Grief before death

Disclaimer: this is quite long and will take a good ten minutes of your life to read! I hope it doesn’t upset or offend anyone it’s only my views and experiences.

When you hear someone is grieving, you may automatically assume that they are bereaved. But many people will be grieving through the entire process of a loved one being unwell, long before they pass away, sometimes years.


I always struggle to describe how grief feels for me. I’ve described it as feeling like my heart is a balloon and when I’m sad, it’s filled with water, sinking heavier into my chest. Other times it feels like it’s being squeezed, and my throat feels tight, nausea sets in, my stomach twists and then ‘click’… it’s time to deal with it because my Mum needs something, I need to sort Rosa, or go to work ready to deal with whatever call comes in.

That’s the reality of life, time never stands still. We live in a time where we are all busy, rushed, struggling to make ends meet and won’t say to someone we’re struggling because hey, that makes us weak right? and like we can’t cope when we “should be” because we have to? We all know that bit is rubbish, but why do so many of us still struggle to talk? I’ve got rather good at dealing with grief through being a paramedic for nearly 8 years now, I see grief in so many circumstances and the different ways people deal with it.

For me, I don’t know what it is, but it is probably a mixture of factors. Sometimes I worry that if I let my feelings out who knows when they’ll stop flowing. My Dad was asked a few years back during a time where he found himself very low through sheer Carer exhaustion and stress, “how do you not cry?”. His answer was “because if I do I’ll never stop”. Nothing has ever rang so true as that statement.

When someone you love becomes unwell, the grieving process starts right there. You might not realise it, perhaps you go through an element of denial or trying to think positive, but it’s sitting there alright. Lurking in the background and pulling at your chest and stomach every so often, perhaps a memory pops into your head, or a song, or you see your loved one sad or in pain.

So how is grieving for the living any different to grieving for the lost?

I think we put enormous pressure on ourselves to seem perfectly ok for our loved ones and surrounding family. I know as a Mum myself I feel a responsibility not to break, sometimes it even feels like a lack of choice. I can’t break, who will go to work for me? How will Rosa feel seeing me this way? How can I keep supporting my Mum and Dad? All of these questions float around, and you get up, put your big boy/girl pants on and carry on with your day.

Thrown into the mix is often a nice splash of guilt too: how can I feel like this when it’s not me suffering? How is my child suffering this way when I am meant to protect them as a parent? How can I even consider having a break when my loved one is struggling so much with their illness? How can I forgive myself for having paid carers or looking at a nursing home? Guilt… guilt… guilt… Unnecessary guilt of course when you look at it objectively, but I’ve never met someone in this situation that hasn’t experienced the feeling of guilt.

The pressure to cope and carry on regardless of your feelings is real. The system makes it very difficult to access formal help at times. Sometimes paying for private carers until you must sell your home just doesn’t feel like a fair option, especially when your wage just about meets the carer fees, but that’s quite often the only option available these days with the lack of money that social services have available. Many carers are working hard to keep their home going, food on the table, care costs, and they don’t catch a true break. Whilst they’re doing all of this, they’re also meeting complex needs of their loved one, it’s no wonder that many carers don’t find the time to look after themselves.

I am quite happy to be open and tell you that I grieve a lot, on the inside. I did a post recently discussing this exact topic and it was rather cathartic because I knew so many people would relate. This grief for the living applies to so many situations.

Perhaps you have a disabled child and you’d do anything to make sure life is not more difficult for them than another child who doesn’t have that disability.

Perhaps your loved one has terminal cancer, with no date when that person will be taken from you but you watch them daily wondering how in the world you’ll enjoy life when they’re gone.

Perhaps your loved one has dementia, and when they give you that glazed look straight through you, unaware of their surroundings, you crave for them to just smile at you and recognise who you are.

I grieved in the first few days I had my daughter – I feel horrific writing that but it’s something that took me a long time to accept after realising I was probably suffering from post-natal depression and anxiety. I wanted my Mum there and she couldn’t be, and I’d spent my pregnancy caring for her as she was deteriorating rapidly, I didn’t prepare for how it would hit me with those wonderful post-partum hormones.

My wedding was planned meticulously around Mum’s care needs, and all I wanted was to be able to get pissed on Prosecco with her the night before. Don’t get me wrong, I am so grateful she could be there and we boogied on the dancefloor in the evening, but it isn’t what you think life will be like when you think of your wedding as a young girl.

For me it was difficult growing up as a teenager and coping with the prospect of Huntington’s Disease. I felt guilty saying this in the past but now I reflect back on the emotional issues I had in my teens and early twenties, it is all because I never talked to anyone. I was grieving the whole time. We weren’t allowed to tell people about Mum’s diagnosis, she was so ashamed of it ad the stigma attached, and didn’t want to be treated differently. In retrospect this made it hard to digest because me and my sister were both too proud to talk to each other, and my sister shortly after went to Lancaster University for 3 years.

I’ve always been protective of my Mum, she always seemed delicate to me even before we knew, perhaps intuitively I knew she had a vulnerability? As a teenager I would have my strops, shout at my parents, drink the alcohol they told me to stay away from. The difference for me was every time we did row or have teenage tantrums, I felt tremendous pain after, and I didn’t understand what that was at the time. I would cry but be too stubborn to go and talk to my Mum. I wanted to hug her but couldn’t bring myself to do it. So, I would isolate myself, not talk to my parents and just deal with it. I remember my Mum putting a card in my room (I still have this card), and it said, “I’m always here if you want to talk to me, love you darling Ems”. I’ve lost the opportunity now, what an idiot I was not taking up the offer, but when you’re young you don’t think about the future.

One day, my Mum got an unexpected letter to say that the DVLA had suddenly revoked her driving license. I remember wanting to take away her anguish so badly. I felt like I was just watching this surreal drama happen to my parents and I felt totally helpless, as I expect my parents did too.

When my Mum started to display psychiatric symptoms, I didn’t quite understand the disease fully, nor did my sister as we hadn’t known for long. I was about 15 years old and Kelly was 19 visiting from Uni. Mum had come home from her line dancing and Dad had not washed up the dinner pan. Trivial right? I could hear the argument building, and my Dad trying to calm it, distract her and keep it quiet so we wouldn’t hear. He had obviously recognised a change and knew what was coming. He would always try to sort it without involving us but inevitably we would be at home to hear it anyway. This moment erupted into a barrage of screaming and crying, and me and Kelly ran to the stairs to see Mum punching and screaming at Dad.

A glass flew across the hallway, luckily Dad being a martial artist his reflexes were quick and he moved enough to escape a blow. I just remember staring from upstairs, frozen to the spot and shaking, so terrified of what was happening. Without a thought Kelly bolted downstairs and put herself in front of the door, pushing Mum back onto the stairs and restraining her to physically stop her from leaving the house with the car keys (this wasn’t long after the DVLA letter). Dad was nursing his bleeding head and hand from where a glass tumbler had been launched at him and trying to compose himself as he couldn’t go near Mum without her totally losing it.

In the end Mum managed to get out without the keys and went for a walk in the dark. After a long and worrying wait she came home. Kelly was in her room and didn’t want to talk about it, she was dealing with it in her own way. Dad needed some space and to tidy up the broken glass and pans that had been thrown around the kitchen. And my poor Mum, so clearly terrified by what was happening to her, was curled up in bed clutching a photo of her Mum, sobbing and apologising.

I remember sitting next to her and just hugging her, and it’s probably from that moment that I told myself I’d always look after her. And guess what I had to do in the morning? I had to put my big girl pants on and go to school and carry on like nothing had happened as none of my friends knew at this point.

To go from teenage life to suddenly having to be a carer for a disease that was so unpredictable and so complex, I definitely grew up quicker than my friends. The grief was continuous, every day I would think about how my future would be different without Mum being Mum. When would she change? How long did we have? Will these mood swings ever be in public? On top of that I grieved for my sister, I would have amputated my leg there and then if it meant she didn’t have to have Huntington’s Disease.

Grief can’t be fixed. It’s not something to be cured. It may seem less dominant in your life over time, but it’s still there. Time is a healer for sure but it will wake up occasionally and remind you of that pain. If you have a friend going through this, LISTEN and be there. Don’t wait for them to ask you, they won’t. Offer a coffee, cook a meal, go for a walk. Don’t tell them that it will get better, because it won’t, they’ll just learn to put it in a box. Tell them that no matter how sh** they’re feeling, you’ll be there.

I think it’s also important to say that everyone will deal with grief in their own way. Don’t be fooled my someone who looks happy and coping on the surface, it doesn’t mean they aren’t grieving, they are just better at concealing it. Be patient, be kind, and be available if your friends need you, let them know they have a safe place to talk to you.

Emma x

25 thoughts on “Grief before death”

  1. I can’t type very well as it’s difficult to see through the tears. What a raw, honest and emotional blog. I think a lot of people will find great solace in these words that are so beautifully written. You are all warriors and amaze me every day.

    1. Thank you so much for your honesty. I can relate on so many levels. Watching and caring for those you love battling cancer and losing.
      Living for many years with a partner who has chronic illness, and the effect this has on the whole family.
      Then finding that your father and brother, have Huntington’s Disease,and so finally having an answer to their strange behaviour.
      The realisation that my own children, myself, other members of my family may also have the gene.
      Yes I agree if I let the flood gates open they may not stop!
      We can be each others support through this blog. Thank you again. Be strong! 🤗

  2. Very honest and open Emma. I’ve always said I’ve slowly grieved my husband as bits of him has gone forever and there is a stranger and left with bits of him.

    1. It’s heartbreaking isn’t it and it’s incredible that your love is so strong you learn to love a new person just the same xx

  3. Thanks for sharing. Some days, I feel sad for not slowing down to enjoy my marriage to the fullest. The future is scary as I need to stay employed for the insurance and life becomes more challenging as my husband’s symptoms are more apparent.

    1. Such a massive pressure for you, and that’s the thing you feel trapped. I hope you can find some good friends to support you – I’m in Gloucestershire

    2. Great blog. Watching loved one’s with HD change into people we no longer know is horrific. I am definitely going thro the grieving process. Grieving for the man I married. Well Done Emma for being so honest x

  4. What an amazing and powerful post. Every single word of it hit home, you could have been speaking on my behalf. The grief hits and hits in so many ways. My darling mum had a severe stroke 7 years ago which has left her unable to speak or move. The bit about becoming a mum without your mum by your side, or there but ‘not there’ is something I struggled with so badly. And my lovely dad has just been diagnosed with HD after years of slowly changing. So I truly recognise everything you say.

    Sorry this is long but I just can’t thank you and your family enough for letting the likes of me have a glimpse of your lives. At a time I am feeling lost, you are letting me see that others are walking this awful path too, with so much bravery and I have just felt a bit less alone. So thank you xx

    1. I am so happy reading that this helps you in some way. I’ve never talked to anyone but sharing this I knew it would make someone somewhere feel less alone. I try and think positive about what I’ve gained in life from the grief but some days it is just a bit shitty. I hope you are able to get support with your dad – I have projects coming up and I am aiming big!! I am determined to change how HD patients are looked after xxxx

      1. You have an amazing way with words. Looking forward to hearing more about your projects. Thanks again for your energy and fight xx

  5. Once again an AMAZING post Em. I can’t imagaine how hard it is to think about writing these things… let alone actually writing them down and posting them out there for all to read.

    BUT in sharing that bit of yourself, you will make others feeling the very same way, feel ok about it all.

    Nothing to be embarrassed or shy about. You are grieving a loss that is somewhat still here…. such a cruel thing.

    Well done lovely xxx

    1. Thanks so much for reading it Bex. I hope it helps people… even if it helps one person I’ve won xx

  6. Thank you so much for your honesty I am sure you are helping so many people that are going through anticipated grief.
    My mum was diagnosed with terminal lung cancer and brain Mets in 2017 and I can certainly empathise with you. I was my mum’s main carer and used to sleep at her house 3 nights a week. It was a very lonely time lying in the spare bedroom wondering how long my mum had left. You wonder how you will ever get through the physical and mental exhaustion. Sadly mum lost her fight last July she was so brave and I miss her so much. Sending hugs and thanks again xxx

    1. So sorry to hear what you’ve been through, it must have been horrendous. Thank you so much for reading, you’re AMAZING for what you did for your mum. Xx

  7. Thank you so much Emma for your honesty. I can relate on so many levels. Watching and caring for those you love battling cancer and losing.
    Living for many years with a partner who has chronic illness, and the effect this has on the whole family.
    Then finding that your father and brother, have Huntington’s Disease,and so finally having an answer to their strange behaviour.
    The realisation that my own children, myself, other members of my family may also have the gene.
    Yes I agree if I let the flood gates open they may not stop!
    We can be each others support through this blog. Thank you again. Emma, Be strong darling 🤗

  8. So inspired by your honesty, courage and determination to make a difference. My Nan has dementia and doesn’t recognise any of us anymore. She is locked in her own world and we watch as she grows more fragile and confused. She’s often aggressive as she is scared. She will never know her youngest great grandchildren although her face lights up in their presence as she becomes a toddler with them. Love to all your family and good luck to the cyclists!

    1. Thank you so much for sharing. I think dementia is so over looked because it’s so common. But when it’s your family, it is truly gut wrenching seeing them that frightened or upset. My mum cries a lot with fear and it kills me to see. Keep those memories alive and love going, it may not seem like it but it will be making a big difference. Xxx

  9. Well done mate! This is a brilliant blog, so open and honest. I have so much time for all you and your sister do to raise awareness. You’re doing great! Love ya mate xxx

  10. I lost my Mum just over a week ago after her 17 year battle with cancer. I’ve not been able to articulate my feelings about how I’ve been grieving since way before her death…and then I found this. Seeing it written down and that I’m not alone in my thoughts and feelings is refreshing so I guess I just want to say thank you and what you’re doing is admirable. Sending love xx

    1. Jen I have only just seen this comment I am so sorry. I am so glad that it has resonated with you, it is such a lonely experience. Love to you xx

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