lost mum nearly three weeks ago. After weeks of anticipatory grief when she was on EOL for five weeks and i was with her every day/night and managed to stay strong for her and keep my grief for when I was alone.
the crying and the thoughts have been quelled by antidepressants.
I am now empty at a loss as to what to do feel or think how does everyone cope when all motivation and meaning has gone?
back to work on a phased return next week but dreading it as we have not yet had the funeral.
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Hi Olive ,
I took stayed with my mum in hosp for three weeks while she was on eol and I can honestly say it was the worst experience of my life. I managed to bring her home for almost another three weeks and slept alongside her every night.
I can’t think of anything more painful than watching a loved one passing on eol. I took kept strong whilst she was there but once she passed I felt totally totally grief stricken and cried and cried for weeks.
Just want you to know I am thinking of you . My heart goes out to you.
Can you take more time off work? If I were you I would stay off as long as possible. You need more time to heal
Take small steps each day and look after yourself
Deborah x
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hi Deborah, I live alone and i am fearful of taking more time off work as i fear i will spiral into depression. i have no motivation for anything and l spend all my time in my bedroom when i am at home.
mum lived three hours away so i have been there fr the past two months , being back here is just so strange i share the house and nothing was done whilst i was away i cannot even clean and tidy or do the garden.
i think you were very brave taking her home, mum was in a NH after th hospital i spent every day and a few nights with her, Harrowing to say the least.
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Hiya Olive,
I was exactly like you in the beginning. In fact I didn’t get out of bed unless it was for a meeting about mum. Didn’t eat much Lost weight and completely switched off from the world.
The grief hit me for six. I just wanted to scream all day long. I totally neglected myself and thought everything in life was pointless.
I was determined bro bring my mum home and bec she was on eol in hosp they deprived her of food so when I got her home I made lots of lovely food for her in the hope I could save her. But the damage was fine and I couldn’t save her. But I tried and she had hope until the end. it was far better that the hosp room she was in.
It was very traumatic watching her on eol as you know with your mum. I don’t think I will ever get over it.
I eventually left the sanctuary of my bedroom and wrote down a few targets for each day and sometimes they were so small and trivial. But that’s all I could manage. One was making a cup of tea or watering the plants. I really was in a dark place looking back. Then I found this site and I was extremely lucky to find a few people who lost their mum’s around the same time and we became friends through grief and we are still there for one another as this horrible grief journey never goes away.
Keep posting on here because it was my lifeline in the months after mum passed. I could write whatever I wanted without being judged. I could say exactly how I felt and knew people cared enough to reply which helped me so much. I could even rant about something and knew I would gain support. The best thing about the dite is it’s 24/7 so when I couldn’t sleep I would reach out to anyone on here and somehow don’t ask me how I got through the very difficult stage of grief which for me was the first year. It’s now been 15 mths for me and I still make writing on here one of my daily targets and I have gained so many lifelong friendships and even met up with some. How wonderful is that.
Don’t worry about the house bec all that can wait. Put yourself first now ok. I agree that going back to work will give you a focus.
I am retired now so I didn’t have to worry about all that.
Am here anytime you want to post
Hugs
Deborah x
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another day and i cant bare to face it, but i have agreed to work in the flower shop.
so i will get up and go. i admire you for bringing your mum home I could never have done that. i should have been with her more i got the whole dementia journey wrong for mum and she deserved much better. i dont know how to live with that. Or even that i can as i cant function,
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Hiya Olive,
Don’t beat yourself up about anything ok bec you did all you could have done and your mum knew that.
And you are doing so well now going back to work. You really are.
My mum wasn’t treated very nicely when she was in hospital and so I fought very hard to get her home. But it was heartbreaking every single minute of it.
I get terrible flashbacks but am learning how to deal with them
I hope today is going ok for you.
Deborah x
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yes the flash backs i see mum being "turned " by the carers her tiny frail body so frail, i see her face in the last three days just breathing, only moving an eyebrow,
when i close my eyes i see them when was having my eye test i thought of her eyes which didn’t see at the end.
sorry if that is too much . sorry
i should have made her last six month better, i thoigh i had time, i was a coward i should have acted sooner
hi Bluebell yes i understood your post, my regret and guilt is overwhelming today .
EOL with dementia is so harrowing watch and everyone is powerless it seems.
it has only been three weeks since mum died.
Hi Olive,
Stop tormenting yourself bec you were there for her and that’s the important bit and your mum knew it. Grief is doing this to you bec in the beginning I felt the same. It will drive you mad. Just think like this At the time you find everything in your power for her but the best thing you did was to be there for her.
Yes I remember the things the carers did and my flashbacks list would be endless if I started telling you
But the way I deal with my flashbacks is to call them memories. Ok some are not nice and not something you want to remember but never the less they happened and we were there and now have to deal with it all somehow. I actually didn’t can’t carers w hen mum came home as I wanted to go everything myself for her but they wouldn’t leave her come home if I refused carers. So I played their game and agreed. But looking back they were angels band having them allowed me to be mums daughter and not her carer. I never left mum’s side whilst anyone came to care for her or the visits from nurses and doctors. I have great comfort knowing she knew I was by her side being as hands on as I could.
I have despite all that got hundreds of regrets and guilt feelings. Should I have talked to her more about things or asked her if she was afraid. Should I have tried harder to get her to eat. Should I have tried getting her out of bed. All these thoughts are torture.
In the beginning I dwelled on all the guilt feelings ,the bad bits, the flashbacks of horrible times when mum looked so ill. Now I try to focus on the good or funny times when the going got really bad. For instance a few days before mum passed she asked for water and I had a variety of different drinks for her but she wanted water. I went to get the beaker either a straw in it for her and she noticed it was in her sideboard as her bed was in the lounge. She couldn’t move at all except her eyes. She told me off bec she wanted fresh water not the water in the beaker. She was quick as a flash bless her to notice. It’s hard to focus on the good funny things for you though as it’s still so raw so I wouldn’t try just yet but it will in time happen.
Just keep telling yourself you are doing well bec it’s such early days for you.
Love Deborah x
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Aww olive it’s only been three weeks. Bless you. You are honestly doing so well. Back at work and coping with the world.
Spend time on yourself now and just take tiny baby steps each day.
I am here for you along with so many others so post whenever you can.
Eol is the most traumatic thing anyone can go through.
Deborah x
i am working in the flower shop so i am not alone at home punishing myself.
i am dreading going back to my actual job tmrw on a phased return.
i should have moved in with mum, i thought there was more time, there were so many mis communications with my sister, who lives close and was mums main carer. i thought she had it all under control but she was struggling and i see that now.
I had the where with all to sort all these things and i didn’t. Shame on me and I am struggling to live with that. I was waiting till my sister came back from holiday and was calm enough to sit down and sort it but then it all went wrong so quickly.
the end of life period was around two months in all and I just couldn’t leave mum to face that alone that is the least i could do. being with her was just what was needed i couldn’t leave her.
Its how it would have all ended any way but it was all too soon.
mum didn’t want to go into a home she was in her house until the very end but I should have been there for the last six months.
Hi Olive,
Its very early days ok and its natural to think like you are thinking right now. What ifs are teh guilty trip we all go on . I slept in the chair for 17 nights whilst mum was on eol in hosp and i have never felt so helpless. i am always in control sort of person who always sorted everything out for mum and i feel so guilty i couldnt save her. I try to think i was there and that was enough for her but now and again the horrible guilt feelings about lots of things hit me hard.
I know you couldn’t leave her and you really did the right thing is staying with her.
What is your job that are you are going back to ? Is your boss understanding to your situation?
Please keep posting
Deborah x
Hi ironically i am a support worker with the homeless, and i run a project for the “last chance” young people from 16 to 25 yrs old.
That is why i am so devastated that I didn’t support the most important person properly.
I am supposed to go in to wk tmrw for a phased return, i really cant face it i feel like a fraud.
on top of that the district nurses have raised questions over mum’s death, (long story of me having to keep an eye on her care and constantly fight for pain relief).
so i have been asked a few questions and the home will be approached.
i so wanted her to have a "good death "i did my best I was there 8 to 10 hrs every day and over nights at the end.
the final kick in the teeth is that there was probably an underlying undiagnosed health problem which accelerated the whole thing. I wouldn’t want an investigation but it does suggest that the hospital gave up on mum.
The hosp gave up in my mum for sure and I will never forgive them.
One day at a time Olive.
If you can’t go in to work tom then don’t. I feel it’s far too soon for you even on phased return.
You have such a lot to deal with.
Am thinking of you
Deborah x
it seems like the ultimate betrayal that i can just pick up my life and carry on . I let her down so badly, I should have been there not just at the weekends, it all came round so fast.how can life just carry on how can i live with myself.
Hi Olive.
I have been in your shoes ok and said all teh things you have said . When people on here told me otherwise I didn’t want to listen as I felt they were at times heartless and just saying things to make me feel better. However I realised after a long time eg 15 mths that they were right. I felt like you did because it was grief doing it to my mind. It really really is. Its is still raw for you and you need time to heal.
Its not a betrayal picking up your life again. You need to shift that thought ok . Look upon it as living your life to the full, making your mum proud and living for her.
In time and only after a long time you will smile again at your memories instead of that gut wrenching crying. It will take a very long time but you will.
Please put yourself first now and look after yourself.
Are you back at work today ?
Deborah x
yes I feel that people are just placating me.
I went back to work today and it just cemented my feeling that I should have been with mum rather than supporting others, it all seemed so pointless and made me feel that I am a heartless worthless person for letting her down.
Yet all that self pity seems empty as she is gone and its all too late, I know it does no good and I am exhausted now with a headache.
I seem to be one of the broken people , but I have been doing things so far not just giving up completely. x
Hi Olive,
You are not worthless but I totally understand why you feel like that.
Yes going back to work makes you feel all sorts of emotions. And I get exactly where you are coming from in thinking like you do.
This awful feeling will pass for you. It may never go away completely but it will ease. Some of my guilt feelings have eased over the past few months
Have you thought of keeping a diary about how you feel Look back in a year or two years and read it . You will see how far you have come.
I know you have been doing things and that is truly amazing.It really really is.
Keep doing what you are doing. Keep fighting this beast that is grief. Keep planning tiny steps for each day. Rest as much as you can and look after yourself
You managed a massive step in going back to work. You should be doing proud of yourself.
Deborah x
Hi well I didn’t do so well at work, i just could not keep it together I did end up working till late as I had to take a young person to A nd E. But being at work seemed so pointless and reinforced the feeling of guilt that I should have left it to be with mum last October, I was planning to and spent every weekend with her and any holidays I had I was waiting for my sister to come back from holiday so we could sort it out, but then it all went wrong.
So I couldn’t go back today and i don’t think I can ever go back I have been a support worker for around 17 yrs and I am not sure I have any more to give especially now that I realise that I am not the person I thought I was. It has shaken me to the core, how did I not do the right thing it all seems so clear and simple now.
I am so glad I was with her every day for the last two months even if she didn’t know who I was I was someone to hold her and reassure her and speak up for her,
Hi Olive,
Please don’t make huge decisions at the moment bec it’s grief making you think like this.
Take more time off work. Go to see your GP and get a certificate. You need far more time to heal yourself before you are ready to help other people.
You may think so different in a few months time.
You do have so much to give other people. At the moment you are in the deep hole of grief. And it’s just too much for you.
Make an appointment with your GP because you need to do this for you.
Deborah x