This is going to be long and rambling. Sorry. TP has been so helpful since my OH was diagnosed with FLD. He is now in residential care as I could not look after him at our small cottage. He has a tendency to fall. He however does not see this as a problem and so whenever I visit, most of the time is taken up going round and round why he can't home. He gets very emotional and angry with me. The carers tell me that he's ok with them. He seems settled. He refuses to join in with anyone else there and eats all his meals in his room. I try not to get into a discussion about the future but changing the subject doesn't always work. When I visit it's always in his room so trying to slip away unnoticed isn't possible. I try to reassure him that I'll be back so I don't say " goodbye" I tell him when I'm coming back and say "see you in a bit" . I walk out of his room then I hear him shouting my name. I don't know whether or not to go back as it concerns me that he's trying to stand up and then ends up falling down !! It's just so hard. How, after 12 years of caring for someone do you stop and plan things for youself not OH. I feel so guilty that I can come and go as I please whilst OH is there. Everyone tells me that I have to stop worrying but how do you? How do you go out for lunch with dear friends and stop feeling guilty? I'm also trying hard not to visit everyday as it unsettles him and upsets me. Trouble is I feel guilty again !! Does it get easier or is that an impossible question?
Does it get easier?
- Thread starter Ernest
- Start date
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Hi Ernest I can't help you as I have still got my oh at home with me but just wanted to say I feel for you it must be so hard ,my oh has just been in restpite so I do know about the guilty feeling he was in a week and I felt same guilty because I was going out and having coffee with friends ,but you have looked after him 12 years so you deserve to go and come has you please ,I am sure he is well looked after and I am sure he will settle down you have done your best for 12 years which is a long time ,I have done eight years and I must admit it is wearing me out.
I haven’t been in quite this situation, but I just wondered if a couple of things might work...could you ask the staff to assist you so that you could visit him in a communal lounge. I mean, maybe his room could be ‘deep cleaned’ while you visit, so he ‘needs’ to leave it. And then could you maybe take a photograph album, or a book he might be interested in...or a jigsaw, or whatever he might enjoy? Something for you to do together to break the habit of him asking you the same questions at every visit?
And, finally...he was in danger of falling and injuring himself at home, and you couldn’t cope in the space you had....so he needed to move. You made the right decision. I know that guilt creeps in, my husband moved in February of this year, and now I look back and wonder if I should, or could, have carried on for longer. But we have to take control of our minds and not feel guilty. I often wonder, with a wry smile, if my husband would have done anything different if our positions had been reversed!
Routines and rituals are often very important to people with FLD and Im wondering whether your visits have formed a routine for him, so that he says and does the same thing each time. Perhaps the routine should be broken.
I like the idea of not seeing him in his room, so there is an element of change. You might find that the only way to break this is by giving the guilt monster a good thrashing and not visiting for a week (or even longer). If your visits are upsetting both of you, how exactly is this in his best interest?
I like the idea of not seeing him in his room, so there is an element of change. You might find that the only way to break this is by giving the guilt monster a good thrashing and not visiting for a week (or even longer). If your visits are upsetting both of you, how exactly is this in his best interest?
Caring and guilt seem to go hand in hand, even though we have no reason to feel guilty we just can’t help it! All the what ifs, could I, should I, if only...However, you should not feel guilty for the fact that your OH is in a home, you cared for him as best you could , for as long as you could, now, for his safety he has to be elsewhere. Nor should you feel guilty about having your own life or doing what you want. Easier said than done, I know.
I would try talking to the staff about your predicament and see if they can help. Also, it might be worth trying to visit with another person if that’s possible, he might not get so emotional or angry.
Stay strong.
I would try talking to the staff about your predicament and see if they can help. Also, it might be worth trying to visit with another person if that’s possible, he might not get so emotional or angry.
Stay strong.
This is always a very hard choice - admission into Care. It brings with it all manner of anxieties and nagging 'guilt', simply due to the fact that one has no choice, despite everything. It is however not a cause for total despair, that is usually what becomes part and parcel of caring at home, day after day, night after night, with little if any relief at all. It takes a while for people to 'settle' into a Care Home and sometimes it is wiser to step back a pace and stagger visits in order for this to take place. I can say without reservation, that in the Care Home where I work, every resident has long periods in which they are 'settled'. The interaction between other residents and Carers throughout a working day can be varied of course, but generally, I see both men and women in a 'settled' state, as the routine of the day takes place around meal times and becomes a kind of 'norm'. The initial 'strangeness' of a place into which someone has come, either for respite or as a permanent 'home' , affects everyone to a degree, .as it would for ourselves. Perhaps if one can adopt a casual almost matter-of-fact approach and try not to communicate the fact that one is visiting or indeed having to depart and merge that with activities or meal times, this might help. For my own part, I must confess that I did visit my late mother in the Home every single day and in the early days, stayed for hours on end. Then I adopted a routine whereby I would conduct her to the table for meal times (usually tea time) and then slip away once she had started to eat.
One has to find one's own way through this and whatever tactics work, stick with them. If and when mother asked about "going home" I would hardly make comment and raise another topic or simply suggest a cup of tea.
None of this is ever easy. Neither is it hopeless. Just necessary.
Dear Ernest I am so sorry. It sounds very hard. And after twelve years of caring, it’s unimaginable that you are still feeling guilty, and that you have trouble enjoying yourself when you are out with friends and taking a well earned break. It must be simply horrible to hear your partner calling your name like that. The helplessness you are facing, and enduring, is one of the very hardest things.
Everyone who has responded has said wiser things than I can manage, and has also offered input of a practical kind. Mine is less so.
I’ve been thinking all day of any way I could help, and the only thing I can offer is to ask you, if you feel up to it, whether you could cast your mind back to the time when your partner was well, and still fully himself. If this is not too painful, you may be able to have a conversation with him as he was, prior to twelve years ago. It’s fantastical of me, I know; but, in my own times of crisis over the years, I have found that sometimes it works, and can bring solace.
The point of the conversation, if you feel up to it, would be to tell the younger, fully well person what you are experiencing now, in your struggle to care for him, and to see if he can offer you any advice or consolation. Who knows? He may tell you very firmly that you must look after yourself, and find pleasure still in company, even when it can’t be him you’re with; and I am sure he will tell you how much he loves you and always will.
If it’s hard to envisage, or to get started, sometimes it can be helpful to write such an imagined encounter as a dialogue between yourself and him: the younger him, as he was, whom you loved then as you do now - but without the torments that dementia, and caring for someone with dementia, bring in their wake.
Thinking of you.
Everyone who has responded has said wiser things than I can manage, and has also offered input of a practical kind. Mine is less so.
I’ve been thinking all day of any way I could help, and the only thing I can offer is to ask you, if you feel up to it, whether you could cast your mind back to the time when your partner was well, and still fully himself. If this is not too painful, you may be able to have a conversation with him as he was, prior to twelve years ago. It’s fantastical of me, I know; but, in my own times of crisis over the years, I have found that sometimes it works, and can bring solace.
The point of the conversation, if you feel up to it, would be to tell the younger, fully well person what you are experiencing now, in your struggle to care for him, and to see if he can offer you any advice or consolation. Who knows? He may tell you very firmly that you must look after yourself, and find pleasure still in company, even when it can’t be him you’re with; and I am sure he will tell you how much he loves you and always will.
If it’s hard to envisage, or to get started, sometimes it can be helpful to write such an imagined encounter as a dialogue between yourself and him: the younger him, as he was, whom you loved then as you do now - but without the torments that dementia, and caring for someone with dementia, bring in their wake.
Thinking of you.
I too feel daily guilt that my lovely mum is in a care home and I cannot stop thinking about her and wonder what she is doing, how she is feeling, has she been drinking enough, are her clothes clean etc etc
If I can't visit, I ring and ask if she is ok.
I feel guilty that I don't visit daily. Should I?
I said to my husband "what is mum doing in the care home that she wasn't doing here?"
I know what he replied is true, the only difference is that now I am not responsible for her care and happiness on a daily basis, mum went into care because we couldn't do it anymore, we made the right decision I know but then I doubt myself ALL the time.
Mum doesn't remember the visits she gets from my sister each Tuesday.
She is mobile with the use of a crutch.
She doesn't need help to eat or toiletting.
I have to keep telling myself that we couldn't live with mum in our home the way we have been living for all our sakes.
Mum needs routine.
She needs 24/7 carers there to make her a cup of tea and chat at 2am.
She needs to be in a secure environment where she is safe.
I know all this but I still wonder, I still feel guilty, I feel sad for mum and heartbroken that this has happened.
This time last year we didn't know it but my darling dad was dying, four weeks from diagnosis and he was gone.
Mum is in a care home and is gone from my care and their home will also be gone this Wednesday.
I can't believe I've lost them.
If I can't visit, I ring and ask if she is ok.
I feel guilty that I don't visit daily. Should I?
I said to my husband "what is mum doing in the care home that she wasn't doing here?"
I know what he replied is true, the only difference is that now I am not responsible for her care and happiness on a daily basis, mum went into care because we couldn't do it anymore, we made the right decision I know but then I doubt myself ALL the time.
Mum doesn't remember the visits she gets from my sister each Tuesday.
She is mobile with the use of a crutch.
She doesn't need help to eat or toiletting.
I have to keep telling myself that we couldn't live with mum in our home the way we have been living for all our sakes.
Mum needs routine.
She needs 24/7 carers there to make her a cup of tea and chat at 2am.
She needs to be in a secure environment where she is safe.
I know all this but I still wonder, I still feel guilty, I feel sad for mum and heartbroken that this has happened.
This time last year we didn't know it but my darling dad was dying, four weeks from diagnosis and he was gone.
Mum is in a care home and is gone from my care and their home will also be gone this Wednesday.
I can't believe I've lost them.
You are grieving @yak55
You havent had a chance to grieve for your dad and now you have these other losses too.
My mum didnt need help with toileting and eating when she first went into her care home, but I couldnt keep her safe.
It is fine not visit every day and phoning is a good idea. You have not abandoned her.
You both need to settle and learn to trust the carers. They wont care for her in the same way as you did, but they will be able to look after her and keep her safe.
Be gentle with yourself and take a big stick to the guilt monster
xx
You havent had a chance to grieve for your dad and now you have these other losses too.
My mum didnt need help with toileting and eating when she first went into her care home, but I couldnt keep her safe.
It is fine not visit every day and phoning is a good idea. You have not abandoned her.
You both need to settle and learn to trust the carers. They wont care for her in the same way as you did, but they will be able to look after her and keep her safe.
Be gentle with yourself and take a big stick to the guilt monster
xx
You have been and are so kind canary, you have made me feel better just my 'understanding' thank you x
