Advice

Guilt and dementia: How to manage guilty feelings as a carer

I promised my dad who passed away in June this year that I would care for mum at home who is in her 10th year of altzheimers. All the above feelings and emotions I have so much on a regular basis and some days I feel I am losing it and then the frustrations shows and then the guilt is so powerful and it is very difficult for me. I know I do everything I can for mum but then when I have a bad day and mum is in her own little world I feel what a carer does is a thankless job. I have given up work to care for mum which is the best decision I made. I do not feel any resentment at all as I love my mum dearly but the bad days are getting more frequent and all the above emotions creep in. My family worry about me but I just want to carry on as much as I can until such times things are worse and out of my control to care for mum at home. It is reassuring that these feelings are what every carer experiences.

I empathise so strongly with all the above comments. Being an only child there was no-one to share any care, so all decisions were mine. My father had Alzheimers. I was working full time and my mother was adamant that she would look after Dad. Eventually it proved too much for her and he went into care. In retrospect I felt very guilty that I had not supported Mum enough, although I visited them several times a week and at weekends. Mum developed fronto-temporal dementia and was living alone at the time, but I had retired and was living a mile away. I used to see her most days and take her out, but she started ringing me up in the middle of the night because she was lonely so I used to go down and stay, or bring her home. I had had a heart attack a couple of years before and the stress was beginning to affect me. I eventually told Mum she was going into respite while I went on holiday, but she stayed there. I still feel so guilty that I "tricked" her into going into care. My daily visits to her could be challenging sometimes, but I was referred to a psychologist who explained the effects of FT dementia and how I could manage her behaviour, which was so helpful. I had some happy visits to her, playing games and looking at old photos. Besides Attendance Allowance, all people in care are eligible for an NHS Assessment, even if self-funded. Any financial reimbursement is paid to the care home and deducted from the fees you pay.

I understand the guilt associated with moving a parent/ partner into a nursing home. However I would like to introduce another type of guilt....that associated with having a very complex relationship with the person being cared for. My father died when I was 28 and my mother relied on me heavily from then on. By the time she was diagnosed with Alzheimer’s our relationship was difficult. I was very relieved when she opted for care.. It enabled us to rebuild a relationship that had deteriorated over the years. I was asked at one point how long I had cared for my mother...I replied 38 years....I needed the release from responsibility that having my mother in care gave me.

I feel very guilty about admitting my husband into a care home but he has Vascular Dementia for 9 years a few months ago he had a chest infection urine infection and got Sepsi and when he was being discharge home to me I could see that his condition had got worse so he has gone into a very nice care home but it makes me so sad to see him in there he doesn't recognise me he is incontinent and can't feed himself and I feel so guilty but I know he is being looked after but it does make me cry to see what has happened to him from a very intelligent man to this person with dementia

My 92 year old father passed away a few days ago. He was cared for mostly by my sister, 24/7 for 10+ years. I retired to help out and support her a night or two during the week and some days so my sis could get away. There were a few times when I was resentful and grumbled under my breath when getting my dad to bed which at first was very tedious due the exacting protocol my sister (a retired nurse) had established. I hated waking up at 3 a.m. to do diaper changes and reposition him because I don't sleep well and would be exhausted the next day. I'm sure my father picked up on my bad attitude at those times. I am now filled with sorrow and guilt and pray for forgiveness.

I have just been reading this thread - it is so hard for everyone caring for a loved one with dementia whether they are in care or not. My father had to move into a home just over a year ago and the guilt I felt that I couldn't either care for him in his own home or have him with me was terrible. He has got worse and I have to keep telling myself that if he hadn't gone into the home, he'd have probably had a bad accident (he would wander including at night, no suitable clothes and falling at least twice) or be in hospital with multiple urine infections. It is with you always like a weight - this long goodbye. We are all in this together though and we're all doing the best we can for the ones we love - we have to remember that and that if they were well, they would say how proud they are of us.

My Husband has Posterior Cortical Atrophy which also affects his eyesight , he had since 2012 I have been his wife and Carer my children been very helpful and supportive but they've got jobs and very young children to look after. He was in the hospital for 3 months with water infection and Delirium ,They was going to put him in a Dementia home but I decided to bring him home and continue to care for him , the thing is his Delirium and Elucinacons have got much worse they say there's nothing they can do as it's the next stage of Alzheimer's .
I haven't got a problem caring for him , the problem is his Paranoia and accusations .He keeps reading messages on blank spaces saying you done this or you said that also keeps following me accusing me of having affairs , letting all kinds of man into our house ,even accuses people in the Day Centre of having affairs with me and stealing his money he says he his going to have me arrested into Holloway Prison , keeps banging on the windows saying I am keeping him here against his will , removed his seatbelt while I was driving ,8pm locked me the garden for 30mins and couldn't put the key into the key hole at the moment he back in hospital with another water infection and mobility loss . I know that I am struggling with his behaviour and my Dr says that it's affecting my well-being and he needs to go into a Dementia home .I know that I am at breaking point but feel very very guilty .I can't sleep , can't stop crying ,i get very touchy ,I take everything personal , I feel like giving a loud scream to let out the pressure.
I know i can't care for him anymore I go to the hospital twice a day to see him and feed him ,but even while I am there he still keeps on saying what's the name of your new boyfriend or what's your boyfriend name I get very upset and start crying saying there's no boyfriend ,I love you and don't want any one else ,I also remind him that we've been married for nearly 44 years.

I feel guilty and need help with strategies on how not to loose my temper with my mum who is 92 and who repeats herself 40 times and asks the same question over and over. There is a lot of positives in my mums life but she always concentrates on the very few negatives that have happened and that irritates me. I need help with controlling myself, any suggestions most appreciated.

My husband was diagnosed with MCI 18months ago,but has got a lot worse recently, we had a wonderful marriage, never arguing, but we bicker all the time now, I am so short tempered and I don't like the person it's turned me into!
My husband is 82, also has prostate cancer and had a stroke.
I'm 74 and arthritic, I also have a severely disabled son of 51 ,who lives on his own but needs my help, he has carers but needs my help.
We always end the day saying " I love you" but I feel awful, full of guilt!

My husband became violent in memory care and was sent to geriatric psyc hospital. Got worse and worse, everyday. I finally demanded that he be let out cause he couldn't hurt anyone. Died 2 weeks later in memory care. So much guilt

I have a friend who I saw daily for over 18 months. He got a bad bout of pneumonia and had a very bad day. His responsible person put him in care and as his POA I cannot do anything. I have after spending 12 hours a day been reduced to two twice a week. I can no longer take him out for lunch after Church, even though for over 2 years we have done this. His POA has stopped it.He has taken away his mobile phone his freedom and he sits and cry's. He wants to go home. He is not ready for a home yet they have made him a prisoner. Please do not show my name

I have just read the comments on this site and it has made me feel better and less alone. It's also helped me with the feelings of guilt and the frustration I feel. Mum has advanced dementia and I have spent the last 4 nights getting up with her and this morning she doesn't recognise me or where she is. She's lived in this house for 58 years and I'm her daughter. She goes through periods like this then starts sleeping through. I am looking into respite as think that if I don't I'm gong to become so tired I won't be able to look after her. I work as well and have carers coming in. I liked the comment that said all you can do is do your best. I'm going to remember that as I continue on.

My Mother has been diagnosed with mixed dementia ( Altzeimers and dementia ) ...we moved her from Bournemouth to live near us in her own home , and although I take her to appointments ,she goes to age UK socials and can heat up / cook things that I’ve made for her ,...she is very angry about her health problems and can’t beleive she is ill as she has lead a very healthy life ,..the worse thing is that she is abusive towards me daily , to the point that I sometimes have to stay away from her ( I know she’s ok as the lady next door rings me ) ...I’m finding it really hard to cope with the way she is as to others she seems normal , really nice ...but to me she is terrible ,.... it’s making me ill and I’m having trouble sleeping / coping. ,there doesn’t seem to be an answer ,.... I’ve just got her assisted living allowance so she can get someone else in to help but she is refusing to spend the money on this , .. If I can’t take her somewhere she expects me to pay for transport for her , which is a strain financially ,.....I could bear all of this if she wasn’t abusive towards me ,... feeling very low x

My mother has advanced dementia and other physical problems. She is nearly 91. When my father died, before her dementia was diagnosed, I repeatedly begged her to come and live near me, but she was, and is, very stubborn. She has always been impossible to reason with if she didn't want to listen, and she was quite determined that although other people might suffer health problems in old age, she wouldn't. She insisted, 'I'm staying here, I've got all my friends here.'
I would say, 'Times change, situations change,' and explain how her position would alter, but she pooh-poohed all that. Now she's living alone in another county. Her friends are mostly dead or in residential care or don't come round any more because she doesn't recognise them. I have to micro-manage her daily care, her medical appointments, her finance, etc from long distance. She fights the carers who try to keep her clean and comfortable. Everything would be so much easier if she had agreed to move here! As I battle on, trying to run her life for her and being resisted at every step, I feel rage with her - not for having dementia, but for being so stubborn, so ostrich-like and convinced of her own specialness when she DIDN'T have dementia. Then I feel guilty for having these emotions, even though I've never expressed them to her.

Yesterday made the decision that the time has come for my husband to move into residential care! He has mild mixed dementia plus many other health issues ! Insulin diabetic,and suffered a stroke last November but has now lost all mobility and is a two person care with machine for transferring etc.
Our sons purchased a profiling bed for safety reason as he was slipping from/falling from ordinary bed... we live in extra care independent living and the staff have been wonderful however, I do know that should he be admitted to hospital in the future he would not be accepted back here due to his level of requirements! Two recent falls highlighted I was in danger when assisting him etc...hence the double carers . He now tells all that I will not help him. , however
Today, I was thinking perhaps the decision was to soon, he was having a relatively good day.my heart breaking decision was made with full backing of our sons, advice from head of care district nurses etc, as best interest for him and concerns for my health and well being.
Reading this information made be realise but doubts are a natural response..........yes it may be to soon today....but maybe not tomorrow!
As his dementia is at this point only mild he will , of course, be aware and have to be consulted, and I know he will resist! He will belive it is contrived....he believes he will get better...
I know when thinking straight it will be for his benefit, with 24hours care and hopefully some quality of life. However, as funding will be required I expect that I shall be expected to continue with the stress, verbal aggression, lack of sleep etc..
Thank you for your information is clear, easy to read, and makes it clear that my emotions are natural.