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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.
Audrey
saysThis was such a helpful article as I've found there is so much illegitimate guilt when providing care in this situation.
Both my parents have Alzheimers and having visted them every 2 - 3 weeks for 4 years (a 500 mile round trip) I moved in to help look after them both (at fad's request) and effectively became the third carer for my mum (supporting 2 PAs) and the only carer for my dad, as he wouldn't use his savings to pay for the support he needed.
I'm the eldest of 4 and because my sister and I have never really got on, she virtually stopped visiting my parents once I moved on (she came to see them only 10 times in that year period, even though she lived 10 minutes away) and she refused to povide any care.
Of my 2 brothers, one visited for an hour 2 evenjngs a week and took dad for an afternoon most Saturdays. The other came up from London every 4 - 6 weeks to enable me to return home for a week for team meetings etc as I also had a fulltime job working from home - that support was invaluable.
Trying to manage it all was simply impossible, my own health deteriorated and finally I had to make the decision to return home and to place mum in a residential home.
The criticism I faced from the Saturday brother over this decision was unbelievable, a torrent of negative comments slating me for (in his words) abandoning my parents. Fortunately my London brother was fully supportive.
Mum has been in a nursing home for coming up to 6 months now and I visited her weekly for the first 3 months, working long shifts at my job in order to get 3 days off to be with her and also to visit dad who has been in the revolving door of hospital and social care admissions since I left.
My angry brother changed the locks on the family home so that my London brother and I couldn't stay there when we visited and doesn't tell us when dad is admitted to a hospital or care home, so we are constantly trying to track him down. Now he has resorted to taking dad to his home when we visit and refusing to let us see him and doesn't let dad know we're there. The police say they can do nothing as no crime has been commmited.
All the stress of this, plus the financial strain of paying for a long journey and hotel rooms every 2 weeks is exhausting, yet still I feel guilty that my leaving meant mum went into a nursing home and dad's health deteriorated too.
Guilt is so energy sappjng, so soul destroying, but walking away from it is so so hard. This cruel disease definitely destroys more than those afflicted by it.
Chris
saysMy dear husband has vascular dementia, and is now in permanent residential care. It was the hardest decision in my life to make, like playing ‘God’, but thankfully I didn’t have the added stress of going through what you are experiencing with other family members. This road is a rough enough one with support. I have bi-polar disorder, so when the guilt kicks in it does so with a vengeance. The only way I find to manage is to take each day as it comes. I sincerely hope that you find a resolution.
Susan
saysThe feeling of not being
Able to do more
Never goes away
Pain never subsides
Pat
saysThank you Susan.
Sums it up for me.
Have got a husband of 49 years & a mother who has the A .
but they say -
No Pain No Gain.
Just got to find the GAIN
Mary Oparaocha
saysI study dementia care; from the experience I have acquired regarding some certain causes of dementia, especially during old age. Most of the causes about dementia affecting old people can be preventive before some one contract them. It is very good to take care of our nearing old people through cleaning the environment in which they live, eating good food, and avoid starvation and argument that lead to anger and over thinking, then one come to think about genetic origin, which is sure, and will never be prevented and will disturb when the time comes. It is good to seek opinion from ones GP to safe from the mess of dementia disease.
Daisy
saysMy husband has frontotemporal dementia being diagnosed in October 2017. He is now in a care home after me finding it more and more difficult to manage him. I have guilt about this but it isn't the worst of it.
I can't stop thinking about the times in the past where I was less than he deserved.
I feel such regret that I can't go back and do things differently. We have been married for 50years and the thought of losing him makes me feel ill. I wish I had had more awareness then and told him more how much I loved him. It is all too late now.
Anonymous
saysHi Daisy,
We're very sorry to hear about your husband, it sounds like you are going through a really difficult time. Please know that we are here for you.
We'd strongly recommend speaking with one of our trained dementia advisers through our support line on 0333 150 3456. They are here to listen to you, understand your situation and provide you with advice and support. More details about the support line (including opening hours) are available here: https://www.alzheimers.org.uk/dementia-connect-support-line
You might also benefit from talking with others who have been or are currently in similar situations. Within our online community, Talking Point, carers and other people affected by dementia share experiences, advice and offer support. You can browse the community without registering, or sign up to become a member: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on… It's free to use, and open day or night.
We hope this helps, Daisy. Please do call our support line.
Alzheimer's Society blog team
Jackie Fildes
saysI look at my husband and think if you could, just for one moment see what has happened to us, you would feel things that you will never have to feel. My sadness, my guilt, my pain is for both of us.
My frustration with the wider world is that we are not seen as a team, both in it together. If I lead a selfish full and active life, he suffers, if I give up my life, he doesn't suffer, he can lead a full and active life. It is like a game of ball, it is sharing, as we always have.
I do my best, I care.
Ana
saysMy dad has been diagnosed with dementia ,I tried to look after him taking him in my flat but I was exhausted after 2 months .I was proposed to hospitalise him in order to get some rest ,in the Swiss hospital Geneva he was mocked the doctors spoke in a despisefull way and tried to convince me that his health is going to deteriorate quickly ..,than in a compulsory way I was told I can t bring my dad home he had to go in an elderly home with a warrant ( if I refused I am called to the court ) so I was chocked and revolted because in Swizerland there is more pression on sick
people and them families than on criminals ....I felt this guilt that I couldn t look after him that I felt tired ( but I was alone my sister didn t want to share with me not even a Sunday ) than guilty that I was trapped by Swiss hospital and my dad stayed 3 months there he was unhappy lost weight ,because he decided after 2 months to go home by himself the Swiss doctors transferred him to pshchiatric hospital saying that he suffers of mania of peresecurion ....??? and the doctors abused us my dad is crazy when is in them interests and ok when is in them interests so they gave a paper ordering him the homecare ..but they didn t give me in order to read agree or contest when I found this paper it was too late to contest ...
So we both hated the homecare and felt like a dictatorship act
I went through guilt ..especially that Swiss doctors behind my back announced the court that my father is a " danger" snd need a curatour and all doctors told me lots of lies that the children's can t be curatour of parents especially in such difficultas situations and that they asked someone else to be named for my best interest and happiness ..so I had the feeling that I live under Ceausescu in a communist country
My Swiss GP turned me down because I have looked after my father he told me dementia is a illness that he can t stand ( why is he a doctor than and why is he still practising ?)
So I got crazy and suffered the luck of respect for people that have dementia and the abusive way they cope with me considering myself suffering of dementia and that I don r understand them manipulations
Josie Webber
saysI found the comments very helpful. I am caring fir my husband who has Lewey Bodies dementia he h really has gone down hill so much this year and I am feeling so exhausted with 24 hour care not knowing what he will sy or do next. But we re looking fir a care hom next week as he needs that extra care. I sympathise with all careers.
Dorothy Smith
saysMy husband had. dementia for 14 years I have experienced all of these feelings ,your artical has helped me so much no one knows how it affects you both
Thank you I feel a lot better after reading your comments
Dorothy Smith
saysmy husband had dementia for 14 years and I have experienced all these feeling , I found your your artical very helpful no one really knows what you are both going though reading all off this has helped me so much Thank you
Julie smith
saysMy mum has dementia she is in hospital at the moment she coming home on Monday she is in the early stage of this disease ,she is so scared of coming home l am a only child l feel that very thing on me.l have amazing husband which stands by me ,we are going down to stay with her for a couple of nights to settle her ,l feel very guilty that l should move in with her but how can l ask my wonderful husband to give up his life to move in with my mum ,she not that bad at the moment .l will have to move in with her when she gets worse ,
Elizabeth Beveridge
saysI do sympathise. I as good as promised my Mum I wouldn't pop her in a home but the time came when she needed 24 hour care and an excellent home was the answer. She herself said, when I told her about keeping her in the same place, " Don't say that. The time may come when you have no choice." And she was right. The time came.
Sara
saysMy dad was my mum's main carer for four years up until my dad himself was taken ill and sadly passed away two years ago, whilst dad was in hospital me and my two sisters took turns having mum stay and looking after her, we didn't realise how bad mum was with the dementia up until then, it was hard work looking after mum, going to work and looking after my family, mum told us before she was diagnosed she would never want to go in a home, we do feel guilty most of the time but she is being looked after properly now not being passed around, having medication when she should, this doesn't mean we love her any less, mum has one of us there every single day visiting. X
Sheila Nelson
saysBereavement is usually largely "guilt", for many varied reasons.
Don't look back too much. Be positive. You do your best at the time, and however much care you give you can't alter the outcome. My husband of 60 years died after 6months in a wonderful nursing home, and I admitnow thathis life was better there than in his last months at home, and he should have gone in earlier. He had more stimulation . In the evenings at home he would say"I want to go home-where am I." I think it may be easier caring for one's partner than for a parent, put look forward and be glad that they are not suffering any more.
Mr A.G.Johnson
saysThank-you. Your comments have clarified many thoughts which have passed through my mind in the early hours of the morning.
Pamela Clarke
saysMy husband of 69 has had alzheimers for two years and looking back showed symptoms twelve months before that. Their should be more awareness of this problem and the signs to look for. Luckily he goes to two Approach men's clubs so I can catch up on some sleep. As for funding am still waiting for decision on attendance allowance. Its all well and good saying carers need time to themselves but outside help costs and the authorities just drag their feet. Perhaps things might change if more people in authority HD to become carers.
Wg Cdr DP Sabharwal, Veteran
saysAbsolutely superb article. So true to reality. I can say so because I looked after my wife suffering from Alzheimer's for almost 12 years and came across many moments described in the article. There are many tough things and hard-times a care-giver has to go through; coping or living with guilt should obviously be not one of those.
Rick
saysA horrible horrible life to care for your best friend, the person you love more than the air you breathe, the mother of your children and a person who was so full of life just a few years prior. To see her deteriorate ever so slowly and now at 56 without the ability of any daily living skills while still having the physical skills to do most anything at home, or in the gym. Unfortunately the mental skills don’t match the physical abilities. If there is a positive note it does not appear she comprehends the full extent of the disease and the steady progression of this horrible disease. I’m not sure where we are heading or how long but have committed my mental state to expect the worse case scenarios while being her primary caretaker. I pray for those miracles of healing or foresight of the road ahead but now facing the reality that the miracle may have already happened.