Who has stolen my husband?

[kindred]

When I knew that I had to go into hospital, I thought that social services would guide me towards the care that my husband needed while I recover.
So I made a referral, explaining that we would be self funding.
No one got back to me.
I began to worry and spoke to the GP who suggested I googled local care homes, which I did. The GP also got his manager to chase it up. Still no one contacted me.
I sourced a local care home myself and my mind was at rest.
So, just had a phone call from social services. I said I’d sorted it, but what would have happened if I hadn’t. She said they would have tried to find a place but it could be anywhere in the county, whatever they could find, it seems places are difficult to source, there was no guarantee what, if, where, and we would still have to pay.
I am such a novice to all this, but I guess I’m learning.
I’m disappointed with the social care system.
I thought there would be someone to care about these two 73 year olds, one with dementia the other with pain and physical difficulties.
I now realise we are on our own.
The state just doesn’t care.
They care even less if you have worked and saved all your life.
It’s like they have washed their hands of us and don’t care if we are alive or dead!
Thank goodness I can get these things off my chest with my TP friends.
B xx

I know, I really do, the illusion of care ... sometimes not even that. It is hard to get your head around especially for those of us who have known better times. The last time I had call to use LA social care was that they GAVE us three weeks of a maternity nurse/carer after my son was born because I had no family who could help ... Can you imagine that level of care??? Ididn't even have to ask, it was arranged through the hospital- 45 years ago.
Iknow about the self funders too. The reason we have any savings at all is that I was too busy being a carer for my mother to ever have holidays!!!
I'm a novice to this current situation too. I feel the Government wishes we weren't around at all ... BUT on TP we can care for each other, sweetheart, and we do. all my love, Geraldine. xx

 

[Sad Staffs]

I could have written this post myself, it is EXACTLY how I feel. Love and hate are so close, we can quickly swing from one to the other and back again. In much the same way, my husband is lost, then found (briefly), then lost again. I think we all live for the brief 'found' periods!

I do hope your operation goes well and your husband is comfortable in the CH. If possible, you could count it as a holiday for both of you....a change of scenery (though I grant yours will not be pretty in a hospital ward) a change of the faces around you. Try not to worry about him, he will be fine I'm sure The staff in the home will have loads of experience in dealing with newcomers, I bet he'll really enjoy the attention

Good luck for the op and your recovery. Love from Jan x

Oh, thank you so much Jan, for your kind thoughtful post. I’m not looking forward to the surgery, but in reality I’m not thinking about me or hospital, I’m only thinking about my husband, worrying about how he will get on. He’s not the easiest person even taking his dementia out of the equation!!
I keep moaning about having no time to myself, not being able to go anywhere without my husband, and I’m now desperate that I’m going to be on my own for two weeks. Absolutely no win situation!!

I’ve just made a list of all I need to get together for him for the care home. I just hope I don’t forget anything! There is so much, just his incontinence pads etc are a boot full!

You are right, I’m sure he will like the attention.
I’ll let you know how I get on after surgery.
Take care, and it’s good to talk to you.
Love B xx

 

[rhubarbtree]

Hi SadStaffs,

Have not been on here for a while as life got in the way. Sorry you have had such a struggle with care but glad you have it sorted now. I have just returned from a review of my OH at the day centre. Nothing new or enlightening but it is good to get a different perspective. Hopefully the care home will be able to give you some insight into your OH's mood/behaviour swings even if it just confirms your own thoughts. My OH will have a week of respite care next week. You are so articulate but I cannot put into words my many thoughts and feelings about this. Someone from the memory clinic asked what would happen to my OH if I was ill. I explained the children knew he would need to go into immediate care and there was money for that. And she said well why not spend some now and improve your life. Can't argue with that. We can compare notes in the next weeks.

Canary my OH loves a good Brexit discussion on TV. Sits forward concentrating. Perhaps my OH, your OH and a handful of civil servants actually understand it all. Not me, I have completely lost interest.

Will be thinking of you SadStaffs. Best wishes for your hospital stay.

 

[Sad Staffs]

Hi SadStaffs,

Have not been on here for a while as life got in the way. Sorry you have had such a struggle with care but glad you have it sorted now. I have just returned from a review of my OH at the day centre. Nothing new or enlightening but it is good to get a different perspective. Hopefully the care home will be able to give you some insight into your OH's mood/behaviour swings even if it just confirms your own thoughts. My OH will have a week of respite care next week. You are so articulate but I cannot put into words my many thoughts and feelings about this. Someone from the memory clinic asked what would happen to my OH if I was ill. I explained the children knew he would need to go into immediate care and there was money for that. And she said well why not spend some now and improve your life. Can't argue with that. We can compare notes in the next weeks.

Canary my OH loves a good Brexit discussion on TV. Sits forward concentrating. Perhaps my OH, your OH and a handful of civil servants actually understand it all. Not me, I have completely lost interest.

Will be thinking of you SadStaffs. Best wishes for your hospital stay.

Hi @rhubarbtree
Thank you for your post and for your good wishes for my forthcoming surgery. I have to be honest I’m not thinking about it, I’m not worried at all, as all I can think about is me locking my husband away, as he puts it, when it is something he really doesn’t want to do. It’s all so painful, he keeps saying he wants me to get better, but he doesn’t want to be apart from me, he wants to take care of me. He always has for 45 years, he can’t comprehend why he can’t now.

I am coming round to thinking it might be a positive experience for him in the care home. Well, it will either be positive or negative, we will soon find out.
I’ve got visions of me lying on the operating table and my mobile phone ringing, with him trying to find out where I am! Or how to work his iPad or iPhone! He has no idea just how much I do for him!

I hope your respite week works well for you. Please, please let me know. I would really like to hear how it worked out, and I can let you know about my experience!
Take care, have a good week, love B xx

 

[Sad Staffs]

Paid for the refurbished shower room Saturday.
So, yesterday my husband said he didn’t think the toilet was right. He flushed before I could stop him, and it’s ALL backing up!
Luckily we have another loo in bathroom.
But this has caused major upset, distress and confusion for my husband. The shower room has been done to meet his needs, now he is confused as to where he can go and what he can do where.
I’m trying to get things together for him going into care home on Monday for two weeks, and me to hospital on Tuesday.
There is so much to do, but I can’t do it as he just wants me to be there by his side all day and night.
He’s just gone quiet, dozing, peace for me to write down my thoughts.
But it was easier looking after my children. At least I could sit them down with toys, or the tv, and tell them to leave me alone. They were so much easier to occupy than my husband who is only interested in me. He doesn’t read, not interested in the tv, just sits looking out of the window.
I should be pleased that he is so obsessed with me... but, my goodness, it’s hard work living the life of him and me.
I find it helpful to write down how I feel.
TP is all I have.
I can’t tell anyone else the truth about how I really feel.
Thank you TP readers for being there for me....
Love B xx

 

[kindred]

Paid for the refurbished shower room Saturday.
So, yesterday my husband said he didn’t think the toilet was right. He flushed before I could stop him, and it’s ALL backing up!
Luckily we have another loo in bathroom.
But this has caused major upset, distress and confusion for my husband. The shower room has been done to meet his needs, now he is confused as to where he can go and what he can do where.
I’m trying to get things together for him going into care home on Monday for two weeks, and me to hospital on Tuesday.
There is so much to do, but I can’t do it as he just wants me to be there by his side all day and night.
He’s just gone quiet, dozing, peace for me to write down my thoughts.
But it was easier looking after my children. At least I could sit them down with toys, or the tv, and tell them to leave me alone. They were so much easier to occupy than my husband who is only interested in me. He doesn’t read, not interested in the tv, just sits looking out of the window.
I should be pleased that he is so obsessed with me... but, my goodness, it’s hard work living the life of him and me.
I find it helpful to write down how I feel.
TP is all I have.
I can’t tell anyone else the truth about how I really feel.
Thank you TP readers for being there for me....
Love B xx

With you all the way darling. Always. Just off to see K, but had to say I do know, I do. K used to wake me up all night saying, it's ME!! I am so sorry about the bathroom mess. K was forever flushing stuff down the loo and blocking it, once an entire pillow ...With o

 

[kindred]

With you all the way darling. Always. Just off to see K, but had to say I do know, I do. K used to wake me up all night saying, it's ME!! I am so sorry about the bathroom mess. K was forever flushing stuff down the loo and blocking it, once an entire pillow ...With o

With you all the way darling. Always. Just off to see K, but had to say I do know, I do. K used to wake me up all night saying, it's ME!! I am so sorry about the bathroom mess. K was forever flushing stuff down the loo and blocking it, once an entire pillow ...With

you all way. Was ever there a more bizarre, draining business than this. Used draining without thinking, you know what I mean. Love and best darling one. Geraldinexxxx

 

[Sad Staffs]

Plumbers been.
Cleared the loo back up, but put my back up suggesting we caused it.
He has never had one back up he said.
Well, our 30 year old loo never backed up either.
New one has been in less than a week and it backed up!
He got his trusty plunger out and all seems well.... for the time being.
I’m not filled with confidence, but I’m quite sure that my husband didn’t cause it as I’m constantly getting on his nerves telling him not to put wipes or too much paper down.
I’m off to check the loo....
Fingers crossed.
B xx
Draining @kindred ....made me giggle xx

 

[kindred]

Plumbers been.
Cleared the loo back up, but put my back up suggesting we caused it.
He has never had one back up he said.
Well, our 30 year old loo never backed up either.
New one has been in less than a week and it backed up!
He got his trusty plunger out and all seems well.... for the time being.
I’m not filled with confidence, but I’m quite sure that my husband didn’t cause it as I’m constantly getting on his nerves telling him not to put wipes or too much paper down.
I’m off to check the loo....
Fingers crossed.
B xx
Draining @kindred ....made me giggle xx

draining, Sandy Shore, floosie, this is getting quite a day sweetheart!! I never thought I would be so preoccupied with overflowing loos either ... Gxcx

 

[AliceA]

YES, you have got us. We are just a thought away.
I can now see the advantage of the home/day centre having a commode in the bedrooms.
I am still sorting our transport, my husband suggested if he had an electric chair thing he could get there, Bless him. He is so precious to me.
A winding potholed lane plus two busy main roads may not be a good thing said I but it really was a good thought.

I shall be thinking of you especially, just try to concentrate on you and get better soon. Xxx

 

[Sad Staffs]

YES, you have got us. We are just a thought away.
I can now see the advantage of the home/day centre having a commode in the bedrooms.
I am still sorting our transport, my husband suggested if he had an electric chair thing he could get there, Bless him. He is so precious to me.
A winding potholed lane plus two busy main roads may not be a good thing said I but it really was a good thought.

I shall be thinking of you especially, just try to concentrate on you and get better soon. Xxx

Thank you Alice, your warm words really do help me x

I now have visions of your husband in a Formula 1 electric chair .... Lewis Hamilton better watch out! But Lewis doesn’t have to contend with pot holes!
My mother in law had one, not designed to go on the road, the police kept bringing her back as she was racing up the main road, in the dark, no lights. But her main diet was gin and Valium. OM goodness what a lethal combination!

I hope you manage to sort out efficient and practical transport very soon.
It’s a hard life without all that worry.
I will let you know how I get on.... thinking of you
Much love, Barbara xx

 

[Sad Staffs]

Today I got items together for my husband for the care home on Monday.
They told me to put his name on the labels.
Most labels are black!
So I used waistbands, thermal vests with his name on the neck band and light coloured socks with his name on the ankle! Luckily his trousers are quite long and should cover his socks!
It was always going to be a tussle. I want to be practical, he wants to wear his best clothes. I won, after explaining that they might not be as careful with the washing as I am. I’m not careful. I just shove it in the machine and push a button, but it worked well. Practical it is.
Then we had to gather 2 weeks worth of incontinence paraphernalia.
My goodness.... 56 day pads ( is this enough?), 14 night slip pads (let’s hope they get it right and no accidents), 28 booster pads and 14 pull up pants to go over the top to keep everything in place and as added precaution!
Then we have wet wipes, dry wipes, creams, and on it went.
How embarrassing would it be if we were going on a 2 week cruise?
It made me realise just how impossible such things are now.
How your life can change in a few short months.
My turn tomorrow. Need to get myself sorted for my hospital visit. It’s good that I have been on the back burner. Not thinking about me means I can’t worry.... my case is more like a large shopping bag compared to my husbands!
Hope you have a decent weekend, love B xx

 

[kindred]

Today I got items together for my husband for the care home on Monday.
They told me to put his name on the labels.
Most labels are black!
So I used waistbands, thermal vests with his name on the neck band and light coloured socks with his name on the ankle! Luckily his trousers are quite long and should cover his socks!
It was always going to be a tussle. I want to be practical, he wants to wear his best clothes. I won, after explaining that they might not be as careful with the washing as I am. I’m not careful. I just shove it in the machine and push a button, but it worked well. Practical it is.
Then we had to gather 2 weeks worth of incontinence paraphernalia.
My goodness.... 56 day pads ( is this enough?), 14 night slip pads (let’s hope they get it right and no accidents), 28 booster pads and 14 pull up pants to go over the top to keep everything in place and as added precaution!
Then we have wet wipes, dry wipes, creams, and on it went.
How embarrassing would it be if we were going on a 2 week cruise?
It made me realise just how impossible such things are now.
How your life can change in a few short months.
My turn tomorrow. Need to get myself sorted for my hospital visit. It’s good that I have been on the back burner. Not thinking about me means I can’t worry.... my case is more like a large shopping bag compared to my husbands!
Hope you have a decent weekend, love B xx

Oh well done darling, so well done. The staff at the home will appreciate how conscientious you are. Now you, sweetheart, yes, now you. Get precious self sorted now. with love and best and all thoughts, Geraldinexxx

 

[karaokePete]

My fingers are crossed for both of you.

 

[Starbright]

Hi B ...I haven’t been on TP for a while but have just caught up with your thread...just want to say i hope everything goes smoothly for you both.
Thinking of you A x (( here’s a hug ))

 

[Sad Staffs]

Hi B ...I haven’t been on TP for a while but have just caught up with your thread...just want to say i hope everything goes smoothly for you both.
Thinking of you A x (( here’s a hug ))

Hi A, thank you, really lovely to hear from you.
It’s all a bit daunting.
It’s hard seeing my husband accepting that he has to go into respite. I feel guilty, and find myself questioning whether he is bad enough to go . In reality sometimes he is, sometimes he isn’t, but I do know I can’t leave him at home, even with carers coming in, unless it was 24 hour care.
I look at him and he just seems accepting for my sake, but not for himself.
Life is so complicated isn’t it!
I’m dreading sleeping in the house on my own for two weeks. I’ve never done that and I’m more worried about that than about the surgery.
All I keep thinking is roll on Christmas, which is not happening in this house this year... bah humbug! When the two of us can get back to ..... what!?
Who knows?
I think I need a whisky to cheer me up and a hot water bottle for some comfort!
Sorry I’m such a misery, hopefully the next time we speak I will be more upbeat.
Take care, love B xx

 

[AliceA]

No, not a misery, just a caring person needing a bit of care.
If you see a bit of dust floating about that could be me floating around to be there with you in spirit!
I have found when in hospital it is like a child conveyer belt. You get on and it takes you where it will.
I am sure the air is sprayed with bromide! I get a strange feeling of acceptance. It will soon be over and you will be on the recovery road. Xxx

 

[Rosebush]

Hi A, thank you, really lovely to hear from you.
It’s all a bit daunting.
It’s hard seeing my husband accepting that he has to go into respite. I feel guilty, and find myself questioning whether he is bad enough to go . In reality sometimes he is, sometimes he isn’t, but I do know I can’t leave him at home, even with carers coming in, unless it was 24 hour care.
I look at him and he just seems accepting for my sake, but not for himself.
Life is so complicated isn’t it!
I’m dreading sleeping in the house on my own for two weeks. I’ve never done that and I’m more worried about that than about the surgery.
All I keep thinking is roll on Christmas, which is not happening in this house this year... bah humbug! When the two of us can get back to ..... what!?
Who knows?
I think I need a whisky to cheer me up and a hot water bottle for some comfort!
Sorry I’m such a misery, hopefully the next time we speak I will be more upbeat.
Take care, love B xx

Hi B, been thinking of you today hope you are ok I know you are worried about OH i n respite but if he is anything like my OH he was fine when I wasn't there, seems it worried me more than him also I was dreading sleeping in the house on my own because I never had, but it was no where as bad as I thought it would be in fact I slept like a log, maybe I just needed a few days break, I will keep in touch by text when you are in hospital . Make sure you look after yourself. Love Lxxx

 

[Duggies-girl]

Hi @Sad Staffs I have been following your post and just want to wish you well for Monday, You have done the best you can possibly do with some difficult decisions but now is the time to look after yourself first. I am sure that your husband can do without you for a couple of weeks. Wishing you well and please take advantage and take time for a well earned rest.

 

[highland girl]

Hi sadstaffs just logged in while I have two minutes to wish you well for the next couple of weeks. Hope the op goes well and I know it’s hard but try not to worry about your OH, they will look after him and he might enjoy the extra attention. Try to relax after the op when feeling lonely in the house just get on TP. Lots of love S xxx