A person with dementia and their carer being supporter by their carer

Guilt and dementia: How to manage guilty feelings as a carer

Guilty feelings can be difficult to deal with as a carer of somebody living with dementia. Read our advice to help identify and manage guilt.

Caring for a person with dementia can be very challenging. You’re likely to experience an extreme range of emotions, one of which is often guilt. 

You might feel like you’re not doing a good enough job of caring for a loved one, or you may be struggling to accept help. These feelings are completely normal, and very common. 

It’s important to identify and acknowledge any feelings of guilt, so you can start managing and working through them. Here are some common situations that might lead to guilt, along with some advice on managing your feelings. 

7 ways carers may feel guilt, and how to manage them:

1. ‘Other carers seem to manage better’

Meeting up with other carers at support groups or reading about other people’s experiences might make you think other carers are coping better than you are. You may feel guilty you haven’t lived up to your own expectations, or to the expectations you believe other people have of you. 

But remember, there’s no such thing as the ‘perfect carer’, and it’s important not to be too hard on yourself. Are you being realistic about what you can achieve? If not, can you reduce any of the expectations you have of yourself, or get any more help? 

Sometimes just letting family and friends know how you feel may give them the opportunity to help out.

2. How you treated the person before they were diagnosed

Sometimes, carers feel bad about how they behaved towards the person before they were diagnosed with dementia. For example, you might have shown feelings of irritation or criticism towards them at some point.

Try to remember that everyone gets frustrated with their partner or family members from time to time. You weren’t to know that they had dementia and you couldn’t have foreseen what the future held. Dementia can have a profound effect on a person’s behaviour and without advice, guidance, or the knowledge of an underlying condition, these changes can be very difficult to understand.

3. Getting angry or irritated

If you feel angry and frustrated, you might occasionally have angry outbursts towards the person you’re caring for. Many carers find it hard to forgive themselves in this situation.

Try to remember that caring can be very stressful, and anger or frustration are natural in this situation. Taking some time for yourself to do something that you enjoy – such as reading or cooking – can help to improve these feelings. Exercise and relaxation techniques, such as deep breathing, can make you feel happier and less stressed, and can relieve your anger and frustration. 

At times when you do find yourself becoming angry or frustrated, it can help to leave the room for a while to allow things to settle.

4. Wanting time apart

You may feel guilty about having time to yourself, but everyone needs to recharge their batteries now and again. It’s very important for carers to enjoy some time away from their caring role.  

Many carers find that giving themselves some time apart, and doing things that make them feel happy and positive, makes them more able to fulfil their role.

If the person you’re caring for can't be left alone, ask friends or family whether they could pop in for a short time, or whether they could come and stay with the person for a few days.

5. Accepting help

Many carers feel they should be able to manage without any help. But looking after a person with dementia can be exhausting. 

You may be able to free up some valuable time by accepting respite care, such as help in the home, day care services, or residential care services. This will give you more energy and may enable you to go on caring for longer.

Even if the person with dementia is initially upset about others becoming involved, they may well come to terms with the idea. The first experience of separation often makes carers feel guilty and unable to relax, but in time you will probably get used to the separation and will be able to see the benefits this can bring.
 

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Discussions about Guilt in our online community, Talking Point...
Discussions about Guilt...

6. Moving into residential care

Carers often feel that moving the person into a home is a betrayal. You might think you’ve let the person down, or that you should have coped for longer. You may have previously promised the person you would always look after them at home and now feel forced to break that promise. 

Remember that any promises were probably made in a completely different situation. The move to a care home doesn’t need to mean that you give up your caring role completely – it’s just a different way of caring. 

Some carers find residential care helps them to have a better relationship with the person, as their time together can be more special, less stressful, and more like it used to be before the constant worry about practicalities.

7. The person’s death

When someone with dementia dies, many carers say they initially feel some sense of relief. Then they feel ashamed or shocked that they have had these feelings.

Rest assured, relief can be a normal reaction. Many carers go through much of their grieving process throughout the illness, as they notice each small deterioration in the person. Talk to people about your feelings and remember there is no one ‘right’ way to feel when someone you have been caring for has died.

Do you have experience of dealing with guilt or any advice for anyone who might be struggling with these feelings? Let us know in the comments below, and help other people realise they’re not alone.

Dementia Connect support line
Our dementia advisers are here for you.

142 comments

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I have found that as a result of being made redundant as a result of covid 19 I am really in the thick of caring full time with my friend/ landlord who has got Vascular Dementia that I do get irritated and then guilt ridden as I remind myself that it is the condition and not the person.

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I looked after lorraine my wife.from march 2012 when she had had all the tests and was diagnosed with alzheimers.it was a massive shock.she was not only my wife and the mother of my children she was my best friend.we loved each others company and although went out with friends etc. we were just as happy on our own together.i promised her that i would look after her and would never put her in a home.i also promised her that i would do all the looking after her she needed as she said often that she was embarrassed to think that people would look at her as a as she put it nutter.so i kept my promise until feb 2020 when things had got to bad for me to cope .i had been dressing her cleaning her feeding the only time i asked for assistance was when she started wandering and i had door alarms fitted so i knew when she left the house.it broke my heart when it got so bad i had to take her to a&e and they sectioned her.and then placed her in a home.then along came covid and lockdown.now when i get to see her its with a house carer she has detiriorated so bad she has had a couple of seizures brought on by an uti infection..when i see her now she is but a shadow of the lady i loved.she gets agitated on my visits and so restless i think she blames me for it all and cant bear to be near me..when i am home on my own i think that this is some sort of vendetta against us for daring to be so happy for 50 or so years together.i stay at home mostly because i feel i am not good company anymore.

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I think it sounds like you did an amazing job and clearly love your wife very much. Please don’t feel guilty. My heart goes out to you. You were just in a very very difficult situation. Bless you x

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Mum and I put dad into respite care 5 days ago. She had been struggling with round the clock care for months and I've done what I can to help. The first night we took him in they called to day he was shouting for me and they couldn't settle him. Mum is embracing the respite but I can't stop crying, I feel like I am grieving and the guilt is horrific. She does not want to call the home to see how he is now and I respect that, what ever they say she needs her rest. I cannot bear the thought of him being lonely and scared, thinking he has been abandoned. He's such a proud man, wouldn't let me help with personal care and certainly wouldn't let carers in. I feel like a failure and that I have had to chose between my mums wellbeing and my dad's. It's just 2 weeks but I worry if he will have got worse and if he will ever forgive us when he comes home. I'm trying to work but can't concentrate, I would like to take time off but feel people around me don't understand the enormity of this. I hope sharing here can help others though. I think I will call the support line tomorrow.

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Really helpful. I have been looking after my husband for 13yrs he has vascular dementia and is now 88 ys old I am 82. I suffer with anxiety and feel so helpless that I shout at him and feel such anger at times. I feel I have lost the man I married 64 yrs ago. Because of Covid I cannot let him go into a care home.

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This was really helpful as I am in a similar situation.My mum aged 91 was diagnosed with dementia a year ago,my Dad had died a month before after having dementia for about 20years 2months ago she had a stroke(bleed) with Covid starting to build again she was discharged home to Mei think I look after her physical needs very well but trying to understand what is going on for her emotionally is the most difficult thing and trying to not show that you are upset when she does strange things.I am trying to read to learn how to be better but it affects people so differently and really I just want my Mum back so hang on Monica you’re not alone but I think you need to ask for some help I’m struggling and I’m 66 God bless

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I cant stop crying because of mam I had to make the decision to put her into care her last fall split her head and needed stitches, she also has a stoma and keeps pulling it off can no longer do things fir herself, My dad died in February and I nursed him till the end after a long drawn out illness I promised him 2 hrs before he died that I would not put mam in a home, but i could no longer cope im 65 and my husband has chronic heart failure everything is going yo peices around me due to covid 19 I can not visit her other than through the window I go every day but soon as I not there I crying

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Hello Janet,

We're really sorry to hear you've been having such a difficult time.

Please remember you can call our Dementia Connect support line on 0333 150 3456 for advice, information or emotional support. Our dementia advisers are here to listen and provide support
when you need them: https://www.alzheimers.org.uk/dementia-connect-support-line

We also have another page of advice on this topic here that you may find helpful: https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes…

Some people also find it helps to talk with other people with similar experiences. If you think this would help, you can visit our online community, Talking Point: https://forum.alzheimers.org.uk/

I hope these resources are helpful, Janet, and please do call our support line if you need more support.

Wishing you all the best,

Alzheimer's Society blog team

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I am a cargiver for a lady with dementia, she was very confused with me being in her home and caring for her. I explained everyday to her with loving words I want to take care of you and she began to respond to me positively and loves me very much. But her husband who hired me is upsetting her day and night and I cheer her up and again the same thing happens. Im hurting inside and feel emotional distress and hopeless. Am I suppose to quit and let him find another caregiver.

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Hello Maria,
Dealing with feelings of guilt is unfortunately very common for people affected by dementia.
Please know that we're here for you, and you can call our Dementia Connect support line on 0333 150 3456. A trained dementia adviser can listen to your situation and provide ideas and support. You can read more about the support line (including opening hours) here: https://www.alzheimers.org.uk/get-support/dementia-connect-support-line
Hope this is helpful, Maria.
-
Alzheimer's Society blog team

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Reading these comments has helped me to realise that I am not alone in what I am currently going through. But it’s still incredibly tough. I am next of kin for my 86 year old aunt (she has no children) and sending her to a care home, selling her home, disposing of her lifelong collection of possessions, even reforming her beloved dog, has all fallen on my shoulders. And it’s a heavy burden to carry. The guilt is almost overwhelming. She has always had a deep fear of “institutions” and I know would rather die than be where she is now. For this reason I haven’t been able to bring myself to visit her because I know she will be angry with me and will beg me to take her home. I called her once during lockdown (on her birthday) and she was confined to her room due to the home having a Covid infection. She was distraught - pleading with me to come and rescue her and all I could do was ring off. Since the lockdown has lifted visits are now possible, but I’m too scared to go and the social worker advises against it, due to my aunt’s recently developed aggressive tendencies.

I don’t think I will ever get rid of the feeling that I’ve betrayed her.

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Hi. I went through exactly the same with my Mum a couple of years ago, she is 86 now. Every time I visited (3 times a week) and called (daily) she was quite cruel to me and made me feel so guilty and called the home a prison. She said I was a terrible daughter which broke my heart as I have looked after affairs and well being for over 30 years as my father died young. It is a beautiful home and is the best in the area but means nothing to her (which is understandable). I couldn’t make her understand that I had moved her to protect her because I love her so much.
To reassure you - after a few months the complaints started to wain and she did settle and became kinder to me and now appreciates all I do for her to keep her happy and secure. Obviously she will always wants to go back to her old life and is sad that she isn’t how she used to be but finally gets some small pleasures from life and even has a sense of humour sometimes.
I disagree with your social worker, go and visit your aunt, take the insults calmly and let the tears flow when back in your car, it will pass and all will be well in time ......

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My husband Paddy has had Dementia for a few years now. He is very insecure/scared of everything, especially being in a room on his own even when I need to go to the loo. Showering or bathing is very difficult we r both retired, he will not stay with a family member to give me a break bcoz he thinks I'm gonna leave him. He won't go to bed on his own so he sleeps on the sofa until I go to bed. I have about 3 hours sleep a day. I get up between 2 and 3 in the morning, if he wakes when I'm getting up, he gets up also. I'm finding it a bit more stressful as his Dementia gets gradually worse by the week

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I help my mother with my grandmother (she has dementia) and it breaks my heart to see my mom feeling so guilty. I'm happy I found this article, I hope it will comfort her knowing she isn't alone and moving my grandmother to a nursing home is the best decision she's made at this point.

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Very interesting article ,,it is full of useful information about the different type of dementia I look forward to reading more

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Some very useful topics on this website. I am a carer so get paid to do this job but you are still capable of feeling all the range of emotions you described in the article and having your bad days too. I think its really important to be able to acknowledge this firstly for yourself and to not be too hard on yourself and secondly to have a support structure in place for yourself so you don't get emotionally burnt out.

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I am my Dads full time carer, and to see the decline with Dementia breaks my heart. He is high care and everyday is an emotionally and physically challenging job. A once strong independent man, who now is unable to enjoy the simple things in life. I am trying to cope but timeout is needed to function, and not get angry or resentful as he doesn't know what he is doing. Just stay strong and have a break, as carer burnout is real.

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My husband is now in a care home - he has Alzheimer's and vascular dementia. I cared for him at home for over 3 years but as my health was deteriorating the GP said that I shouldn't do it any longer. There is a family member who doesn't accept this and insists that my husband is brought home regularly for days out - I think this would be very unsettling for him. What do you think - any advice welcome.

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Well, dear, this family member who won't accept that you had to place your husband in a care home and insists that he is brought home regularly, does s/he realize what s/he is demanding of you? Does s/he actually do any of the caring of your husband? It is all very well insisting that YOU do x.y.z. and making demands on you, but does s/he have ANY idea of how this will impact on YOU? Does s/he even care? Your health suffered as a result of your caring for your husband in your home for over 3 years, and you have a right to peace and an absence of stress and strife now.

I am inclined to think that a constant shuttling back and forth between the care home and his old home will be very confusing for your husband. As soon as he has become more or less reacquainted with his old home it is time for him to return to the care home.
I fail to see how this can possibly be beneficial to him. Surely it will distress him when he realizes that he cannot stay in his old home but has to leave it again, and then he has to readjust to being back in the care home all over again.

Pay no heed to what this family member says. You don't mention who this is; a son, a daughter or someone else. Regardless of who it is, I would advise you to disregard their demands and do what YOU think is best.

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I recently lost a relative to dementia, after caring for her for ten years. The last three years she was in an exceptional care home that met all her needs. When I would visit her I would take her outside of the care home in her wheelchair, but I did not take her off the care home grounds. If someone in your life thinks the dementia patient needs to leave the care home, then that someone needs to take the dementia patient home to that someone's own home, not your home.

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My grandad suffers with Vascular dementia for which my grandma is his carer, unfortunately she is unable to no longer care for my grandad and he has gone into a care home 2 days ago. I have been to visit him and was distraught to see him sat in a chair with a vague look on his face, I cannot sleep at night worrying about him and how he must be feeling. I worry that he is scared and disorientated in an environment which is not his own :( I wish I could be with him all the time and feel guilt for even slightly enjoying anything in my life when I know he does not have the same. dementia really is one of the cruellest diseases around- the only thing that brings any slight comfort is knowing that I am not alone in what I am going through. I send my love to anyone reading this who is going through the same and please know you are not alone x

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Thank you.

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Reading your comment made me cry , I have exactly the same feelings as you do but for my dad , I’m utterly heartbroken , thank you for sharing

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I was carer for my mother with dementia. She lived alone last 5 years but has been in residential home last 6 mths after numerous falls and refusing full care package in place. The guilt is unbelievable even though she actually enjoys being looked after and was not seeing anyone her own age before care home. I promised her she wouldnt ever go into a home but social services in the hospital eventually wouldnt let her back home and took it out of my hands. Its a terrible situation to be in. She doesnt even remember if anyone has visited her and thinks her mother and father are alive who died over 40 years ago. Ive fell out with my siblings as they are glad she is getting looked after but i havent seen it that way. Christmas coming has just made me feel even worse and I struggle to do anything fun as I feel like ive betrayed my mum. She also says she wants to go home when i visit and says she hates the place. She secretly likes the home but kicks up an almighty stink when i visit! Its so difficult. Horrible disease. The guilt has eaten away at me. I have aged about 20 years in last 5 years. The last visit i had was the first time it has went well as her cognition has got so poor i can keep her talking about bygone era to keep her mind off wanting to go home. Her flat is being given up this month but she cant remember where she lived. Thinks it was her parents house from the 1960s. Think i am finally coming to terms with her being in care home at last and giving her tenancy up this month seems to be giving finality to fact she can never go home or even should. Sometimes our guilt is more a cross we choose to bear for other reasons im starting to think. Ive a lot of my own problems that i didnt have time to think about while being too busy being a carer and now im not ive a lot of time to think about it and nothing to do with myself. No reason for being etc and depression anxiety and being a horrible irritable person who cant enjoy themselves at all. My mum secretly loves it though in the care home. She loves the attention and the company. Was so lonely at home and antisocial.

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Am sorry and sad to hear how much you are beating yourself up .. Whilst I do it to myself, when I read of someone else doing it to themselves I am more easily able to see it for what it is - a cruel kind of bullying that we inflict on ourselves. Who knows why but it seems pretty common. If t served some purpose then maybe it wouldn’t be quite so bad, but of course it does not, and in fact mostly impacts on our own health and so makes matters worse. I wonder if we don’t set such impossibly high standards for ourselves, that we would not dream of imposing on others, and then when we fail to meet them (as surely we will because they are “ impossible”) , we feel so guilty, as if to do otherwise smacks of complacency and selfishness. God forbid that we recognise that we too have needs that conflict with other people’s needs and it is okay to meet them.
It is so very difficult, but knowing that other people are out there struggling with the same stuff is strangely reassuring and encouraging.
Please try to be a little kinder to yourself, as you would be to a friend..you really do deserve it.

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I am a emotional wreck and cannot stop thinking about my mum and feel so guilty to be getting on with my life. My mum is only 68 and has had dementia for 3 years. I always promised her I would never put her in a home but my mum has deteriorated so quickly. I miss my mum so much. I lost my dad 25 years ago and now I feel I am grieving for my mum. I just don’t know how I am going to manage. I miss her so much. Every time I go to see her she is worse and looks so sad and frustrated it’s breaking me x

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