So disappointed

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
My daughter is having a lot of medical investigations going on at the moment locally and it's all quite complicated, it all involves this awful mesh stuff that has been in the news a lot lately,anyway she had an operation where they put this mesh in 2 yrs ago and shes been unwell, and lots of pain ever since. Shes now under a consultant based in Bristol, Wales as he specialises in this field. My problem is I promised her I would do with her to her appointment inn2nweeks time, it's a 4 and half hour drive away and shes not sure what going to happen they have told her they have found something else on her latest scan so obviously she is nervous, I spoke to hubby about this a couple months ago when I knew I needed to go with her, we have to stay overnight as it's an early appointment. I kept reminding him about it asking him if he was ok to go to short respite, he agreed reluctantly, I picked out a really lovely place overlooking the sea. The manager there is coming to assess him tomorrow, I spoke to him about this and reminded him who was coming and all hel broke loose.
Hes defiant hes not going anywhere I could do what I want but hes staying put at home. He was really shouting, calling me selfish !!!! He cant do anything to look after himself, he can hardly walk, he has falls and has now started to wet himself. I'm so very upset and angry with him. He says he will stay on his own but I know he couldnt do that, he cant even carry a cup of tea nor glass of water. The assers are coming tomorrow and I'm still going to let them and hope they can talk him round but not holding my breath. I'm really upset and worried about my daughter, I really cant bear to look at my hubby at moment, hes always been very selfish for 57 yrs we've been married and even under the vascular dementia umbrella it's still there deep down . I dont know what to do. I feel sick being so upset., its breaking my heart for my daughter.. it's strange because when he goes to his day centre, everyone says how great he is, they all like him and then driver of the transport bus that brings him home, hrnthinks hes a "top bloke "
But when he comes home he says was a miserable day it was and he doesn't want to go anymore and hes really nasty to me ignores me if I talk to him never a please or thankyou but chats all the time at day centre. I really dont like him at all at the moment but I'm hoping and praying h changes his mind about my hospital trip. it's not looking likely though.
 
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jenniferjean

Registered User
Apr 2, 2016
925
0
Basingstoke, Hampshire
I do feel sorry for you and I hope when the manager comes today that your husband comes round to the idea. I'm hoping this is all a front he's putting on. Fingers crossed for you.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,455
0
Kent
If your daughter has no one other than you to accompany her @pevensey I would go with her.

Both your husband and your daughter need support. There is a solution for your husband but not for your daughter so that would be my rationale.

This is what I would discuss with the assessors.
 

silver'lantern

Registered User
Apr 23, 2019
208
0
I would go with my Daughter. Supporting her would overrule his issues I am afraid. I would do all I could to make sure he was as safe as he could be , either respite or cares/family whatever was best. and go.....I would stress to him that you are going with her and nothing he does will stop you, so it up to him where he goes. I feel life is put on hold enough with this disease. But supporting a Daughter at a stressful time is not something I would miss out on. I think sometimes we give our PwD the permission to act as they do with our actions and willingness to meet their demands. I feel sometimes they just have to be told...this once this is how it is going to be.
Knowing I had done my best in the situation and that's all you can do. Whatever happens during the time you are away is not an issue. The needs of your Daughter and what she is going through overrule and over take what's going on at home. She will appreciate your support and will mean a lot to her that you do it. She needs you with her....so go.
Not everyone will agree with me I know. But this is the way I would do it.
I hope it all works out....be firm
and I hope all works out with your Daughter too
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
My daughter is having a lot of medical investigations going on at the moment locally and it's all quite complicated, it all involves this awful mesh stuff that has been in the news a lot lately,anyway she had an operation where they put this mesh in 2 yrs ago and shes been unwell, and lots of pain ever since. Shes now under a consultant based in Bristol, Wales as he specialises in this field. My problem is I promised her I would do with her to her appointment inn2nweeks time, it's a 4 and half hour drive away and shes not sure what going to happen they have told her they have found something else on her latest scan so obviously she is nervous, I spoke to hubby about this a couple months ago when I knew I needed to go with her, we have to stay overnight as it's an early appointment. I kept reminding him about it asking him if he was ok to go to short respite, he agreed reluctantly, I picked out a really lovely place overlooking the sea. The manager there is coming to assess him tomorrow, I spoke to him about this and reminded him who was coming and all hel broke loose.
Hes defiant hes not going anywhere I could do what I want but hes staying put at home. He was really shouting, calling me selfish !!!! He cant do anything to look after himself, he can hardly walk, he has falls and has now started to wet himself. I'm so very upset and angry with him. He says he will stay on his own but I know he couldnt do that, he cant even carry a cup of tea nor glass of water. The assers are coming tomorrow and I'm still going to let them and hope they can talk him round but not holding my breath. I'm really upset and worried about my daughter, I really cant bear to look at my hubby at moment, hes always been very selfish for 57 yrs we've been married and even under the vascular dementia umbrella it's still there deep down . I dont know what to do. I feel sick being so upset., its breaking my heart for my daughter.. it's strange because when he goes to his day centre, everyone says how great he is, they all like him and then driver of the transport bus that brings him home, hrnthinks hes a "top bloke "
But when he comes home he says was a miserable day it was and he doesn't want to go anymore and hes really nasty to me ignores me if I talk to him never a please or thankyou but chats all the time at day centre. I really dont like him at all at the moment but I'm hoping and praying h changes his mind about my hospital trip. it's not looking likely though.
Hi.If he won’t go into respite then get carers in. Tell him it is “Non negotiable”.But you have to be firm..
I would not miss out on my daughter because of him..
He has a choice. But he sounds like my dad.Everybody loves my dad as he is such a gentleman! Really??He is only like that when he is getting his own way...
 

dancer12

Registered User
Jan 9, 2017
498
0
Mississauga
My daughter is having a lot of medical investigations going on at the moment locally and it's all quite complicated, it all involves this awful mesh stuff that has been in the news a lot lately,anyway she had an operation where they put this mesh in 2 yrs ago and shes been unwell, and lots of pain ever since. Shes now under a consultant based in Bristol, Wales as he specialises in this field. My problem is I promised her I would do with her to her appointment inn2nweeks time, it's a 4 and half hour drive away and shes not sure what going to happen they have told her they have found something else on her latest scan so obviously she is nervous, I spoke to hubby about this a couple months ago when I knew I needed to go with her, we have to stay overnight as it's an early appointment. I kept reminding him about it asking him if he was ok to go to short respite, he agreed reluctantly, I picked out a really lovely place overlooking the sea. The manager there is coming to assess him tomorrow, I spoke to him about this and reminded him who was coming and all hel broke loose.
Hes defiant hes not going anywhere I could do what I want but hes staying put at home. He was really shouting, calling me selfish !!!! He cant do anything to look after himself, he can hardly walk, he has falls and has now started to wet himself. I'm so very upset and angry with him. He says he will stay on his own but I know he couldnt do that, he cant even carry a cup of tea nor glass of water. The assers are coming tomorrow and I'm still going to let them and hope they can talk him round but not holding my breath. I'm really upset and worried about my daughter, I really cant bear to look at my hubby at moment, hes always been very selfish for 57 yrs we've been married and even under the vascular dementia umbrella it's still there deep down . I dont know what to do. I feel sick being so upset., its breaking my heart for my daughter.. it's strange because when he goes to his day centre, everyone says how great he is, they all like him and then driver of the transport bus that brings him home, hrnthinks hes a "top bloke "
But when he comes home he says was a miserable day it was and he doesn't want to go anymore and hes really nasty to me ignores me if I talk to him never a please or thankyou but chats all the time at day centre. I really dont like him at all at the moment but I'm hoping and praying h changes his mind about my hospital trip. it's not looking likely though.
Hi pevensey:

Sounds just like my husband nice to everyone & to me he's a beast.:)
 

Pink-geranium

Registered User
Nov 27, 2019
16
0
london
My husband isn't always nice to others, either. I had a couple of days away lined up, my sister was going to come and stay with him, and very glad to help. Husband: I'm not having that, I can't stand her. I thought, stuff it, it's up to him. I went away anyway despite misgivings. No problems. You should go with your daughter, Pevensey, your husband is still capable of choice.
 

Lellyhelly

Registered User
Jul 27, 2019
39
0
I agree Pevensey with other members. Your daughter needs you just now, hubby is going to carry on needing you for sometime. This should not be to the exclusion of other family members, stand firm,he is being selfish and unfair. All the best, you shouldn't have to be choosing between the two of the.
 

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
I agree Pevensey with other members. Your daughter needs you just now, hubby is going to carry on needing you for sometime. This should not be to the exclusion of other family members, stand firm,he is being selfish and unfair. All the best, you shouldn't have to be choosing between the two of the.
Thankyou everybody for all your replies and advice, a lovely lady came to assess hubby for respite at her care home, I still let her come even though he was adamant he wasnt going, i thought maybe she could talk him round and she did try but he was having none of it, and she was really lovely with him, but he kept saying do t bother talking to me like that because your not going to change my mind. Just because "She wants to go off and enjoy herself " I got upset then and left the room but hes got no empathy he never has not for the past 57yrs. So in a nut shell that's how we left it BUT I was determined I was going to support my daughter and he wasnt going to stop me I'm not normaly like that with him , I suppose ive always been scared of him, BUT I had decided just this evening that I would get carers in for the evening and night and the next day, we will be home by early evening the next day all being well. So you must have all read my mind. He wont like it, I know he wont and when i tell him the plan tomorrow hes going to hit the roof again and I wouldn't be surprised if he turns them away when they get there, we have a key safe so they can let themselves in, but if he does do that I wont be there to see it and they will have to sort it out. I'm so happier in my mind now I have decided that's what happening and will sort it all out tomorrow. And my daughter will be proud of me because she always says I never stand up to him enough and I've let him ruin my life over the years which is true..but shes always been there with a shoulder for me to cry. Take care everyone be good to yourselves
 
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Lirene

Registered User
Sep 15, 2019
243
0
Your story could be my story and yes, I too have been frightened of my husband and have kept quiet and tried to keep the peace for years. Bless you and my prayers are with you xx
 

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
Well done! Believe me when you have done it once,it is easier the next time!
Just an update on my trials and tribulations of being able to go to this extreamly important hospital app with my daughter, Its in Bristol, Wales which is 4 and half hours drive so have to stay overnight as her app,is in morning and we wouldn't get there in time if we left on day of app. SO hubby absolutely refused to go for few days respite, I still let the care home manager come to asses him, thinking he might be more compliant with her, but he told her to leave , He very definitly cant be on his own, he has falls , can hardly walk and cant do very much for himself, He had 2 falls in the early hrs of the morning today, so my next I thought ingenious plan was to have extra carers in s he can still be at home, couple extra in the day and one overnight. BUT NO, he refused, shouting nobody
was coming in he doesn't want anybody coming in and if they did he would make them leave, , he got very verbal, and I'm ashamed to say I really shouted it him and I THINK I swore at him which I never do, I told him to please do either one or the other, do it for me PLEASE but he just carried on shouting, so I'm back to square one, but I'm more determined than ever that I need to be there for my daughter, even if we have to drive about an hour into our journey and phone S/S that hes home alone and we will be home the next day hopefully. Prob not brave enough though to do that, but would love to just to show hubby its NOT all about him.so I'm still struggling for solution and haven't got much time now. I HATE THIS DISEASE and at moment I really dont want to be his carer anymore., I feel like throwing the towel in. Hes got no empathy for me or consideration, it's like the difficult person he was for years in our marriage is coming back, and that's scary to have that along with the vascular dementia.
 
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Dimpsy

Registered User
Sep 2, 2019
1,906
0
Hi @pevensey, today my husband had day surgery. I should have been with him, but couldn't leave my mum (lives with us) on her own - one of those things, OH had a last minute phone call for admission with no time to organise care, but I have been feeling like a failure and miserable all day long; I let my OH down.

In the next few weeks my husband is having a major op to correct an abdominal aortic aneurysm.

Come hell or high water I WILL be with him for that. I have organised daughters, friends and neighbours and also visited a local CH, one way or another mum will have to take a back seat while I am with my husband.

Your daughter needs you, please stay strong for her sake.

Does your husband always shout at you to get his own way?
Do you give in for a quiet life? (my sister does that, she is married to a bully).

If you are stand firm and calm (don't shout) and tell him that you ARE supporting your daughter (is she your OH child as well?), and will be away overnight, can you get him to make the decision about the type of care he would prefer in your absence or is his dementia at the stage where he could not do that?

The only other suggestion I have is going back to the short respite plan, if he likes going to the day centre, can you tell him he is going to the day centre as usual, just not mention he will be staying overnight and smuggle out an overnight bag. If he is usually pleasant to other people outside your home, he should be genial in the care home and you won't have to worry about him.
All the best to you and your daughter (and husband).
 

Roseleigh

Registered User
Dec 26, 2016
347
0
I agree with others here. Tell him him its not negotiable that you are going with your daughter. Tell him if he doesnt let the carers in and he falls it will be totally his own fault, which it will! And I bet when hes hungry he'll be glad to see the carers! And I bet he will let them in.

Your daughter has a future but your husband only has a past now. I would actually tell him, if you think he will understand, that your daughter is young, and he is old, and she needs support, and he's a selfish old man because she is more important than him, and he should agree with that! Does he want his daughter to remember him as a selfish git, or a loving dad who would sacrifice his own comfort for her?
 

silver'lantern

Registered User
Apr 23, 2019
208
0
The only other suggestion I have is going back to the short respite plan, if he likes going to the day centre, can you tell him he is going to the day centre as usual, just not mention he will be staying overnight and smuggle out an overnight bag. If he is usually pleasant to other people outside your home, he should be genial in the care home and you won't have to worry about him

i think this is an excelent plan. i was just going to type something similar but you beat me to it @Dimpsy
@pevensey book the respite... if his day center is not the right day then see if you can book him in longer so he goes straight from the day centre a day early so you can have real mum daughter time....do dinner out and relax before the appointment will his transport take him instead of taking him home
with all this in place you can drop off his case during the day then go....dont phone to see how he is just go... you dont need to know as you cant do anything about it...they will sort out any issues and he will most probably behave beautifully and caused a fuss for nothing.
best wishes
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
Just an update on my trials and tribulations of being able to go to this extreamly important hospital app with my daughter, Its in Bristol, Wales which is 4 and half hours drive so have to stay overnight as her app,is in morning and we wouldn't get there in time if we left on day of app. SO hubby absolutely refused to go for few days respite, I still let the care home manager come to asses him, thinking he might be more compliant with her, but he told her to leave , He very definitly cant be on his own, he has falls , can hardly walk and cant do very much for himself, He had 2 falls in the early hrs of the morning today, so my next I thought ingenious plan was to have extra carers in s he can still be at home, couple extra in the day and one overnight. BUT NO, he refused, shouting nobody
was coming in he doesn't want anybody coming in and if they did he would make them leave, , he got very verbal, and I'm ashamed to say I really shouted it him and I THINK I swore at him which I never do, I told him to please do either one or the other, do it for me PLEASE but he just carried on shouting, so I'm back to square one, but I'm more determined than ever that I need to be there for my daughter, even if we have to drive about an hour into our journey and phone S/S that hes home alone and we will be home the next day hopefully. Prob not brave enough though to do that, but would love to just to show hubby its NOT all about him.so I'm still struggling for solution and haven't got much time now. I HATE THIS DISEASE and at moment I really dont want to be his carer anymore., I feel like throwing the towel in. Hes got no empathy for me or consideration, it's like the difficult person he was for years in our marriage is coming back, and that's scary to have that along with the vascular dementia.
My dad as you know went into respite for 2 weeks and then another week. Dad stayed another week as he didn’t know it was the 3rd week (thought it was the 2 nd) No idea of day etc.

Please go ahead with your daughter.I recognise the signs of a bully.(My Dad was/is) Sometimes he would shout but a lot of the time he would be like a stroppy kid and passive aggressive . So I can appreciate where you are coming from.

If you could get a medal for manipulation he would win.It sounds like your husband could be a contender.

As said here You need to be with your daughter.Do not let him dictate to you about what is happening.
He has “capacity “ apparently so let him get on with it.
I organised respite for dad behind his back and gave him a choice .Carers or the home as I was going anyway.

Be firm and you tell him what is happening.
He will need to eat so he gets a choice of carers ,or respite.
But DONT tell him and go ahead and do it.

If he throws the carers out whilst you’re with your daughter so be it.

His choice and heavens above we don’t follow SS and give choices when people have”capacity “.
Be strong! (Hugs)
 

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
If your daughter has no one other than you to accompany her @pevensey I would go with her.

Both your husband and your daughter need support. There is a solution for your husband but not for your daughter so that would be my rationale.

This is what I would discuss with the assessors.
The care home manager came to assess him the other day @GrannieG, she was really lovely but he wouldn't have anything to do with her, wouldntntalk to her except to tell her he wasnt going anywhere and not into her " institution " told her to leave. , I got upset and left the room but she came out I checked I was ok, she said IF he changes his mind to let her know. Hmmmmm
 

pevensey

Registered User
Feb 14, 2012
286
0
South East Coast.
My dad as you know went into respite for 2 weeks and then another week. Dad stayed another week as he didn’t know it was the 3rd week (thought it was the 2 nd) No idea of day etc.

Please go ahead with your daughter.I recognise the signs of a bully.(My Dad was/is) Sometimes he would shout but a lot of the time he would be like a stroppy kid and passive aggressive . So I can appreciate where you are coming from.

If you could get a medal for manipulation he would win.It sounds like your husband could be a contender.

As said here You need to be with your daughter.Do not let him dictate to you about what is happening.
He has “capacity “ apparently so let him get on with it.
I organised respite for dad behind his back and gave him a choice .Carers or the home as I was going anyway.

Be firm and you tell him what is happening.
He will need to eat so he gets a choice of carers ,or respite.
But DONT tell him and go ahead and do it.

If he throws the carers out whilst you’re with your daughter so be it.

His choice and heavens above we don’t follow SS and give choices when people have”capacity “.
Be strong! (Hugs)
So, I've been running around TRYING to sort out extra carers to come during the day for half every now and then, justnto check on him and make coffee. Even though he says he wont let them in. At least I've tried. I think he thinks I won't go but hes wrong . Mind you , he had a fall yesterday morning early about 4-30, he didnt hurt himself but I vouldnt get him up so had to use the life line, much to his disgust, he kept telling me not to.. paramedics came and got him up, checked him over and he was ok. But I thought what would happen if that had been when i wasnt there.
But a lady from adult social care rang me today, was chatting to her for ages, she asked if I wanted him assessed again and of course I said yes, I think that's because I asked her about the CAPACITY word. Anyway she started saying not to worry unduly about him not letting carers in, hes refused to have them, refused respite, so hes made the decision that hes ok on his own so he has to face the consequences of how he gets on, she said it sounds cruel but if he falls and a carer finds him he would have to ho to hospital, and then that when I say I dont want him home, it's too unsafe for him, and told me to go with my daughter, and not to worry about him !!!!
Shes coming next week to assess him. But one reassuring thing is my son is going to stay overnight with him, which I'm pleased about although he doesn't get home from work till about 7-30 and leaves at about 6-30min morning. but better than not at all.
 

charlie10

Registered User
Dec 20, 2018
394
0
Quite right Pevensey, your daughter needs you and he will have to manage without you for abit. I do hope all goes (went?....time zones confuse me!) well at her appointment. The mesh thing is often in the news over here in NZ......I will have my fingers crossed that they can sort it forher.....I think we're at our most vulnerable where our children are concerned (however old they are)and you've already got a lot on your plate. Take care x