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.
 

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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This 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.

I'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.

I am struggling with guilt to the point I have seen my own gp but I have trouble sleeping my husband is in care now

So 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.

Dear Lee, these feelings happen when we lose anyone in any circumstances. Don't beat yourself up. x

My 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.

Totally 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.

I 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?

Hi 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

Hi 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

Good 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.

To 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 .......

I’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

Derrick, 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.

My 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

Hi 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)

Brilliant 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.

Kevin, 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.

Worth 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.

My 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.

My 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!

A 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.

Thank 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.

My 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.

I 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)

One 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?

It 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....

He 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.

After 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

My 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

This 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.

I 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.

Hi 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 😳😢

My 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 .

My 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 .

Dear 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.

My 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.

Mum 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.

My 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.

All 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?

A 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.

Absolutely 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.

My 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.

Thank-you. Your comments have clarified many thoughts which have passed through my mind in the early hours of the morning.

Bereavement 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.

My 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

My 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 ,

I 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.

my 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

My 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

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