Guilt after parent dying in a home

I’ve never been on one these website forums before so this is a bit new for me. I’ve read many of the different threads and I can’t find any that talk about my issue, my mother dying after putting her in a nursing home. Mum died in June last year and altho the physical pain has subsided, the psychological repercussions stay with me. I broke my promise of never putting her in a care home. It broke my heart and hers. She lasted only 4months,she had dementia, lost the ability to swallow, so she basically just faded away. I spent every free time I had at the home , and watched it happen. I’m riddled with guilt because I feel I allowed this to happen. I could have insisted she be taken to hospital and least put on a drip, but was told I was postponing the inevitable. She was 83, she had dementia. I tried to look after her before she went in the home, fought so hard for her. She was in hospital for 6 mths and they wanted to put her in a home then but said no. I had carers while I was at work, but we couldn’t cope with the dementia and she ended up in a nursing home anyway after just 3mths at home. Had I known how long she had, I would never have put her in that nursing home. She could have at least died at home, in her familiar surroundings. I feel I should have tried harder, been stronger,and then at least she would have died at home. My grief and guilt is endangering my health which I won’t go I to here but I can’t stop it and it’s getting serious. I’m struggling with this guilt. She just had me to look out for her, she relied on me and I let her down. Does anyone else feel like this?

Hi

Just wanted to reach out and offer an alternative perspective. I’m currently caring for my mum in her home with terminal cancer. It is the hardest thing in the world. My alternative perspective is that my mum, the patient, has told me and her GP that the minute she starts to mentally deteriorate as she has brain metastases, I must put her in a home for everyone’s best wellbeing.

I don’t have experience of it but dementia can be such a difficult thing to deal with on your own. You did the best for your mum and I am sure as a mother, she would not want to see you racked with guilt.

I believe you lose your loved ones before the dementia sets in so maybe try to remember everything that you did right and remind yourself of your relationship with your mum before the end of her life.

I genuinely believe you did everything you could and your mum would appreciate that as she loved you.

Ann x

Thank you Ann for your reply.
Everyone tells me that I did everything I could. Dementia affects everyone differently I believe and yes does often take them before they are totally lost… from what I saw in the others in the home. It was the one thing she made me promise tho and I couldn’t keep it. So it is hard to forgive myself despite all I know that I did do for her. And because of the fleeting moments of capacity that still had, she said some cruel things to me for putting her in the home. I do try to think of the good moments we had before her illness but she was always an anxious, difficult, at times cantankerous lady sadly, so I didn’t even know she had the condition until late on. Anyhow i know some one else recently in your position and it is heartbreaking to watch them deteriorate, so I hope you are looking for and taking as much support as possible. Thanks again for your alternative perspective,and I know deep down I must believe that too. Mum did after all leave me a comforting prayer in her insurance documents…obviously when of sound mind. Carol x

I am glad I could help a little. A comforting prayer is a lovely thing to find. Read it over and over again as I am sure your mum in sound mind would want this to be the thing you go over instead of guilt.

Xx

Hi Carol,

I can sympathise with your feelings in part as I too had to place my mum is a nursing home - like you, this was something that I promised I would never asllow to happen.

At 95 mum still lived independently and alone in her home with no carers. She had a cleaner once a week and a gardener once a fortnight. My brother lives locally so supported her when she needed to but she rarely did. Then she got a serious UTI and that was the start of the end - October 2016.

I had always said I would never let mum go into a home but I had to. She did not have dementia but had chronic kidney disease. She went from independent to dependent overnight - four care visits a day; doubly incontinent; not wanting to eat - horrendous.

In March 2017 she was rushed into hospital with kidney failure but she survived - that is when we had to place her in residential care. Broke my heart. Mum kept saying she wanted to go home or come home with me … her capacity was reduced by the illness and she was very upset.

She passed away in the home in August and to be honest I am glad that she was there as they gave her expert care and it was dignified.

Please do not beat yourself up about your mum going into a care home - many of us have to make that decision as the realtity of caring for a sick parent at home is often a lot harder than we think.

Take care,

Caroline
X

Hi Caroline, thanks for replying. Sorry I didn’t answer last night. When I first posted and then received the reply from Ann, well it upset me, as well as being helpful. Similar to your situation my mother was okish until she went into hospital, after breaking her hip. I do understand what you say about reaching the point when you know you have no choice but to place them in a home. I did try to look after her for a couple of months with the help if carers during the day while I carried on working, even against the hospital and others’ advice. so I know I did try. I had been looking after her part time for many years before, all my days off etc , only taking short breaks in the U. K occasionally because I knew she was getting worse, both the dementia and her mobility. She was in sheltered accommodation so she managed, but I did her washing, shopping etc. So we were very close tho we didn’t live together. When in hospital I saw the breaks in the dementia, she appeared quite normal in fact, i fought for months to get her back home which was exhausting in itself! But then after all that, to feel I gave up on her after only 2-3 months? That’s one of things I feel guilty about. I should have given up my job, not her. But it was making me ill with the sleepless nights because she would shout and have me up and down all night, most of the time for nothing at all, but she didn’t know; and there were times that she didn’t even know she was in her own flat, so I began to realise that the hospital may have been right. But I feel the guilt anyway and in particular because I had a week’s respite and the carers couldn’t cope, and that’s when social services said that I really should put her in a home. I’m in a carers’ bereavement group and it’s hard to hear others speaking at times about how at least they kept their loved ones at home! Tho a chap has joined recently who had to do what I did. Even so no matter what I’m told, no matter what I know I did for mum, it never feels enough. That she died within 5months of being in that care home torments me as I could have kept her at home and not made her life more stressful, so I’m afraid for us it wasn’t dignified. Tho I understand what you say that these places have carers that mostly know how to treat the sick. Not all though.

I am very sorry my post upset you Carol. That was my last intention. We are all here because we are finding grief difficult to deal with so I was just trying to show support. Take care, Ann x

Sorry Ann, I did not mean your post upset me, just the whole starting to write things down as I haven’t done that. Just been relying on friends and a support group etc. Writing it down somehow made it more intense, I think.
I appreciate people taking the time in replying, sorry it came across that way. Thanks, take care, Carol x

Phew! I know what you mean about writing it down. For me it helps release some of the internal pressure I am feeling so I hope it helps you too. Virtual hugs. Xx

Hello, I know this is an old post but I was searching the forum on “guilt” as I’m the same as you. My mum also had severe dementia. Picks. Dad died and I became her carer overnight took her home to live with me and my husband left me. I struggled to cope alone and had carers for mum while I tried somehow to work. It was the worst time in my life. Mum was my best friend. I then got unwell with bad glandular fever and I had no choice but to put mum in respite. I couldn’t look after myself let alone care for mum 24/7. I have no kids and my only brother didn’t want to know. I asked him to help me he refused. Social services visited after I recovered and thought I wasn’t coping … suffice to say mum had to go into a home. It broke my heart and still does. The guilt never leaves me. Mum was then moved as the home had problems with abuse can you imagine! I blamed myself for choosing that home. I was there daily for hours used to check all the time if she was being cared for properly and of course the care was not what I expected. Mums new home was better but again there were issues and I was constantly complaining checking watching. Mum was there 7 years. She seemed happy mainly as they had lots of dancing/music etc but nothing stops my guilt. Me and my husband were there at the end and I going over it all … did I hold her hand enough … did I syringe enough fluid in her mouth … like you, should she have gone to hospital was she in pain. It torments me. The whole thing! And I rang my brother told him mums dying please come. He said no I’m too busy!! I will never forgive him. He managed to attend the funeral and left as soon as possible all very formal. I’m nownleft with terrible anxiety troubles and having some counselling soon. I go over things I said/did and didn’t say/do with mum and drive myself mad. People say I was the best daughter to mum I did everything I could and she loved me so much - as I did her. But it’s wasnt enough as I couldn’t save or prevent those last awful years of carehome life and then death. So when I read your post I was relieved as it made me feel less alone. I hope you’re ok you sound very much like me and we would’ve done anything for our mums but sometimes I suppose life events take over. Mum used to say she was frightened constantly. That was a killer as I still wonder why. Take care. Hope I helped a bit. X

Hello, I know this is an old post but I was searching the forum on “guilt” as I’m the same as you. My mum also had severe dementia. Picks. Dad died and I became her carer overnight took her home to live with me and my husband left me. I struggled to cope alone and had carers for mum while I tried somehow to work. It was the worst time in my life. Mum was my best friend. I then got unwell with bad glandular fever and I had no choice but to put mum in respite. I couldn’t look after myself let alone care for mum 24/7. I have no kids and my only brother didn’t want to know. I asked him to help me he refused. Social services visited after I recovered and thought I wasn’t coping … suffice to say mum had to go into a home. It broke my heart and still does. The guilt never leaves me. Mum was then moved as the home had problems with abuse can you imagine! I blamed myself for choosing that home. I was there daily for hours used to check all the time if she was being cared for properly and of course the care was not what I expected. Mums new home was better but again there were issues and I was constantly complaining checking watching. Mum was there 7 years. She seemed happy mainly as they had lots of dancing/music etc but nothing stops my guilt. Me and my husband were there at the end and I going over it all … did I hold her hand enough … did I syringe enough fluid in her mouth … like you, should she have gone to hospital was she in pain. It torments me. The whole thing! And I rang my brother told him mums dying please come. He said no I’m too busy!! I will never forgive him. He managed to attend the funeral and left as soon as possible all very formal. I’m nownleft with terrible anxiety troubles and having some counselling soon. I go over things I said/did and didn’t say/do with mum and drive myself mad. People say I was the best daughter to mum I did everything I could and she loved me so much - as I did her. But it’s wasnt enough as I couldn’t save or prevent those last awful years of carehome life and then death. So when I read your post I was relieved as it made me feel less alone. I hope you’re ok you sound very much like me and we would’ve done anything for our mums but sometimes I suppose life events take over. Mum used to say she was frightened constantly. That was a killer as I still wonder why. Take care. Hope I helped a bit. X

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Hi All.

Gosh Pen, it’s so hard your brother didn’t help you and you are certainly not alone on here.

Since my post, things got so difficult for me caring for my mum and I too ended up having my own health suffering and ended up in hospital in the middle of it all as the stress played havoc with my digestion. I was so ill.

Anyway, to cut a long and very painful story short, my mum was in and out of clear thinking as she had brain cancer and one day we both made the decision we couldn’t cope at home any more. Watching her being taken in an ambulance to the home where she would die was the most awful thing ever. She spent 3 months in a home and died with me by her side.

She too was scared. It was far from how death appears on TV. It was awful. Painful and awful. I feel guilt about her not being at home too now but when it got to the point I could no longer get up off the floor one night sobbing, I knew I had done too much.

My mum wrote me a letter which said how much she loved me and thst I always tried my best and it sounds like you did exactly the same. Even if we did let our mum’s down in some way, they were our mum’s and loved us for what we were.

I’ve been missing my mum greatly so it is nice in a selfish way to know I am not alone in my grief.

Take care of yourself and I am sure your mum wouldn’t want you to feel guilty.

Ann xx

Hi. Pen. My goodness, tell me about it! Yes, everyone says what a good husband I was and how I saw my wife every day in hospital at first then a care home. She had dementia at the end too. But I just can’t stop thinking. Could I have done more? Could I have made things easier for her? Was it right to put her in a care home? Like you, it got so bad I just couldn’t cope. It was making me ill, but even that thought makes me feel selfish. I know, many would say it’s illogical. You did your best and so on, but it appears that guilt is one of the nasty symptoms of grief and anxiety. Thoughts can’t just be switched off. I wish it was possible, so we have to accept, for the moment, how we feel. The past is gone and there’s not a thing we can do to alter it. But I often ask myself ‘would she have wanted me to feel guilt?’ Of course not. We had a good marriage for many years and I can look back on good memories. Guilt can be a corrosive emotion. It can colour your life for ages if we don’t try and reason with it. Difficult!! I’m sorry to hear about your brother. But he must be forgiven. Some just can’t face what you have been through, so in spite of knowing they should do better, they shy away. Often it’s because they can’t cope with their own feelings. It may sound selfish, but that’s how they are. You know to me, love and forgiveness are so important. But we must also forgive ourselves, and there’s the difficult part. If your mum was frightened constantly it may be because she could not bring herself to look ahead. The future can be bleak when we get older. I say can be, because it doesn’t have to be. But it does depend on our temperament. Some feel the pain of bereavement a lot more than others. Very best wishes to you.

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