Advice

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

Hi my husband has lewy body which he's had about 5years first 3he was very slow movements then memory started to go now with in seconds it's gone can't do anything without help only feed his self ,he can still walk about very bent and slowly ,he had a fall in Dec last year which caused him to have a build up of fluid so he is on water tablets which restricts us going out so much as I like to go out and meet other people so with all this it's making me very bad tempered and he sometimes he retaliates as he has shown anger to do with lewy body we did try for day care last year but he got very angry and aggressive so I gave up on that as I thought how can I enjoy time and he my hurt someone,so in Feb he went into respite for 2weeks he is on risspirdone to help him stay calm has been good but when in care home for first 2days he would not let anyone near him after he was excepting help but not happy ,I did not feel refreshed as it back to 24/7 and been told he needs nursing care so he is referred to mental health social worker so they hopefully find a care home that understands so he can have more respite as I'm sure once he is happy I can still care for him at home to enjoy ,I do feel guilty as we loved our holidays so I keep thinking about would be nice to have one on my own is this normal as I think that's why I feel anger towards him I try to think it's not him it's the dementia, but so hard been married 56years .

My wife has vascular dementia and a stoma bag she has no idea what it is and is always pulling it off she is now in residential care with a one to one it kills me every day to see her this way she doesn’t know any family it’s such a destroying disease for her and us

My husband was diagnosed one year ago with( behavioral )Fronto tempo dementia ...FTD. He tried to work for 5 years, knowing he was slowly failing at his job. His rewards for great work became pull ins for discussions with managers and team peers. Danger of being fired got him in to see a specialist and 7 months later a final name for his problems. Much financial costs could have been avoided by one simple MRI that showed the front half of his brain disappearing. It showed everything we needed to know about his symptoms and behavior. For 8+ years he grew distant, forgetful, very irritable and easily angered. He drank whiskey by the cupsful all evenings and often passed out. Nothing l said mattered more than his whiskey. Family, far away, no longer got visits from us, friendships faded as he chose to isolate us. Soon no Xmas tree, no decorations and no life outside the home made me resentful of lack of consideration and appreciation for taking over nearly all inside chores. He messed up paying bills, forgot due dates, birthdays, and gre so full of rage he needed anti-psychotics to calm him and help sleep at night.
Now he rests and l lie awake overwhelmed by all that needs repaired in our home. We recently lost $15,000.00 to hackers. No way to recover it, he is 59 , and l am 67 with nerve muscle degenerative disease making me weaker still with aging and caregiving. Rarely does any one help me with the needed work around here. I have made needs known and it's like talking to a ceiling fan. Nothing but air returns., l long for a few days to myself to actually get some things done around here, but don't see it ever happening in good old usa. I home cared both parents and in law family members until they went to better place. It's a lost virtue evidently.

My wife has gone into long term care for Alzheimers, i feel lost, and have let her down.i dont know what do without her.

My beautiful mother was diagnosed in her mid 60's with dementia. Her condition escalated in that she became very verbally aggressive, amongst others things, and needed to go into care. She is now in the final stages of the disease and I am beyond devastated. She has battled this condition for 8 years and the guilt and sadness I have takes over every aspect of my life. A constant sadness waves over me and I cant do anything to help her. I feel the end is coming and the pain of losing her is so great yet I know she has no quality of life. I'm so torn.

Hi all my mum is 67 and has dementia she had early onset and was diagnosed in 2014 she has deteriorated now and her hygiene is getting poor I’m her only daughter my dad passed away at 58 and I work full time with 2 young children and I just feel so guilty I don’t see my mum enough I have her at weekends to make sure she has a good dinner etc but I feel so stressed to see her like this as every time I see her I feel I’m losing part of my mum she does argue things with me now and gets snappy but then also cry’s which makes me so sad we have asked for help so many times now I just hope they can finally give some help for the simple things that will relive me so I can have the mum and daughter relationship again

The advice I just read on guilt is exactly how I've been feeling since placing my dear mother in care. Yes, I promised her that I would always look after her. But, yes, this was a totally different situation. My husband and I looked after my mam for eleven years. Doing a her cleaning, laundry, shopping and cooking her meals since she became unable to do all these things herself. And this was fine by us until her dementia started. And then, after she fell and broke her hip and shoulder her dementia progressed dramatically. I was her sole carer for three months after she came out of hospital, 24 hours a day. It was so hard. Until I just couldn't cope any longer. She is 92 and I'm 68 myself. The guilt has been so hard to bear. And every time she asks to come home, I get the guilt knots in my stomach. Everyone tells me I've done the right thing placing her in care, and that I need to look after myself as well. But I'm still feeling dreadful about the whole situation. She is in a lovely home which is very close to where I live, which means I can visit every day. But ever day I feel this profound sadness.

Please help me I feel guilty putting my husband in a Care Home I can’t sleep thinking about him if he eat or or if he was aggressive to the carres.i was alone looking after him and I can do it anymore that’s why he’s in the care home but still I can sleep I always try to eat please help me what shall I do to worried to much for him he’s in the care home now .

My mother has always resented my husband, I’m an only child and he “took me away from her” the day he married me, 46 years ago. The dementia means there are no holds barred now and she openly admits that she can’t stand him and won’t allow him in the house. She tells me I’m stupid to have married him, yet he was, until a few months ago, a huge part of our caring, family team. When she had a house fire {not her fault} it was him that worked every day till he dropped to get her home again from the temporary care home that she hated. I’m afraid that when she starts saying the most awful things about him I get angry. It’s as though she knows how to turn the knife. I’m really sorry but I find it hard to believe this is only dementia, that makes it more difficult to ignore. He’s the most wonderful husband, father and grandfather. He has advanced prostate cancer and is fighting it bravely. How do I deal with my mother’s attitude? I love her dearly but this hurts so much. I try to change the subject but that doesn’t work.

I'm looking after my brother [59yrs] who has Downs and dementia. He has forgotten how to walk and is now bedridden. Wherever he put in the bed he remains and cannot right himself . The only time he moves is to raise his knees. He is sleeping/dozing most of the time. He's angry and shouts and screams a lot. If I moisten his lips with food or drink he may eat or drink something but it's getting difficult. He has been checked by a doctor. Is this behaviour unusual and is there anything more I can do to help him.

I needed to see this right now. My poor mum has just been sectioned as a result of her dementia. Part of the problem with her illness is the outright refusal there is anything wrong with her, which has made it impossible to get her any treatment. And her partner can’t deal with her aggression and mood swings.
I know she’s in the best place she can be right now but I feel so guilty. She can’t understand why they won’t let her go home. It breaks my heart.
I’m praying for a miracle.

I removed my 80 year old Mum out of full time Supposedly dementia Care after 4 years of intermintent deglect.
I followed the correct chanels, safe guarding, local authority Adult Care. My mother self funding her placement.
Mum has been bed bound for 3 years.
Myself and my 2 brother's dreading what we would find when visiting.
Caring for her now she isn't walking shop lifting ! Bring taken advantage of is somewhat easier.
Frontal lobe dementia behavioural challenges. Sexually inappropriate you name it we have lived it.
Guilt plays no part as a care giver now she has been removed. My mother doesn't recognize any of us. . But she is cared for now by us.

I recently lost my dad in May. I was his carer for 3 years. He developed dementia after mum passed away. The dementia didn’t take him, he developed cancer in his bile duct, 3 weeks diagnosed then he passed away. I did feel a sense of relief. He enjoyed his life, even with dementia, he had a better social life than me. He was know as Sir Harry Sinatra because he always sang My Way on the karaoke. He was very well known in our little town, and was well looked after by friends! I used to take him everywhere. I did feel guilty for feeling slightly relieved, but there was no way I would put him in a home, he would have been devastated. He needed his familiar surroundings. He went into respite for 2 weeks and tried to escape!!! Told the careers I’d put him in Jail...he did have a sense of humour, but this was his feeling. He thought I was his wife! So to have to put him in a home would have made me feel more guilty. I feel sad that he’s no longer here, I miss looking after him, but could tell the dementia was getting worse, and it was getting worse for me being the carer, but wouldn’t have it any other way, hence the reason I was slightly relieved he passed when he did. He was 86. RIP dad, always missed, always loved, and forever in my heart 💔 (still grieve for mum and dad) 💔

If you are a carer who is struggling to cope, do not overlook the option of having a full-time live-in care worker. Having someone else there to carry the brunt of the care work means that you can remain actively involved (unlike with a care home) but can also look after your own health and wellbeing. My company already provides this for several clients and I'm sure other companies do too. Anyone can contact me if they would like to discuss this care option.

I can relate to a huge amount of this from a guilt perspective - guilt that I’m not there enough, guilt I should try harder, guilt I get angry and frustrated at dementia and therefore my mum, guilt that I don’t feel like I’m balancing everything well enough - mum, dad, work, our two year old, my own family unit etc. One thing I am slowly learning though is that self care needs to be a priority if I’m to continue to do any of this well and that’s not something I’m great at. I put myself last always and then feel exhausted with all of it. Dementia is one of the hardest things to live through from a loss and long goodbye perspective, we all need to remind ourselves we are coping amazingly considering the circumstances and let go of negative guilt!