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I let Mum down towards the end of her life [long]

(27 Posts)
Jules125 Tue 26-Apr-16 09:29:13

That is all I can focus on now. Mum died last week after a long slow death. She never aged well, had a bypass in her 60s and cancer a few years later. I am angry that she never aged well - she never smoked, drank, she exercised etc. But she just did not get dealt the best hand in that respect. She eventually died a slow death from dementia. She was not really that old. I tried to focus on what she could still do when I saw her but it felt like every time something else had gone. She was always my best friend, but over the last few years it got so hard. I used to speak to her every day on the phone (she did not live nearby) but just over a year ago she stopped talking, and then shortly after stopped walking, eating, and became doubly incontinent. She moved to a nursing home then. She used to come and stay with me often but couldn't any more - the last time she tried (in 2014) she called the police after I had been out at work a few hours and they came and bashed the front door in because she said she had fallen (she hadn't). She was in a care home by then and they rung and told me the journey was too much for her also.

I just did not see her that much after 2013/2014 because I have two young kids, and was working. I wish I had given up work and moved her to a home nearer me, so I could have spent more time with her. Her behaviour was difficult and my daughters did not want her around that much (she tried to monopolise me so I could not look after then). I have so much regret that I left her alone when she was declining and needed her family. She was living near my brother but he was not good at going to see her (he found it too emotional and hard to see her as she was). I saw her last about 10 days before she died; she was not very responsive at all, lying in bed, very thin and frail. I knew it was near the end, deep down, but could not admit that somehow and just said a quick good bye and went home. She did manage to say my name, and hold me hand for a few moments. I realised I had only seen her 4 times over the last 6 months. I have been waiting for her to die in some ways, she was becoming just a shell of her former person, but now I feel awful regret that I was not there for her. I did not see her at the very end, as she went downhill fast and I did not get time to make arrangements for my kids to get there in time. But I think it is reflecting on the last few years that are really upsetting me, not the very end.

I think this is because when I/she was younger I did so much - she was always visiting me, I took her on holiday many times, and always out at the weekend. I was with her through cancer treatment in 2008 and my Dad's death. she expected it, she wasnt always easy but we were always close. Towards the end, I was more emotionally distant (I guess the decline hurt too much) as well. I'm not sure why now. I don't even want my career any more. There were better times but not towards the end. I'm not sure what I am saying now but I just cannot forgive myself for not managing better and I want to replay the last few years and do it right this time.

angemorange Tue 26-Apr-16 09:41:47

Dementia is such a cruel illness - you lose so much of the person it is nearly like going through a bereavement when they are still alive.

So sorry for your loss - and for the awful pain and guilt you are feeling. Don't really have anything more to add except to wish you well as you go through the grieving process flowers

candykane25 Tue 26-Apr-16 09:54:46

Lost my dad 18months ago.

First of all hear is a hug ().

Secondly, there is no right and wrong way to dealing with long term illness and bereavement. We are all making it up as we go along and none of us are experts.

Please be very kind to yourself. You've been through the mill. You've done your very best and it sounds like you've been pulled in all directions.

In time you will make your peace with all of this. It is very early days yet and you will go through many stages before you come out the other side. The first 12 months are a myriad of thoughts and emotions. Your brain is trying to make sense of things. Your thoughts in hindsight is your brain trying to find some sense but actually in practice you were living it day by day and doing the best you could.

stopfuckingshoutingatme Tue 26-Apr-16 16:09:57

dementia is a bitch of a disease. my friend lost her mum in very similar slow and drawn out circumstances, its very very cruel

I also think you should be kind to yourself, as really what will you punishing yourself do OP? harm, and nothing good

Something about this disease really threw you, and as you said you were there when she had cancer and was compos mentis and did need you

honestly there is not much you can do when people fade away,

hugs, I lost my dad last week and its hard. Its just throws all the emotional balls in the air doesn't it

Jules125 Wed 27-Apr-16 16:51:09

Thank you all.

Ninarina Wed 27-Apr-16 20:51:06

Im going through the same thing. My mum's death ten weeks ago was unexpected and I feel like I'm going mad. I had been there for her but the last week of her life I was poorly and so frustrated and so angry that I was struggling on my own. My mum had a very rare illness but no one expected her to die. Im suicidal. I just want to see her again. I don't understand how she can be gone. I blame myself every second of every day. I don't know if I will ever feel normal. All I can say to the OP is that you sound like a much better daughter than I was. I was screaming at my mum in her final days. I hate myself.

stopfuckingshoutingatme Wed 27-Apr-16 21:56:32

Don't Nicar - please . You have been through so much - the very very least you can do is practice forgiveness on yourself X please don't be suicidal - be KIND flowers

Finallyonboard Wed 27-Apr-16 22:01:07

I have regrets about the death of my own DM. It puts life into perspective and I will now always prioritise my family over work/ friends. I wish I had got my priorities in order before her death! I'll never forgive myself.

Thinking of you flowers

YourLeftElbow Wed 27-Apr-16 22:11:15

Huge hugs. I know how you feel.

I console myself with this: If I get old and ill and frail, I would not want my DC to change their lives for me. I wouldn't want them to be my carers, or give up time with their own DC out of a sense of duty. I might be upset if they didn't come very oftem, but I would understand, and I would even sympathise.
I did this when my DM was dying because I couldn'r bear it. I have forgiven myself now, because I think part of her understood that.
Be kind to yourself. That's what your mother would want x

stopfuckingshoutingatme Wed 27-Apr-16 22:19:06

Aw finally - my dad was literally dying for a week so I could stop things and be there - but months and months is ever so hard as life does have to go on - it's a shitter

mumofthemonsters808 Wed 27-Apr-16 22:24:25

I think part of the whole grieving process involves looking back and questioning our role in terms of whether we did all that we could. It usually involves focussing upon what could have been done differently and greater involvement.This mode of thinking always tends to be negative and leaves the person feeling full of regret, self loathing, inadequate, and uncaring. I think it's at its peak at the start of the process, fortunately, it does not tend to last and as we begin to mend, this way of thinking decreases. I've experienced this for every close death I've been through and I remember my lovely Mams advice "it is, what it is and the only person you are upsetting by thinking like this is yourself, because it changes nothing". I hope these feelings pass, we all do what we think is right at the time and I think it is important to acknowledge the stress and upset of watching dementia take its hold upon a parent. It would push a Saint to breaking point.

mineofuselessinformation Wed 27-Apr-16 22:26:36

No, you didn't let her down at all. You were there with her towards the end, and she 'came back' enough to know that.
Big hugs to you.

Jules125 Thu 28-Apr-16 20:15:23

Ninarina, I've been feeling like that too, but please don't. You Mum would not want you to end your life over her death. You tried to be there even if you were struggling. I have to stay here for my DDs also.

I cannot shake the sense that I let her down - I wasn't even there when she died. I knew she "might" be dying but I was hoping the antibiotics would work - they always have before. I was going to drive up again on the morning she died, but she went downhill really fast in the last 24 hours and I left it too late. I know just what Finally says - I had my priorities all wrong and Mum bore the brunt of that. A terrible mistake of judgement I will never forgive myself for. My lovely Mum deserved better from me.

I've been wishing I had put my life on hold to care for her since 2013/2014 when she got really bad. That is not realistic and would probably have left me feeling resentful - she might have lived for years longer (she was not that old) and was quite "well" until near the end. But I still wish I had done that.

I am 44 and an orphan. It sounds stupid but I feel so desperately sad and alone.

Big hugs to all of us - these feelings of terrible guilt seem to be common

HidingFromDD Thu 28-Apr-16 20:28:19

My daughters are 18 and 20. There may come a time when they also feel as you do. All I can hope is that they realise that the greatest pleasure they give me is to live their life well. I love spending time with them, but also love it when they're unable to come home because there's too busy living their own lives.

It sounds like you had a lovely relationship with your mum and that's what you need to focus on. She wouldn't want you to feel guilty about it now. I certainly wouldn't want my daughters to. Xx

candykane25 Thu 28-Apr-16 22:24:42

Just to add, my mum regrets leaving the hospital 2hrs before her mother died but I was with my mum and I very much felt my gran didn't want to put my mum through that and wanted to die privately - that was her personality. When my dad died I was in the next room - I had been with him all day and then was busy locking up the house for the night and turning all the lights off. But again, I think he wanted to go peacefully and quietly.
When my friends mum died, her brother stepped out of the room to make a phone call and wasn't there at the very end.
Please don't be hard on yourself. It's just not possible to be in several places at once. Your mum knew you loved her.
When I die, it's not important to me who is with me at the end. It's important to me to know I lived my life well.
These feelings will pass and the light will come back.

Ninarina Fri 29-Apr-16 08:41:54

Oh I'm so sorry for all of us. I'm having nightmares where I see my mum and I'm shocked she's alive and I'm so happy and hugging her and saying over and over that I'm sorry and then I wake up happy that she's actually alive but of course she isn't so I spend the whole day crying. The problem I have is I don't have memories of us doing nice things. I can only remember the illness. And even though we were physically close and she's remembered as a warm loving fun person we were not actually emotionally close. She never told me she loved me. We never talked about matters of the heart. She never wanted to hear anything upsetting. In some ways despite looking smiley and warm she was quite cold. She expected a lot and I think I felt resentment and then would be passively aggressive and that's what I regret now. She never hugged and I never hugged her either even when she went into hospital the last time. I think Jules you have been so so amazing. I feel like I fell at the first hurdle while you were there for your mum for YEARS. I think she was exceptionally lucky to have you. My poor mum deserved better. I feel so sorry but as someone else said it won't change a thing. My mum would have said that herself too. It's too late. Hugs to all.

ifigoup Fri 29-Apr-16 08:46:45

You didn't have your priorities wrong at all. You did the best you could at the time to balance horribly competing needs, including those of your own children. Please don't torture yourself about it. All of us only have so much time, money, mental and emotional energy to give.

candykane25 Fri 29-Apr-16 08:49:42

Nina I promise you there will come atone when your first thought is not of the illness but happier times. My dads illness and suffering consumed me for quite a long time afterwards and I think it's the brains way of processing what's happened. Now when I think of him I rarely think of the end stage but of the good times.
I dream of my dad most nights and I've got used to it. It's like spending a bit more time with him.
You never get over the grief and the missing someone but you will stop tormenting yourself over the suffering - you will heal.

Jules125 Sun 01-May-16 22:40:25

Ninarina, I can recognise a lot of what you are saying. I was close to my mother but she always expected a lot from me and often tried to dominate my life. She placed huge guilt on me other the last few years by telling me that all she wanted was to see me and that she was living her life through me [maybe part of the mental decline of dementia with hindsight, although she could be like that when younger and well also]. I did feel resentment about that sometimes and I think this is linked to my awful feelings. Perhaps I should have just put the rest of my life on hold to be with her, it would only have been for a few years. Despite this, she was a good mother in many other ways and I also loved her so so much. Before she got too ill, we used to talk every day on the phone at least. I am also struggling to recall the good times and focussing on the last few years. She was in a terrible state by the end of her life, and I felt immense pain whenever I saw her. I went out today and saw all these older ladies at lunch time and felt so angry my Mum did not get their life expectancy and health [not really wishing ill on other older women]. I

am thinking of all of us struggling with guilt and regret , at least I know I am not alone.

Ninarina Mon 02-May-16 06:19:10

You are not alone! I also feel huge resentment-albeit unjustified-towards any of my friends who still have their mums. It's so irrational but I only want to talk to friends who have been through the same thing. And I always want to know what age they died. My mum was 69 which to me is young these days. I too look at older ladies bless them and feel so angry that how come THEY are alive and my beautiful lovely fun mum isn't. Even the consultant said my mum was fun and lovely but no one could save her. My mum was practical and sensible and I remember how she behaved when she lost her dad back in 1976 and her mum in 2006 and I know she wouldn't want me to be like this. She would want me to live my life and be happy. I found an old birthday card and those are the exact words: Have a long happy healthy life. We owe it to our Mums to have the best lives. I hope I can start to do that soon. I hope we all can.

sandgrown Mon 02-May-16 06:53:16

Oh Nina your post made me cry. It is 21 years this week since my lovely mum died. She was also 69 and warm, loving and fun and too young to die. DP' s mum is ill at the moment and he is struggling with all the hospital visits etc. I try to tell him to treasure every moment with her. My mum lived a couple of hours away and my big regret is that I missed her last Mothering Sunday due to something I could have rearranged. I had no idea that six weeks later she would be dead. I think initially the guilt is part of the healing process. flowersfor you all.

Jules125 Mon 02-May-16 11:49:48

Your Mum was very young Nina, I am so sorry. I did not see my Mum on mother's day this year either - partly because this just meant nothing to her any more. My mother had stopped talking, become doubly incontinent, stopped walking all over the last year. She lost 3 stone in weight (only 8.5 to begin with). I could hardly bare to visit any more - that is my regret. It was so hard when she stopped talking especially, I probably could have accepted the rest. She just could not interact any more. She had no short term memory and was very confused. I did visit from time to time but I just sat with her for an hour or so feeling utterly useless and with my kids (who are still young) demanding my attention instead. I "lost" my Mum sometime towards the end of 2014. I could not even keep her awake sometimes when I visited. She was also 200 miles / 4 hours away which did not help - I should have moved her to a home nearer me; at least I could and would have visited more often. I was not even there at the end - I was planning to drive up but I did not get time to rearrange everything (I am starting to think the home and GP were a bit slow to tell me how bad she was and apparently could and were meant to have phoned a day earlier). But if I had reacted straight away I would have made it - I just didn't want to believe it perhaps.

I just go round and round over the same thoughts. I wasn't always a bad daughter but the last few years got too much for me. I am thinking of you too Nina.

tobysmum77 Mon 02-May-16 20:15:51

I think that leading a happy life is expecting too much. Contentment with happy times is more achievable imo. Guilt is a pointless emotion, very few people have anything to be guilty about. Most of us just do our best as we go along and accepting that is important I think.

Everyone has a different story, my beautiful mum died very suddenly and too young (mid 60s). I guess as a result I don't have the same issues around guilt about not seeing her etc because she was getting on with living her own life to the full. I feel angry and bitter that she's been robbed of the rest of her life and worried about my lovely dad who is bereft sad. I am also desperately sad, shocked and lost.

I didn't see mine on mother's day either FWIW .....but it didn't even seem like a big day at the time. There was always next year after all :/

Sorry for everyone else's losses flowers

Mishaps Mon 02-May-16 20:30:42

My mother died from dementia. I said goodbye to her in my heart several years before her actual death as she was already gone really. In terms of visiting I did very much the same as the OP. There is no other way - I have come to terms with it now. She did not miss me once she could not recognise any of us. But it hurts I know. flowers to all of you grieving for lost parents.

Guilt and regrets are all part of the grieving process. It is so hard. But it does pass.

Jules125 Tue 03-May-16 20:27:11

Thanks again to all. My Mum did still recognise me, although there seemed nothing else left of her by the end, she still seemed to know me [and would occasionally call us by name].

The guilt is not much use but it won't leave me. I got on with my own life and my own family, trying to visit, but not letting her decline stop us enjoying life. However, I could have done more to make her happy in the last few years and that is my huge regret.

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