I am new to TP but got a lot of strength from reading all the blogs late last night. It is nice to hear from people who are going through the same as me. I am at the edge now. I have been caring for my mum as her full-time carer since her diagnosis of Alzheimers in 2007. I spent 3 years caring in the Caribbean but since Sept 2011 we returned to the UK as her conditioning was worsening and we had lost our father in the June of that year. I am 52 and always had a very active life with a responsible job. Since caring for mum I have given up work and am in the home for near 24/7. I have a large family and although they are supportive the full responsibility lies with me but I'm not sure I can do it anymore. Mum is in the Final stages; is bedridden, doesn't speak, cannot communicate in anyway and although we would like to think she knows us we cannot be sure. I am really struggling now and though I love mum very much I feel that I need to put her into a nursing home however I am fighting with the feeling of guilt. My siblings all agree that it is time as they are getting worried about me but I really wanted to care for her until the end as I did with my father. How do you cope with the guilt and feeling of letting them down.
Guilt
- Thread starter Toree
- Start date
I thought I'd reply as you havent had any responses yet ...
...the guilt monster will always be there but (from experience) gets smaller as time goes on ...
I get 'the guilts' too, often, I have dad in care and mum in sheltered housing after having a breakdown caring for him. She would like nothing better than to live with me but I just cant.
I try to think about how I feel as I am now, of sound mind, thinking about whether I would want to put my daughter through what my mum puts me through, and the answer is a resounding 'no'
If your mum could tell you she would say the same, I'm sure - that you've done so much but its time to put yourself first now.
I know that may not make it easier - just my take on a very difficult subject. You'll see much written here about guilt!
xxxxxx
...the guilt monster will always be there but (from experience) gets smaller as time goes on ...
I get 'the guilts' too, often, I have dad in care and mum in sheltered housing after having a breakdown caring for him. She would like nothing better than to live with me but I just cant.
I try to think about how I feel as I am now, of sound mind, thinking about whether I would want to put my daughter through what my mum puts me through, and the answer is a resounding 'no'
If your mum could tell you she would say the same, I'm sure - that you've done so much but its time to put yourself first now.
I know that may not make it easier - just my take on a very difficult subject. You'll see much written here about guilt!
xxxxxx
Can I just say that, if you put your Mum in a care home, you will still be her carer. It is just that the time has come for others to take over the day to day practicalities, which anyone with sensible training and attitude can do, You are then the carer/ caring daughter providing the loving support, making sure things are done properly etc. By handing over the physical care, you can remain well enough and able to provide the emotional loving care that only you and your family can provide.
I know how hard it is as my Mum has just gone into care. I wasn't providing her hands on physical care but I was doing all the checking, chasing and taking and making 20 -30 phone calls a day. I dreaded Mum going into care and, whilst she isn't poorly in the same way as your poor Mum, I now wish she had gone in way before this.
Please don't feel guilty - just look at it that you are being selfless by handing the physical care to staff (who aren't on duty 24hrs a day) to manage so you are able to give your Mum the best emotional, caring support for as long as needed. You don't want it to end up in a crisis situation where she needs to be admitted to somewhere unplanned and maybe not ideal.
Don't forget you matter too so factor your needs and health into the decision,
Hugs, take care
Celia
I know how hard it is as my Mum has just gone into care. I wasn't providing her hands on physical care but I was doing all the checking, chasing and taking and making 20 -30 phone calls a day. I dreaded Mum going into care and, whilst she isn't poorly in the same way as your poor Mum, I now wish she had gone in way before this.
Please don't feel guilty - just look at it that you are being selfless by handing the physical care to staff (who aren't on duty 24hrs a day) to manage so you are able to give your Mum the best emotional, caring support for as long as needed. You don't want it to end up in a crisis situation where she needs to be admitted to somewhere unplanned and maybe not ideal.
Don't forget you matter too so factor your needs and health into the decision,
Hugs, take care
Celia
The guilt is there, but you can handle it better if you are caring for your own health too.
It is so important to take a break, go away come back and be the caring daughter to you Mom. When you have a break, you feel stronger and able to handle the situation in a better way.
Me too had to make the decision, when it was the time to take my Mom to a nursing home.
Like you I was a daughter and a carer. Now I am a full time Carer to others, and even though it is not my mom anymore, I still need to have a break now and then.
Think that you'll be fresh when visiting your mom. I am so sorry to hear that your mom is in the final stages of AD, and if you can just hold her hand and talk with her, it is caring more than actually the necessary physical care.
Keep well and are care
It is so important to take a break, go away come back and be the caring daughter to you Mom. When you have a break, you feel stronger and able to handle the situation in a better way.
Me too had to make the decision, when it was the time to take my Mom to a nursing home.
Like you I was a daughter and a carer. Now I am a full time Carer to others, and even though it is not my mom anymore, I still need to have a break now and then.
Think that you'll be fresh when visiting your mom. I am so sorry to hear that your mom is in the final stages of AD, and if you can just hold her hand and talk with her, it is caring more than actually the necessary physical care.
Keep well and are care
Guilt, such a little word for what I am feeling tonight. My 88 year old mother has been a sufferer for 4 years. When it was obvious that she couldn't cope alone my brother and his wife moved home to provide accommodation for her with them. Now 2 years down the line it is becoming so difficult to care for her, needing someone with her 24/7. She has stayed with me for a week to 10 days each month to give them a rest. I must admit that her last visit was very difficult, friends and colleagues commented about their worries for my health while I had her. As we all still work, caring is becoming very hard, but this week mother became very aggressive and nasty to my sister-in-law they decided it was time to consider placing her in a care home. Today the broached the subject and she has cried and screamed all day. Saying she did have children and now she has none, no one cares she wants to die! I have just come off the telephone as l live over 100 miles away, I don't know what to do, she needs more care than we can provide but her condition doesn't allow her to understand, we would visit her often an she could still come and stay for short breaks, I have promised to go and visit her Saturday, Please what do I say?
To: Jackiefd
I have just replied to the thread Guilt and reading your post I can quite understand your feeling of guilt and the reason and practicalities in caring full time for your Mom.
Sadly it is a regular pattern showing anger and sometimes aggression towards the children and the carers. The fact that your Mom is saying that she has no children anymore, wanting to die, screaming all day is a way of expressing her frustration too.
If you and your family can talk about the care needed for your mother sometime it helps if you all can talk away from your mother and then gently talk with her. It is not easy. There is no magic formula but you have to consider her well being and the family members involved too.
Keep well and Courage
I have just replied to the thread Guilt and reading your post I can quite understand your feeling of guilt and the reason and practicalities in caring full time for your Mom.
Sadly it is a regular pattern showing anger and sometimes aggression towards the children and the carers. The fact that your Mom is saying that she has no children anymore, wanting to die, screaming all day is a way of expressing her frustration too.
If you and your family can talk about the care needed for your mother sometime it helps if you all can talk away from your mother and then gently talk with her. It is not easy. There is no magic formula but you have to consider her well being and the family members involved too.
Keep well and Courage
To: Jackiefd
I have just replied to the thread Guilt and reading your post I can quite understand your feeling of guilt and the reason and practicalities in caring full time for your Mom.
Sadly it is a regular pattern showing anger and sometimes aggression towards the children and the carers. The fact that your Mom is saying that she has no children anymore, wanting to die, screaming all day is a way of expressing her frustration too.
If you and your family can talk about the care needed for your mother sometime it helps if you all can talk away from your mother and then gently talk with her. It is not easy. There is no magic formula but you have to consider her well being and the family members involved too.
Keep well and Courage
I have just replied to the thread Guilt and reading your post I can quite understand your feeling of guilt and the reason and practicalities in caring full time for your Mom.
Sadly it is a regular pattern showing anger and sometimes aggression towards the children and the carers. The fact that your Mom is saying that she has no children anymore, wanting to die, screaming all day is a way of expressing her frustration too.
If you and your family can talk about the care needed for your mother sometime it helps if you all can talk away from your mother and then gently talk with her. It is not easy. There is no magic formula but you have to consider her well being and the family members involved too.
Keep well and Courage
This is horrible for you all, I am so sorry. But I don't honestly think it will help to discuss residential care with your mother - she has probably reached the stage where she is simply unable to understand that it would be best, or is at all necessary, and that the family are absolutely on their knees trying to care for her. So often these things have to be arranged with a certain amount of well-meant deception - it's just for a little holiday, it's just until you're a bit better, it's just while the builders/plumbers are in, or the good old 'the doctor says...' - in other words, whatever might cause least distress for the moment, and if short term memory is very bad you can often say the same thing over and over.
But it is so very hard and soul-wrenching, I know. So often with this horrible disease there are no easy answers.
I felt guilty with my greatgrandfather when he had Alzheimer's and I felt like I didnt do enough and he was in bed two weeks before he died and he died on August tenth of this year I cry every day it is so hard
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Ashley
Sent from my iPhone using Talking Point mobile app
Ashley
Dear Ashley, I am so sorry to hear about your grandfather. Of course you are going to feel terribly sad now, but please don't let yourself be eaten up with guilt - you are only 15 and I am sure your grandfather would not want you to be unhappy because of him. I am sure that many of us wish, after someone has died, that we had done more, or said something we did not say, or whatever, when it's too late. But I am quite sure your grandfather would want you to have happy memories, to enjoy your life and be happy.
Guilt is an awful thing we all have to deal with - I spent months feeling guilty that I still work, guilty for not spending enough time with dad , then guilty for not focusing enough on work ! It's a viscious circle sometimes!
You can only do what you can do and I have learnt now that as dad has no concept of date or time etc he doesn't realise if I go there every day or just once a week - so it prompted me to take a step back as I was making myself stressed, ill and on a fast track to a burn out.
My boss in work advised me to stop thinking of everything so logically (I do an IT based job so everything has a process and a defined timed end result - which I love!) and to work in the moment with dad - so dad functions best when we talk in the past - he's more lucid so I have stopped trying to keep him in the present it stresses us both out!
In terms of CH - I have set in my mind a promise that I will help him remain at home whilst its manageable and safe not only for him but me and my welfare too - after all you will still have a life to hold together after they have gone.
I also when making decisions for dad think about what the pre dementia dad would have wanted for him and everyone else and this makes it easier too.
Please do not feel guilty - it's a natural response when dealing with ones we love but also not the most rational and safest of emotions
Hugs
T x
You can only do what you can do and I have learnt now that as dad has no concept of date or time etc he doesn't realise if I go there every day or just once a week - so it prompted me to take a step back as I was making myself stressed, ill and on a fast track to a burn out.
My boss in work advised me to stop thinking of everything so logically (I do an IT based job so everything has a process and a defined timed end result - which I love!) and to work in the moment with dad - so dad functions best when we talk in the past - he's more lucid so I have stopped trying to keep him in the present it stresses us both out!
In terms of CH - I have set in my mind a promise that I will help him remain at home whilst its manageable and safe not only for him but me and my welfare too - after all you will still have a life to hold together after they have gone.
I also when making decisions for dad think about what the pre dementia dad would have wanted for him and everyone else and this makes it easier too.
Please do not feel guilty - it's a natural response when dealing with ones we love but also not the most rational and safest of emotions
Hugs
T x
Ashley that's an awful lot for someone so young to feel! I have a teenage daughter aged 15 and a son age 13 both react to their grandads AD in very different ways. My daughter cries a lot when she sees how bad he had become but as I say to her there is nothing you can do other than still love them.
I hope this helps its a lot to deal with at 15 when you have a whole heap of normal teenage worries as well!
I am sure in yr grandads heart he knew you loved and cared for him.
Keep smiling
Hugs T
My Mum has just moved to a nursing home so I know what you are all going through-guilt/sadness/anger-it's all there.
Toree,
You have already managed for longer than many would. Would your Mum even be aware of being in home at this stage? You could visit often and just sit with her as someone else has said.
Jackie-you too have experienced hands on care and can see how difficult it is-I would agree with the poster who said there is no point trying to get your Mum to agree to care-she is past that stage-little white lies and subterfuge are what is needed-it's kinder.
Ashley, I have a son of 15 and he wasn't blessed with a grandfather who could contribute and enrich his life-one has had ALZ for nearly as long as he has been alive and the other was not involved in his grandchildren's lives. You are so lucky to have had that but the downside is that you are now suffering. I feel for you being so young-your great grandfather was obviously a great man. You are so brave also to post here-I don't think we've heard from anyone so young. I noticed a post from you a while back. If you want more feedback, starting your own thread would probably get you more responses.
Take care
M
Toree,
You have already managed for longer than many would. Would your Mum even be aware of being in home at this stage? You could visit often and just sit with her as someone else has said.
Jackie-you too have experienced hands on care and can see how difficult it is-I would agree with the poster who said there is no point trying to get your Mum to agree to care-she is past that stage-little white lies and subterfuge are what is needed-it's kinder.
Ashley, I have a son of 15 and he wasn't blessed with a grandfather who could contribute and enrich his life-one has had ALZ for nearly as long as he has been alive and the other was not involved in his grandchildren's lives. You are so lucky to have had that but the downside is that you are now suffering. I feel for you being so young-your great grandfather was obviously a great man. You are so brave also to post here-I don't think we've heard from anyone so young. I noticed a post from you a while back. If you want more feedback, starting your own thread would probably get you more responses.
Take care
M
Hi everyone. Sorry I have not responded to your posts. I have so busy helping organise a 75th day party for my aunt (mum's sister). This also upset me because I so wanted my mum to be a part of it.
Thank you all for your comments. I know now that it is the right decision and that I need to look after myself. I appreciate the comment that I don't necessarily need to the the physical care which at the moment is done by carers anyway and hopefully having the space will make me able to give the emotional support to her. If I'm honest I know my mum wouldn't want me to have given up so much of my life to care for her as she was such a selfless person.
I feel for everyone else who is going through what I am going through - I too have told my children that I don't want them to go through what I have if I get to that stage so hopefully they won't feel the guilt when the time comes.
This forum does help to give strength to those in the same position - thank you
Thank you all for your comments. I know now that it is the right decision and that I need to look after myself. I appreciate the comment that I don't necessarily need to the the physical care which at the moment is done by carers anyway and hopefully having the space will make me able to give the emotional support to her. If I'm honest I know my mum wouldn't want me to have given up so much of my life to care for her as she was such a selfless person.
I feel for everyone else who is going through what I am going through - I too have told my children that I don't want them to go through what I have if I get to that stage so hopefully they won't feel the guilt when the time comes.
This forum does help to give strength to those in the same position - thank you
Much the same here, KM. I felt dreadfully guilty for ages at putting my mother in a CH, but at the same time I knew I simply could not have had her living with us. She could never have been been left, and it wouldn't have meant just giving up my whole life, but OH's too. We could never have gone away, or gone out in the evening, never mind never enjoying any peace in the evenings or undisturbed nights, and OH was working long hours at the time in a demanding job.
And if I'm honest I would never have had my mother to live with us even without AD. I do love her, but she was never the easiest person anyway - so hyper sensitive and touchy you only had to twitch an eyelash the wrong way and she'd get upset or take offence - and then have a 'face' on for 3 weeks. She could have a 'face' on even in her voice over the phone. She would often come to stay, but it always counted myself very lucky if we got through more than 3 or 4 days without the dreaded 'face' rearing its head. I had dreaded that face ever since I was little - it was something she'd done ever since I could remember. And yet when there was no face, she could be so lovely and loveable, which made it even more of a shame.
The guilt has gone now, but that's largely because she's so much worse after 6 years that she no longer asks to go home. The very worst guilt I ever felt, and it truly was crushing, was when she would say pathetically, 'Can't I come home with you?' and I felt like about the worst person in the world for telling her yet another LWL.
Someone said something I found poignant which was when someone told their doctor they were feeling guilty as they could no longer care for their mother, the doctor said it was time to let the care home take over the care so she could become her daughter again.
I think that was a lovely way of looking at it.
I think that was a lovely way of looking at it.
Here's my advice. I haven't read all the responses, only the initial post.
After spending a small fortune on seeing a psychologist. I was told, that guilt is a learned behaviour, it's not an actual emotion.
We have been taught to feel guilt, it's not real. So try not to let guilt get the better of you, we've been conditioned to feel guilt, and it's not legitimate, especially when we have absolutely no fault in alzheimers, and we cannot in any way fix it or improve it.
You have done alot for your mum, over a very long period of time. A whole lot more than many other children of alzheimers sufferers, and you have no need to feel guilty, none of it is your fault, and try as you might, you can't fix it. Give yourself a break, you've done nothing wrong.
The work caring for a person with alzheimers often needs a whole team of people to carry out. You've done amazing amounts already. It's ok to ask for help, and it's ok even to demand help.
After spending a small fortune on seeing a psychologist. I was told, that guilt is a learned behaviour, it's not an actual emotion.
We have been taught to feel guilt, it's not real. So try not to let guilt get the better of you, we've been conditioned to feel guilt, and it's not legitimate, especially when we have absolutely no fault in alzheimers, and we cannot in any way fix it or improve it.
You have done alot for your mum, over a very long period of time. A whole lot more than many other children of alzheimers sufferers, and you have no need to feel guilty, none of it is your fault, and try as you might, you can't fix it. Give yourself a break, you've done nothing wrong.
The work caring for a person with alzheimers often needs a whole team of people to carry out. You've done amazing amounts already. It's ok to ask for help, and it's ok even to demand help.
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I don't post here often.
My wife has Vascular dementia following a stroke four years ago, during the last year following a fall which broke her hip and arm the dementia has worsened.
Following another fall.one of several this year my wife was admitted to hospital with a suspected fracture, where they carried out a thorough mental health assessment.
I had been caring for four years and the last year I put together a private care team from local professional carers.
Even so it was 24/7,and I was verging on a breakdown, my doctor told me to stop as did our care team.
Following the assessment in hospital I was told that I had done more than most people they knew in my position and it was time for a nursing home.
My wife has been in the home for four weeks, I visit nearly every day as it is only 10 miles away, and we go out in the car to the nearby seaside ,visit gardens and also some of the farms where I work as a consultant.
Also many friends visit her ,some with their dogs.
The nursing home is an old Edwardian manor house in the country with just 20 residents and around 10 care and nursing staff present at any one time, they don't wear uniforms and wear pyjamas and dressing gowns at night to help the residents realise it is bedtime.
My wife is slowly coming to terms with her new "home", she has a lovely large room with views over the gardens and farmland ,so a bit like our home and I feel like a new person as I actually get to sleep at night.
But...I do feel really guilty and wish she was home with me, but looking at it sensibly, which is difficult sometimes, if I couldn't really cope any more before she went into hospital ,how on Earth could I now?
I think it is natural to feel rotten about it ,but I know that my wife would understand and insist that the home is correct ,if she understood the situation.
My wife has Vascular dementia following a stroke four years ago, during the last year following a fall which broke her hip and arm the dementia has worsened.
Following another fall.one of several this year my wife was admitted to hospital with a suspected fracture, where they carried out a thorough mental health assessment.
I had been caring for four years and the last year I put together a private care team from local professional carers.
Even so it was 24/7,and I was verging on a breakdown, my doctor told me to stop as did our care team.
Following the assessment in hospital I was told that I had done more than most people they knew in my position and it was time for a nursing home.
My wife has been in the home for four weeks, I visit nearly every day as it is only 10 miles away, and we go out in the car to the nearby seaside ,visit gardens and also some of the farms where I work as a consultant.
Also many friends visit her ,some with their dogs.
The nursing home is an old Edwardian manor house in the country with just 20 residents and around 10 care and nursing staff present at any one time, they don't wear uniforms and wear pyjamas and dressing gowns at night to help the residents realise it is bedtime.
My wife is slowly coming to terms with her new "home", she has a lovely large room with views over the gardens and farmland ,so a bit like our home and I feel like a new person as I actually get to sleep at night.
But...I do feel really guilty and wish she was home with me, but looking at it sensibly, which is difficult sometimes, if I couldn't really cope any more before she went into hospital ,how on Earth could I now?
I think it is natural to feel rotten about it ,but I know that my wife would understand and insist that the home is correct ,if she understood the situation.
It's so hard when you have to put your parent in a home but you have to keep telling yourself you're doing it for all the right reasons ie so they're safe and looked after. My mum went into a home two months ago and is very angry and upset with us for 'locking her up and throwing away the key' despite the fact that actually, she can go out for a walk when she wants (at the moment she is returning to the home although she has gone back to her old house a couple of times and had to be brought back by a neighbour). i live a long way away so have been calling mum every couple of days but this seems to be counter-productive. She uses the call to just rail against me and my brothers and it leaves me feeling exhausted and so guilty. I'm now considering minimising phone contact. There are no easy solutions but you have to remember that a care home is the best solution - for both parties. Your sanity is paramount in all of this. Good luck!
