living with the guilt monster after 18 days of care home....

[love.dad.but..]

Without a doubt after the initial sensible reasoning or crisis for placing a loved one in long term care rose tinted specs magically appear! We have more rest.. we start to think we see their presentation differently...could we have looked after for longer...could we have them back home and manage? It is a false dawn...the pwd is being cared for 24/7 by a team of people and part of the guilt tries to resurface but packaged in a different way. Almost a year after dad died I still have those tormenting rose coloured spec moments but I firmly don't put them on I know deep down he stayed at his nursing home for the right reasons for him...but I agree it is hard and continues to be long after my caring job was done!

 

[DMac]

Just to add my sympathy to all those battling with the guilt monster, after "putting" their LO in a care home. (There must be a more appropriate verb than to "put", but I can't think of one.)

After 18 months in a care home, my MIL has good days and bad days. Sometimes she is unbearably tearful. Other times, she is cheerful and upbeat. It is truly a roller-coaster and we never know what to expect. I just try to remember that she is safe, clean, well-fed, entertained and cared for by a lovely team of carers, who genuinely do their best for her. It's good enough. It has to be.

 

[Twinny1965]

Just to add my sympathy to all those battling with the guilt monster, after "putting" their LO in a care home. (There must be a more appropriate verb than to "put", but I can't think of one.)

After 18 months in a care home, my MIL has good days and bad days. Sometimes she is unbearably tearful. Other times, she is cheerful and upbeat. It is truly a roller-coaster and we never know what to expect. I just try to remember that she is safe, clean, well-fed, entertained and cared for by a lovely team of carers, who genuinely do their best for her. It's good enough. It has to be.

Hello Dmac.
I'm new to this forum if you havnt heard from me before. My family and I ' put ' my mum in a care home after she suffered two strokes which left her unable to cope at home even with the best home care package available. I agree with you that a better word is needed! We like to tell her she was 're housed' somewhere more suitable so she had more friends to talk to! She loves the fact that all the girls ( carers) come and see her every day to tell her what they've been up to. She only used to see people two or three times a week when she lived at home.
We felt guilty at first but now look forward to seeing her more often and love that she is well cared for and catch up on all sort of daft stories about where she's been! ( She never leaves the home!)
Please don't feel guilty. ..your MIL will have good days and bad days. Don't we all..but her quality of life will be far better there than in her own home alone.

 

[Shedrech]

hi @DMac and @Twinny1965

I say my dad moved into his care home or was moved into his care home

when we change address, we say we have moved home - my dad has moved home a lot in his lifetime - this is just the latest move

 

[Scriv]

Unfortunately this awful illness seems to equip our loved ones with amazing skills at making us feel bad as we all do our utmost to care or arrange care for them. It seems that whatever we do is wrong... and when we go to visit and do all those things for them, they can forget that we have ever been. They seem to want everything immediately or even yesterday... then when they have it, they move onto the next demand straight away. It feels as if you give an inch, they take a mile... then forget it all, become abusive at us because we 'do nothing' or 'leave them to rot' and we 'steal their money' or others do etc etc

We don't feel guilty that we have had to place our relative in a home, as the alternative would have failed drastically to look after them and keep them safe. We feel relief that they are being looked after by professionals well and are safe and cared for.

We do feel distressed by the abuse they put us through and the sheer ungratefulness. We feel frustrated at how they constantly complain about having nothing to do or nobody to talk to - the 'haven't seen a soul' compaint is very well known, I know - and then we watch them refuse to go talking with anyone or pick up an activity or go anywhere.

This illness is very very cruel and we know that our loved ones are not in control over how they are behaving towards us, but my does it hurt us when we are busting a gut to help them and at best they can't see it and at worst are blaming us and are being horrible. And heaven forbid that alcohol gets into the equation, as that makes it all 100 times worse.

And then behind the scenes, a lot of us are fighting officialdom and bureaucracy and over worked social workers and doctors and a battle to find the right care home to look after our DWP ... and help with funding. A supportive support team are worth their weight in gold and I so admire our carers and I am so grateful when we come across a supportive official. Dealing with this is hard with a LPOA but nigh impossible without it in place, so advisable to set up as soon as you can. Otherwise it is impossible to get people to talk to you!

So, in a nutshell, my family do not feel guilty as such - but nearly every other negative feeling under the sun like anger, dispair, distress, frustration, hurt. This is so so hard and distessing and one of the worst years we have ever had watching the decline of our relative and seeing the distressing effect on everyone around them. Knowing it is not their fault - but also being oh so aware that it is so so hard to deal with.

We must be kind to ourselves.Big hugs to us all out there going through this nightmare.

 

[Trying hard]

Thank you - it just helps knowing how many others struggle with the same issues xx

I feel like I’m the only one with all this worry but this site has confirmed that many others feel the same.

 

[Witzend]

Re 'I never see a soul' , my mother would often say this well before she was bad enough to need a CH.
My brother lived closest, at maybe a 20 min drive away, and would call round quite often.
I once arrived just as he was getting in his car to leave, and we had a quick word.
Once inside I (OK, cunningly) asked my mother whether she'd seen him lately.

'No, not for weeks - he never comes near.'

Given the state of her short term memory, she did - to be fair - probably believe it.
But these things can be so hard to deal with, especially when they include anger and bitter complaints about family members who are doing all they can. And the PWD then just gets angry with you if you try to defend them by pointing out the facts. Which you may well feel obliged to do - even though you know it won't be any use - because you can't bring yourself to agree that X is (insert choice of bad words).

 

[For-my-Dad]

Hello,
I am afraid my mental health has taken a massive hit due to the guilt and the sadness but I am trying hard to get myself fully functioning/well again.As a strategy, when the sadness and guilt overwhelm me, I ask myself these 4 questions:-

Can I realistically manage dad ,as he is now, alone ? - no.
Am I trying to do everything I can for him within the limits of work/children etc ? - Yes.
Could the situation have carried on as it was and for him to not end up found dead somewhere ? No (That was a real possibility as a physically fit night wanderer and a good escapee)
Am I showing him all the love I can? Yes
Can I change this situation ? No

I still cry frequently and I think that's understandable for all of us as we are in mourning and my dad cries frequently too despite being in the CH for 3 months.

I also think the man he once was would want me to remain well/get better. So I talk myself through that little list of questions every day. I hope that may help someone else .Much love to all on this thread.

 

[father ted]

My Mum has been in her care home just over a month. I had got very stressed just before Mum went in and spent most days crying about the situation which I felt no control over- she lived with me, my husband and disabled daughter.
Having visited some care homes in the last year and much agonising over the decision Mum eventually went in just over a month ago. She settled well and I felt a huge sense of relief. The first night I slept for 9 hours having not had more than 3-4 hours a night for 4 months.

However in the last few days I have felt an overwhelming sadness. The thing is since Mum has been in the home she has slept very well only getting up once or twice and not requiring assistance whereas she would call for me all the time. They say she is no bother but last time I visited ( I go every other day), she was not so happy and a bit tearful. I am an only child and I feel I have let her down. My daughter's disability is severe and she requires, toiletting, feeding, physiotherapist which I have been shown how to do and needs my support to do everything from bathing to going out, putting to bed and getting up. Whilst Mum was here she would ask me for help to get ready for bed but refused to have a carer come in and do it and said I could do it when she could see I had so much to do but there again I think the dementia had effected the way she saw things. I go over and over trying to convince myself I have done the right thing but it is so very very hard to disassociate your feelings from your actions when it effects those you love.

 

[SnowWhite]

My Mum has been in her care home just over a month. I had got very stressed just before Mum went in and spent most days crying about the situation which I felt no control over- she lived with me, my husband and disabled daughter.
Having visited some care homes in the last year and much agonising over the decision Mum eventually went in just over a month ago. She settled well and I felt a huge sense of relief. The first night I slept for 9 hours having not had more than 3-4 hours a night for 4 months.

However in the last few days I have felt an overwhelming sadness. The thing is since Mum has been in the home she has slept very well only getting up once or twice and not requiring assistance whereas she would call for me all the time. They say she is no bother but last time I visited ( I go every other day), she was not so happy and a bit tearful. I am an only child and I feel I have let her down. My daughter's disability is severe and she requires, toiletting, feeding, physiotherapist which I have been shown how to do and needs my support to do everything from bathing to going out, putting to bed and getting up. Whilst Mum was here she would ask me for help to get ready for bed but refused to have a carer come in and do it and said I could do it when she could see I had so much to do but there again I think the dementia had effected the way she saw things. I go over and over trying to convince myself I have done the right thing but it is so very very hard to disassociate your feelings from your actions when it effects those you love.

I can relate to this Father Ted. I still feel so guilty because I always imagined Mum carrying on as she was in her own home. But then she started having lots of falls and was diagnosed with Alzheimers and everything changed. To be honest she has had a good life until she reached 92 and had lots of interests and enjoyed me taking her out.

She had bowel cancer about 20 years ago and had surgery and then about 15 years ago it returned but a different strain so had more surgery so she has lived a lot longer than I imagined she would. I thought bowel cancer would finish her off and didnt think for a minute she would develop Alzheimers.

 

[Jen1234]

Hello,
I am afraid my mental health has taken a massive hit due to the guilt and the sadness but I am trying hard to get myself fully functioning/well again.As a strategy, when the sadness and guilt overwhelm me, I ask myself these 4 questions:-

Can I realistically manage dad ,as he is now, alone ? - no.
Am I trying to do everything I can for him within the limits of work/children etc ? - Yes.
Could the situation have carried on as it was and for him to not end up found dead somewhere ? No (That was a real possibility as a physically fit night wanderer and a good escapee)
Am I showing him all the love I can? Yes
Can I change this situation ? No

I still cry frequently and I think that's understandable for all of us as we are in mourning and my dad cries frequently too despite being in the CH for 3 months.

I also think the man he once was would want me to remain well/get better. So I talk myself through that little list of questions every day. I hope that may help someone else .Much love to all on this thread.

 

[Jen1234]

I have just joined this group today. I am just scrolling through all peoples experiences.

Yours grabbed my attention as I my dad has been getting steadily worse that last couple of years. He is in hospital at the moment and we are looking at options for when he gets out.

I myself am crying every day, my mental health is really worrying me.

The four questions you have listed above that you ask yourself, have really helped me see the bigger picture..... Thank you so much for sharing. It has helped me so much.

ps. my dad has escaped from the hospital and walked 4 miles home in the rain in his slippers.

 

[father ted]

chelmsfordbased,

My Mum recently went into a care home. I was so relieved initially but the guilt monster has got to me lately too. One of the problems is that Mum is still very gregarious, takes a pride in her appearance altho this didn't extend to washing when she was with me. For those that visit her she is outgoing, pleased to see them and is quite jolly and some of those people have said she seems 'too good' to be in a home.

This does upset me because it was me who she called for up 6 times a night to help her to the loo, it was me she asked to help her into and out of bed, it was me who helped dress/undress her when she told everyone else she didn't need any help. And it was me that had to call the day centre to say she was refusing to go in whilst she told everyone that she loved going and I was telling lies!

When I wake up in the middle of the night and think about my Mum I have been repeating what I now call the carers algorithm!
In my circumstances could I manage Mum at home now? No
Could I have carried on? Maybe but only at great expense to my sanity and my husband and children's welfare.
Could I change the situation? No
Am I doing the best for my Mum now even though she is not living with me? Yes

And to top it off, whilst writing this I was interrupted by a phone call from social services. I had contacted them in Nov when I was going through a tough time and called up in tears for help. Today 3 months later their duty officer rings up to offer help!

 

[love.dad.but..]

chelmsfordbased,

My Mum recently went into a care home. I was so relieved initially but the guilt monster has got to me lately too. One of the problems is that Mum is still very gregarious, takes a pride in her appearance altho this didn't extend to washing when she was with me. For those that visit her she is outgoing, pleased to see them and is quite jolly and some of those people have said she seems 'too good' to be in a home.

This does upset me because it was me who she called for up 6 times a night to help her to the loo, it was me she asked to help her into and out of bed, it was me who helped dress/undress her when she told everyone else she didn't need any help. And it was me that had to call the day centre to say she was refusing to go in whilst she told everyone that she loved going and I was telling lies!

When I wake up in the middle of the night and think about my Mum I have been repeating what I now call the carers algorithm!
In my circumstances could I manage Mum at home now? No
Could I have carried on? Maybe but only at great expense to my sanity and my husband and children's welfare.
Could I change the situation? No
Am I doing the best for my Mum now even though she is not living with me? Yes

And to top it off, whilst writing this I was interrupted by a phone call from social services. I had contacted them in Nov when I was going through a tough time and called up in tears for help. Today 3 months later their duty officer rings up to offer help!

Too little too late of the duty officer. However even if you had received caring help earlier it would probably have only delayed the inevitable and your situation at home has greatly improved through making the decision to move your mum into a home. Toughest decision ever for me..for you and everyone.....topped only for me having to make an end of life decision with consequences for dad....do I regret either decision for my dear dad....No. I regret dementia made me make the decisions though.

 

[Sandy Ridge]

Hello,
I am afraid my mental health has taken a massive hit due to the guilt and the sadness but I am trying hard to get myself fully functioning/well again.As a strategy, when the sadness and guilt overwhelm me, I ask myself these 4 questions:-

Can I realistically manage dad ,as he is now, alone ? - no.
Am I trying to do everything I can for him within the limits of work/children etc ? - Yes.
Could the situation have carried on as it was and for him to not end up found dead somewhere ? No (That was a real possibility as a physically fit night wanderer and a good escapee)
Am I showing him all the love I can? Yes
Can I change this situation ? No

I still cry frequently and I think that's understandable for all of us as we are in mourning and my dad cries frequently too despite being in the CH for 3 months.

I also think the man he once was would want me to remain well/get better. So I talk myself through that little list of questions every day. I hope that may help someone else .Much love to all on this thread.

I cry really frequently too. Mum moved into a lovely residential home 15 mins away - about 2 months ago. She is not very settled, incontinent at night and thinks the carers are trying to hurt her and don't care about her, and then other times they're wonderful. One of us visits daily (dad brother or myself). She still knows us and loves our visits. She thankfully rarely asks to come home. I think she knows she will be too much for us, but when she does it breaks my heart. This last week they have noro virus so we can't visit at all, but have instead sent cards and flowers and dvd and food parcels. I cry daily for her. I am a nurse and care for others and always promised myself that I would look after my parents if they got to this point, but it is impossible . Apart from anything else I think it would lead to my divorce! But I am grieving and sometimes I feel that noone understands why I feel so sad. Most of the day noone would know there was anything wrong and then I will think of something or someone will ask and the tears bucket out. I hear what you are all saying and resonate your feelings. In the past when people said ' my mum is in a carehome' I didn't imagine what they might be feeling....

 

[DeMartin]

Care home, that’s the thing, for whatever reason we cannot care for our loved ones. Both my parents are in residential homes, dad for four years, totally settled. Mum less than one, still restless at times.
I was a nurse too, but caring for patient A, for a shift is different to caring 24/7 for a family member. All day, every day, with the added “problems “ of husbands and children.
My mum and husband......match and petrol.
Give her time to settle, short cheerful visits.
I hate to say my mum is untruthful, but if a quarter of what she has told me was true she’d have been a permanent resident of A&E.

 

[YorkshireLass]

I cry really frequently too. Mum moved into a lovely residential home 15 mins away - about 2 months ago. She is not very settled, incontinent at night and thinks the carers are trying to hurt her and don't care about her, and then other times they're wonderful. One of us visits daily (dad brother or myself). She still knows us and loves our visits. She thankfully rarely asks to come home. I think she knows she will be too much for us, but when she does it breaks my heart. This last week they have noro virus so we can't visit at all, but have instead sent cards and flowers and dvd and food parcels. I cry daily for her. I am a nurse and care for others and always promised myself that I would look after my parents if they got to this point, but it is impossible . Apart from anything else I think it would lead to my divorce! But I am grieving and sometimes I feel that noone understands why I feel so sad. Most of the day noone would know there was anything wrong and then I will think of something or someone will ask and the tears bucket out. I hear what you are all saying and resonate your feelings. In the past when people said ' my mum is in a carehome' I didn't imagine what they might be feeling....

I see myself in all your comments. The tears, the guilt. the feelings of betrayal, my mum in a "care home", never have believed it. Lots of family members appear to have retreated from the situation as if it has gone on too long! I feel I am expected to "accept it, you couldn't have done any more". It's so hard but talking to folks and reading posts really does help. WE understand even if the outside world doesn't xxx

 

[Lizzie6391]

Wow ! I cant beleive so many families are going through the same guilt as me ?
My dad went to a nursing home for mental health 3 weeks ago, I too am full of nerves when I visit, I used to see him more often when he was cared for at home, but I find I pine for him too and wonder what he's up to, I dread going to see him.
I cant take my coat off as he trys to put it on thinking its his, yesterday he told my Mom & sister I want you two to do something about getting me out of here I dont like it here !
He has been dragging a cast iron chair over to the fence to escape, he messes with all the doors, it does cross my mind could he come home ? But realistically NO he cant because we wouldn't be able to keep him safe & he would repeatedly be walking in search of his Mom and possibly be aggresive to my Mom who's 80 because she would be trying to stop him.
Lots of people say its got to be better for you now your Dads in a home and yes that is true my life is easier but it certainly isn't rosy, I think I have forgot about the daily struggles we experienced while trying to care for him, like finishing work for the day & having to go look for him because he had been out a few hours and trying to keep him occupied so he wouldn't go walking.
I always say yes it is better as we hope he is safe but its a different kind of worry they don't know about the awkward conversations like when my husband said to make conversation ' Im going to watch the wolves with Joe '( his Grandson) & my Father who's an Albion supporter saying ' I can come with you if you want ' things like this break my heart.
A friend of ours lost their dear Mom to Alzeimers on Friday & it has really bought it home, it makes me feel very sad.
But to finish on a positive it is very reassuring other sons/daughters/carers feel exactly the same way, I hope in time he beleives the Care Home is his home.
I hope every else's journey eventually becomes easier too, take care x

 

[YorkshireLass]

Wow ! I cant beleive so many families are going through the same guilt as me ?
My dad went to a nursing home for mental health 3 weeks ago, I too am full of nerves when I visit, I used to see him more often when he was cared for at home, but I find I pine for him too and wonder what he's up to, I dread going to see him.
I cant take my coat off as he trys to put it on thinking its his, yesterday he told my Mom & sister I want you two to do something about getting me out of here I dont like it here !
He has been dragging a cast iron chair over to the fence to escape, he messes with all the doors, it does cross my mind could he come home ? But realistically NO he cant because we wouldn't be able to keep him safe & he would repeatedly be walking in search of his Mom and possibly be aggresive to my Mom who's 80 because she would be trying to stop him.
Lots of people say its got to be better for you now your Dads in a home and yes that is true my life is easier but it certainly isn't rosy, I think I have forgot about the daily struggles we experienced while trying to care for him, like finishing work for the day & having to go look for him because he had been out a few hours and trying to keep him occupied so he wouldn't go walking.
I always say yes it is better as we hope he is safe but its a different kind of worry they don't know about the awkward conversations like when my husband said to make conversation ' Im going to watch the wolves with Joe '( his Grandson) & my Father who's an Albion supporter saying ' I can come with you if you want ' things like this break my heart.
A friend of ours lost their dear Mom to Alzeimers on Friday & it has really bought it home, it makes me feel very sad.
But to finish on a positive it is very reassuring other sons/daughters/carers feel exactly the same way, I hope in time he beleives the Care Home is his home.
I hope every else's journey eventually becomes easier too, take care x

With you Lizzie in every way. I too have to think back to the all consuming struggle when I was on my own caring for mum, crying lots too.The crying is still there for me but I can now manage to leave the house which wasn't possible before mum moved into care. I see mum every day and think about her every part of every day and night. Never ever did I think it would come to this. Take care Lizzie and keep in touch xxx

 

[Lizzie6391]

With you Lizzie in every way. I too have to think back to the all consuming struggle when I was on my own caring for mum, crying lots too.The crying is still there for me but I can now manage to leave the house which wasn't possible before mum moved into care. I see mum every day and think about her every part of every day and night. Never ever did I think it would come to this. Take care Lizzie and keep in touch xxx