Dementia Support Line
Advice
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.
James Lynch
saysAll these comments come at a very appropriate moment; I have just returned downstairs after putting my wife to bed and after a particularly abusive tirade! We had just being watching Prunella Scales & Timothy West on a canal boat, my thoughts were, why is she so serene & my wife not so?
Linda Johnson
saysMy mum has dementia with Alzheimer's having been diagnosed clinically last year she is still in denial at the age of 81 years of age. I'm the eldest of 4 and start a new 2 day job at a hospital just a few miles from where she lives. I plan to stay with her each week for a few nights, take her to one of the dementia cafes nearby and visit family/friends each Monday. My sister pops in to clean and takes her to the local garden centre for breakfast at weekends and my neice visits mum or meets up with her in town several times a week. My youngest brother and his wife used to visit as often as they could at 1st but my sister-in-law's parents have severe health issues plus her mum has dementia too. So they struggle to cope at times. My other brother stays with mum when he's over from Thailand but he's finding it increasingly difficult as mum's mind and health deteriorate. We all promised we would never put her in a care home but as time goes on we realise that there may come a time when there'll be no other option for our safety and wellbeing as much as hers. At times we feel stressed, stretched and yes even guilty but as so many have said before we can only do our best no matter how little or inadequate that may seem. So I feel the best way we can manage those feelings is to make every moment we spend with mum special. Mum loves to laugh and when she laughs we can't help laughing with her. These are the memories I will treasure when she can no longer communicate with us or recognise or remember these times together. We have made scrap books & photobooks of our holidays and special times together. She can't always remember when or where but they help her to smile and feel something good, even joy, from looking at the pictures and talking about the good old days. She remembers those far better than something said or done just moments ago. When we took her to a show celebrating the D-day Darlings she sang along with them, remembering every word of every song they sang and enjoyed every minute. Just do your best and enjoy the good days as best you can. Guilt saps our vital energy and has no purpose in this challenging journey so let it go. Learn to forgive yourself of any shortcomings you feel you have and build on your strengths and love for one another. May God bless you in all your endeavours to provide loving care and support and grant you peace of mind when you take time to care for yourself too. This too will pass so keep in touch with family and friends outside of your caring role and enjoy those days without regret or guilt because they will help you to provide better care for your loved one.
Elizabeth Beveridge
saysMum was in a care home. When I visited her she would ask to come home with me. One day I told her a wee lie that I couldn't take her because I was going to the doctor. She said couldn't she wait outside and then we could go home together. I am in tears every time I think of it. I think I should have visited her more often but I was advised against it as I have health problems and the strain of too much visiting was making me worse. I was with her when she passed and I believe she is now safe and happy.
Joseph Lucas
saysMy wife has Altzeimers, I looked after her for 6 years and she has been in various care homes for 5 years. I have seen so many changes in her over this length of time. I have had so many different feelings myself such as \ the feeling of guilt because l told her she would never go into a care home while l was alive \ the worry that the care homes were and are looking after her alright \ the feeling of guilt if l cant visit her for a reason because nobody else visits her.
She cant communicate very well she dosnt smile anymore and she walks about most of the time.
My visits are getting harder because l dont know what to say to her and the carers with her also dont know what to say or do with her.
Her life now is just walking the corridors and eating.
Even so l still look forward to see her and to make sure shes being looked after OK .
I will have to face the final stage sometime and at the moment l believe it will be a relief for the both of us.
But when it happens how will l feel.
This is no life for us, l live on my own, l miss her so much, we have been married for over 50 years, she was my best friend.
Christina Knowlson
saysDear Linda I know exactly how you feel
I have felt the same about my mother who is now aged 106 in a dementia unit. She can no longer see hear feel move or speak. She can swallow after being spoon fed.
Yes we wouldnt allow our pets to suffer like this. I have wished for the last 4years that mother would pass away in her sleep. I think perhaps now I am allowed to stop feeling guilty.
Kerry
saysChristina, I don’t know how you coped. Definitely you are allowed to stop feeling guilty. Xx
Christina Knowlson
saysMy mother who is now 106 has been in a.care home since the age of 100. She is currently in the dementia unit attached to the care home and has been in this secure unit for the last 4 years.
Previously I had cared for mother 24/ 7 from the age of 98 in an annex adjoining my home.
Then a fall resulting in a broken shoulder at the age of 100 resulted in placing her in a care home. I was at this point at breaking point with lack of sleep and nervous exhaustion..
I suffered terribly from guilt but I know looking back that I could no longer cope.
She is now 106 virtually bedridden apart from when hoisted into a chair., on alternate days . She cannot see hear move feel or communicate. She has been unable to recognise me since the age of 101.
Mother receives no help financially from the government/ nhs. She is self funding.
I feel guilt because I know she never wanted this to happen. She expressed her wishes to me when in her 90s.
I feel guilt because I am angry about the financial lack of help .
Ian
saysMy wife has dementia and I struggled to care for on my own until earlier this year. I have returned home from seeing my second Councellor in 12 months. Our topic of conversation was the guilt I feel now about not doing as much for her as I would like, but also the guilt I will feel when she inevitably will need 24 hour care in a home.. I have been advised to try to set aside for myself but struggle to find it. I do hope the guilt fades .
Miriam Cartwright
saysI cared for my mom who had Alzheimers. I looked after her at home where she felt safe but subsequently I had to pay for help as I was finding it difficult to manage. I loved my mother dearly and I still can’t get over her death which was quite recent. She had many falls and the hospital were adamant that my mom needed round the clock care I had to find a nursing home quickly. All the staff loved her and the hours I spent with her trying to make her day more bearable. It was awful to see her suffering. My feelings are that I should have overuled the hospital and demanded that my mom come home. I feel I could have done more and now it is too late. My GP has given me a phone number to arrange councilling sessions but they can’t make me feel any better about myself. I know time is a healer but I know I’ll find it hard to get over this. I was with her right to the end when she died.
Steph
saysHi Miriam
I cared for my Dad with Parkinson’s and dementia till he died in January. I did the opposite to you and fought the hospital Drs numerous times to bring him back home. In the end he developed pneumonia at home and I refused to let him go into hospital to be treated. He’d gone in and out for 12 months and each admittance saw him deteriorate more and more. He became hugely aggressive in hospital which we never saw at home till the last couple of weeks when he managed to thump me a fair few times. I have a huge amount of guilt exactly the opposite to you. I kept him at home but don’t know if I made the right decision either. I’ve come to the conclusion there’s no winning this game and you’ll feel guilty whichever route you take. I’ve considered counselling too but am of the same opinion as you. Nothing can change the decisions I made 😳😢
Ron
saysDear Miriam, reading your article has brought tears to my eyes and my heart goes out to you. (I am currently the sole carer for both parents with advancing Alzheimer's so I have real empathy with you.) Please don't punish yourself for decisions made under extremely challenging conditions. It is abundantly clear from reading your post that your underlying intention has always been to look out for your mom's best interests. At the end of the day, we are only human. Unfortunately, there is never a perfect way of responding to the challenges that this terrible disease throws at us. I am sure your mom would want you to find peace now. You did your best. Thank you for your post and I hope, if you ever get to read this reply, that it can bring you some solace.
Tracey Gibson
saysHi Miriam.
My heart goes out to you after reading your post. I am in a similar situation at the moment with my mum who has had dementia for approx 8 years now. She also has frequent falls as her mobility is poor without a wheelchair & prefers to stay at home, either asleep in her chair or watching television.
My dad who is 92 has alzheimers since 2017, but is still interested in socialising, but wont go anywhere without my mum, who doesnt really want to leave the house.
Unfortunately, they don't trust anyone but me to look after them, but as i am their only daughter, i am finding it increasingly difficult to cope with things mentally on my own. I seem to be their only visitor, as even though i've tried encouraging them to invite some of their old dancing friends, my mum doesn't want anyone to see her in her 'condition'. I often feel guilty for trying to get them out the house for eg. a drive to a coffee shop, even if its for my dads sake ( as he spends so much time just sitting in the chair to keep her company), as do I, as well as trying to keep up with the general household chores for them both.
It's so hard to try & do the right thing by them, whatever that may be.
I do hope you find some peace of mind. It sounds as though you cared very much for your mum & sometimes its difficult to know what is best, especially when you want to keep them safe, but happy.
Shirley
saysThis article has helped me tremendously, after trying to care for my husband with two hours or less sleep, I am totally exhausted, and had finally had to give in to putting him in care, after fighting against it for many many months. The guilt I feel is a difficult emotion to deal with however your article came at the right time for me, and has given me much comfort.
Linda Dumaurier
saysMy mam went into a care home last dec ember as she couldn’t manage at home even tho I was there every day,a few times a day plus carers going in twice a day.she s been end of life now since April and is still hanging on.its a nightmare that no one will ever understand unless they go through it themselves.while I can’t imagine a life without her in it,I sometimes wish she s just go to sleep.its such a cruel,soul destroying disease.you would nt let an animal suffer.love linda
Gillian boden
saysAfter reading all of these comments I realise I’m not alone, my mum has had dementia for 2yrs plus, 9 wks ago had a water infection causing her to fall and had thrown her dementia into another level. She had been in hospital since, waiting for nursing staff and social workers to get together for a “chat” about what sort of care would be best suited for her, but there doesn’t seem to be any communication between them and my mum is going worse by the day seeing all on a dementia ward much worse than her is driving her crazy, no stimulation unless I’m there, which I am every day taking her for a walk out of the ward to look through the window, I know the nursing staff are busy, but communication is important
Ami
saysOne area of guilt which is rarely mentioned is when you meet someone else whom you feel attracted to and whose company you enjoy. My husband has been in a residential home for 16 months and has very advanced PCA , so no longer recognises me, can no longer speak etc.
Recently I have met someone who has invited me out to dinner, the cinema and the like. Why do I feel so guilty enjoying myself after ten years of sharing the dementia path?
Kate
saysIt is rarely mentioned....it's very difficult to deal with the guilt ..of meeting some one new ..while your husband, wife parnter is still alive ..but when they are like the waking dead or you see only the odd glimmer of the person that they were ..letting go and moving on is like living to two separate worlds ..the loss and the grief are huge ..guilt because of maybe marrige vows and how people will view you to the utter anguish of the loss of your soul mate....
Budd
saysI have same situation, friendly with man whos wife has dementia, having lost my husband with alziehmers, we have helped oneanother so much, but she is still first priority, the book bleeding hearts, is well worth reading, true story. Very sad!
Karron Lovatt-Fraser
saysHe may no longer have tangible sense of who you are, but you must tread the path carefully so you keep everything in balance. As long as you have control you can manage a good friendship with the other man. You decide how important your husband is - what priority you give him. If you don't have that control from the outset you risk being crushed by the two opposing emotions and feelings for each person. Also if you keep control and keep the new relationship light-hearted, your husband will understand from your presence, tone of voice, that he has to share your happiness. Humans are amazing, even those without speech and visual recognition.
Parimal Roy
saysMy wife dementia patient for last 7 yrs. She is 64yrs old.iam 76 yrs. Iam care giver. My son busy with job. But good boy. After my death none there to be good cere giver. Should i give her to shelter house.? Pl advice.
Anonymous
saysI am so sorry to learn that you wife is living with dementia. It is understandable that you would worry about what may happen if you were no longer able to care for her and it is sensible to plan for the future.
Your Local Authority (LA) are the professional body with a duty of care to your wife. Once a referral for a care assessment is made, the LA has a duty to assess your wife’s needs and meet any eligible needs, subject to a financial assessment. Therefore if you were no longer able to care for your wife the LA would have a duty to meet her needs, whether this is through a package of care in her home or in residential care.
It may be a good idea to ask the LA for an assessment of your wife’s needs now. If some respite care or carer’s were introduced now it may not be such a stressful change if something were to happen in the future.
I have attached our factsheet for further information.
Assessment for care and support in England http://bit.ly/2nqhDKE
Kind regards,
Anne (Helpline Advisor)
Leonard McNeill
saysDear Anne, I live in Scotland and regularly see items of interest but these usually ONLY refer to matters in England.
Anonymous
saysHi Leonard, thanks for getting in touch.
Although the majority of our information is suitable for all, you're right that some information and many of our support services are specific to England, Wales and Northern Ireland.
For Scotland, you may want to try Alzheimer Scotland: https://www.alzscot.org/
Hope this is helpful,
Alzheimer's Society blog team
A Gaskin
saysThank you, great article. Just arranged for my father to go into a care home after 2 years of care at home whilst going to work. Was feeling guilty and a failure. Feel a little better after reading this.
Lynne
saysA good article. However, I believe there will many many carers, like me, who doesn't have anyone to come and stay with my Mum for a night in order to have a break. The reality is there is so little support out there for carers and I don't imagine that situation will change any time soon.