The Guilt Monster

[SWMBO1950]

Most the lovely people who post on this forum are carers or relatives of those suffering from some kind of dementia.

They post because they maybe don't know what to do about a situation, are very worried/frightened/upset or quite honestly are at the end of their tether.

However a common thread is "guilt".

The Invisibles and Meddling Relatives and Friends have no such emotions they just want to make life difficult (or not in the case of the Invisibles of course as they normally no where to be seen!!).

If you post here don't feel guilt you are doing your very best under what are often worrying and difficult circumstances. Where else would be be able to rant, rave, cry etc without being judged not to mention the wealth of experience that exists here - People don't know what it is to look after someone with dementia until they have done it ay!!

I have deep respect for all carers and you should have great pride in yourselves for battling against an oncoming tide.

I hereby declare guilt a dirty word/emotion. Be proud you are all incredible!!

 

[annied55]

That 5 letter word

Must admit that I feel quietly feel guilty about loads of ramdom stuff..........
Why can"t I make my AZ hubby happy and smiley so that the invisible adult kids want to support us.
Why do I feel guilty because I still try to work 1 day a week.
Why do I feel guilty because he grumbles about going to daycare(prison as he calls it)
Why do I feel guilty about using TP for a good rant on a really bad day.
Why did I feel guilty cos the cat caught a cute little field mouse
Why do i feel guilty cos I seem to live breathe and sleep AZ
Why do I feel guilty about grumbling about the very generous Carers Allowance!!!!!!!!

Because we are all human at the end of the day and not machines.
Keep up the good work you guys at TP xxxxx

 

[Butter]

What is guilt? Can anybody explain? Is it some inadequacy? Why do we feel it? Where does it come from?

 

[massolina]

I think it is some form of indoctrination we have from childhood. If I take any action in life I dont do so without logically thinking it out,therefor it is my considered choice so why should I feel guilty ? As I get older I realise that when push comes to shove you are on your own thesedays I feel less guilt in my life , but more anger and frustration.

 

[Isabella41]

Gulit that horrible monster

I think guilt is something foisted upon us by those around us. We don't think about we just take it and own it. I was discussing guilt with a colleague recently and she said "if someone were to give you a big steaming bag of poo and asked you to carry it around with you every day and then leave it by the side of the bed at night so its presence is always there. Would you do it" Obviously the answer is no but why then do we allow ourselves to be burdened by gulit that is piled on by other people.

My guilts are that I shouldn't feel the way about my mother that I do. My head rationlises and says in view of all that'a gone in the past I'm doing far more that alot would do in my circumstances.

I feel guilty that I am letting the side down at work when I go off to take yet another phone call about mum. Sense tells me others take personal calls but I still feel guilty.

I feel guilty that I come on here to moan when I know my life is not nearly as bad as others on here.

I feel guilty that no matter how hard I try not to let my mother and her issues impact so much on my relationship with my husband.

I could go on but there's no point. I think we probably all need to realise that we are human. We have failings and we say the wrong thing , do the wrong thing and fail at things. We are just normal people trying to cope with extraordinary circumstances and at the same time trying to keep a semblance of our own lives going.

Dementia is such a monster and is so unbelievebly cruel.

Isabella

 

[outofmydepth]

I feel guilty because I can't stop others doing what I know my mum wouldn't want them to do ................and that leaves her totally vulnerable


and a huge list of other guilts but this one is at the forefront today

 

[SWMBO1950]

Too right Isabella we do forget we are human (and not unfeeling machines)!!

I think guilt is something foisted upon us by those around us. We don't think about we just take it and own it. I was discussing guilt with a colleague recently and she said "if someone were to give you a big steaming bag of poo and asked you to carry it around with you every day and then leave it by the side of the bed at night so its presence is always there. Would you do it" Obviously the answer is no but why then do we allow ourselves to be burdened by gulit that is piled on by other people.

My guilts are that I shouldn't feel the way about my mother that I do. My head rationlises and says in view of all that'a gone in the past I'm doing far more that alot would do in my circumstances.

I feel guilty that I am letting the side down at work when I go off to take yet another phone call about mum. Sense tells me others take personal calls but I still feel guilty.

I feel guilty that I come on here to moan when I know my life is not nearly as bad as others on here.

I feel guilty that no matter how hard I try not to let my mother and her issues impact so much on my relationship with my husband.

I could go on but there's no point. I think we probably all need to realise that we are human. We have failings and we say the wrong thing , do the wrong thing and fail at things. We are just normal people trying to cope with extraordinary circumstances and at the same time trying to keep a semblance of our own lives going.

Dementia is such a monster and is so unbelievebly cruel.

Isabella

 

[Biddy88]

Some might class me as one of those Invisibles, because I haven't been there at the coal face every day, dealing with crisis after crisis like my sister, but I too feel guilt. I feel guilty that I haven't been able to help more often (I live 7 hrs away) and I feel guilty that I've gone behind Mum's back and spent many hours fighting and 'plotting' with social workers, hospitals and doctors to have her 'put away'. I feel guilty for 'abandoning' her in a care home - for letting her down because it's not what she would have wanted - and lying to her about her coming home. I feel guilty for harbouring feelings of resentment and anger towards her at times, even though I know it's only natural.

I also know in my heart that everything my sister and I have done is for Mum's safety and wellbeing, and has ultimately saved my poor Sis from what would have been a complete mental breakdown. I try and hang on to that thought, but now we have to face another guilt - from packing up/disposing of all her precious things and selling the home she has lived in for over 50 years without her knowledge.

 

[wirralgirl]

Guilt is normal

Some might class me as one of those Invisibles, because I haven't been there at the coal face every day, dealing with crisis after crisis like my sister, but I too feel guilt. I feel guilty that I haven't been able to help more often (I live 7 hrs away) and I feel guilty that I've gone behind Mum's back and spent many hours fighting and 'plotting' with social workers, hospitals and doctors to have her 'put away'. I feel guilty for 'abandoning' her in a care home - for letting her down because it's not what she would have wanted - and lying to her about her coming home. I feel guilty for harbouring feelings of resentment and anger towards her at times, even though I know it's only natural.

I also know in my heart that everything my sister and I have done is for Mum's safety and wellbeing, and has ultimately saved my poor Sis from what would have been a complete mental breakdown. I try and hang on to that thought, but now we have to face another guilt - from packing up/disposing of all her precious things and selling the home she has lived in for over 50 years without her knowledge.

I do sympathise. Although I do not live local to my Dad, my sister who lives locally works full time so I sorted out social workers etc and in the end Dad was diagnosed with Alzheimers. He became a danger to himself turning the central heating off in depths of winter, amongst other things. After numerous falls and trips to A and E it became clear that he could no longer stay at home. Carers came 4 times a day but the rest of the time he was alone. I lived in fear of the phone ringing to say he had had a fatal fall.

I investigated care homes and that is where he is now. I lived on and off at Dad's house one summer and organised renovation works in order to rent the house out to help pay for the care home fees. Like you, I felt really guilty in sorting Dad's possessions out (felt like an intruder), however, it needed to be done. I am sure that in time, you will know you have done the right thing and you will treasure the possessions you have kept and the memories they evoke when you look at them.

Hope this helps.

 

[chucky]

Right who wants to thump me first. GUILT. After 7 years of torture, madness and mayhem i am GUILT FREE. Those of you who know me well will know also the pain and trauma i endured putting my dad in care and the horrendous journey i had prior to that. Never in a million years did i think i'd ever stop feeling guilty and lo and behold i have. I still have bad days when i cry although they are few and far between, i have days when i hate my dad being in care (every day in fact) i have sleepless nights, i worry about him, i miss him dreadfully. It took me 3 years to get over the guilt which was crippling me in every sense. However, giving hope to all of you out there that havent quite reached my level, the guilt does fade away. Now and again it will jump on my shoulder trying to trip me up but mainly im guilt free. It can be done, so dont despair, the stress and worry never goes away but the guilt monster can be kept at bay through time. Everyone one of us here have experienced the guilt monster, thankfully we have TP and each other to support us on the bad days and the load seems lighter just by belonging to a virtual world. Lets all stand firm and challenge this invisible force that robs us of our loved ones and keep on supporting through the journey and onwards when the journey ends.

 

[kingmidas1962]

That is one of the most helpful things I think I have read, as I am at a stage something like the beginning of your journey.

Thanks for being brave enough to say it!

Right who wants to thump me first. GUILT. After 7 years of torture, madness and mayhem i am GUILT FREE. Those of you who know me well will know also the pain and trauma i endured putting my dad in care and the horrendous journey i had prior to that. Never in a million years did i think i'd ever stop feeling guilty and lo and behold i have. I still have bad days when i cry although they are few and far between, i have days when i hate my dad being in care (every day in fact) i have sleepless nights, i worry about him, i miss him dreadfully. It took me 3 years to get over the guilt which was crippling me in every sense. However, giving hope to all of you out there that havent quite reached my level, the guilt does fade away. Now and again it will jump on my shoulder trying to trip me up but mainly im guilt free. It can be done, so dont despair, the stress and worry never goes away but the guilt monster can be kept at bay through time. Everyone one of us here have experienced the guilt monster, thankfully we have TP and each other to support us on the bad days and the load seems lighter just by belonging to a virtual world. Lets all stand firm and challenge this invisible force that robs us of our loved ones and keep on supporting through the journey and onwards when the journey ends.

 

[SWMBO1950]

I do not consider you an invisible Biddy as despite the distance you do get involved unlike my sister who thinks a phone call (she lives in Australia) every 2 weeks or so is ok but never calls me to ask exactly how my mum is and what she is going through' She obviously thinks this is sufficient. Having described my mother as My Burden (sorry for those who have heard it before from me) I realise she is not really that interested and that is how she obviously would be viewing her mother if she was here.

It goes without saying I now have nothing to do with her - I just look after my mothers needs to the best of my ability ensuring she wants for nothing. I have been told I should forgive her but Hell Will Freeze Over First!!

My guilt comes from my lack of patience sometimes but I do try very hard and my mother wants for nothing - I see to that!

Some might class me as one of those Invisibles, because I haven't been there at the coal face every day, dealing with crisis after crisis like my sister, but I too feel guilt. I feel guilty that I haven't been able to help more often (I live 7 hrs away) and I feel guilty that I've gone behind Mum's back and spent many hours fighting and 'plotting' with social workers, hospitals and doctors to have her 'put away'. I feel guilty for 'abandoning' her in a care home - for letting her down because it's not what she would have wanted - and lying to her about her coming home. I feel guilty for harbouring feelings of resentment and anger towards her at times, even though I know it's only natural.

I also know in my heart that everything my sister and I have done is for Mum's safety and wellbeing, and has ultimately saved my poor Sis from what would have been a complete mental breakdown. I try and hang on to that thought, but now we have to face another guilt - from packing up/disposing of all her precious things and selling the home she has lived in for over 50 years without her knowledge.

 

[jan080860]

My dad, his strange behaviour and getting mum to accept reality

My dad has vascular dementia his condition has deteriorated very rapidly over the last six weeks of so.
He gets fixated on a particular problem. At the moment he believes that there is something very wrong with his anus. We have just established that he has been using Vaseline and removing his poo with his hands. We have had him to the doctor loads of times and they gave him senna tablets in case he's constipated.
He eats so little i think that he simply has no waste to poo and we keep trying to tell him this to no effect.
My mum is having great difficulty accepting that dad has dementia and has said things like he is taking the ****, is being deliberately difficult etc etc. She thinks the hand up his bum thing is him being a "dirty old man".
I'm at the end of my tether and don't know how 1. to stop my dad from doing this and 2. getting my mum to accept what is happening.
Can anyone help with practical suggestions please?

 

[Witzend]

What made me feel the very worst guilt was absolutely dreading to go and see my own mother. This was after she went into the CH and was constantly demanding to go home and accusing us all of conspiring against her. This went on to some extent for ages and my stomach would be in knots every time I got in the car to go.

And sometimes I would chicken out at the last minute because I just couldn't face it, so that was another load of G on top. Thankfully she's mostly past all that now, but that's only because she's so much worse.

It's horrible to dread visiting your own mother and I often hope and pray it'll never come to that with me and my own daughters - can't bear to think of them thinking, 'Oh, Lord, I really ought to go and see Mum...' - with their stomachs getting that horrible feeling just at the thought.

Funnily enough I don't feel much guilt at having often hoped she'd just go peacefully to sleep and never wake up - for some years now it would have been the kindest thing. (she'll be 94 on Sat and is such a poor, pathetic old thing now.) Having said that, though, if the CH rang tomorrow morning to say that's exactly what happened I kinow I'll feel awful for having wished it, for ever having chickened out of going to see her, and for not having been with her at the end.

 

[Butter]

You might not Witzend .... I spent years wishing my mother would die and dreading going anywhere near her. And now she is dead I am glad her suffering is over and I am just glad and the dread of going anywhere near her has also gone. No guilt at all.

 

[frazzled1]

Most the lovely people who post on this forum are carers or relatives of those suffering from some kind of dementia.

They post because they maybe don't know what to do about a situation, are very worried/frightened/upset or quite honestly are at the end of their tether.

However a common thread is "guilt".

The Invisibles and Meddling Relatives and Friends have no such emotions they just want to make life difficult (or not in the case of the Invisibles of course as they normally no where to be seen!!).

If you post here don't feel guilt you are doing your very best under what are often worrying and difficult circumstances. Where else would be be able to rant, rave, cry etc without being judged not to mention the wealth of experience that exists here - People don't know what it is to look after someone with dementia until they have done it ay!!

I have deep respect for all carers and you should have great pride in yourselves for battling against an oncoming tide.

I hereby declare guilt a dirty word/emotion. Be proud you are all incredible!!

I couldnt agree more that we are all doing such a super job, saving the NHS billions in the process and should give ourselves a well earned pat on the back and never feel guilty! I notice many threads on here from people who feel guilty that they resent their caring role cos they feel "trapped" and that they have lost their prospects for their own careers. I would like to think that such is the strength of character of all of us on here, and the patience, not to mention the high education (mostly self-taught along the way), that even if by the time we "get our lives back" we are past retirement age ourselves, if we WANT to re train and go into the jobs marketplace, employers will be proud to have us work with them. The important thing is, whilst we are carers, to keep in regular touch with our GPS for health checks for us carers, and continuing support in all areas. As for critical relatives...someone told me along time ago that "people only ever critisize or bully others to try to cover up their own inadequacies". If I am in doubt how to do something and woried then i just look for the answers to my questions on here because the best answers come from those who have been down this route and truly understand what its like.

 

[Witzend]

You might not Witzend .... I spent years wishing my mother would die and dreading going anywhere near her. And now she is dead I am glad her suffering is over and I am just glad and the dread of going anywhere near her has also gone. No guilt at all.

Thanks, Butter - let's hope so, and so glad you didn't feel bad. At least I don't dread going to see her any more - hardly ever stressful any more, or at least nothing like it used to be. Very often she won't even wake up properly - I always take a book with me now. I just sit beside her holding her hand and reading.

 

[Butter]

Thanks, Butter - let's hope so, and so glad you didn't feel bad. At least I don't dread going to see her any more - hardly ever stressful any more, or at least nothing like it used to be. Very often she won't even wake up properly - I always take a book with me now. I just sit beside her holding her hand and reading.

That sounds happy and peaceful. I am so glad. I never was able to do such a thing with my mother.

 

[Witzend]

My dad has vascular dementia his condition has deteriorated very rapidly over the last six weeks of so.
He gets fixated on a particular problem. At the moment he believes that there is something very wrong with his anus. We have just established that he has been using Vaseline and removing his poo with his hands. We have had him to the doctor loads of times and they gave him senna tablets in case he's constipated.

Can anyone help with practical suggestions please?

Oh, dear, Jan, this is horrible for you and your mum, but I'm afraid this sort of thing can happen with dementia. Can you print off some of the replies from here to show your mum, so that she realizes it's the illness and not just him being difficult? Maybe this stage will pass eventually - let's hope so. I don't suppose taking the Vaseline away would help - he'd probably try to do it anyway, or use something else.

I hate to say this on here since the person she was before would be mortified, but sometimes when I take my mother to the loo she will try to get the last bit out with her fingers and it's impossible to tell her not to. At other times she will delve into her pants (this is in the public area of the care home) and bring forth a little nugget - oh, look! She doesn't even seem to realize what it is. Please feel free to tell or show your mum this.

The thing with dementia is, no matter how often you try to tell someone something, or explain that they shouldn't do this or that, it makes not a blind bit of difference. And this can be one of the very hardest things to learn with this horrible disease.

Sorry, not much help, I know.

 

[Hollyanna85]

15 years ago I was too young to understand why grandma got so angry and frustrated with me and my brother, and as I grew into my teens I began to understand and consequently felt guilty for resenting her snappy intolerance and for making us petrified of doing something wrong and aggravating her. Then came the guilt of not seeing her often enough, as she deteriorated. Guilt for leaving grandad and the other side of the family to support her. Granted I was still a teenager at the time and 200 miles away. In my early twenties my guilt took on a different form - guilt for dreading the annual visit to the CH every Boxing Day, to stand with grandad in her little room as she stared blankly at the ceiling, not seeing or hearing anything. Guilt while I held her juice bottle on her mouth like a baby. Guilt for knowing how dignified and astute she'd been, and knowing she'd rather be dead, and wishing she was myself, for her sake. Now 15 years after the first symptoms reared their ugly head, she's finally been released from the confines of her body. Guilt soared as the relief that she'd passed away soared through me. Now a few months after her death guilt is never getting to know the grandma she was, when I was too little to appreciate just how important knowing who my real grandma was, and that guilt I hope will spur me on to get to know my grandma through my grandad who is happily still very healthy and sharp as a pin. I do hope the guilt dissipate with time. No need to reply, my first time on this site and had an overwhelming urge to dump some baggage I've not really shared with anyone before... X