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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.
Lynda Ulyatt
saysMy Mum has been in a nursing home because of her dementia and medical problems for 2 years, in May my Dad, who still lives at home was diagnosed with Altzeimers. It’s so sad to see both my parents deteriorate, I’m my Dad’s carer and have to do most things for him which includes taking him to be with my Mum 3 days a week! I still work part time and I look after my grandchildren a couple of days a week, life is difficult but I try to stay positive!
Victor Isaacs
saysMy wife Brenda was diagnosed with dementia at the start of this year. Although we have numerouse visits from support and my daughter and son visit us when they can, I feel guily that I am not doing enough for her. At 75 I struggle with all the chores I now do at home, cooking, washing up, cleaning etc.
We have tried respite but Brenda is suspicious of strangers.
Both my children have their own lives to lead and their own families so I try not to pester them.
There are times when I get so frustrated, having to leave the room in case I say something that upsets her, the dementia and her severe arthritis in her knees means she needs 24/7 care.
I am condidering getting her a mobility scooter so we can go to the shops more as I feel a change from looking the same four walls would be good.
47 years ago on our wedding day made a vow "In sickness and in health" and unlike the modern trend of marriages, I am keeping to it, but it is hard.
This article certainly helped me understand about the feeling of guilt.
Kevin Chesson
saysBrilliant article, thank you. I care for a partner who has moderate Alzheimer's. Unfortunately she is incapable of doing anything apart from still being able to feed herself (thank goodness). The wretched disease has caused double incontinence. What is such a shame is the loss of a real relationship, having laughs, going on holidays etc etc.
All the support we receive has to be self-funded from the twice daily care worker visits, the weekly day care and finally the occasional respite break.
What really irks is the total lack of support from the family or the State, it wouldn't take much to see how we're getting on.
stuart berry
saysKevin, I have a similar situation; my wife has had dementia for a number of years
and now suffers from incontinence and is just about capable of feeding herself but I have to do everything else. My family seen totally oblivious to the fact that I am tied down 24/7 and they never offer to take Mum out for the day to give me a break. It is amazing that family can't see that possibly it would be a nice idea to take mum out and leave dad alone for just a few hours to recharge his batteries.
Christine McAllen
saysStuart I think you right I have decided not to ask family anymore there are always excuses. I got nice Carers who helping so I have my own time
Pippa
saysIt is so tough and sadly some people need to be asked because they will not volunteer. Possibly for good reason though. They have their own stuff going on and may not realise how much you need some time off...maybe you are putting on too good a front and they think you are coping just fine. As you are no doubt, but coping and needing a break are one and the same thing . But if you are anything like me, it is hard to have to ask and out yourself. in the position of having to accept help, to be grateful for it' and beholden to the person providing it. It’s complicated but it can be a case of taking/ getting a break, even for a few hours, or breaking down.
Nikki
saysWorth looking at Attendance allowance? I just secured that for my mum and it helps to pay for some support. It’s not means tested either.
Also do look into local centres and clubs as that can make a massive difference.
John Emmerson
saysYour local Citizens Advice Office will help you with applying for Attendance Allowance. The application is made on line and the money can make a real difference. We use it for paying for a Dementia Friendly Companion who will help and take my wife out for coffee, shopping etc, giving her a break from me who my wife says I "fuss to much"!
Kenneth armstrong
saysMy wife suffer s from behavior frontal temporal lob dementia my biggest concern with her condition right now she sits and watches TV all day is this normal for this type of dementia thank you a very confused caregiver
Anonymous
saysHi Kenneth, I am so sorry to learn that your wife is living with dementia, I hope that I will be able to provide you with some information to help with your concerns.
Everyone experiences dementia differently so what works for one person won’t necessarily work for another. If your wife seems to be enjoying watching TV and if it isn’t causing any ill effects, such as confusion or behavioural problems, then perhaps this is ok for her.
To live well with dementia the recommendations are a healthy diet, some exercise and good stimulation and social contact. If you were able to encourage your wife to go for a walk every day or attend a day centre or memory café, perhaps you would feel better knowing that she is getting some physical exercise and social contact as well as watching TV.
Please don’t hesitate to contact us here at the helpline if you feel that you would like to discuss this further: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Kind regards,
Anne (Helpline Advisor)
Derek Pritchard
saysI’ve been caring for my partner Anne whose 85 for 12 years firstly helping her cope with Arthritic conditions and the last 6 years with Dementia diagnosed in 2014 as Ahlzeimers now advanced I cared for Anne 24/7 through those years the last 3 weeks I had Carer’s in 6 nights a week so I could get some sleep until then we only managed 2 hours sleep a night Anne would sleep during the day but I couldn’t Ihad togoto hospital for a small operation so Anne went into a care home we had selected initially for 3 weeks respite and that was in July it Anne is still there and will remain
I’ve gone through many stages of guilt and try to console myself that I am now unable to look after Anne and I visit every other day for 3/4 hours and help feed Anne and generally look after Anne but she is now unable to have a conversation which makes me feel worse that I can’t understand what she is trying to say but I worry what she is doing when I’m not with her although she is mainly sleepy these days but I am so emotional at times basically Anne exists in the care home and I exist here at home but this is not living and it seems totally unfair We have been together for 38 years
brenda nimmo
saysDerrick, I could feel the sorrow and heartache in your words. You have done your best and I’m sure Anne wouldn’t want you to be riddled with guilt. It sounds like you will have a lifetime of nice memories, try and draw strength from them.
Symon
saysTo all Carers everywhere....After recently being put into a different caring situation of my now severely disabled 86 year old mother with her future now in a nursing home & coupled with that I’m also a full time carer..... as is my wife for our daughter, who has Autism.
My mother is very independant and single minded, living on her own in a bungalow in Essex and has done so alone since 1990 & also for a total of 60 years,
We live In Wiltshire and vist her every month staying for s few days every month. Now due to her lungs deteriorating so that she now must have 24 nursing supervision. Whilst in hospital she had her xrays reassesed to find that she has sadly a lot of brain atrophy and as such is now diagnosed as having Alzheimers
The only thing that I can say is to just DO YOUR BEST...... you can do no more and you can maybe sleep a little better every night knowing you’re done the best you can , draw a line in the sand and don’t look back at what might or could have been, just look forward and to the future knowing that you too have a life that must be seen as important as that of who you are caring for
You’re doing nothing wrong ....Take Care & look after yourselves .......
lynne
saysThankyou. I was looking after my mum for the last couple of years . Difficult as I live in Reading and she is in Gloucester. She had the maximum care package but all the different carers and hospital appointments , finances, gardening and house maintenance, took a lot of co-ordination and travelling. She is immobile, difficulty feeding herself, doubly incontinent and now vascular dementia, kidney problems.After the fourth hospital admission in a year and numerous paramedic calls we had to decide with her that she stay in a nursing home. Always promised her it wouldn't come to that but I couldn't cope anymore and couldn't hold down a job. I feel guilty but think if I'd carried on I 'd be so shattered. I did my best and hope that visiting mum will be more of a pleasure now. Thankyou for your reassuring words.
Barbara Lee
saysI will be having my mum and her partner living with me after Christmas.At the moment they live in Dorset and I live in Frinton Essex. I will have carers come to the house as I work 4 days a week and have recently become a grandparent.
Are there organisations near me that can give me advice on the best way to help them both?
Moira Swan
saysHi try Dementia Connect on the Alzheimer's Society website you can put in your post code to find services and facilities near you
I hope all goes well.
Moira Swan
Alzheimer's Society
saysHi Barbara,
As Moira rightly says, you could try using our local service finder to see what organisations and support are available in your local area: https://www.alzheimers.org.uk/find-support-near-you
You might also want to call our helpline to see what other support we can offer: https://www.alzheimers.org.uk/get-support/national-dementia-helpline
Natasha Tropman
saysGood afternoon Barbara
We are a care agency based in Clacton but have numerous clients in Frinton and the surrounding areas.
If you would like some information about the care we provide please let me know your details and I can you send you a brochure.
Kind regards.
Gilliam Bassett
saysMy Darling husband has dementia, recently , I have noticed that he forgets where his clothes are, he sometimes says things th as t don't make sense, another day he seems OK, we are losing friends as he can't remember what to say to them, this has happened so quickly, a month ago he was sleeping a lot which still happens, but these other things have come as a shock.
Nikki
saysTotally understand the friendship thing. My Mum struggles to make conversation because she’s forgotten her social skills and had trouble formulating sentences. Luckily her friends are chatty people so they just click away but I can see how she’s struggling to keep up with the chatter. It’s so hard.
Lee
saysSo so true my father has just passed away, he was in a care home I now feel did I visit him enough did I take him out enough. All these feelings keep flooding through me it's just an awful illness that no one who cares or deals with it truly understands.
Trudy
saysDear Lee, these feelings happen when we lose anyone in any circumstances. Don't beat yourself up. x
Karen Stafford
saysI am struggling with guilt to the point I have seen my own gp but I have trouble sleeping my husband is in care now
Louise
saysI am not surprised you have difficulty sleeping. Before your spouse went to live in a home you probably had a very disturbed sleep (for all sorts of reasons). This may have the case for some time and that rhythm is not going to change within a week. Give yourself some slack and be kind to yourself. My body is only now, after 4 months starting to take on a different, more healthy, pattern. I have no TV in my bedroom, no other 'blue' lights, I do not eat/drink after 8 o'clock and do some meditation just before I go to bed...it seems to have helped. Good luck and I do hope you get your sleep back as it is so important.
It is the disease that is the guilty party....not you, never you.
Christine McAllen
saysThis is a great article it explained the feeling very much. I felt terribly guilty leaving my husband even for an hour alone until I have been told I need to look after myself otherwise I want be able to do the work.
I slowly realises it is true and life is getting a little easier. also I need an operation and that will be the first time he will have to go to restbite we will see.
Lee Bawden
saysI'm so glad all these symptoms & feelings are not only in my world. It makes me so much better. So thanks for this information & appreciate it.