Grieving my mum in lockdown

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Hi, I’m new to this and after reading many previous discussions wanted to kind of off-load my thoughts. 

I lost my wonderful mum aged just 66 on 26th January this year.  Mum was diagnosed with Non-Hodgkins Lymphoma in April 2020, literally as the pandemic took hold.  Throughout the year my parents have shielded and thankful my mum was able to receive treatment.  Mum went into remission in August but only for a short while.  Mum became very ill in November and after a catalogue of blunders, she was eventually admitted and told her cancer had returned aggressively and spread to the central nervous system.  However, a new treatment plan was offered with chemo and stem cell leading to quote “remission and cure”.  I am now robbed.  My mum has died and not from her cancer but this wretched COVID.  Mum went to hospital on 26th December to receive her second course of MATRIX chemo but as treatment was to start she had a temp spike and medics found her PICC line to be infected.  As a result her chemo was pushed back a week.  Chemo administered which was promising and mum coped well all things considered.  She finished chemo on a Friday by Sunday mum tested positive for the virus.  My heart broken when I received the news; I just knew the cancer she had which obliterated her immune system would not mix with COVID.  Mum showed no symptoms for a few days until oxygen was eventually needed.  We lived in hope during her final week.  We were called to support mum even though palliative nurses were ready to “start the process”.  I’m thankful they didn’t as we had a whole extra 9 days with mum with 24/7 access where my sister and I did 12 hour shifts.  It also meant both my brothers could return from their respective countries to be with mum.  In some ways I think mum was holding on to have all four children with her plus my dad but in all honesty, I’m angry that I’ll never know if mum could have beaten her cancer.  Her life was cut short so prematurely after such a courageous battle.

I know I am in the grieving process and have so far experienced everything from shock, exhaustion, silence, a “sad cloud” as I call it, realisation and now questioning everything.

I’m 35 and my heart literally hurts.  The enormity and overwhelming thought that my mum is never coming back is so painful.  How do I cope going forward? Will I just learn to live with this? Will this heartache ease? It’s been 4 weeks and I am no where near ready for returning to work.  Lockdown grief feels so much harder; no hugs, crying with friends, still have to homeschool my 5 year old and manage the demands of a 2 year old.  My sleep is shot and find myself processing grief in the evenings.  Is this normal? Do I need help? I literally don’t know because I don’t know anyone who has lost their mum.  This grief is like no other. I feel extremely isolated but grateful I have a sister who also feels the same.

  • Hi Alex, 

    Whilst I have no idea what you look like, I was thinking about you today with the funeral.  I’m sure this has not been easy and utterly exhausting and if you find the funeral created an even bigger crack of sorrow than before, you are not alone as I also experienced this; however, I know we’re all different and that might not be the case.  

    Your mum and dad sound just like mine! Mum very much the glue and dad not a clue! He can’t even do a food shop so I add everything to my online order; I don’t mind at all but shows the extent of his dependence on my mum who could whis round a shop with no list and get everything they needed.  The struggle with my dad is our personalities are vastly different so I’m finding I need a new level of patience.  I’m more naturally optimistic, positive and upbeat, where my dad is pessimistic, negative and almost thinks bad things will happen; it was most tiring throughout my mum’s cancer journey where she was at peace with everything and dad frantic with concern.  Maybe that’s what it is like in that scenario where the patient is calmer than everyone else.  I have read that a daughter-dad relationship can grow stronger in a situation like ours so I have no doubt it’s possible but again, my dad is, without sounding rude, very inward focused, it’s all about him.  My mum brought the sunshine, my dad brings the rain and that’s how it has always been.  My dad’s short term memory is also appalling, to the point of worrying.  He asked not once but 100 odd times when the date of mum’s funeral was so you can probably see the challenges I am going to face from now on *sigh* but I still love him and it’ll just be a new norm to adapt to.

    I actually went back to work on Monday much to my upset at first.  I felt like I was being “managed” back but in hindsight it’s been fine.  My boss has been great to be fair with zero expectations but I would advise a doctors note if you really cannot face returning to remove any anxiety.  My sister has done this. I had 8 weeks off in total and only did half days all week which has eased me.  Now Friday is here, the whole week completed it’s not been as hard as I was making out in my head.  I read other posts about what people had done and it’s true when they say only you will know when you feel ready to return.  I think I’ve said before this is a major, traumatic bereavement especially in lockdown and that needs to be recognised so if you aren’t ready and there’s pressure to return too soon, just speak to your GP.  

    Your mum will always been remembered and missed and like you, we are also planning a memorial service when we’re able.  I think it’s the least we can do for our dear mums loved and treasured by so many.

    X

  • FormerMember
    FormerMember in reply to Finny35

    Hi everyone

    I have just found this thread, read it all and have found such comfort in hearing about similar experiences - thank you for sharing, it has made me feel like I want to open up a little more about my grief and add to the conversation if that’s ok.

    I lost my mum to pancreatic cancer on 29 November last year. She was also 66 and I’m 30. My family live in Liverpool and I live and work in London with my husband.

    Being so far away has been agony and one of the hardest things I’ve struggled to come to terms with since mums death. Those futile “what if’s” which are so pointless but still fill my head, if only i had gone and spent the lockdown with mum and dad, if only Covid hadn’t happened, if only we could have gone into the hospital to visit mum in the last month of her life.... none of it helps but those thoughts still cloud my mind and I know are all part of my process of grieving my beloved mum.

    I am also trying to face grief head on - I am like a leaking tap and anything can make me cry (it surprises me how often / how many tears are inside) and I don’t try and force it to stop. I immerse myself in books, podcasts, music, which all help me try and understand what I am going through and provide insights into how other people cope. I have also had some bereavement counselling through a charity which I wholeheartedly recommend, especially if like me you don’t like / struggle to be vulnerable in front of other people. I am glad this is how I am tackling grief, but having said that, it is incredibly exhausting and having been back at work since January I am now finding every day feels like an uphill battle like I’m walking through treacle.

    My love for my mum was so pure - like others here our relationship was one of pure happiness and joy, she was a best friend, providing me with a wealth of emotional and practical support and was so well regarded by everyone that knew her. I can count on one hand (post teens!) how many times we ‘fell out’ - it so rarely happened. She knew me so well and was the one person I could always turn to. In some ways I feel there is a duality of my grief for mum. A howling pain for her loss and absence, and a gratitude for her presence and influence on my life. I flit between the two and have to hope that in time that pain will start to quieten and the gratitude and love will bring a calming comfort.

    Something I don’t think I had even considered would need to be navigated after mum passed away was remaining relationships with other family members. We have always been a strong family unit but that dynamic has completely changed now. It is something that I have really struggled with and haven’t quite got it worked out yet. Like someone else here has said my relationship with my dad is great but so different to my relationship with mum. It is hard not to expect that same support that you once had from someone who is just not the same person. And when it isn’t provided feel hurt or resentful. The geographical distance doesn’t help either and I’m just feeling pretty disconnected and lonely despite having a loving sister and dad. I know they’re navigating grief their own way and at the same time too, so perhaps I just need to manage my expectations and recognise that these feelings are all just me yearning for my mum and everything she provided for me.

    Wow, I had intended for my message to be concise and clearly I haven’t managed to achieve that! I guess this just reflects how many places grief can hit and how busy my brain is right now - it is utterly sh*t and a total headf*ck (pardon my french).

    But, we have to have hope that the love our parents have provided us will help to heal this pain and our grieving journeys will undoubtedly help us to learn more about ourselves in the future.

    I hope today is going ok whenever you read this. Taking things one day at a time certainly helps. And sometimes when even that feels too hard, one minute or hour at a time.

    X

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Darfi,

    im so sorry for ur loss & the pain ur going thru. 
    I lost my mum to lung cancer 12 weeks ago and I can relate to much of the loss that ur feeling. I’m nearly 45, and mum was 72, but she was my absolute best friend, confidante & my day to day. We spent virtually everyday together & i now come to her house alone just to feel near her. 
    Im so sorry that ur dad isn’t able to be the support that u need, but as u suggested, he’s obviously trying to process his own grief. That however, doesn’t make life any easier for u my love. 
    In my experience (now having lost both parents) grief is such a complex beast & everyone deals with it so differently. Ur distance must make things doubly hard for u & I can understand ur feelings of disconnection. 
    I think it’s natural to look for parental leadership to help us navigate our loss & all our connected feelings. For me, even tho there was no surviving parent after my mum died, I kept almost looking over my shoulder for that guidance to help me....so I can see why u would feel the same.  
    All I can say is be kind to urself & use this forum as an outlet-it’s weirdly easier to talk to strangers  & these groups have really helped me. 

    lots of love & hugs xoxox

  • Hi Holly (and everyone else - welcome and I'm so sorry you're going through something similar to us).

    Thanks so much for your message, which I spotted a while ago and was really grateful for.

    A lot has happened since my last reply and it's been quite a rollercoaster. 

    It got to the night before the funeral and I was having massive panic attacks about the idea of Mum being cremated. She always said she wanted to be buried, and it felt like we'd been rushed into cremation. I hated the idea of her body burning. 

    In the end I rang a funeral directors down in Devon, a place my Mum absolutely loved and which holds dear memories for me and our family. I was in a state, but they were amazing and reassured me I wasn't going mad and something could be done. Before I knew it they'd contacted our local funeral directors and arranged for Mum to be collected the following Monday and taken down to Devon, to be buried in a natural burial ground very close to where we used to stay as a family.

    It was a bit of a whirlwind and stressful morning before the funeral, but because we'd then miraculously sorted things out, it meant I could appreciate the funeral for what it should be - a celebration of Mum's amazing life - without the absolute dread of her being cremated hanging over me. It was really nice spending time with people who also loved and cherished Mum.

    We then had to wait a bit to get a date, but we finally buried Mum on Tuesday. The site is absolutely beautiful and just perfect for her. I was so relieved. It sounds ridiculous but I just felt she was in exactly the right place, and it's given me enormous comfort to know there's a place I can go back to, to be near her. It's cost an awful lot to get sorted but it's also the last thing I'll really do for her and I just wanted to get things right.

    It also meant me, my partner and Dad could spend time somewhere different for a couple of days. It was a massive help having a change of scene and some fresh sea air. 

    Since getting back it's been a massive comedown and I've felt absolutely horrendous this weekend. Now Mum is finally resting somewhere, the hard work of accepting it's happened has begun. I do feel like I've been on autopilot - feeling the emotions but not able to connect to the logic of what's happened at all. I still look around their house and it's as if she'll just appear. I simply (still) can't take in that she is gone FOREVER, not just for a bit. Things opening up after lockdown is adding to the weirdness - things are "going back to normal" but there is just no normal for me anymore - so much of my life and daily routine was oriented around this existing dynamic which just doesn't exist anymore. I feel totally adrift.

    In the meantime, one of my old colleagues shared some resources that helped their friends who lost their mum to brain cancer too. I've practically inhaled them over the past few weeks. Some have been more helpful than others - here's the list in case it's helpful for you and others:

    • The Loss Foundation offer group therapy sessions or the social events - they mainly provide support for people who have lost loved ones to cancer but she could come to a social which are for anyone who has been bereaved (details here): https://www.thelossfoundation.org/faqs/

    Personally, I found Losing a Parent the most helpful of all of these.

    I had a day at work a couple of Fridays ago and found it completely overwhelming. I'm technically back at work from tomorrow but we'll see how I go. I've only got 3 days this week then 4 day weeks until May thanks to annual leave. 

    I've also arranged two lots of bereavement counselling and general counselling with a local hospice and through my GP. 

    My Dad is doing amazingly, though he's not really talking about things much. I sense he doesn't want to - he tends to change the subject quite quickly when I mention it, and is probably overwhelmed. By contrast I'm quite open and have been crying a lot, though I'm trying to do so less in front of him because I can see it's making him uncomfortable. He's very self sufficient (always was - he and Mum shared the housework equally), but as we take on each day I am more and more worried about how his mental health long term. He and Mum were together 44 years and best friends - the company he's lost is enormous. I'm going round every day at the moment so he's not alone 24/7, but have no idea if that'll work for us both longer term.

    Meanwhile my auntie (Dad's sister and one of Mum's best friends) has been wonderfully kind. She and Dad lost their mum to cancer when she was just 12, so she can definitely relate to what we're going through. Her and some really good friends have been lifelines - having somewhere to chat to no matter how shit you're feeling has really helped.

    How are you getting on?

  • Hi , how are you and your family doing? I’ve been thinking about you today, and over the past few years.

    Today is 3 months since my Mum died. I still can’t believe those words are true. And I can’t believe it was only 3 months ago. It feels like I’ve lived 1000 years in between, yet she’s still so familiar and close-feeling.

    It’s definitely been more of a rollercoaster the past month. Life is flat most of the time and I have longer patches in between the real lows but the lows are INTENSE.

    I’ve struggled to express myself to my partner which is causing friction and I don’t have the energy to sort it out. I feel so selfish being so wrapped up in pain and tiredness but I simply don’t know what else to do other than try and look after myself. 

    I’m 6 weeks into bereavement counselling through a local hospice. It’s been a massive help having a dedicated time and non judgemental space to talk things through.

    My brother is back in the states and seems to be doing ok. My Dad is carrying on with his gardening and volunteering. We go round or have him for dinner about half the week. Gardening has also helped me a lot, in having something physical and involved that occupies my head for long stretches.

    How are you finding things now lockdown is easing? It feels very weird going back into shops (which I’d avoided most of last year for fear of infecting Mum and Dad), especially charity shops which were a favourite place of ours. And thinking ahead to the summer, when she won’t be there for birthdays, barbecues, holidays... not just for this year but forever. It feels impossible to bear.

    Life is stretching out ahead and I’m struggling to find any meaning in it. The days blur into each other much like they did last year, only now I have a massive gaping hole in the middle of them.

    I’d love to hear how you’re getting on, if you feel up for sharing.

  • Hi Alex

    Firstly, so sorry for the immense time lapse since your last two messages; life has been one big stress.  Not to bore you with the details but in summary, I returned to work for all of 4.5 weeks for my manager to insult me, enough to reduce me to a panic attack and I have so far been signed off work for the past 5 weeks.  HR is involved, OH assessment booked but things need to change!  I have put up with his constant demands over the year even to the point of him asking me to check emails, have my end-of-year review and pay review meeting during my mother's last days and in bereavement.  I also feel I have been managed back to work to suit him quote "if you want longer off work we'll need to get a temp and that will reflect badly on you"!! I trusted him when he said, "there is zero expectation of you returning, you take as long as you need".  In a previous post to you, I actually said my manager was great! Hindsight is a wonderful thing and he has done nothing but manipulate me! Any advice to people going through a bereavement and cannot face work...get signed off by the doctor so you have the clear headspace to grieve. The anxiety and stress have been awful to the point of thinking have I dealt with my mum's grief and if I am suffering from PTSD.  I know I can stand firm on the fact I have faced and dealt with the rawness of grief as I have written and documented my grief journey to see how far I have come with processing.  Since the stress has taken over I can't even think of my mum and that really upsets me but I can't take the emotion of that right now.  I am quite literally trying to leave work in a box and focus on looking after myself.  So, I guess my experience with yours is completely different.  I don't feel anything in terms of grief; work stress has overridden and absolutely distracted me from my mum.  I do worry that when this work stress is resolved I'll have a massive comedown and fall into a crumpled heap of sadness but I can't think that far forward because I have no idea how I am going to feel.  I have started counselling though to work through grief and work stress so I hope that will allow the space to focus on my mum a bit more.  I miss her terribly.  I said to my husband the other day I'm ready for her to come home now but of course, that will not happen.  I find myself looking at pictures and trying to make sense of it that mum was once alive but now she isn't; how is that possible! My mind tricks me into thinking did she even exist which I know she did, she carried me as her child but the mind is torture sometimes.

    I found Easter difficult; it caught me off-guard and found myself crying at random moments but I just let the tears wash over me and continue with the day.  Little children distract you all day long so there is much time to wallow.

    I hadn't given lockdown much thought to be honest, probably because of other distractions but I am aware my mum is not at the family home anymore, a home I hadn't stepped in all last year to keep her protected and now her presence is missing.

    I'm pleased to hear you are doing counselling and finding therapeutic activities like gardening to help.  I think much of the year will be those new norms we have to accept and adjust to with the anticipations of those emotions that come with it. I don't feel I'm being much use at relating right now, this is probably the first time I've actually typed and thought about my mum since stress took over and I feel ever so disconnected and detached from the grief I was facing only a few months ago.  Just thinking about the date I realise tomorrow, 26th May, will be 4 months since I last held her hand. 

    Hopefully message again soon - sooner than two months!

    x

  •  

    Hi Holly,

    I’m so so sorry to hear things have been so difficult for you, especially with work. It sounds awful and it seems like your boss has been not just insensitive but actively harmful. Some of the things you’ve described are thoughtless at best and malicious at worse. Just exactly the opposite of the gentleness and understanding you need from a manger at the moment. Do you have any trusted colleagues you could confide in about it?

    I’m glad to hear HR are involved so you should have some backing from a neutral perspective. Have you spoken to any outside organisations? Citizens Advice might be able to offer some support, and maybe Macmillan too - at the least other more sympathetic spaces to share what’s going on and maybe give you some practical help too.

    I can 100% relate to looking at pictures and trying to reconcile the idea that Mum just isn’t ever coming back. It’s still so unreal. Mum was really camera shy and I’ve actually got very few photos and especially videos of her, but when I look at them it’s as if she’s just going to walk back in, like you say. I really just want her back so badly and like you, miss her terribly.

    Your comment about wondering “did she even exist” is uncanny - I think this SO often. She left so quickly that it feels harder and harder as time goes on to remember what her being in our life was like, especially after a year basically apart. And in that year she did decline but I simply expected she’d recover. I pushed aside all thoughts that it could be the end because a) doctors were suggesting otherwise, b) I didn’t want the idea to get in the way of our time together and c) deep down I don’t think I was ever really aware that she WOULD one day die - because I didn’t expect it to happen so relatively early in my life. That combination makes it all seem much more unreal than I expected it would. And yet when I do look at those videos and photos she’s the most familiar thing in the world and my heart breaks all over again because I won’t ever see her again.

    I think your tactic of letting the tears wash over you then getting on with your day is a good one. The tears do just need to come out sometimes and while it doesn’t always feel cathartic, it’s surely got to be better in the long run than holding it all in. The waves seem to come less often now but they still drown and frighten me when they do. The rawness is like nothing else I’ve ever experienced. 

    Easter was also hard for me - Mum used to go to town and her not being there changed the dynamic completely. 

    Holly - I really, really hope you get the safety and resolution you need from your work. Your manager should be doing everything they can to shield you from as much stress and suffering as possible, not causing it or making it worse. Please do keep sharing here if it helps; I’m listening and I’m sure others are too. Don’t worry about being “relatable”! We’re all just here to listen to each other as we go through this awful experience in our different ways.

    I’ll be thinking of you and crossing fingers that things get better for you soon x

  • Hi...I know this post was from a few months ago but I came across it after Macmillan sent the link to the community pages. I lost my mum 3 weeks ago tonight. She was diagnosed with non Hodgkin’s lymphoma 10 years ago and had chemo through the years and lived a relatively normal life. In October last year we discovered she had developed a high grade tumour which was pressing on her kidney. It caused all sorts of problems and a 5 week hospital stay followed, alone for her due to lockdown. It was terrifying but they told us with the chemo plan the tumour could be reduced and so it began.

    She was on chemo number 5 of 6 when she began to have severe headaches and neck pain. After calling an ambulance one morning with the severity they decided to perform a lumbar puncture and discovered it had spread in to her central nervous system and there wasn’t much more to be done. After a last dose of chemo to allow her home she was determined not to give up. 6 weeks after deciding no more treatment could be given we found ourselves somehow at her funeral.

    I feel like it can’t be real. She was my best friend, the most wonderful person you can ever know and she didn’t deserve this. She was 66 and we should have had another 20 years with her at least! I am so angry and so unbelievably sad. Like everyone here I just want her back. It’s so hard for people to understand when they haven’t been through this. I am so sorry for everyone’s pain and loss, I wish none of this had happened. But it is some comfort to know there are people who understand x

  • Hi     - how are you?

    it’s coming up to a year since my Mum died and it must be around the same time for you all too.

     I’m so sorry I haven’t replied to you sooner. I got locked out of the forum and it’s taken me a while to get back in. I’m so utterly sorry for your loss. The speed with which this awful disease can spread is terrifying. It still feels impossibly short. I hope you’ve managed to find some comfort over the past few months.

     how is your work situation now? I’m so hoping you’ve had at least a bit of a break. I’ve been thinking about you and wondering how you’re getting on. 

    I can’t believe it’s been 9 months since the last few posts. Time has passed by so quickly but also so slowly.


    I’ve made some changes in my life over those months, partly to give me something else to focus on and partly because I’m more aware than ever how short life can be. I started a new job in September and began a garden design course. Both are interesting and absorbing enough that I can go hours if not days sometimes without thinking about Mum for more than a few minutes.

    She is still on my mind most moments of most days though. The pain is still there - mostly a dull and distant roar now, but occasionally (especially recently as the anniversary approaches) it’s particularly acute. My Dad and I have barely touched her things which adds to the sense that she’ll walk back in again one day. Looking at photos and videos it’s still impossible to believe that she won’t. I don’t know when we’ll start tackling them. I’m absolutely dreading it.

    Dad has also had a difficult year, learning that he’s not allowed to drive, and losing a close friend recently. I’m still spending a lot of time with him and it’s been nice getting to know him more and feeling closer to him. He’s had so much to adjust to and I’m worried about getting the balance right - so he doesn’t feel lonely but I’m also not crowding him or preventing him from getting on with his life. Most of the time he’s keeping busy and seems ok, but he doesn’t often explicitly talk about how he’s feeling - though we do mention Mum often and reflect on our memories, so maybe that’s enough.

    It feels, especially with the pandemic lessening, that life is about to enter a new chapter. I’m mostly ambivalent about it because it would not be a chapter I’d have chosen if I could have. I miss Mum so utterly and don’t want to ‘leave her behind’ as I try and keep existing. But I also don’t want to stay stuck focussing in the past. I’m not sure how to do any of that, or any of this. It’s like learning to live again. 

  • Hello Pinkegocane

    Thank you for your reply, I too can’t believe it has been 9 months. I had almost forgotten about this forum and posts even though the thoughts of my mum are stronger than ever. After being unable to imagine any more pain, unfortunately my grief was compounded in October when my Dad took his own life. My overwhelming grief in losing my mum is now punctured with the complex emotions losing a loved one to suicide brings. 
    It’s interesting that you say you’ve started a new job, I hope that’s going well. Even though I am only just stepping back into working life I often wonder if I can continue in the job I was doing when I lost both of my parents. Now at 36, I find myself trying and failing to imagine a future without them and whole heartedly agree with your statement that it’s like learning to live again.

    I hope everyone on the feed is well and managing as best as possible.