Who has stolen my husband?

[Sad Staffs]

I’m now in a situation I really am worried about, and not sure what to do or where to go.
I saw the surgeon this morning and he is going to operate in January, So at least I have time to get things in place for my husband.
This is something I’ve been dreading. As long as I am ok, can keep going, then I can sort things for my husband. But I have no choice but to get this sorted, I’m in to much physical pain.
So I need to find somewhere that will take my husband for at least a week, the surgeon says it should be two weeks.
Where do I go, how do I do that, will it be easy to find some care home that will look after him, his dementia and his acute urinary incontinence? I know that we will need to fund this.
I’ve made an appointment to see the GP.... is that the first step?
Or should I get in touch with local social services?
What to do?
Where to go?
We have never needed others to be involved.... now I’m in uncharted territory, and it’s a massive worry.
Any advice will be so welcome.
Thank you, love B xx

 

[canary]

Contact Social Services and explain the problem, they should be able to sort something or, at least, make suggestions.
Your GP might refer you to social services on your behalf, but I dont think you have to go through him/her

 

[Sad Staffs]

Contact Social Services and explain the problem, they should be able to sort something or, at least, make suggestions.
Your GP might refer you to social services on your behalf, but I dont think you have to go through him/her

Thank you, I will contact social services.
I’ve learned such a lot caring for my husband, but I’m at a loss when it comes to sorting things out for me.
I feel I can’t sort me out until I know I’ve sorted him.
It’s like a chicken and egg situation.
No choice but to get on and do it.
It still exasperates me that people assume you will have someone, friend or family, who will step in and care for one or both of us.
Unfortunately we don’t ....
Bxx

 

[Manc70]

Oh B it is so very worrying for you, I’m afraid I don’t have lots of advice but just to let you know I shall be thinking about you. As we know, you will get lots of good advice from here as you have already from @canary. I wouldn’t know where to start, I feel I get emotional support from this forum but need to know where I can get local support when we need it (what for I don’t know but I’m starting to feel I/we need something). We are going to the Dementia Cafe tomorrow - my OH asked if we could go. I’m lucky!!!?? that he accepts his diagnosis although I feel really cruel when he forgets and says he knows something is wrong but what exactly is it and then is distressed all over again when I tell him as gently as possible. He was so low the other day he said he will just go as he didn’t want me to have to look after him. Twenty minutes later he asked if he is still in the army - he was in 25 years but came out nearly 30 years ago - it’s all so draining. Not as draining as your situation especially being in constant pain. I wish for you that you are pain free after your op and feel sure things will fall into place regarding having your husband taken care of while you are recovering - I hope you give yourself as long as you can for recovery which will benefit you both. Take care B and as I say I will be thinking about you. S xxx

 

[mickeyplum]

I am 84,my husband 90 and we've been married 61 years. I sometimes think if I was 20 years younger I'd have more energy and patience to cope with him, but then I read on TP how you younger ones have had to give up jobs and I really feel for you. It must be a lot worse to be young enough to go out and enjoy your retirement and yet have this awful disease preventing you.
We have had a good retirement until about 3 years ago so I know I should count my blessings, and I do. I have no idea what route this illness will take him. When will he forget me? Will he be aggressive or violent?
We've said 'I love you' to each other every day for 61 years and so far, he's still doing that.
The other day he was saying it's awful when you can't remember things. I lightheartedly said with a smile, 'Well as long as you remember you love me.' He said, 'I'll always remember that as long as I live, and even after that.' I felt so sad and upset I had to leave the room cos I know it's not true. I suppose it's a blessing he doesn't know.
Thank you to TP readers for allowing me to indulge in my own sadness even though you all have your own. I think we have become an army of counsellors to each other!

 

[kindred]

I’m now in a situation I really am worried about, and not sure what to do or where to go.
I saw the surgeon this morning and he is going to operate in January, So at least I have time to get things in place for my husband.
This is something I’ve been dreading. As long as I am ok, can keep going, then I can sort things for my husband. But I have no choice but to get this sorted, I’m in to much physical pain.
So I need to find somewhere that will take my husband for at least a week, the surgeon says it should be two weeks.
Where do I go, how do I do that, will it be easy to find some care home that will look after him, his dementia and his acute urinary incontinence? I know that we will need to fund this.
I’ve made an appointment to see the GP.... is that the first step?
Or should I get in touch with local social services?
What to do?
Where to go?
We have never needed others to be involved.... now I’m in uncharted territory, and it’s a massive worry.
Any advice will be so welcome.
Thank you, love B xx

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

 

[Grahamstown]

Stupid thread, but I’m sitting here trying to be patient, looking at the man I’ve been with for nearly 50 years and wondering where he has gone?
When did all this really start?
Why him?
Why me?
What have we done to deserve this?
It’s breaking my heart?
I can’t believe that tomorrow could be worse than today.
That it can’t get easier than today, and today is so hard.
Life can be so cruel.
I am not sure who has him, but I want him back.
He’s mine....

Dear @Sad Staffs , you posted this on my husband’s birthday when we were on holiday and you say what I feel as I grieve for my lost husband. He has reached a good age and is not struck down young like so many, but the loss is just as great. It’s only the support on Talking Point that gives me any comfort because nobody who doesn’t experience the daily struggle can possibly help as much.

 

[canary]

Hello @mickeyplum No-one ever knows what will happen to someone with dementia. Everyone is different. Not everyone becomes violent and mum recognised me right up until she passed away. Well, she couldnt always remember my name and relationships were a bit tricky, but she knew who I was and her face lit up every time she saw me. One of the last things she said was to tell me she loved me.

Dont try and look too far into the future and constantly be trying to second guess everything - dementia doesnt fit into a nice neat little box. Enjoy what you have and deal with problems as and when they arise
xx

 

[mickeyplum]

Hello @mickeyplum No-one ever knows what will happen to someone with dementia. Everyone is different. Not everyone becomes violent and mum recognised me right up until she passed away. Well, she couldnt always remember my name and relationships were a bit tricky, but she knew who I was and her face lit up every time she saw me. One of the last things she said was to tell me she loved me.

Dont try and look too far into the future and constantly be trying to second guess everything - dementia doesnt fit into a nice neat little box. Enjoy what you have and deal with problems as and when they arise
xx

 

[mickeyplum]

Hello @mickeyplum No-one ever knows what will happen to someone with dementia. Everyone is different. Not everyone becomes violent and mum recognised me right up until she passed away. Well, she couldnt always remember my name and relationships were a bit tricky, but she knew who I was and her face lit up every time she saw me. One of the last things she said was to tell me she loved me.

Dont try and look too far into the future and constantly be trying to second guess everything - dementia doesnt fit into a nice neat little box. Enjoy what you have and deal with problems as and when they arise
xx

 

[mickeyplum]

Thank you Canary for your reassuring words. As you can see, my biggest fault is in trying to look into the future and letting my imagination run wild. My situation seems so much less to cope with than most people's on TP and I feel I should be thanking my lucky stars instead of moaning. But It helps so much to get things off my chest and to know that many people will respond.

 

[AliceA]

All love to you Sad Staffs, just thinking of you and wishing you well.
MickeyPlum, just take care of yourself, like you I wish for more energy.
Busy day so trying to gather myself to make tea!

 

[Sad Staffs]

Oh B it is so very worrying for you, I’m afraid I don’t have lots of advice but just to let you know I shall be thinking about you. As we know, you will get lots of good advice from here as you have already from @canary. I wouldn’t know where to start, I feel I get emotional support from this forum but need to know where I can get local support when we need it (what for I don’t know but I’m starting to feel I/we need something). We are going to the Dementia Cafe tomorrow - my OH asked if we could go. I’m lucky!!!?? that he accepts his diagnosis although I feel really cruel when he forgets and says he knows something is wrong but what exactly is it and then is distressed all over again when I tell him as gently as possible. He was so low the other day he said he will just go as he didn’t want me to have to look after him. Twenty minutes later he asked if he is still in the army - he was in 25 years but came out nearly 30 years ago - it’s all so draining. Not as draining as your situation especially being in constant pain. I wish for you that you are pain free after your op and feel sure things will fall into place regarding having your husband taken care of while you are recovering - I hope you give yourself as long as you can for recovery which will benefit you both. Take care B and as I say I will be thinking about you. S xxx

Hi S, yes, it’s all a bit of a worry. It’s not knowing where to start! The surgeon operates at a private hospital paid for by the NHS (another principal gone out the window!!) so they have no input to any support you might need. But he did my last surgery, and I’m comfortable with him, but in retrospect I should have gone into our local hospital. But the wait would have been longer. So, as @canary said I will contact SS after seeing my GP (I need more tramadol!!) and go from there.
I hope your visit to the dementia cafe goes well, let me know how you get on. I haven’t plucked up courage to go to one yet.
It must have been so upsetting when your husband asked about the army, and just so very sad that he told you to go. It’s all so distressing, sad, and soul destroying. I feel I now have a love/hate relationship with my husband. I love him so much, but I don’t always like him... then I feel so guilty.
Something I hope will make you smile. I got the inevitable sweets in for trick or treat. Around 4.30 the door bell went x 3 girls and their Moms. Then nothing. Unknown. I puzzled over this. Opened the door this morning to find the doorbell on the door mat! All those disappointed children, and that mass of sweets. Now who will eat them? Me!!
Love B xx

 

[Sad Staffs]

I am 84,my husband 90 and we've been married 61 years. I sometimes think if I was 20 years younger I'd have more energy and patience to cope with him, but then I read on TP how you younger ones have had to give up jobs and I really feel for you. It must be a lot worse to be young enough to go out and enjoy your retirement and yet have this awful disease preventing you.
We have had a good retirement until about 3 years ago so I know I should count my blessings, and I do. I have no idea what route this illness will take him. When will he forget me? Will he be aggressive or violent?
We've said 'I love you' to each other every day for 61 years and so far, he's still doing that.
The other day he was saying it's awful when you can't remember things. I lightheartedly said with a smile, 'Well as long as you remember you love me.' He said, 'I'll always remember that as long as I live, and even after that.' I felt so sad and upset I had to leave the room cos I know it's not true. I suppose it's a blessing he doesn't know.
Thank you to TP readers for allowing me to indulge in my own sadness even though you all have your own. I think we have become an army of counsellors to each other!

Thank you for your lovely post, and thank you for sharing that you tell each other I love you every day. That must be very special.
It doesn’t matter what age you are, dementia is just a cruel disease that robs people of so much. I love that you still love each other and long may it continue for you.
I just reread your post and it really is heart warming, so again thank you.
Take care, love B xx

 

[Sad Staffs]

All love to you Sad Staffs, just thinking of you and wishing you well.
MickeyPlum, just take care of yourself, like you I wish for more energy.
Busy day so trying to gather myself to make tea!

Thanks @AliceA ... love to you B xx

 

[rhubarbtree]

Hi Sad Staffs.

A few weeks ago my knee was so painful and I had to wait weeks for an xray. Fearing the worst I searched online for dementia home and hobbled off to visit one while OH was at day centre. Like you I do not have anyone who could take on my OH full time, he is so needy. I think I was influenced by my pain but home seemed to be ok and had vacancies. Just knowing that eased my mind somewhat and I struggled on. When I went back to doctors I mentioned that I might have to seek respite and he suggested I speak to their Elderly Patient Nurse. She was an expert, had managed a local home and knew all the local homes. She felt the one I had looked at would probably be the best and she also gave lots of advice. We will be self funding so I cannot see any reason to involve social services. I wonder if your surgery have an expert?

 

[Manc70]

Hi S, yes, it’s all a bit of a worry. It’s not knowing where to start! The surgeon operates at a private hospital paid for by the NHS (another principal gone out the window!!) so they have no input to any support you might need. But he did my last surgery, and I’m comfortable with him, but in retrospect I should have gone into our local hospital. But the wait would have been longer. So, as @canary said I will contact SS after seeing my GP (I need more tramadol!!) and go from there.
I hope your visit to the dementia cafe goes well, let me know how you get on. I haven’t plucked up courage to go to one yet.
It must have been so upsetting when your husband asked about the army, and just so very sad that he told you to go. It’s all so distressing, sad, and soul destroying. I feel I now have a love/hate relationship with my husband. I love him so much, but I don’t always like him... then I feel so guilty.
Something I hope will make you smile. I got the inevitable sweets in for trick or treat. Around 4.30 the door bell went x 3 girls and their Moms. Then nothing. Unknown. I puzzled over this. Opened the door this morning to find the doorbell on the door mat! All those disappointed children, and that mass of sweets. Now who will eat them? Me!!
Love B xx

Hi B, I’ve got the picture in my head, you eating Smarties googling ‘how to fix a doorbell’, so funny. We are on the outskirts of a village and don’t get a ‘passing trade’ of trick or treaters. We’ve got a 16 year old grandson who is 6’2” and we went to his Passing In parade at Army College last week. However tall, or old he got he was a pumpkin at Halloween for years, the costume started off round his ankles and ended up like a tutu. He is on leave and didn’t disappoint when he came round yesterday although this time he looked more punk than pumpkin. And yes he did get his Smarties. You hit the nail right on the head again with the love/hate relationship. I’ve loved my husband for 47 years, had ups and downs but always loved him, but this insidious disease makes it so difficult at times and like you it makes me feel so guilty. Love hearing from you. Love S xx

 

[Sad Staffs]

Dear @Sad Staffs , you posted this on my husband’s birthday when we were on holiday and you say what I feel as I grieve for my lost husband. He has reached a good age and is not struck down young like so many, but the loss is just as great. It’s only the support on Talking Point that gives me any comfort because nobody who doesn’t experience the daily struggle can possibly help as much.

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

 

[Sad Staffs]

Hi B, I’ve got the picture in my head, you eating Smarties googling ‘how to fix a doorbell’, so funny. We are on the outskirts of a village and don’t get a ‘passing trade’ of trick or treaters. We’ve got a 16 year old grandson who is 6’2” and we went to his Passing In parade at Army College last week. However tall, or old he got he was a pumpkin at Halloween for years, the costume started off round his ankles and ended up like a tutu. He is on leave and didn’t disappoint when he came round yesterday although this time he looked more punk than pumpkin. And yes he did get his Smarties. You hit the nail right on the head again with the love/hate relationship. I’ve loved my husband for 47 years, had ups and downs but always loved him, but this insidious disease makes it so difficult at times and like you it makes me feel so guilty. Love hearing from you. Love S xx

You have made me laugh... a 6’2” grandson..... at 16!!! dressed as a pumpkin. Ok, perhaps not this year, but it was a wondrous vision.
And, how proud you must be to have seen him at his Army College parade. I hope you took photos for your lovely memory bank. If I had stood next to your grandson I might have come up to his waist, well, perhaps his armpit!

So, I’m hoping I don’t need any blood tests any time soon, as I could well be pushing the diabetes borderline! On the way back from the hospital I was determined to NOT eat the sweets and chocolates..... I’m ashamed to say that I have scoffed quite a few, then hid the packets, then of course couldn’t finish my dinner.

And.... my husband was determined to put the doorbell back on. He was so determined I left him to it. Well, it’s back on, and he changed the batteries. It now, for some reason, goes bing, instead of bing bong.... no idea why, but I’m very happy and he is very proud that he at least gave me back my doorbell! And at least a bing! I’m happy with a bing.
Now .... sweeties or not to sweeties?
Love B xx

 

[Sad Staffs]

Hi Sad Staffs.

A few weeks ago my knee was so painful and I had to wait weeks for an xray. Fearing the worst I searched online for dementia home and hobbled off to visit one while OH was at day centre. Like you I do not have anyone who could take on my OH full time, he is so needy. I think I was influenced by my pain but home seemed to be ok and had vacancies. Just knowing that eased my mind somewhat and I struggled on. When I went back to doctors I mentioned that I might have to seek respite and he suggested I speak to their Elderly Patient Nurse. She was an expert, had managed a local home and knew all the local homes. She felt the one I had looked at would probably be the best and she also gave lots of advice. We will be self funding so I cannot see any reason to involve social services. I wonder if your surgery have an expert?

Hello @rhubarbtree
Thank you so much, for such useful and helpful information.
I will talk to my GP next week and hope they are as helpful and supportive as your doctor.
I hate the thought of not being able to look after my husband. He is like Jekyll and Hyde, but when he is ok, he seems so ok, then he does or says something, or gets obsessed with something, and I look at him to see if he is joking. But no, it is of course his dementia.
In reality someone locally is going to have to help me sort my husbands care as my surgery and recovery won’t happen without that being in place.
We too will be self funding. But the thought of him being in any sort of care for a couple of weeks and hardly any visitors is also upsetting.
Gosh, life can be tough can’t it.
Take care, and thank you again for your help. Love B xx