Dementia Support Line
Guilt and dementia: How to manage guilty feelings as a carer
Feelings of guilt can be difficult to deal with as a carer of somebody living with dementia. Read our advice to help identify and manage guilty feelings.
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 or setting up support 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. Feeling that other carers seem to manage better than you
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 those of the person with dementia, 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 letting family and friends know how you feel and asking for support may give them the opportunity to help out.
2. Feeling bad about 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 without realising that they were showing signs of dementia.
Try to remember that 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.
Bear in mind that everyone gets frustrated with their partner or family members from time to time too.
3. Feeling guilty about getting angry or irritated
If you feel angry and frustrated, you might occasionally direct this towards the person you’re caring for. Many carers find it hard to forgive themselves in this situation, especially if they have said something hurtful.
Try to remember that caring can be very stressful, and anger or frustration are natural for everyone in this situation. Taking some time for yourself to do something that you enjoy – such as reading or cooking – can help to calm these emotions. Exercise and relaxation techniques, such as deep breathing, can make you feel less anxious 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. Feeling guilty for 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. Feeling shameful about accepting help from others
Many carers feel they should be able to manage without any help. But looking after a person with dementia can be exhausting, physically and emotionally.
You may be able to free up some valuable time by accepting respite care, such as help in the home, daycare 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 it and will start to experience the benefits.
6. Feeling guilty about the move into a care home
Some carers may 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 also 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.
7. Mixed feelings about 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.
This article was first published on 7 November 2018, and last updated in May 2023.
Looking after yourself as a carer
Supporting a person with dementia can be positive and rewarding, but it can also be challenging. Read our advice on how you can make sure you're looking after yourself, as well as the person you're supporting.
Linda Stiltz
saysI feel guilty about he fact that visiting my mother with severe dementia is difficult and upsetting.
Patricia
saysDon’t feel guilty. You are doing your best. Talk to the staff, the nursing manager.
My mum was like this too always saying the staff were awful. Then when I left I could see though the window she was away do her lunch talking to people. The dementia makes people say things they don’t mean. Be good to yourself. Take some time out to yourself and meet with a friend if current lockdown restrictions allow.
Joanne Freitas
saysYes but how deal with ig take off i dont undetstand that part. I try not geel.guity nut hard ser some love dlow img fafe eay. Plus i have mentel illness ots hard copy but hurts me i meed find place for het but i whated nice o font no how about tp fo it
Ted McG. West Australia
saysI found this item of great comfort. Sometimes I feel like I’m the only one in the world who has the guilt feeling about putting my wife into a nursing home 15 months ago with end stage Alzheimer’s and I’m on this journey on my own.
Patricia
saysPlease don’t be hard on yourselves everyone. My experiences are the same as each and every one of you. My Dad was a big strong man and sadly over the last few years approximately 4 in total maybe more his condition got worse. After many years caring for my Dad with other family my father went into a nursing home after a short while in hospital. Of course Covid arrived and there was no visiting. That was definitely the hardest part, not being able to visit, hold his hand stoke his face.. This cruel pandemic has robbed us all from a lot of things. The last year of my fathers life he was in a nursing home and for 10 of those months I completed Window visits. When he was admitted to hospital as he had a few falls I was delighted as I could finally sit beside his bed and talk to him and be beside him for a short while. He has now died and I feel relief but also numbness.
I am relieved he is not suffering anymore, relief he doesn’t feel abandoned, relief family members are no longer questioning the standard of care in the nursing home, relief I do not have to stare through the window anymore and look at his sad drowsy face not even knowing I was there.
Dementia takes the person we love cruelly away. The guilt is immense. I felt guilty I didn’t support my dad enough but I had my job and family to look after.
I talked to a social worker one day as he could see my distress and he said ‘You can only do your best’. I tried my best and it is all any of us can do.
When I peered through the window for 10 months the care manager said to me my father was warm and being well looked after and happy in his own world and this made me feel a bit better but I still sobbed all the way home and dried my eyes quickly when I got home to pretend everything was fine.
The last few months were also hard as my mother went into residential care for respite and she complained about the staff, everything and cried every day and phoned me every day crying to leave.
Eventually the respite care ended, and we are now trying to care for my mother whose needs are 24 hours a day and is temporary staying with a family member. They are now exhausted too. However we are seeking a residential place and I don’t know how this will work out.
So then my father passed away peacefully and I am sad I can’t believe I will never see him again and now I missing the window visits and the sort of my life that became routine. I now realise I will never see him again and that is sad.
However I know we all do what we can and do our best and we have to live our own lives. As the care manager says the loved one is in their own world and if we cannot look after our loved one any more and I know everyone has tried their best we have to realise that dementia has taken them away and it is the long slow goodbye.
But I honestly do feel I have cried so much over the last couple of years, I have driven up and down to the family home to help Dad and my mother when things were difficult, late at night, exhausted but I do feel relief now. I know my dad is at peace, he had a good life, he was loved and all he would want is for us to do our best!
Pleas you are all doing a good job, take some time out for yourselves and don’t feel guilty.
Tony Pine
saysI 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.
Mike sheehan
saysI 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.
Ruth
saysI 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
Heather Skinner
saysI am so sorry. I live in NZ and my beautiful husband of nearly 49 Years lives in secure dementia care. I miss him so very much. The pain of grieving is sometimes overwhelming. He has been in care nearly two years and started wondering so I couldn’t take care of him anymore. He knows why I can’t and that I did try. I vis him 5 days a week and feel guilty the two days when I take a break to get on with other things. He is still my best friend and soul mate. I mi him as he was and love him as he is. Shit, it hurts. WHY? Him? Or anyone who is sweet and gentle and a caring person . We do our best, but the sadness and hurt are always there, like a pain in your heart, like you are bruised on the inside where no one can see. you can be smiling but inside, you are crying. Hugs to everyone out there who knows this pain. From Heather New Zealand.
Joanie
saysYou were a wonderful husband. It’s so hard ... please just know reading your story , I could tell you were amazing!!
Jennifer Beadle
saysMum 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.
Christina Marie
saysthank you so much for posting this. I feel your struggle. We have the curse of having a loving parent that was always there for us. The guilt is huge. It is hard enough to deal with, without the additional restrictions on visiting from covid.
it is now 3 30 in the morning and i cant get myself to listen to the 10 messages my dad has left me just last night. he has Alzheimers and had a bad fall that put him in skilled nursing. He calls every night thinking he is in wild places and wants me to help him escape. he says he just wants to get home. More and more angry as the night progresses.
This is by far the most difficult thing to go through! he is such a great dad, just like your dad a proud man, and sometimes he sounds perfectly normal. That makes it worse! If he goes home, he could fall again. The case manager said that a memory assisted living would be better, but cant help thinking he would be hate me for putting him there, even though it would be much safer.
Jennifer Beadle
saysThank you for your post Christina. My tears welled as I read it, I truly do understand the guilt you feel. My dad is now home, he doesn't remember the respite stay at all and his new medication is helping with agitation, for now. Hearing your dad's messages must be so difficult, I was lucky in that my dad cannot work a phone anymore, although also had choices of speaking to us taken away. Having his physical needs met and him staying safe is the priority, however hard that is for us. Dad is so lucid at times, I couldn't imagine that he would ever feel safe anywhere but home. I think, once he became used to the routine and faces of the staff, he settled more. Maybe suggesting temporary dementia care respite when your dad is physically able will help you both adjust. My thoughts are with you all Christina, remember that there are people who understand and be kind to yourself. Try and take some time for you, knowing that he is being cared for and safe. Warmest wishes to you.
Christina Marie
saysThank you for your kind words! means a lot to me!!
Monica Swaby
saysReally 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.
Marilyn
saysThis 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
Tina
saysMy parents moved next door 11 years ago.we have looked after their house and garden ever since.Mum was diagnosed with vascular dementia after a couple of years(my husband and l worked in dementia care for the NHS so realised quite early what was happening)
We cared for her and nursed her until she died 4 years ago aged85.
My Dad made the site harder because he would buy her sweets,chocolate and crisps even though she was diabetic.
In the early days he would constantly complain about her cooking,we took over shopping and meal preparation several years ago.
18 months ago my Dad was diagnosed with alzheimer's,again we suspected he had it long before the diagnosis.
We have looked after his every need since Mum died.He used to constantly complain that he has lost all his friends, wants a woman to live with him to cook,clean and take him out.
We take him out every week for a drive,my daughter visited regularly before lockdown,my older daughter and children visited regularly before lockdown and now my brother has him every weekend for dinner.(that is the only respite we get.)
He is often sarcastic about our finances (he thinks we're rich which we're not but have worked hard and like to have our home as we want it)and is constantly talking about money.
I understand that is because of a very poor childhood but it still irritates.
My husband has had,since we married 13 years ago,bladder cancer,open heart surgery,rheumatoid arthritis and a hernia,he also suffers from depression. I was diagnosed with coeliac disease several years ago and have osteoarthritis.
We are both 66.11 out of our 13 years of marriage have been spent caring for my parents.
I feel so quilty that l feel resentment now.
Mum was always Grateful and cheerful,l miss her laugh so very much.Dad's glass is always half empty no matter what we do.
He realises what we do sometimes and is grateful then.
My husband has been so good.
I feel bad that l want us to have a life of our own.
Dad was very good and did so much for me when l was growing up and when l left my first husband and had my daughters to look after alone.
I feel trapped and quilty .
Hi Tina,
We're sorry to hear about your situation and the feelings of guilt and resentment you're currently struggling with.
You can speak with our dementia advisers on 0333 150 3456. They're available seven days a week to provide information, advice and emotional support: https://www.alzheimers.org.uk/dementia-connect-support-line
Some people also find it helps to talk with others who have gone through or are going through similar experiences. If you think this would help, you can visit our online community, Talking Point, for peer support: https://forum.alzheimers.org.uk/ It's free and open day or night.
Hope this helps for now.
Alzheimer's Society blog team
Janet Hodgson
saysI 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
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
maria
saysI 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.
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
Polly
saysReading 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.
Julie
saysHi. 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 ......
Laraine
saysI’m in same situation. When I visit my 81 year old mum who has Alzheimer’s she talks for the whole 30 mins telling me how bad it is in the home and that the people are nasty to her. I don’t have worries re staff at all. She says she wants to leave, go somewhere else or live with us. I come away crying like a baby and feeling so guilty. I actually dread what next weeks visit will be like. After reading your story I realise I’m not alone. Did the being horrible to you last a while?
Jean coady
saysMy 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
Matthew
saysI 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.
Susan Clarke
saysVery interesting article ,,it is full of useful information about the different type of dementia I look forward to reading more
Bridget Reynolds
saysSome 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.
Cheryl
saysI 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.
Jean
saysMy 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.
Anna Borsey
saysWell, 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.
Sueann Mishki
saysI 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.