Who has stolen my husband?

[Sad Staffs]

B, please ask the social services for help, even if you are self funding. Please tell them that you are turning to them because there is no other help and could they possibly tell you where the vacancies are, even if they cannot recommend anything. Emphasise that you are in acute pain and you have to get this sorted in order to go on being a carer, otherwise you will not be able to cope at all.
The other option, although expensive, is to track down and hire an independent social worker. They do exist and I have heard good things.
I do not want worry about this to add to your difficulties my darling.
with all love, Geraldine aka kindred. xxxx

Thank you Geraldine for your wise words. I will talk to my GP as I believe he can refer me to social services and it could be quicker via him.
I hadn’t heard about independent social workers, but of course it makes sense. It’s just that I’m such a novice.
I hope you are ok, and managed a lovely visit today to see Keith and the residents. Were they full of e additives from lots of Halloween treats?
With much love B xx

 

[Grahamstown]

Hello @Grahamstown , thank you for your post. I’m so pleased you are still able to have holidays, I hope it was a good holiday for you both.

It is hard to still see the person we love so much with dementia, and yet so often they are not really there. I just don’t understand where my husband has gone, and why, and I would give anything to get him back as he was such a short time ago.
My husband surprises me in so many ways, sometimes good sometimes bad. At least he keeps me on my toes. Never a quiet moment! And oh, how I would love quiet moments!
Do keep in touch, it is good to talk to you.
Take care, B xx

Oh yes yes that’s what I feel too. He has forgotten about the holidays already, even that we were on a ship celebrating his birthday. He always says lovely things to me and enjoys the moment so even though it is a strain looking after him, I think it is still worth the effort because he is much more active with encouragement. But the old him is just not there any more. At least we have our TP friends to talk to.

 

[kindred]

Thank you Geraldine for your wise words. I will talk to my GP as I believe he can refer me to social services and it could be quicker via him.
I hadn’t heard about independent social workers, but of course it makes sense. It’s just that I’m such a novice.
I hope you are ok, and managed a lovely visit today to see Keith and the residents. Were they full of e additives from lots of Halloween treats?
With much love B xx

well, we had a healthy eating initiative yesterday! But the treats were carefully monitored and a lot of them were fruit. Meanwhile, I think the staff were buzzing from too much chocolate ...
all love, sweetheart, so good to hear from you. Geraldinexxxx

 

[AliceA]

Do chocolate cashews fall into healthy category or not?

 

[mickeyplum]

How good it is to see humour coming through some of the messages. We all must try to keep that part of ourselves alive for our own sakes.
Earlier this year my strawberry hanging plant outside the kitchen door was full of flowers. I commented to my husband that it looked like we'd have lots of strawberries this year.
The following day there were no flowers on it. My husband had removed them all. (Like dead-heading roses, I presumed?)
It's the only time - so far - I've felt like beating him on his chest out of sheer frustration. (Please don't report me to Social Services, ha ha)
He seemed upset that he'd done wrong and said it didn't matter, they would grow again.
Well, I don't know too much about gardening but, would you believe, we got an Autumn fresh lot of flowers. The result is, we now have a plant full of green strawberries, in November, fighting against the frost! Anybody for Strawberry Chutney?
I can smile now when I remember myself staring at my beloved plant with murder in my heart. And all because of a few stupid strawberries that I could easily have replaced with a punnet from Aldi.
Thinking of you Sad Staffs and wishing you well in all that your facing right now .
This old saying has just come to mind - Better to have loved and lost than never to have loved at all..Probably applies to most of us on TP. Let's cherish the thought.

 

[pixie2]

I know its

Our 47th anniversary was last week and I miss everything I used to take for granted.

It is indeed such a cruel condition.

I know, its heartbreaking isn't it xx

 

[Sad Staffs]

Do chocolate cashews fall into healthy category or not?

Chocolate cashews?
Never had them... chocolate peanuts, had them, especially mixed with chocolate raisins.
Cashews are a weakness of mine, but only by the bag, not by the handful (anything calorific is a weakness, in fact I had two pieces of fried bread on my full English the other day, couldn’t manage the sausage, bacon and egg, left them, but boy did the fried bread go down a treat!!)
Now I need to search for chocolate cashews. If I can’t find any then salted cashews by the bag will suffice.
I now have a yearning....
Love B xx

 

[AliceA]

Chocolate cashews?
Never had them... chocolate peanuts, had them, especially mixed with chocolate raisins.
Cashews are a weakness of mine, but only by the bag, not by the handful (anything calorific is a weakness, in fact I had two pieces of fried bread on my full English the other day, couldn’t manage the sausage, bacon and egg, left them, but boy did the fried bread go down a treat!!)
Now I need to search for chocolate cashews. If I can’t find any then salted cashews by the bag will suffice.
I now have a yearning....
Love B xx

Grapetree have them and roasted ones too. I have to shop on line, so if you do not have a branch!
Normally I keep them out the house but I thought of our daughter, them I decided to try them out of curiousity, to my down fall! X

 

[AliceA]

How good it is to see humour coming through some of the messages. We all must try to keep that part of ourselves alive for our own sakes.
Earlier this year my strawberry hanging plant outside the kitchen door was full of flowers. I commented to my husband that it looked like we'd have lots of strawberries this year.
The following day there were no flowers on it. My husband had removed them all. (Like dead-heading roses, I presumed?)
It's the only time - so far - I've felt like beating him on his chest out of sheer frustration. (Please don't report me to Social Services, ha ha)
He seemed upset that he'd done wrong and said it didn't matter, they would grow again.
Well, I don't know too much about gardening but, would you believe, we got an Autumn fresh lot of flowers. The result is, we now have a plant full of green strawberries, in November, fighting against the frost! Anybody for Strawberry Chutney?
I can smile now when I remember myself staring at my beloved plant with murder in my heart. And all because of a few stupid strawberries that I could easily have replaced with a punnet from Aldi.
Thinking of you Sad Staffs and wishing you well in all that your facing right now .
This old saying has just come to mind - Better to have loved and lost than never to have loved at all..Probably applies to most of us on TP. Let's cherish the thought.

You are so right about the humour, we must hold on to it at all costs. Shame about the strawberries. I find the same, an idea gets distorted. This week I am dealing with a sudden change to organise me thinking it is helping!
Bless him. I think it is a sudden urge to regain more control over his life. A reaction to too much happening.
Too many appointments and anxiety cracks in. Yes, better to have loved and still love for two.
X

 

[jumbo]

To all that have written above, I can definitely relate to all you have said. My OH just turned 63 years old. I baked him a cake and wished him a happy birthday. But in fact, he has no idea how old he is or what day it is, and most of the time has no idea who I am. We went through the confusion stage, the confrontational argumentative stage, the loss of interest stage, then the loss of meaningful speech stage and are not in the incontinent stage, inability to walk stage, difficulty eating stage. It now requires two caregivers to stand him up and place on the portable commode. BUT, he is at home, he smiles, and once in a great while he will look at me as if he knows who I am and will kiss me back. I too wish I knew who stole him away from me. The same "person" has ripped half of my heart out of my chest and reduced me to tears every day. It's mean, its cruel, it's VERY lonely, and if there is any meaning to it, it escapes me. No one around me truly understands what we are going through. They are concerned and supportive but they cannot understand the depth of despair we here on TP feel. It is truly a blessing to have this forum. Please keep posting even though reading the posts generates even more tears. Do we ever run out...

Hi there, I can identify with all that you say and I secretly have a cry and say a few prayers each day. Where has this energetic vibrant lady gone? I thank God ( and I am not religious) each day that I am fit enough yo care for Margaret because without me it would be a care home. The family are far too busy! One or two short visits each year on their way on holiday and reminder phone calls near to birthdays and Xmas. Nevertheless, the two of us get on day by day not knowing what tomorrow will bring. Yesterday it was lovely when one of our old friends rang for a chat and Margaret was able to revert to her more with it person whilst talking for a good two minutes. It was also wonderful to see her smile after I had washed her hair and she constantly put the comb through the shining locks! Such small things make it worthwhile, But the silences and the lacking of wanting to eat! Fortunately Margaret is not aggressive but can be extremely obstinate ( sorry independent to get it politically correct!). I am the sole person who nags her to do this or that and I would love for the day when daughter walks through the door and says "Right Mum I am taking you out for a while" The likelihood of that is nil! Son-in-law seems to think that illness is a sign of weakness - its the military training! I will stop twittering on and hope that your Saturday is a little brighter. Keep up the splendid work,

 

[Sad Staffs]

Hi there, I can identify with all that you say and I secretly have a cry and say a few prayers each day. Where has this energetic vibrant lady gone? I thank God ( and I am not religious) each day that I am fit enough yo care for Margaret because without me it would be a care home. The family are far too busy! One or two short visits each year on their way on holiday and reminder phone calls near to birthdays and Xmas. Nevertheless, the two of us get on day by day not knowing what tomorrow will bring. Yesterday it was lovely when one of our old friends rang for a chat and Margaret was able to revert to her more with it person whilst talking for a good two minutes. It was also wonderful to see her smile after I had washed her hair and she constantly put the comb through the shining locks! Such small things make it worthwhile, But the silences and the lacking of wanting to eat! Fortunately Margaret is not aggressive but can be extremely obstinate ( sorry independent to get it politically correct!). I am the sole person who nags her to do this or that and I would love for the day when daughter walks through the door and says "Right Mum I am taking you out for a while" The likelihood of that is nil! Son-in-law seems to think that illness is a sign of weakness - its the military training! I will stop twittering on and hope that your Saturday is a little brighter. Keep up the splendid work,

Hello @jumbo
Thank you for your post... you brought a tear to my eye, and I have so many tears to shed these days. Mostly at night, while my husband is sleeping soundly by my side like we have no cares in our world. I do feel that I shoulder everything now, and only people like you will understand how tough it really is.
I can relate to your comments about family! One son, who is in his 50s I believe lives less than a mile away, but only see or hear from him when he wants something. It’s now 18 months since I have seen or heard from him. Other son lives 4 hour drive away, runs his own business. Sends the occasional message telling me he worries about me.... what good does that really do.
We now have builders coming in for two weeks starting Monday to change the shower room to meet my husbands needs. I’m dreading it. Being out of his routine is a real worry, fingers crossed!
Then I’m in pain and going into hospital in January which means finding somewhere to look after my husband for two weeks. This worries me most of all. We haven’t been apart for many many years. We are so dependent on each other.. and we still love each ..... most of the time!
It has been good talking to you. I hope you have a nice quiet day with Margaret. With love, B x

 

[jumbo]

Hello @jumbo
Thank you for your post... you brought a tear to my eye, and I have so many tears to shed these days. Mostly at night, while my husband is sleeping soundly by my side like we have no cares in our world. I do feel that I shoulder everything now, and only people like you will understand how tough it really is.
I can relate to your comments about family! One son, who is in his 50s I believe lives less than a mile away, but only see or hear from him when he wants something. It’s now 18 months since I have seen or heard from him. Other son lives 4 hour drive away, runs his own business. Sends the occasional message telling me he worries about me.... what good does that really do.
We now have builders coming in for two weeks starting Monday to change the shower room to meet my husbands needs. I’m dreading it. Being out of his routine is a real worry, fingers crossed!
Then I’m in pain and going into hospital in January which means finding somewhere to look after my husband for two weeks. This worries me most of all. We haven’t been apart for many many years. We are so dependent on each other.. and we still love each ..... most of the time!
It has been good talking to you. I hope you have a nice quiet day with Margaret. With love, B x

lovely to hear from you. Just going to give Margaret her nightly/afternoon treat and wash/massage her feet in our Spa Foot machine. She is enjoying watching Poirot for the umpteenth time! But at least she is smiling..Good luck with the builders. Jumbo

 

[Sad Staffs]

I’m going round in circles! Your advice would be really helpful.
I’m trying to figure out whether there is any way that I can keep my husband at home when I go into hospital. The biggest issue is that he can’t manage his incontinence pads. He can’t put them on, struggles to work whether it is inside out, upside down, back to front. I have to help him roughly every hour when he believes he wants to wee, but because his urine is constantly flowing, nothing happens.
Putting the night pads on would be impossible for him. It doesn’t help that his balance and mobility are very poor.
His dementia is mostly early stage, although in reality I have no idea! Most of the time he seems fine. Most people wouldn’t know. He gets angry and aggressive with me, but I doubt he would do this with someone else, at least not as he is at the moment.
He gets obsessive, and can’t handle anything out of his routine. That really throws him.
He can’t work things out, so he couldn’t put the alarms on, would he lock doors, etc? He does very little in the home now.
He is worried and lost when I am not in his sight.
I know that the sensible thing is to find a care home to take him. But I’m not sure that at this stage a care home is right for him. I don’t think, mostly, that he would fit in to the care homes that I have seen. I guess in reality it is my own guilt kicking in.
We don’t have anyone who can stay with him at home. I also think it would be embarrassing for someone we know to deal with his pads..... it really is such a personal private matter for him.
I don’t know what to do. I just feel that it is not in his best interest to go into a care home for two weeks.
Is it possible to employ a live in carer for two weeks? Would this work? Would this be more expensive than a care home?
Sorry for rambling. I just want to get my surgery done, get better, but most importantly ensure that my husband has the best right care.

 

[kindred]

I’m going round in circles! Your advice would be really helpful.
I’m trying to figure out whether there is any way that I can keep my husband at home when I go into hospital. The biggest issue is that he can’t manage his incontinence pads. He can’t put them on, struggles to work whether it is inside out, upside down, back to front. I have to help him roughly every hour when he believes he wants to wee, but because his urine is constantly flowing, nothing happens.
Putting the night pads on would be impossible for him. It doesn’t help that his balance and mobility are very poor.
His dementia is mostly early stage, although in reality I have no idea! Most of the time he seems fine. Most people wouldn’t know. He gets angry and aggressive with me, but I doubt he would do this with someone else, at least not as he is at the moment.
He gets obsessive, and can’t handle anything out of his routine. That really throws him.
He can’t work things out, so he couldn’t put the alarms on, would he lock doors, etc? He does very little in the home now.
He is worried and lost when I am not in his sight.
I know that the sensible thing is to find a care home to take him. But I’m not sure that at this stage a care home is right for him. I don’t think, mostly, that he would fit in to the care homes that I have seen. I guess in reality it is my own guilt kicking in.
We don’t have anyone who can stay with him at home. I also think it would be embarrassing for someone we know to deal with his pads..... it really is such a personal private matter for him.
I don’t know what to do. I just feel that it is not in his best interest to go into a care home for two weeks.
Is it possible to employ a live in carer for two weeks? Would this work? Would this be more expensive than a care home?
Sorry for rambling. I just want to get my surgery done, get better, but most importantly ensure that my husband has the best right care.

Yes, you certainly could employ a live-in carer and a lot of agencies provide these sweetheart. It is costly and would probably be about the same as a care home, or a little bit less. You need to provide them with a tv and a washing machine from what I gather. Can social services help you with a bit of advice about the best care homes for respite? I know you must get the surgery done, I do understand. Perhaps think again about the care home decision? They will probably work very hard to make sure he does fit in. And you could be in touch every day for a progress report. And of course, they are so used to managing pads.
Whichever option you choose, he is going to be a bit confused and out of routine. Personally, I would go for a care home because I think my mind would be more at rest while having the operation, but sweetheart I know how difficult this is, I really do.
All love and thoughts, Kindred aka Geraldinexxxx

 

[Sad Staffs]

Yes, you certainly could employ a live-in carer and a lot of agencies provide these sweetheart. It is costly and would probably be about the same as a care home, or a little bit less. You need to provide them with a tv and a washing machine from what I gather. Can social services help you with a bit of advice about the best care homes for respite? I know you must get the surgery done, I do understand. Perhaps think again about the care home decision? They will probably work very hard to make sure he does fit in. And you could be in touch every day for a progress report. And of course, they are so used to managing pads.
Whichever option you choose, he is going to be a bit confused and out of routine. Personally, I would go for a care home because I think my mind would be more at rest while having the operation, but sweetheart I know how difficult this is, I really do.
All love and thoughts, Kindred aka Geraldinexxxx

Thanks as always Geraldine.
I hear what you say about a care home. I worry how antisocial my husband is. I don’t know how well he would fit in. I have very little experience of care homes. But I won’t throw this out. I’m going to talk to my GP on Thursday. I’ll see what he says, then I can get in touch with the social worker who produced a report when my husband came home following sepsis.
The one thing I know he won’t want is for anyone we know managing his pads. He was fine with hospital staff doing it, so as you say care staff would be ok for him.
Oh dear... I’m not bothered about myself at all. It’s like it’s not happening. I just worry about my husband.
I’m sure I will be begging for your help and guidance before too long.
Thank you for always being there.
Love a Barbara xx

 

[Starbright]

Thanks as always Geraldine.
I hear what you say about a care home. I worry how antisocial my husband is. I don’t know how well he would fit in. I have very little experience of care homes. But I won’t throw this out. I’m going to talk to my GP on Thursday. I’ll see what he says, then I can get in touch with the social worker who produced a report when my husband came home following sepsis.
The one thing I know he won’t want is for anyone we know managing his pads. He was fine with hospital staff doing it, so as you say care staff would be ok for him.
Oh dear... I’m not bothered about myself at all. It’s like it’s not happening. I just worry about my husband.
I’m sure I will be begging for your help and guidance before too long.
Thank you for always being there.
Love a Barbara xx

PM’d you B ....A x

 

[White Rose]

This made me cry because it's what we are all going through and we can all relate to this - how desperately you miss the person that you loved and the despair that you will never ever get that person back. The cruelest disease, not only do you lose the one you love but you end up losing yourself as well because your whole life revolves around their care. I've started writing poetry on the subject, for now it gives me a creative outlet for the feelings that I think could be said (without wanting to over dramatise) to be feelings of grief.

 

[Sad Staffs]

This made me cry because it's what we are all going through and we can all relate to this - how desperately you miss the person that you loved and the despair that you will never ever get that person back. The cruelest disease, not only do you lose the one you love but you end up losing yourself as well because your whole life revolves around their care. I've started writing poetry on the subject, for now it gives me a creative outlet for the feelings that I think could be said (without wanting to over dramatise) to be feelings of grief.

Hello @White Rose
Thank you for your post, I’m sure you would have realised that I was very low, crying, when I wrote the original post.
It’s hard to come to terms with the fact that our loved one will never be the same as they were. It’s so hard. Why has it happened? We have lost them.... but they are still there. It’s confusing for us.
It’s good that you can get comfort from your poetry.
If you feel able, please post some of your poetry on here. I’m sure so many of us would welcome it and relate to it.
Take care, so many people on this forum will offer you advice and support.
With love, B xx

 

[Sad Staffs]

Many times I look at my husband and question his dementia. It’s most obvious when he is trying to work something out, like his phone, remotes, reading, etc.
Sometimes he just seems like he did a few years ago, especially when we have visitors. And I wonder why he can’t communicate and be nice like that with me.
Today his dementia has all become so obvious.
We have builders in to replace shower room. Everything is a mess. And of course it is the shower room that he uses. We have a fixed routine in a morning and evening. I have to help him, but he knows what to do and when.... well mostly, not always, sometimes he forgets the most obvious frequent things.
So yesterday I had to empty the shower room and scatter everything around bathroom and bedrooms. My main aim was to have everything he would need to hand in bathroom.
Last night, getting him into his incontinence pads and pyjamas, he was so far out of his comfort zone, he was almost uncontrollable and inconsolable. But I eventually got him into bed.
This morning he just had no idea what we had to do to get him ready before builders arrived. He was panicking before he got out of bed, and I had to do everything with him step by step.
He can’t cope at all with being out of his routine.
And, he is so grumpy and bad tempered. He’s oozing unpleasantness.
Oh well, what’s new!
At least it will be finished in 2 weeks. What fun!

 

[canary]

My OH needs his set routine to get him through the day too. We cant go away on holiday now and I think having builders in would produce the same results here too . Heres to building work finishing and back to peace quiet and routine!

BTW, Im sure sure you know that

Sometimes he just seems like he did a few years ago, especially when we have visitors. And I wonder why he can’t communicate and be nice like that with me.

is Host Mode, but it is hard to get your head round it. When you see it, its easy to convince yourself that he could be like that all the time. Really, though, you know he cant. Host Mode takes our PWD so much effort that they cant maintain it for long and it leaves them exhausted and grumpy