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, anger and stress 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 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 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. 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 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. Feeling guilty about 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. 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.
 

4
Discussions about Guilt in our online community, Talking Point...
Discussions about Guilt...

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. 

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 the separation and will be able to see the benefits this can bring.

6. Feeling guilty about the move into a care home

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. 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 on 10 August 2021.

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. 

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

165 comments

Add a comment

My husband has bvFTD - diagnosed in 2018 at the age of 74. I was looking after him 24/7 until Covid came into our home. I put him into care in August while I recovered from Covid as it hit me quite badly but then it was suggested by family and friends that he stay there permanently. They said I had done my bit and now it was time for me to have a break and start to enjoy the rest of my life. They don’t understand - my husband IS my life.

I feel I have been press ganged into placing him permanently and am riddled with guilt so badly that I am finding it difficult to cope with life without him. We have been married 53 years. I cry most days and find it hard to motivate myself and I am not eating properly. Dreadful thing to say but I think the pain of him passing would be easier than this pain I feel right now of him being in a care home. Only people who have gone through this process will understand how I am feeling.

The care home is small and compact, the Manager and staff are friendly and the Owner is very hands on. I visit and take my husband out for walks or do activities with him in the home. He seems quite happy there and never asks to go home although I don’t believe he has the mental capacity to know where home is?

The main reason for my angst and guilt is that I wasn’t having too many problems with my husband - he slept through the night and I had to get him up in the morning, I had to shower, shave and dress him, he had carers three mornings a week to do activities whilst I did my own thing, we went for a walk most afternoons and the rest of the time he was happy to sat in front of tv. I only had the odd hiccup when he wouldn’t go upstairs to bed and my daughter had to come round and help me. He has been doubly incontinent almost since diagnosis and I often had to propel him to the toilet to change him during the day - he is 6’1” and I am 5’3” and he is still quite strong but has never been aggressive.

When I read my FTD Support Group page I see that others are going through much worse than I was experiencing and I feel I have given up too soon on my husband - and I am someone who never gives up.

Part of me is wondering if I have an underlying concern in that I am having to fork out £1100 a week for my husband’s care?? I do miss him in our home even although he had no conversation. I did speak to Admiral Nurse for advice and she said I had done the right thing as she has seen so many cases where people struggle to keep a loved one at home and then a crisis comes along and others have to take over and make decisions for you and your loved one. But I don’t feel that I was struggling - if only I had a crystal ball!

This is helpful
0

Hello Margaret,

Thank you for sharing your experiences. You might benefit from joining our online community, Talking Point, where carers and other people affected by dementia can share their experiences and receive peer support. This could be a great place for you to talk with other people who have been in similar situations - or, you are welcome to read through the conversations without registering as a member. It's free to join and open day or night: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

We'd also recommend calling our Dementia Connect support line on 0333 150 3456 if you were looking to talk on the phone to a dementia adviser. They can provide emotional support, as well as information or advice. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

We hope this helps, Margaret.

Alzheimer's Society blog team

This is helpful
0

I suppose you could bring him back considering he isnt violent or wandering all night?

This is helpful
0

My dad has always been the most articulate man you could ever wish to meet! Not a bad bone in his body! He is still absolutely delish, but I can't reach him anymore! We took him out for a bacon bun and a cup of coffee yesterday morning and dads table manners were horrendous! Do I give in?? I've been so determined to take dad out for treats in order to give him choice of what food he fancies !
I've lost my dad, but he is strong as an ox ( according to the ambulance people, I don't know where to turn from here x

This is helpful
0

Hi Jenny,

We're really sorry to hear about your dad, this must be a difficult time for you both.

You might find it useful to join our online community, Talking Point, where carers and other people affected by dementia can share their stories and receive support. It could be a great place for you to speak with others who have been in similar situations, and get advice: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

Please also know that you can always call our Dementia Connect support line on 0333 150 3456 for advice and support specific to your dad's situation from one of our trained dementia advisers. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line

Hope this helps, Jenny.

Alzheimer's Society blog team

This is helpful
0

I got very irritated with my husband today, and I feel so guilty now. Was I wrong to be irritated? He took the water hose and sprayed water all over me and the outdoor furniture to get rid of the ‘people’ who wont leave our yard. He has Lewy Body Dementia and hallucinates all day. The outburst actually frightened me, and I reacted badly Im afraid. I tried to stop him, and when he wouldn’t I pretty much wouldn’t talk to him until I cooled down. Does my behavior have a negative affect on him?

This is helpful
0

Hope you and your Hubble are both ok.

This is helpful
0

My mum doesn't have a full diagnosis yet but it looks like when she does it will be frontotemporal dementia whixh I've thought for years but its taken a battle to get professionals to see the issues. My father was looking after her until recently when he passed away quite suddenly and now I have replaced him as her carer. I struggle every day with her and feel lonely and isolated (I'm 100 miles from my home and husband) but the main thing is how guilty I feel about now looking for residential care so I can get back to.my home and husband. I feel like I've let her and my father down and I should be doing it myself but I can't.

This is helpful
0

My husband was diagnosed with Alzheimer's Dementia in August 2020. From there his condition deteriorated rapidly. We had suspected for sometime that he had a neurological problem. His spatial awareness was affected and he had been involved in several car crashes, writing off three vehicles in 5 months. Examinations at the eye clinic had found no explanation for his problems. The diagnosis of Alzheimer's answered some questions, but it was all downhill from there.
We had two appointments at the NHS Memory Clinic, where medication was prescribed. After that the clinics were suspended because of Covid-19. We were on our own. The only support we had was from Alzheimer's Society. I confess I did feel alone and unsupported. Luckily, the occasion never arose, but I could never have left him alone and with no means of respite, I did worry about that.
I never met any other carers, so I will never know how my standard of care compares, no basis for guilt there. When my husband died, after falling down the stairs and damaging his spine, I felt relief because he was at peace and we would be spared the final stages of the disease. Should I feel guilty about that? Well, I'm sorry, but I don't. I did everything I could, throughout the whole episode. I was shocked, saddened, but not guilty.

This is helpful
0

This thread is so helpful. My mom was recently diagnosed with Lewy Body dementia. It took approximately 5 months to get a diagnosis and prior to it we had a drastic change to our relationship. The dementia heightened her feelings of paranoia and distrust and she was and still is for a little bit today that I was coming into the home, stealing things, allowing other people in the house etc even though I live 6 hours away. Finally it got to the point I could no longer stay at the house with her, her episodes would worsen at night and sometimes get physical to the point we had to call the police to our house. Since the diagnosis I try to balance living away from home and working remote in my home and then travelling back to my mom to work on finding the best course of treatment and care for her. I battle with so much hopelessness and immense sadness around the whole situation. Even when I come home to visit I can’t even stay at my old family home with my mom and that makes me feel sad, defeated and at times not encouraged to come home. I keep replaying signs I felt I missed or even times I should have tried to live closer to her , spend more time with her , etc. I don’t know if these feelings will ever go away and I’m really trying to take it day by day. I really appreciate everyone sharing their stories and experiences and its some solace that I’m not alone. This disease is terrible and heartbreaking and I hope one day an effective cure is found.

This is helpful
1

I feel guilty about he fact that visiting my mother with severe dementia is difficult and upsetting.

This is helpful
0

Don’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.

This is helpful
4

Yes 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

This is helpful
0

I 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.

This is helpful
1

Please 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.

This is helpful
5

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.

This is helpful
2

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.

This is helpful
8

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

This is helpful
1

I 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.

This is helpful
2

You were a wonderful husband. It’s so hard ... please just know reading your story , I could tell you were amazing!!

This is helpful
1

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.

This is helpful
5

thank 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.

This is helpful
2

Thank 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.

This is helpful
2

Thank you for your kind words! means a lot to me!!

This is helpful
0

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.

This is helpful
3

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

This is helpful
0

My 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 .

This is helpful
2

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

This is helpful
0

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

This is helpful
1

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

This is helpful
0

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.

This is helpful
0

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

This is helpful
0
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.