be practical and they will be clothes he won’t want to wear. Oh well, that’s for later.
I look forward to talking to you, or moaning more like, before I go into hospital...
With love and thinking of you, Barbara xx
 

Christine 47

Registered User
May 26, 2017
19
I am so sorry for the situation you are in and my thoughts are with you. You are right, it is so very sad. My husband was diagnosed with Alzheimer’s earlier this year and the neurologist said almost as a throw away comment that it’s probably Lewy Bodies. There is so much in your post I can identify with especially regarding how my husband feels. Yesterday I had to try and talk him round from a deep depression (not for the first time) saying he wasn’t the man he was, his brain isn’t working and he’s no good for anybody and there is nothing in his life anymore and being petrified of the future. As you say it’s like a knife through your heart, I spoke about the love we have and the kids and grandkids but he feels we will be better off without him. I will add he did come round a bit but I felt emotionally exhausted. I still don’t know if he has LBD, at times when I read about it I can tick all the boxes re his symptoms then other times he doesn’t seem as bad - although he has had increasing doses of Rivastigmine which I think has helped, especially with his aggression. He still has hallucinations but not as bad as they were, there have been spiders, slugs rats etc in the bed and bedroom, on the walls, coming down from the ceiling, once he was so sure I found myself getting up to check!, water cascading through the door and down the stairs, people stood at the bedroom door or outside looking in, also his hearing is very very sensitive, thinking people are outside or has to check the rooms in the bungalow because he’s heard something.
He has a problem telling the time, has stopped reading books, forgot how to do his signature the other day - so so many things - but he can have a fair discussion about Brexit or the news and loves having a good moan about the idiot Trump. Can’t follow a drama series. It’s all so confusing and I don’t know whether we will benefit or not by knowing the type of Alzheimer’s he does have. He doesn’t know my 70th is coming up (no matter how many times I remind him!) or that we have been married 47 years but can comment on a problem our daughter asked about last week.
I’m sorry I’m not being much help to your question about any advice but just want you to know I feel for you and you are not alone. . We are coping at the moment (again I think the meds have helped), the days when we manage to do something outside the home are better but he then sleeps for hours.
I have seen online that LBD have a helpline and wonder if they will be of help to you.
Please take good care of yourself, I hope you have some support from family or friends. Xxx
My husband has Dementia with Lewy Bodies. He was diagnosed last April but has had symptoms for about four years. Anyway I felt I wanted to comment on the very confusing nature of the condition. Whilst everyone's symptoms are unique, I think my husbands experiences are fairly typical of DLB. His memory and verbal ability are hardly affected. Hence it is hard for people who don't spend much time with him to accept he is unwell. DLB does not conform to stereotypical ideas of what people with dementia are like.
His planning, technical and spacial skills are poor. He cannot use his mobile phone, the computer, remote control for TV etc. His handwriting is illegible. He has severe pains and has very limited walking and standing due to Parkinson's symptoms which are part of DLB. He has good insight into his condition. He has psychotic symptoms especially overnight which were appalling but, thankfully, now largely controlled by medication. He sleeps heavily during the day and finds engagement in conversation draining. An hour in company is often ok but more is very difficult. He suffers from chronic constipation too, again typical of DLB and some urinary incontinence. We've received very good support from the Memory Assessment Service locally which makes a huge difference also from our local Carers Association. All the same it is a dreadful illness for him and for me too as his loved one and carer.
It's important to get a correct diagnosis for DLB as people with the condition are frequently hypersensitivity to medication especially antipsychotic drugs which could be very harmful. Also other drugs commonly used in the treatment of symptoms of Dementia can have an adverse or "paradoxical" effect. This applies to my husband. It took several months to find which combination of drugs would help control his most challenging symptoms.
People with DLB may experience periods when they seem quite well. This might last for a few weeks. At such times it is hard to accept that they are unwell. I find I doubt my own perceptions and judgement. It is so confusing. Also my husband's symptoms can change markedly throughout the day. We do what we can, when we can. All things considered we manage to do quite a lot to fill the days and to enjoy things when we are able.
I hope this description of our experience of DLB has been helpful to you. Good luck.
 

Larker

Registered User
Mar 1, 2019
47
East Yorkshire
My husband has Dementia with Lewy Bodies. He was diagnosed last April but has had symptoms for about four years. Anyway I felt I wanted to comment on the very confusing nature of the condition. Whilst everyone's symptoms are unique, I think my husbands experiences are fairly typical of DLB. His memory and verbal ability are hardly affected. Hence it is hard for people who don't spend much time with him to accept he is unwell. DLB does not conform to stereotypical ideas of what people with dementia are like.
His planning, technical and spacial skills are poor. He cannot use his mobile phone, the computer, remote control for TV etc. His handwriting is illegible. He has severe pains and has very limited walking and standing due to Parkinson's symptoms which are part of DLB. He has good insight into his condition. He has psychotic symptoms especially overnight which were appalling but, thankfully, now largely controlled by medication. He sleeps heavily during the day and finds engagement in conversation draining. An hour in company is often ok but more is very difficult. He suffers from chronic constipation too, again typical of DLB and some urinary incontinence. We've received very good support from the Memory Assessment Service locally which makes a huge difference also from our local Carers Association. All the same it is a dreadful illness for him and for me too as his loved one and carer.
It's important to get a correct diagnosis for DLB as people with the condition are frequently hypersensitivity to medication especially antipsychotic drugs which could be very harmful. Also other drugs commonly used in the treatment of symptoms of Dementia can have an adverse or "paradoxical" effect. This applies to my husband. It took several months to find which combination of drugs would help control his most challenging symptoms.
People with DLB may experience periods when they seem quite well. This might last for a few weeks. At such times it is hard to accept that they are unwell. I find I doubt my own perceptions and judgement. It is so confusing. Also my husband's symptoms can change markedly throughout the day. We do what we can, when we can. All things considered we manage to do quite a lot to fill the days and to enjoy things when we are able.
I hope this description of our experience of DLB has been helpful to you. Good luck.
Thank you for sharing your experiences. My husband was recently diagnosed with LBD and I am agreeing with all your comments. It is such a strange condition and sometimes well hidden. All the best to you
 

Larker

Registered User
Mar 1, 2019
47
East Yorkshire
My husband has Dementia with Lewy Bodies. He was diagnosed last April but has had symptoms for about four years. Anyway I felt I wanted to comment on the very confusing nature of the condition. Whilst everyone's symptoms are unique, I think my husbands experiences are fairly typical of DLB. His memory and verbal ability are hardly affected. Hence it is hard for people who don't spend much time with him to accept he is unwell. DLB does not conform to stereotypical ideas of what people with dementia are like.
His planning, technical and spacial skills are poor. He cannot use his mobile phone, the computer, remote control for TV etc. His handwriting is illegible. He has severe pains and has very limited walking and standing due to Parkinson's symptoms which are part of DLB. He has good insight into his condition. He has psychotic symptoms especially overnight which were appalling but, thankfully, now largely controlled by medication. He sleeps heavily during the day and finds engagement in conversation draining. An hour in company is often ok but more is very difficult. He suffers from chronic constipation too, again typical of DLB and some urinary incontinence. We've received very good support from the Memory Assessment Service locally which makes a huge difference also from our local Carers Association. All the same it is a dreadful illness for him and for me too as his loved one and carer.
It's important to get a correct diagnosis for DLB as people with the condition are frequently hypersensitivity to medication especially antipsychotic drugs which could be very harmful. Also other drugs commonly used in the treatment of symptoms of Dementia can have an adverse or "paradoxical" effect. This applies to my husband. It took several months to find which combination of drugs would help control his most challenging symptoms.
People with DLB may experience periods when they seem quite well. This might last for a few weeks. At such times it is hard to accept that they are unwell. I find I doubt my own perceptions and judgement. It is so confusing. Also my husband's symptoms can change markedly throughout the day. We do what we can, when we can. All things considered we manage to do quite a lot to fill the days and to enjoy things when we are able.
I hope this description of our experience of DLB has been helpful to you. Good luck.
Thank you for sharing your experiences. My husband was recently diagnosed with LBD and I am agreeing with all your comments. It is such a strange condition and sometimes well hidden. All the best to you
 

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