Anyone else experiencing the same thing?

Hi All,
I am new here.
Not sure really what to say or where to start to be honest. My counsellor recommended this for me to try and open up more and share, but also for me to see if anyone else is experiencing the same thing as me.

It is 3 years now since my mum no longer here. I can’t say certain words or certain phases i just can’t the words are not there. Even hard to write it down - although I have not tried but writing this i feel as if i can’t type the words.

I hadn’t seen my mum for over a year Sept 2019 until Nov 2020 when I saw her in hospital unwell. It was only so long because i had my 2nd miscarriage in the Oct 2019. Then of course it was COVID and lockdown. My mum had her accident 7th Nov 2020 was in hospital for 2 weeks and of course never got to see her until Nov 19th at 11pm when the matron gave me permission to visit. I travelled up on train to see her not really know what to expect. The doctors said she is stable be fine to come see her after the weekend. But my gut told me to up that same night.
I was with my mum for 30 mins, and was so shocked when i saw her didn’t look like my mum. So small and frail in the hospital bed with oxygen mask on. I helped to hold her head up to help her have a cup of tea from the spouted lid beaker. I was so shocked this was not like my mum despite all her medical issues she was independent and stubborn. But even just this act to help her have a cup of tea and seeing her made me realise she was really unwell. I didn’t realise how unwell she was, the doctors said she is stable over the phone.
What is so upsetting is the image i still have of mum is when i saw her at 11pm at night not when i went back at 2pm to see mum afterwards.

When i was with mum she appeared to fluctuate with confusion, she would ask me where my husband was, then the next minute she be asking to get her out of the cupboard and why is she in the cupboard, she appeared distressed and kept asking my white am i in the cupboard i found this so upsetting. Then next minute asking for some M&S toasted teacakes which i promised i would buy the next morning for her.
Despite the face mask and all the other PPE I had to wear (luckily mum didn’t have COVID) I removed it all so I could kiss mum on the cheek.
I know i should be lucky I has that opportunity and to tell her I loved her but does not make the experience and images i have in my head still 3 years on any better.

I was rushed into sorting mums things out and dad selling the house and rushed into collecting the ashes and going up to the Lake District.
I had 3 burning questions for ages afterwards so much so i managed to obtain copies of mums medical notes. I went through these slowly and making my own notes but felt like i was looking at another patient not my mums notes. Only recently have i been able to say the questions to my counsellor and a friend:

  1. Did mum really think she was in the cupboard?
  2. Was mum scared?
  3. Did mum know she was going?
    I did look back at the medical a year ago and realised that they did do everything for her but mum kidneys were failing with all the meds given to remove to fluid around mums heart and lungs. Not that she had fractured her spine and pelvis from the fall .

My counsellor says am stuck and suffering from complicated grief because its 3 years on and can’t say certain words or phases and i have a dissociation and problems dealing with no longer having mum.

Previous to this i had my 2nd miscarriage and husband left me for 9 months because of his own mental well being. These past 3 years yes been living in the past and only recently been made aware of that from other recent Counselling due to all the negativity from my dad and sister over this time.
I know i have kept myself so busy that this has hindered me and as my counsellor says anything to do with mum emotional i have in a box. I went down the practicality side of things immediately after.
But now I wrote a list as advised by mu counsellor of still outstanding things to sort out and do that left because now the automatic pilot is no longer there. Part of the list is this reaching out.
Part of me knows i need to deal with this now or I never will. but also part of me doesn’t because its true what my counsellor said i have to move forward and that means accepting reality. I am scared.
The only real emotion shown was of course when the ward sister rang me at 1am when i got back to hotel room to tell me and noise that came from me frightened me and the immense feelings that hit me in one big go. Somehow i sorted myself out and waited to be picked up to go back to the hospital but no emotion then. That weekend when i returned home i did not speak and only tears rolled down my face. Then the following week i went down my to do list for the funeral. Until a year or so later when listening to some music and suddenly not really a sad song but one of mums favourite played and found myself sat on kitchen floor screaming but no sound coming out and tears rolling down my face.

If I have a moment as i call it when i suddenly feel something inside then i push it away. I have been advised that i need to tay with this feeling the next time i feel it. I have to feel the pain to grief and heal. And yes i am stopping myself because i don’t want to face the reality. I was so close to my mum she was my rock and would go to her first to share things of any news and for advice. But this you don’t get any instructions and the one person i want to talk to about this i can’t.

There is so much more i can say but aware what i wrote is so long. sorry . I hope all this makes sense and someone out there can relate and still finding things so hard to get their head around how your mum here and then not.

Hello @Poppies,

I can see that you’re new to the community, so I wanted to say that I am so sorry for the loss of your mum that brings you here.

I’m sure someone will be along to offer their support, but I wanted to share a few Sue Ryder resources with you that may help right now.

Thank you again for sharing – please keep reaching out and know that you are not alone.

Take care,

Alex

Hi @Poppies - firstly I’d like to say I’m so sorry for your loss - my heart goes out to you.
From what you’ve said/asked re your Mum - did any medical staff ever suggest that she might have been suffering from delirium, possibly brought on by an infection? Reason I ask is my Dad collapsed at home early November last year, was taken to hospital with what we were initially told was a chest infection and a bad kidney infection. Within about 20 hours of being in hospital he started behaving very oddly and this progressed over the next few days into full blown delirium. He was seeing and hearing things, became violent and agitated, rambled non-stop and this lasted for days. It turned out he didn’t have a minor chest infection but ever worsening pneumonia, which took his life after 12 days. The person he was most violent towards was my adult daughter and he would have been so upset had he have known what he was doing. They had such a special bond for all her 20 years with him. We kept up a 24 hour vigil for a week, keeping putting his oxygen mask back on when he yanked it off non-stop. We did this while the medication was trying to do it thing and make him better. It never did.
I’m sure on some level my Dad knew we were all with him when he passed and I’m sure even though your Mum was so poorly she would have felt your love too. If she had delirium, as my Dad did, I’m pretty sure she wasn’t scared, just confused.
I think we all have so many questions after our loved ones pass and things we could have said and done. Its an on-going torture sometimes but always know whatever you did before and after your Mum passed was done out of love. I get the autopilot feeling - I had and sometimes still have this feeling. You’re so brave that you’ve taken steps to address your mental well being and have counselling and I’m sorry you’ve not had the support from all around you. You’ve been thru so much @Poppies.
Are you able to re-visit happy memories you shared with your Mum, visit special places or look at any photos or is that too difficult still? I have so many good and bad days around my Dad’s loss but I talk about him to my friends and family and we share our memories and happy times we were with him. I am lucky I’ve been able to do this but its not all been easy and I’ve not really had anything to do with my only sibling since a month or so after the funeral as absolutely everything was left to me then and since with the ongoing care and welfare of my Mum. Its made me beyond sad to be treated in this way and makes grieving all the more difficult.
Do you have any close friends you can talk to?
I totally understand you saying how you want to talk to your Mum - I’m the same and would love just to chat to my Dad…in person. I seem to have lots of imaginary conversations with him these days though.
Can you maybe write your Mum a letter, letting her know all that’s been happening with you? Perhaps getting things on paper might help you say things you can’t yet say out loud. Could be a positive step for you?
This site is amazing and there’s so much support out there for you. Sending you :heart:

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My deepest sympathies for your loss and everything you have gone through. It was brave of you to share your story. :heart: Are the words and phrases related to what happened to your mum or just any words? I didn’t have that problem, but I stopped reading for pleasure when I lost my mum (and reading was a passion), I just couldn’t do it for the longest time. Can I ask, is your counsellor experienced in trauma counselling? That was what helped me most back then, approaching the most difficult emotions gently and in a way I could cope with. Wishing you peace. :heart:

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Hi Poppies,
Please don’t apologise for your post being too long.
You have taken a great step in posting so well done.
Sadly the way you are feeling is normal because I feel many of the things you do.
Seeing my mum in hospital was upsetting because like you she looked like a different person and you reminded me of those plastic beaker type cups with a lid because my mum had them too. I used to get upset just seeing her use them so I used to pour her tea into a cup that I took in and used a straw. In the end though she wanted a bit of independence and used the beaker. Seeing my mum look do ill was difficult and realising she wasn’t going to get better was just well like having a panic attack all the time. No other way to describe it.
You have been through so much and everyone id different. It’s 15 months for me and I feel I can’t move on with my life. I get flashbacks of mum in hosp and at home when she eventually came home. I get flashbacks of things she said to me which were so lovely.
When your mum thought she was in the cupboard it was most probably the medication she was on and at the time thought she really was in a cupboard. I had cancer 5 years ago and one nights I woke up and thought I was in a dungeon and could vividly describe what was in there. I was totally convinced no matter what anyone said. Ty he same happened to my mum once when she went into hosp. So don’t worry about that one because she would have had medication that affected her knowing where she was… Also when someone goes into hosp when they are used to their own surroundings at home they become a little confused with strange rooms people and routines. Don’t dwell too much on it because it’s going to upset you too much.
Keep going with the counselling and most importantly keep posting on here. This site is amazing. People don’t judge and give love and support and we are all on the same horrible journey.
Soon lots of people will reply and I am sure you will soon have a network of people to post to
Love Deborah x

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My mum was taken to hospital in February this year a week after she fell. I didn’t want her to go in as I always promised her she wouldn’t die in hospital but she had got so confused and delirious (and so unlike mum) and was in pain so I called an ambulance and against my wishes they took her in. I was her carer and I felt so guilty. I visited her in hospital every day and had stopped eating as she couldn’t hold a spoon and didn’t want anyone to feed her, she to had to drink from a plastic ‘sucky’ cup. She was confused and kept asking where she was and even told me to go away at one point which really upset me, this was not mum. Her kidneys had gone and she had an infection which I blamed myself for and she asked at one point if she was dying, I said no, what else could I say? Even though I knew she would never come home again. She said she was terrified and kept saying could I get her slippers because she was going home, she asked whose house she was in and to stop all the men (doctor’s) looking at her. She shouted at nurses, asked who was doing building work , there wasn’t any etc and kept drifting in and out . The worst bit for me was that she was saying something and when I asked what she said she said “oh it doesn’t matter” as she was a bit incoherent, I’ve always wondered what she was trying to say. She passed away ten days after going to hospital and I’m absolutely guilty about that. She was not mum at the end and I feel sad about this. I’m struggling to get over it. I ask did she know she was dying? Did she know who I was? I try to remember mum as she was but find myself going back to her last few days, this hurts me. I have no one to talk to about mum so I’m trying to find some support from groups to help me through it but can’t find any at the moment. My mum wasn’t mum at the end I think confusion is all part of the infection and try and remember this . I don’t think mum knew she was saying what she was saying, the medication they had to give her caused her to be more confused, but they had to give it to calm her down. I’m hoping she was unaware at the very end but I will never know. I know what your asking, and I’ve often asked myself similar questions to the extent that I feel I cannot move on until I find the answer. The only person who can answer me is mum but she’s not here, I feel for you and your loss and can only say try to remember her as she was not how she appeared at the end although that’s the pot calling the kettle black as I find this hard to do. You are not alone so I send my thoughts to you that you will find the strength to carry on with happy memories x

Hi Cenic,
I also had moments when my mum said things and i couldn’t understand what she was saying. It beats me up sometimes but I try to switch my brain to think of a fun happy time otherwise I wouldn’t be able to survive. If it happens in the middle of the night i get up straight away just to distract me because there is no other option.
I too rang 999 for an ambulance and will feel guilty for teh rest of my life that I did that . Maybe if I hadnt mum would still be here. Who knows.!! I know that she had no chance in hospital as they put her on end of life straight away and wouldn’t let me take her home until they needed the bed 3 weeks later. They also told my mum she was dying which i shall never forgive them for . Totally unannounced they came into teh room and told her in front of me. No consultation at all with me so it was a massive shock and i just cant get over why they were so heartless.
Anyhow I am so glad you are posting on here. You need to find ways to heal somehow just a little for now then gradually build on it. Its hard I know but there is no other option. Our mums would want us to carry on with our lives and enjoy our lives but right now its hard going
Love Deborah x

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