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 can be difficult to deal with as a carer of somebody living with dementia. Read our advice to help identify and manage guilt.

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. ‘Other carers seem to manage better’

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. 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. 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. 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. Accepting help

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, day care 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.
 

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

6. Moving into residential care

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. 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.

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125 comments

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My husband Paddy has had Dementia for a few years now. He is very insecure/scared of everything, especially being in a room on his own even when I need to go to the loo. Showering or bathing is very difficult we r both retired, he will not stay with a family member to give me a break bcoz he thinks I'm gonna leave him. He won't go to bed on his own so he sleeps on the sofa until I go to bed. I have about 3 hours sleep a day. I get up between 2 and 3 in the morning, if he wakes when I'm getting up, he gets up also. I'm finding it a bit more stressful as his Dementia gets gradually worse by the week

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I help my mother with my grandmother (she has dementia) and it breaks my heart to see my mom feeling so guilty. I'm happy I found this article, I hope it will comfort her knowing she isn't alone and moving my grandmother to a nursing home is the best decision she's made at this point.

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Very interesting article ,,it is full of useful information about the different type of dementia I look forward to reading more

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Some very useful topics on this website. I am a carer so get paid to do this job but you are still capable of feeling all the range of emotions you described in the article and having your bad days too. I think its really important to be able to acknowledge this firstly for yourself and to not be too hard on yourself and secondly to have a support structure in place for yourself so you don't get emotionally burnt out.

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My husband is now in a care home - he has Alzheimer's and vascular dementia. I cared for him at home for over 3 years but as my health was deteriorating the GP said that I shouldn't do it any longer. There is a family member who doesn't accept this and insists that my husband is brought home regularly for days out - I think this would be very unsettling for him. What do you think - any advice welcome.

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My grandad suffers with Vascular dementia for which my grandma is his carer, unfortunately she is unable to no longer care for my grandad and he has gone into a care home 2 days ago. I have been to visit him and was distraught to see him sat in a chair with a vague look on his face, I cannot sleep at night worrying about him and how he must be feeling. I worry that he is scared and disorientated in an environment which is not his own :( I wish I could be with him all the time and feel guilt for even slightly enjoying anything in my life when I know he does not have the same. dementia really is one of the cruellest diseases around- the only thing that brings any slight comfort is knowing that I am not alone in what I am going through. I send my love to anyone reading this who is going through the same and please know you are not alone x

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I was carer for my mother with dementia. She lived alone last 5 years but has been in residential home last 6 mths after numerous falls and refusing full care package in place. The guilt is unbelievable even though she actually enjoys being looked after and was not seeing anyone her own age before care home. I promised her she wouldnt ever go into a home but social services in the hospital eventually wouldnt let her back home and took it out of my hands. Its a terrible situation to be in. She doesnt even remember if anyone has visited her and thinks her mother and father are alive who died over 40 years ago. Ive fell out with my siblings as they are glad she is getting looked after but i havent seen it that way. Christmas coming has just made me feel even worse and I struggle to do anything fun as I feel like ive betrayed my mum. She also says she wants to go home when i visit and says she hates the place. She secretly likes the home but kicks up an almighty stink when i visit! Its so difficult. Horrible disease. The guilt has eaten away at me. I have aged about 20 years in last 5 years. The last visit i had was the first time it has went well as her cognition has got so poor i can keep her talking about bygone era to keep her mind off wanting to go home. Her flat is being given up this month but she cant remember where she lived. Thinks it was her parents house from the 1960s. Think i am finally coming to terms with her being in care home at last and giving her tenancy up this month seems to be giving finality to fact she can never go home or even should. Sometimes our guilt is more a cross we choose to bear for other reasons im starting to think. Ive a lot of my own problems that i didnt have time to think about while being too busy being a carer and now im not ive a lot of time to think about it and nothing to do with myself. No reason for being etc and depression anxiety and being a horrible irritable person who cant enjoy themselves at all. My mum secretly loves it though in the care home. She loves the attention and the company. Was so lonely at home and antisocial.

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Am sorry and sad to hear how much you are beating yourself up .. Whilst I do it to myself, when I read of someone else doing it to themselves I am more easily able to see it for what it is - a cruel kind of bullying that we inflict on ourselves. Who knows why but it seems pretty common. If t served some purpose then maybe it wouldn’t be quite so bad, but of course it does not, and in fact mostly impacts on our own health and so makes matters worse. I wonder if we don’t set such impossibly high standards for ourselves, that we would not dream of imposing on others, and then when we fail to meet them (as surely we will because they are “ impossible”) , we feel so guilty, as if to do otherwise smacks of complacency and selfishness. God forbid that we recognise that we too have needs that conflict with other people’s needs and it is okay to meet them.
It is so very difficult, but knowing that other people are out there struggling with the same stuff is strangely reassuring and encouraging.
Please try to be a little kinder to yourself, as you would be to a friend..you really do deserve it.

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I am a emotional wreck and cannot stop thinking about my mum and feel so guilty to be getting on with my life. My mum is only 68 and has had dementia for 3 years. I always promised her I would never put her in a home but my mum has deteriorated so quickly. I miss my mum so much. I lost my dad 25 years ago and now I feel I am grieving for my mum. I just don’t know how I am going to manage. I miss her so much. Every time I go to see her she is worse and looks so sad and frustrated it’s breaking me x

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This article has made me feel a lot less less guilty because I’ve been through all these emotions multiple times over. My Beautiful Mum was diagnosed with Alzheimer’s 10 years ago at the age of 57. She couldn’t cope at home and was extremely vulnerable. She was also suffered from epilepsy. Looking back I missed all the signs she was deteriorating because I saw her every day. She then moved into sheltered accommodation with carers coming in 3 times a day. They were constantly phoning me because she wasn’t coping so I would go and look after her and sleep on her sofa then go to work as a Deputy Head of a Primary School. After 12 months I realised I couldn’t carry on any more. She went to live in a Care Home but the guilt of doing this crippled me inside even though the home were fantastic with her. I’d visit her every few days but felt I should’ve done more. She got constant reoccurring water infections every 6 weeks that would end up with hospital admissions lasting a couple of weeks and would trigger her epilepsy. She ended up on Life Support on a few occasions and I had to fight tooth and nail for the right care, compassion and understanding about Alzheimer’s in hospital it was absolutely heartbreaking to see NHS (not all but most) staff totally dismissive of her as a real person just because she had Alzheimer’s. It felt like she wasn’t worth saving. The last 5 years she was not able to communicate with us and wasn’t mobile so was bed ridden or in an adapted compression chair which was also heartbreaking to watch. We found out by accident 2 months ago that she had Lung Cancer from her GP and had been diagnosed at least 10 months before after a hospital admission the Hospital had known for 10 months but didn’t think we had the right to know because she was late stage Dementia. Sadly my Beautiful Mum passed away in my arms 6 weeks ago but Luckily I had the last 8 days of her life to spend with her cuddling and kissing her and telling her just how much I Loved her. It’s such a dreadful and cruel disease that totally robbed me of my Beautiful Mum at least 7 years before she passed away. Me and my family all support and fund raise for The Alzheimer’s Society so that hopefully one day other families don’t have to suffer like we did. Heartbroken doesn’t even come close 💔😥 xxx

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15

I’m now worrying that I should have questioned the Dr’s re dads care in hospital - should I have blindly accepted the medication he was given or did it make it worse? They are the experts but should I have asked more questions, did his sedation periods have the correct treatment? I just don’t seems to know any more and so wordy I have let him down

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The point about having a better relationship once the person with dementia is in a home is true. I hated that my Mum had to enter a home for her own safety but 2 years afterwards I look back and realise that actually it was the best thing as we now have a better special relationship because others can do the day to day caring and I can enjoy Mum 's company as a person once more.
Days are difficult as she no longer knows I am her daughter but she knows that I am someone special who she sees and I can accept her for the person she is now rather than trying desperately to cling to the Mum she once was.

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Very moving to hear so many stories and feelings shared. I am not a carer though have been in the past. I now work on projects that provide creative activities and support groups for people living with dementia and their carers. The response here makes it so clear how important that we build societies and communities where we can support and hear each other and ensure people are not isolated.

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9

This article exactly mirrors my own experience of dealing with my mums dementia especially the section about them going into care. When my mum had to eventually go into care I felt so guilty but our relationship for the last year of her life was so much better because someone else was sorting out the practicalities and my mum and me were left to be ourselves again. I would like all careers to read this article.

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15

I still feel guilty after five years of my husband passing away, I know I lost patience many times, I wish I had known about Dementia before but I had never heard of it. Thank goodness i managed to keep my beloved at home with the help of my daughters, it was so hard as my husband was a severe diabetic and had one leg amputated. When will this guilty feeling go away!

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9

I found these heartbreaking letters all apply to anyone caring for a loved one who has this dreadful disease.
My husband has vascular dementia
coupled with rheumatoid arthritis and it is terrible knowing everything will only get worse. After 5 years looking after him l eventually had to put him in a home...something l said l would never do. The guilt is overwhelming....so l understand exactly what the carers feel.
There is little or no help, so carers not only have the despair to deal with....they have no money left to live on as all of it goes into care home fees. Nothing at all is being done to try and solve the problem....but worst of all is the guilty feeling of letting your life partner down.

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