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

My husband of 64 has just been diagnosed with early onset Alzheimer’s, after several years of angry and unloving behaviour on his part. I’m committed to caring for him, and know this behaviour was probably due to this terrible disease (though he does have sulking form). I now feel trapped and cheated of the retired life I was looking forward to after bringing up our family - mostly alone as my husband was away a lot. I don’t feel I can admit this to our adult children, or even my friends. Is this normal? He is physically very fit so this could go on for a very long time, which really depresses me.

I thought I’d feel relieved when Mum was finally freed from the torture of dementia, but I don’t. I don’t know how to live without her. I can’t stop crying and people keep saying things like “I’m glad it was peaceful”, but they don’t know it was peaceful - nobody knows because she died all alone. I should have been with her when she died and I’ll never forgive myself. I just wish I could have held her hand and told her goodbye and I love you.

My father in law lives in the town where his wife is in a home with advanced vascular dementia. He is considering moving to live with family (daughter and grandchildren) a distance away. Can anyone point me in the direction of some reading material or advice that could reassure this decision. He has feelings of abandonment and guilt just thinking about moving away but he is lonely and getting older. Any advice or reading suggestions welcome. Thanks

I am struggling with the caring of my Mother and her inability to have reasoning, this is leading to a very fraught relationship between us which for her is very short lived but for myself is becoming very frustrating and also leaves me feeling very guilty that I cannot be a better carer.... how do others cope with this see saw of emotions

I have had to put my dad into care as he is a hi risk of falls and has dementia I cared for my mum after a massive stroke my mum since has passed away my dad had to be transferred to all male unit 45 mins drive away. I go as often as I can when I can’t go I face time him. He has had covid and could go for a few weeks. He has started being nasty and saying I never visit. I had to hang up on him as this was upsetting me as dad isn’t usually like this. I feel so guilty as I’ve always been a daddy’s girl. I’ve cried so much lately over this. Why do I feel so guilty. I am also a carer my profession and look after other people with dementia and can cope

On June 20th 2021 I had to move in and take care of my mom with dementia. At first it was a little confusion and inability to do ADL. Two weeks ago she declined swiftly and dr said some people have a slow fade and others experience a swift change. I care for mom at home but its getting so hard because I have no support...brother in denial, children dont know how to react and her sisters are too in denial. I promised her when she was diagnosed that I would never place her in a nursing home but its getting so hard. Now I'm a kind stranger in her house. I was in nursing caring for dementia patients for 15 years and resigned to care for mom but its soooooooo different caring for a family member. I really thought I could handle this and now I'm having doubts.

My elderly dad is struggling to cope with being the sole carer for step mum who has is deteriorating badly with vascular dementia. He believes that taking her into a home to give him respite has made her deteriorate further and wants her back home even though he is exhausted physically and mentally. She is well looked after and thinks she is still at home. Essentially finding the whole idea of "respite" extremely stressful and not able to get any respite at all. Mentally he is depressed and feels like he is living out both their worst nightmares. They never wanted a life like this, I remember vividly them both talking about it very seriously some years back. How can I help him in this situation now? Feels like we are all totally helpless and just watching him slowly lose her bit by bit. I worry about what he might do left on his own.

I care for my mum who has vascular dementia which was diagnosed 5 years ago who still lives in her own house in the same street as me (opposite) I also care for my Down syndrome sister who has advanced Alzheimer’s and lives at home with my mum.
I feel lexhausted. My mum asks everyday where her mum is (who died 20 years ago) she calls me by her sisters name (who has also died 12 years ago). My sister is double incontinent and needs to wear adult nappies day and night but mum removes them saying she’s ok now, hence my sister has accidents all over the house. Mum asks when she’s going back home and thinks she’s visiting me for a holiday. Last night I’ve not slept as the guilt of how I was feeling and how ashamed I am that I shouted at my mum for wandering in the street late at night with my sister in pjs …. When I got her in my house she looked very frail and was upset that she hadn’t seen her mum. I feel like I can’t go on like this, and I’m scared that mum might be in late stages and time is running out.

My husband has bvFTD - diagnosed in 2018 at the age of 74. I was looking after him 24/7 until Covid came into our home. I put him into care in August while I recovered from Covid as it hit me quite badly but then it was suggested by family and friends that he stay there permanently. They said I had done my bit and now it was time for me to have a break and start to enjoy the rest of my life. They don’t understand - my husband IS my life.

I feel I have been press ganged into placing him permanently and am riddled with guilt so badly that I am finding it difficult to cope with life without him. We have been married 53 years. I cry most days and find it hard to motivate myself and I am not eating properly. Dreadful thing to say but I think the pain of him passing would be easier than this pain I feel right now of him being in a care home. Only people who have gone through this process will understand how I am feeling.

The care home is small and compact, the Manager and staff are friendly and the Owner is very hands on. I visit and take my husband out for walks or do activities with him in the home. He seems quite happy there and never asks to go home although I don’t believe he has the mental capacity to know where home is?

The main reason for my angst and guilt is that I wasn’t having too many problems with my husband - he slept through the night and I had to get him up in the morning, I had to shower, shave and dress him, he had carers three mornings a week to do activities whilst I did my own thing, we went for a walk most afternoons and the rest of the time he was happy to sat in front of tv. I only had the odd hiccup when he wouldn’t go upstairs to bed and my daughter had to come round and help me. He has been doubly incontinent almost since diagnosis and I often had to propel him to the toilet to change him during the day - he is 6’1” and I am 5’3” and he is still quite strong but has never been aggressive.

When I read my FTD Support Group page I see that others are going through much worse than I was experiencing and I feel I have given up too soon on my husband - and I am someone who never gives up.

Part of me is wondering if I have an underlying concern in that I am having to fork out £1100 a week for my husband’s care?? I do miss him in our home even although he had no conversation. I did speak to Admiral Nurse for advice and she said I had done the right thing as she has seen so many cases where people struggle to keep a loved one at home and then a crisis comes along and others have to take over and make decisions for you and your loved one. But I don’t feel that I was struggling - if only I had a crystal ball!

My dad has always been the most articulate man you could ever wish to meet! Not a bad bone in his body! He is still absolutely delish, but I can't reach him anymore! We took him out for a bacon bun and a cup of coffee yesterday morning and dads table manners were horrendous! Do I give in?? I've been so determined to take dad out for treats in order to give him choice of what food he fancies !
I've lost my dad, but he is strong as an ox ( according to the ambulance people, I don't know where to turn from here x

I got very irritated with my husband today, and I feel so guilty now. Was I wrong to be irritated? He took the water hose and sprayed water all over me and the outdoor furniture to get rid of the ‘people’ who wont leave our yard. He has Lewy Body Dementia and hallucinates all day. The outburst actually frightened me, and I reacted badly Im afraid. I tried to stop him, and when he wouldn’t I pretty much wouldn’t talk to him until I cooled down. Does my behavior have a negative affect on him?

My mum doesn't have a full diagnosis yet but it looks like when she does it will be frontotemporal dementia whixh I've thought for years but its taken a battle to get professionals to see the issues. My father was looking after her until recently when he passed away quite suddenly and now I have replaced him as her carer. I struggle every day with her and feel lonely and isolated (I'm 100 miles from my home and husband) but the main thing is how guilty I feel about now looking for residential care so I can get back to.my home and husband. I feel like I've let her and my father down and I should be doing it myself but I can't.

My husband was diagnosed with Alzheimer's Dementia in August 2020. From there his condition deteriorated rapidly. We had suspected for sometime that he had a neurological problem. His spatial awareness was affected and he had been involved in several car crashes, writing off three vehicles in 5 months. Examinations at the eye clinic had found no explanation for his problems. The diagnosis of Alzheimer's answered some questions, but it was all downhill from there.
We had two appointments at the NHS Memory Clinic, where medication was prescribed. After that the clinics were suspended because of Covid-19. We were on our own. The only support we had was from Alzheimer's Society. I confess I did feel alone and unsupported. Luckily, the occasion never arose, but I could never have left him alone and with no means of respite, I did worry about that.
I never met any other carers, so I will never know how my standard of care compares, no basis for guilt there. When my husband died, after falling down the stairs and damaging his spine, I felt relief because he was at peace and we would be spared the final stages of the disease. Should I feel guilty about that? Well, I'm sorry, but I don't. I did everything I could, throughout the whole episode. I was shocked, saddened, but not guilty.

This thread is so helpful. My mom was recently diagnosed with Lewy Body dementia. It took approximately 5 months to get a diagnosis and prior to it we had a drastic change to our relationship. The dementia heightened her feelings of paranoia and distrust and she was and still is for a little bit today that I was coming into the home, stealing things, allowing other people in the house etc even though I live 6 hours away. Finally it got to the point I could no longer stay at the house with her, her episodes would worsen at night and sometimes get physical to the point we had to call the police to our house. Since the diagnosis I try to balance living away from home and working remote in my home and then travelling back to my mom to work on finding the best course of treatment and care for her. I battle with so much hopelessness and immense sadness around the whole situation. Even when I come home to visit I can’t even stay at my old family home with my mom and that makes me feel sad, defeated and at times not encouraged to come home. I keep replaying signs I felt I missed or even times I should have tried to live closer to her , spend more time with her , etc. I don’t know if these feelings will ever go away and I’m really trying to take it day by day. I really appreciate everyone sharing their stories and experiences and its some solace that I’m not alone. This disease is terrible and heartbreaking and I hope one day an effective cure is found.