Who has stolen my husband?

kindred

Registered User
Apr 8, 2018
2,937
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Hi @CatAM
Thank you for your post. I’m glad you have found some of the posts useful and I know from experience that it is good to realise that you are not alone, so many of us are experiencing the same or similar issues.
I think dementia sometimes confuses the carer. Many times I look at my husband and wonder whether he is winding me up, just being idle and lazy, and definitely just being difficult and aggressive for the sake of it. But then he does something that would be so simple and he can’t do it, or grasp it.
We are going through a stage where my husband is trying to prove that he can do what he has always done. I think this is being prompted by me going into hospital and he knows he won’t be around to care for me as I’m trying to book him in for two weeks respite. He’s fighting against it. It’s bringing out additional aggression. He’s being cruel and spiteful, but I guess I know why. It doesn’t make it any easier.
I don’t think they can admit they are in the wrong, or say sorry, or ask for help. Inside somewhere my husband is still that strong person that took care of me, was always there to protect me. Now he knows but can’t admit that he can’t do those things. It’s role reversal, and it’s hard for us both.
Take care of yourself. Always visit TP, you will find comfort, support and advice. It has been so important for me.
Thinking of you, B x
B just a short message to say what a fantastic woman you are, and how much your thread is helping others, thank you with all heart. all love, Gxxx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Dear Geraldine @kindred
I am so moved by your message. Thank you. It means so much coming from you.
I wish that I were a better person, perhaps then I would learn to not react to my husband so much, and our life might be a little more peaceful.

Just to let you know that I took matters into my own hands this morning. I Googled local care homes, and tomorrow I’m taking my husband to visit one where, as luck would have it (hopefully this is not a negative!) they have a single en suite room available for when I am in hospital and recovering.
Husband has agreed to visit, so we will see what happens. Fingers crossed.
I’ll let you know. Just hope this nasty chesty cough I’ve now got clears up before my pre op!!

My husband keeps referring to me having him locked away. I’m feeling positive about the phone call and visit. I am very definitely not having him locked away. But.... if he continues to be as grumpy and aggressive which seems to be getting worse, then I might! Only joking....

Take care Geraldine, and again thank you so much for being there for so many of us. Love B xx
 
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kindred

Registered User
Apr 8, 2018
2,937
0
Dear Geraldine @kindred
I am so moved by your message. Thank you. It means so much coming from you.
I wish that I were a better person, perhaps then I would learn to not react to my husband so much, and our life might be a little more peaceful.

Just to let you know that I took matters into my own hands this morning. I Googled local care homes, and tomorrow I’m taking my husband to visit one where, as luck would have it (hopefully this is not a negative!) they have a single en suite room available for when I am in hospital and recovering.
Husband has agreed to visit, so we will see what happens. Fingers crossed.
I’ll let you know. Just hope this nasty chesty cough I’ve now got clears up before my pre op!!

My husband keeps referring to me having him locked away. I’m feeling positive about it.
Take care Geraldine, and again thank you so much for being there for so many of us. Love B xx
Thank YOU darling and congratulations on your courage and doing this. No, having a room going is not a sign of anything, it's just the way things go, full, room going, full, room going etc. Normal.
so so well done, and get that cough cleared up my darling. all love, Gxx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
I should be able to work this out, but will I need to put labels in his clothes when he goes into respite?
Any other helpful tips would be really welcome.
Thank you B x
 

AliceA

Registered User
May 27, 2016
2,911
0
I think some idea of what is needed as a rough idea for a respite stay, or living in a care home environment would be helpful to many.
I remember the tedious job of labelling when the children were at school.
What happens about teeth and hearing aids. Such fiddly things.
Perhaps there is a fact sheet but personal experience would be helpful.
Perhaps this needs a new Thread?
 

kindred

Registered User
Apr 8, 2018
2,937
0
I should be able to work this out, but will I need to put labels in his clothes when he goes into respite?
Any other helpful tips would be really welcome.
Thank you B x
You'll probably find that just putting his initials or his first name in biro will do the job. Ask the home, they will tell you. Keith's home accepts any form of identification, so I just use black biro on the labels. Gxx. What I found useful was that I already had a bad packed for Keith at the time of his accident. I packed it six months before his accident as a just in case thing in case I got ill (I was at the time I packed it, and thought it might get worse). Just having that ready was such a help.
 

kindred

Registered User
Apr 8, 2018
2,937
0
I should be able to work this out, but will I need to put labels in his clothes when he goes into respite?
Any other helpful tips would be really welcome.
Thank you B x
Me again! A sponge bag with razors, shower jell and shaving cream needed as well usually. Plus medications and you'll need to tell the home what medications he is on. I don't know what the position with pull up pads is, but wise to have a supply ready to take. There's no more than you would pack for the average short holiday really!
Gxxx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
You'll probably find that just putting his initials or his first name in biro will do the job. Ask the home, they will tell you. Keith's home accepts any form of identification, so I just use black biro on the labels. Gxx. What I found useful was that I already had a bad packed for Keith at the time of his accident. I packed it six months before his accident as a just in case thing in case I got ill (I was at the time I packed it, and thought it might get worse). Just having that ready was such a help.
Because of his frequent hospital stays we have a wash bag with all the personal items kept handy.
A biro sounds good. I lay awake most of last night thinking I would buy tape, sew strips in and write on those. Not sure I would finish before my op!
B xx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
Me again! A sponge bag with razors, shower jell and shaving cream needed as well usually. Plus medications and you'll need to tell the home what medications he is on. I don't know what the position with pull up pads is, but wise to have a supply ready to take. There's no more than you would pack for the average short holiday really!
Gxxx
He has a neatly trimmed beard, although it can be a bit jaunty these days! I’ll make sure he trims it before he goes and then they can use him as a Father Christmas substitute if required:D:).
He’s coming round to it happening, he’s worrying that I will arrange his repeat prescription before he goes.
Yes, he needs 4 day pads and one complicated night pad with a booster pad. He can’t do any of these himself as he can’t work out things like back to front, inside out, upside down. So I, or someone, has to do his pads.
Love B xx
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
I think some idea of what is needed as a rough idea for a respite stay, or living in a care home environment would be helpful to many.
I remember the tedious job of labelling when the children were at school.
What happens about teeth and hearing aids. Such fiddly things.
Perhaps there is a fact sheet but personal experience would be helpful.
Perhaps this needs a new Thread?
Great idea... it’s something that people could add to. B x
 

AliceinWonderland

New member
Nov 9, 2018
8
0
Hello @AliceinWonderland
There is so much for you to think about, worry about, and none of it comes easily. We all find ourselves in a situation we just don’t want. So much of our future has been snatched away from us.
I only joined TP in the summer, and I have learned so much, had so much support and comfort. If there is a blessing then it is being able to express your feelings on here, and someone will always be there to offer support and guidance.
Take care, thinking of you, B x
Thank you.
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
So.... yesterday I found a local care home that have an en suite room and although my husband is far from keen he came with me to look at it this morning. The room was ideal. The down side is that my husband looked like a spring chicken compared to the residents. He’s also naturally unsociable, grumpy really, so I think he would spend most of the 2 weeks in his room.

Then the bombshell. After my call yesterday they had another call from a couple who need the room on a permanent basis for their mother. I understand why they would financially need to let them have the room rather than us. However we are self funding, the other lady is SS funded. It’s so upsetting because of my husbands acceptance of the situation. I have to phone the owner in the morning to plead our case!

However, the assistant manager did tell me that I am entitled to 6 weeks respite funded by SS each year. Is this true? Am I entitled to free respite even though we have savings above whatever the threshold might be?

She also told me that I should be claiming carers allowance. I didn’t know this either. Am I? Any thoughts would be welcome.

My husband and I have always worked until retirement, made provision for our retirement, although we had intended that provision for a comfortable retirement and holidays etc!! Who would have thought our lives would come to this.

So, I’m a bit upset now as I thought I had it sorted. My husband is also upset. He has now accepted he has to go into respite and I think he feels let down. Nothing seems to ever run smoothly does it!!
 

AliceA

Registered User
May 27, 2016
2,911
0
How difficult when you had done the ground work in getting an agreement. I have never heard about 6 weeks respite allowance.
I do know once a state pension is claimed it is called a benefit so it is not possible to claim Carers allowance as well. Do not take my word though check it out. Of course with women having to work longer it might crack in.

Could you tell SS that you are desperate because without this operation you will have to stop caring. See if that tempts them to step up and help. X
 

Sad Staffs

Registered User
Jun 26, 2018
696
0
How difficult when you had done the ground work in getting an agreement. I have never heard about 6 weeks respite allowance.
I do know once a state pension is claimed it is called a benefit so it is not possible to claim Carers allowance as well. Do not take my word though check it out. Of course with women having to work longer it might crack in.

Could you tell SS that you are desperate because without this operation you will have to stop caring. See if that tempts them to step up and help. X
Good idea @AliceA ... I will have a good go at SS tomorrow. I’m told that we are on the system just waiting for a social worker to be allocated. My worry is I’m running out of days! And it’s worrying my husband even more. Now he’s accepted it will happen he needs to know what and where. He’s never been good if he doesn’t have total control. Well, you know how much real control he is likely to have these days!
But SS have a duty of care so I will make that point tomorrow.
Thanks for your advice, I’m really grateful as I’m floundering a bit or a lot at the moment. Love B xx
 

kindred

Registered User
Apr 8, 2018
2,937
0
So.... yesterday I found a local care home that have an en suite room and although my husband is far from keen he came with me to look at it this morning. The room was ideal. The down side is that my husband looked like a spring chicken compared to the residents. He’s also naturally unsociable, grumpy really, so I think he would spend most of the 2 weeks in his room.

Then the bombshell. After my call yesterday they had another call from a couple who need the room on a permanent basis for their mother. I understand why they would financially need to let them have the room rather than us. However we are self funding, the other lady is SS funded. It’s so upsetting because of my husbands acceptance of the situation. I have to phone the owner in the morning to plead our case!

However, the assistant manager did tell me that I am entitled to 6 weeks respite funded by SS each year. Is this true? Am I entitled to free respite even though we have savings above whatever the threshold might be?

She also told me that I should be claiming carers allowance. I didn’t know this either. Am I? Any thoughts would be welcome.

My husband and I have always worked until retirement, made provision for our retirement, although we had intended that provision for a comfortable retirement and holidays etc!! Who would have thought our lives would come to this.

So, I’m a bit upset now as I thought I had it sorted. My husband is also upset. He has now accepted he has to go into respite and I think he feels let down. Nothing seems to ever run smoothly does it!!
I am sorry sweetheart, and I do think Alice's idea is a great one about saying how without this operation you have to stop being a carer ...
I too have never heard of having 6 weeks funded by SS. New one on me, but let us not look gift horse in mouth. Carer's allowance? Not got that either.
As a general point, I thought Keith was pretty young by comparison with others in his nursing home, but little by little as they have birthdays and I learn their ages, I see most are far younger than i thought and nearer Keith's age! Darling I do hope you get this sorted soon. You could always ask the assistant manager if she can recommend another home nearby?
with love and thoughts, Geraldinexxx
 

Rosebush

Registered User
Apr 2, 2018
1,478
0
Good idea @AliceA ... I will have a good go at SS tomorrow. I’m told that we are on the system just waiting for a social worker to be allocated. My worry is I’m running out of days! And it’s worrying my husband even more. Now he’s accepted it will happen he needs to know what and where. He’s never been good if he doesn’t have total control. Well, you know how much real control he is likely to have these days!
But SS have a duty of care so I will make that point tomorrow.
Thanks for your advice, I’m really grateful as I’m floundering a bit or a lot at the moment. Love B xx
You should be able to get attendance allowance, Age uk filled the forms in for us, hope you get respite sorted soon. Love Lxx
 

AliceA

Registered User
May 27, 2016
2,911
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Age UK filled in AA forms for us, they were brilliant. I think we have to drop any pride in DIY the questions can be subtle! I did the reduction in Council Tax that took ages but finally worked out after wrong forms etc.
It seems unfair that people on a pension cannot get a Carers Allowance it would help with sitters etc.
The AA is soon eaten up with transport and extra expenses. However it is a life saver too.
 

AliceA

Registered User
May 27, 2016
2,911
0
Good idea @AliceA ... I will have a good go at SS tomorrow. I’m told that we are on the system just waiting for a social worker to be allocated. My worry is I’m running out of days! And it’s worrying my husband even more. Now he’s accepted it will happen he needs to know what and where. He’s never been good if he doesn’t have total control. Well, you know how much real control he is likely to have these days!
But SS have a duty of care so I will make that point tomorrow.
Thanks for your advice, I’m really grateful as I’m floundering a bit or a lot at the moment. Love B xx

Yes, it is so difficult just when someone has agreed to go along with an idea, people have no idea. I have just broached the idea of a day centre, so I am keeping my fingers and toes crossed. A day for the admin of life and catch with chores would help for a start. So let us no how you get on, good fortune for tomorrow, appeal to their good nature, explain how distressed you are, Alice xxx