to cut a long story short after a 4 week assessment they say my lovely husband is too poorly to come home, but rather than except this cos I had a plan of how this disease and we would progress and where my husband should go. I say he must come home to give care home a chance to come up with a place. So surprise surprise Ive got it soooo wrong again, I bring him home, day centre although more than understanding cannot take him for long as I realise is not fair on other clients that his aggression towards staff is unsettling for them. I cannot cope, I have to break his heart and mine and tell him this will not work and he needs to go to a nursing home, its not his fault, its mine!! Why dont I learn! Grannie G a while ago saw my faults why didnt I take her wise advise. Now I am so desolate at what the future holds and its MY fault.
I KNOW THEY ARE RIGHT! But did I listen
- Thread starter willsar
- Start date
Willsar,
Did you give your husband this disease?
Can you stop this disease?
Can you prevent the behaviour which your poor husband shows?
Did you stumble at the first hurdle and give up?
Did you stop caring about and for him?
Are you more than one person?
Can you possibly give him all the care he needs?
Have you tried your best?
I think you know the answers to these questions as well as I do and the answers lead me to one conclusion - it is NOT your fault that your husband is ill. It is not your fault that he needs specialist care 24 hours a day. You did not cause this and it is not your fault that he can no longer safely be cared for at home. You are one person and could not possibly be expected to care alone for such a complex, difficult 24 hour a day care situation.
This disease beats us ALL - None of this is your fault. I know when I was at the point you are now at I made myself ill because of the overwhelming feelings of guilt that I had somehow let my poor, poor husband down because he had to be cared for in a specialist care home. It took me a long, long time to stop beating myself about the head and accept that this has happened and that none of it was my fault. We give the best we have of ourself. I did and still do and you have and will still do!
This guilt feeling is destructive and will eat you away from the inside out, and then what use would you be to your man? You have to put on a brave face, smile and comfort him, and get on with the deal life has given you both. Neither you or your husband asked for any of this.
Once you have got over the shock and hurt of this you will find that you are still the most important person in his care, even more so now he is no longer living with you. You will be needed so badly to visit, to give him comfort, to make sure he is being cared for properly, to give him as much love as you can and his illness will allow.
Take care of yourself and give yourself a massive pat on the back for all you have done and will be doing for his sake.
xxTinaT
Did you give your husband this disease?
Can you stop this disease?
Can you prevent the behaviour which your poor husband shows?
Did you stumble at the first hurdle and give up?
Did you stop caring about and for him?
Are you more than one person?
Can you possibly give him all the care he needs?
Have you tried your best?
I think you know the answers to these questions as well as I do and the answers lead me to one conclusion - it is NOT your fault that your husband is ill. It is not your fault that he needs specialist care 24 hours a day. You did not cause this and it is not your fault that he can no longer safely be cared for at home. You are one person and could not possibly be expected to care alone for such a complex, difficult 24 hour a day care situation.
This disease beats us ALL - None of this is your fault. I know when I was at the point you are now at I made myself ill because of the overwhelming feelings of guilt that I had somehow let my poor, poor husband down because he had to be cared for in a specialist care home. It took me a long, long time to stop beating myself about the head and accept that this has happened and that none of it was my fault. We give the best we have of ourself. I did and still do and you have and will still do!
This guilt feeling is destructive and will eat you away from the inside out, and then what use would you be to your man? You have to put on a brave face, smile and comfort him, and get on with the deal life has given you both. Neither you or your husband asked for any of this.
Once you have got over the shock and hurt of this you will find that you are still the most important person in his care, even more so now he is no longer living with you. You will be needed so badly to visit, to give him comfort, to make sure he is being cared for properly, to give him as much love as you can and his illness will allow.
Take care of yourself and give yourself a massive pat on the back for all you have done and will be doing for his sake.
xxTinaT
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Thank you Tina T. Maybe soon I will let stop hating myself and the extra trauma I have unnecessarily put him through. No we didnt ask for this disease but I cracked before from the strain this illness caused and although they took him away for assessment my arrogance still wouldnt let go and I am so sorry for the extra damage I may have caused. I hope it will pass because all he truly wants is for me to smile and until my betrayal of him is done I must try to smile, cos by the morning he will have forgotten what I have to do.
Please,please don't think of this as betraying your husband.
You want what's best for him,don't you ? And if care in a nursing home is what he most needs,then you are doing the very best you can for him by arranging it.
This is a massive adjustment to make,and you must be overwhelmed by the thought of it,but please stop blaming yourself. You've done the best you can so far,and this is the next step,and you'll do the best you can with that too.
Now you look after yourself tonight,and try to give yourself a little treat.
You want what's best for him,don't you ? And if care in a nursing home is what he most needs,then you are doing the very best you can for him by arranging it.
This is a massive adjustment to make,and you must be overwhelmed by the thought of it,but please stop blaming yourself. You've done the best you can so far,and this is the next step,and you'll do the best you can with that too.
Now you look after yourself tonight,and try to give yourself a little treat.
Tina has said it all for me, but I will say you have done a splendid job and never think of this as failure, you are still doing your best, just from a different view point that's all. The girl done good!!
Hello Willsar
Alex is right. You tried and then tried again. Nothing is your fault.
Tina is right. We cannot win with this disease.
Bumble B is right. You want what`s best for your husband.
Please stop being so hard on yourself. Be upset. Feel sad. But you really have tried. You have not let him down. The illness takes over.
You are still his wife, still his carer and will still be able to contribute to his well being.
I didn`t see faults in you. I saw a devoted wife trying to keep her husband at home. It is not a fault, it is wonderful.
Alex is right. You tried and then tried again. Nothing is your fault.
Tina is right. We cannot win with this disease.
Bumble B is right. You want what`s best for your husband.
Please stop being so hard on yourself. Be upset. Feel sad. But you really have tried. You have not let him down. The illness takes over.
You are still his wife, still his carer and will still be able to contribute to his well being.
I didn`t see faults in you. I saw a devoted wife trying to keep her husband at home. It is not a fault, it is wonderful.
Hello Willsar
My heart goes out to you.
none of this is your fault
You wanted to do what so many of us want to do but sadly few find its possible
Its not you or your husbands fault!!!!!!!!!
Its the fault of this bloomin vile illness
things I know for sure
you have not failed your husband in anyway
you have done far more than your best
and you are hurting badly, but their is no need to feel any guilt
My heart goes out to you.
none of this is your fault
You wanted to do what so many of us want to do but sadly few find its possible
Its not you or your husbands fault!!!!!!!!!
Its the fault of this bloomin vile illness
things I know for sure
you have not failed your husband in anyway
you have done far more than your best
and you are hurting badly, but their is no need to feel any guilt
Dear Willsar
Everyone is right, this is not your fault!
You wanted to do the best for your husband, and you tried. It's not your fault that you couldn't cope, and no-one thinks it is, but you!
I was in the same situation, I was told I couldn't bring my husband home from hospital, though I desperately wanted to. I gave in, and John went into care. I feel guilty that I didn't try!
The point is, no-one can win against this disease. You tried one way, I tried another, and the disease beat us both.
There is no betrayal, though, so try to put that thought behind you, and focus on making your visits as pleasant as possible.
Stick on that smile!
Love,
Everyone is right, this is not your fault!
You wanted to do the best for your husband, and you tried. It's not your fault that you couldn't cope, and no-one thinks it is, but you!
I was in the same situation, I was told I couldn't bring my husband home from hospital, though I desperately wanted to. I gave in, and John went into care. I feel guilty that I didn't try!
The point is, no-one can win against this disease. You tried one way, I tried another, and the disease beat us both.
There is no betrayal, though, so try to put that thought behind you, and focus on making your visits as pleasant as possible.
Stick on that smile!
Love,
Willsar, NO NO NO NO NO this is not your fault. I was the same with my dad and i tortured myself because I put my dad in a home. I was traumatised, i couldnt get over the guilt and it was the worst time of my life. I blamed myself for everything that happened to my dad and i wrestled with my conscience for 2 years. However, much as it is soul destroying, traumatic, horrible experience, you will in time come to terms with it. You didnt inflict this disease on him, you dont make him suffer, you arent responsible for it, ITS NOT YOUR FAULT. You are hurt, sad and bewildered, could you have done something different, should you have noticed this/that/whatever, could you have coped with the 24/7 grind, NO. The only thing youve done is love, care and support him through this journey which you will continue to do so. Please dont be so hard on yourself, i know it hurts so much but given time you will come through it. take care x
My heartbreak is that on the days he is not wandering and falling he is so aware and pleased to be here. The doctors dont realise how lucid he is when we sit quietly together and he talks as best he can but gets his point across, then he goes the fog in his head he doesnt understand and it frightens him so. Thank you for all for your kind words and support. The b***** is I can cope with the things I thought I wouldnt be able to like the double incontinence, having to feed him, etc, its the bits I cant control I cant cope with. I must be some control freak. Thank you all
I know how you are feeling - I am feeling it too. The difference is that you were strong and assertive enough to insist he came home, I was not and that is where my guilt lies.
You have tried the at home way, you've given it your best shot and that should comfort you in the days and weeks ahead.
I wish I could have tried - even if it didn't work out because than I wouldn't be haunted by the thought that he just might be happier at home, as he certainly isn't happy where he is. Family and friends, who try to be helpful and kind, say he wouldn't be as he wouldn't realise it was home any more, but I don't know that. If I did, I would
accept it and feel so much easier in my mind.
You have no cause to reproach yourself. Well done for all your efforts in supporting and caring for your husband as you have done, and will continue to do, just in a slightly different way. It is still hard task as we, who are new to the care home scenario, are discovering. Best wishes for your ongoing journey on this path.
You have tried the at home way, you've given it your best shot and that should comfort you in the days and weeks ahead.
I wish I could have tried - even if it didn't work out because than I wouldn't be haunted by the thought that he just might be happier at home, as he certainly isn't happy where he is. Family and friends, who try to be helpful and kind, say he wouldn't be as he wouldn't realise it was home any more, but I don't know that. If I did, I would
accept it and feel so much easier in my mind.
You have no cause to reproach yourself. Well done for all your efforts in supporting and caring for your husband as you have done, and will continue to do, just in a slightly different way. It is still hard task as we, who are new to the care home scenario, are discovering. Best wishes for your ongoing journey on this path.
Saffie, I`m still haunted by thoughts Dhiren might still be happier at home. But even when he was home, he wanted to go home.
And I know when I visit, he gets the best from me. He didn`t when he was home. I was worn down. He is contented and well cared for. He has gained weight and his glucose levels are stable.
I really hope you will find improvements to your husband`s health soon, which will give you comfort.
And I know when I visit, he gets the best from me. He didn`t when he was home. I was worn down. He is contented and well cared for. He has gained weight and his glucose levels are stable.
I really hope you will find improvements to your husband`s health soon, which will give you comfort.
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You sound just like myself. Only last night I was talking to an old friend and saying almost exactly what you say. I can cope with the physical things, the poo, the wee, the feeding, etc. I don't like cleaning up bodily mess but I can and I do. The part of the care I cannot cope with is the hallucinations, the compulsive, obsessive behaviour, the fear and confusion which causes my husband to strike out and frighten me.
My husband has been in a care home situation for four years. For three of those years, I brought him home for visits, I brought him home for sleepovers and I even took him to visit and stay with our sons, quite a feat I can tell you!
Why do you think that once in the care home he will have to stay permanently there and never be allowed to come out for a while?
You can take him out of the care home to visit the shops, have a drink in a cafe, do many things which his illness will allow. It isn't easy, I know because I've done it. There were moments when I was in the middle of town with a husband barely under my control and I sailed very close to the wind a few times, but it was worth it. I made mistakes but I lived with them because I knew I was trying my best to give my husband some sort of quality in his life. My husband up to recently was quite capable of enjoying such things. although the window of opportunity to do them was a small, couple of hours at the most.
You do still have a life together. It will be quite different and new but you still have a life together. Make the most of what valuable time you both have in whatever way you can.
My husband is well beyond all the above now and I miss our little trips out and I know that he does. We laid down some good memories in the last few years, even though he wasn't permanently home with me.
xxTinaT
My husband has been in a care home situation for four years. For three of those years, I brought him home for visits, I brought him home for sleepovers and I even took him to visit and stay with our sons, quite a feat I can tell you!
Why do you think that once in the care home he will have to stay permanently there and never be allowed to come out for a while?
You can take him out of the care home to visit the shops, have a drink in a cafe, do many things which his illness will allow. It isn't easy, I know because I've done it. There were moments when I was in the middle of town with a husband barely under my control and I sailed very close to the wind a few times, but it was worth it. I made mistakes but I lived with them because I knew I was trying my best to give my husband some sort of quality in his life. My husband up to recently was quite capable of enjoying such things. although the window of opportunity to do them was a small, couple of hours at the most.
You do still have a life together. It will be quite different and new but you still have a life together. Make the most of what valuable time you both have in whatever way you can.
My husband is well beyond all the above now and I miss our little trips out and I know that he does. We laid down some good memories in the last few years, even though he wasn't permanently home with me.
xxTinaT
I can only repeat what everyone else has said: "It's not your fault!" You have given it your best shot, you won't worry about whether things would have been ok if you'd brought him home, because you know you have done all that you can. Be proud of what you have done, not guilty because of the way things have turned out!
Trust me, there will still be a role for you when your husband is in a nursing home. They will do the things that need to be done, but you will be the one who cares about him, and who will make sure he gets everything he needs. But you will get the rest you need so that you are able to visit refreshed every time, not worn down with the constant demands that caring for someone with dementia bring.
Stop beating yourself up, but be glad that now others will share the burden, leaving you to enjoy the moments of lucidity while you can. I hope that you have found a good home, where you will both be cherished.
Love and hugs,
Sue xxx
Trust me, there will still be a role for you when your husband is in a nursing home. They will do the things that need to be done, but you will be the one who cares about him, and who will make sure he gets everything he needs. But you will get the rest you need so that you are able to visit refreshed every time, not worn down with the constant demands that caring for someone with dementia bring.
Stop beating yourself up, but be glad that now others will share the burden, leaving you to enjoy the moments of lucidity while you can. I hope that you have found a good home, where you will both be cherished.
Love and hugs,
Sue xxx
Dear willstar
I know how you feel, as do others. My husband went from hospital into care five weeks ago after the consultant recommended that he dd not come home. I consulted my GP who totally ruled it out. I was shocked, wanted to give it my best shot at home, but in the end I had to accept that the dice was loaded against me.
Now I am still agonising over should I have insisted he came home... would I have managed... it is even worse now because his health has actually improved in the care home. Except for his mobility now lost forever. Of course I am glad that his general health is better, he is putting on weight, looks well... but it makes me feel perhaps I could have managed.
My logical mind tells me we would not have managed. His dementia is much worse, and that affects everything. He accepts what the staff do to care for him, but he would not accept from me, he would rage and swear and curse me. Lash out. He has no sense of danger, no sense that he cannot stand or walk unaided and at home he would be at serious risk. As was pointed out to me several times, we would both be at risk because I could not support him up and downstairs, or catch him if he stumbled, and in so many other ways as I did before his deterioration. I do blame myself for having failed him in this respect. My inability to meet his much increased needs.
I tell myself he is now in a safe environment, safer than he would be at home, he has company he did not have before, only me and at times I seemed to be his worst enemy. He has stimulation he did not have before.
But nothing is helping me accept that he is in a care home when I feel that he should be in our home where he wants to be. I know how you feel.
However I am reassured by the positive posts you have received, and perhaps it will get better in time, I do not know.
None of this is helpful to you, or positive. I just related so much to how you feel and the agony you are going through. Me too. But others have been there before us, experienced the same agonies, and perhaps there is hope. We just cannot yet see that. Our minds tell us as your title says "I know they are right" but we are feeling with our hearts.
I take some comfort from the words of Tina, Sylvia, and others, and hope you can also.
Tina wrote:
I know how you feel, as do others. My husband went from hospital into care five weeks ago after the consultant recommended that he dd not come home. I consulted my GP who totally ruled it out. I was shocked, wanted to give it my best shot at home, but in the end I had to accept that the dice was loaded against me.
Now I am still agonising over should I have insisted he came home... would I have managed... it is even worse now because his health has actually improved in the care home. Except for his mobility now lost forever. Of course I am glad that his general health is better, he is putting on weight, looks well... but it makes me feel perhaps I could have managed.
My logical mind tells me we would not have managed. His dementia is much worse, and that affects everything. He accepts what the staff do to care for him, but he would not accept from me, he would rage and swear and curse me. Lash out. He has no sense of danger, no sense that he cannot stand or walk unaided and at home he would be at serious risk. As was pointed out to me several times, we would both be at risk because I could not support him up and downstairs, or catch him if he stumbled, and in so many other ways as I did before his deterioration. I do blame myself for having failed him in this respect. My inability to meet his much increased needs.
I tell myself he is now in a safe environment, safer than he would be at home, he has company he did not have before, only me and at times I seemed to be his worst enemy. He has stimulation he did not have before.
But nothing is helping me accept that he is in a care home when I feel that he should be in our home where he wants to be. I know how you feel.
However I am reassured by the positive posts you have received, and perhaps it will get better in time, I do not know.
None of this is helpful to you, or positive. I just related so much to how you feel and the agony you are going through. Me too. But others have been there before us, experienced the same agonies, and perhaps there is hope. We just cannot yet see that. Our minds tell us as your title says "I know they are right" but we are feeling with our hearts.
I take some comfort from the words of Tina, Sylvia, and others, and hope you can also.
Tina wrote:
Sylvia wrote: (and I already know how true this is for me)
Loo xx
I know its hard not to blame yourself, but try not to, you gave your husband all you had and for that you should be proud of yourself. You've done nothing wrong, ok we all make mistakes but we're not perfect, you just wanted to do the best you could for him. Try to focus on what time you've got left together, hold onto your happy memoriesxxxx
