Anticipatory grief

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    Tiny Butterfly


    I’m reaching out because I feel what  I’m currently experiencing is anticipatory grief about my mum. I’m short, my mum suffers with frontal lobe dementia. There is no cure for this. She was officially diagnosed last August, but my brothers and I feel it’s been going on for much much longer. After a long battle of caregiving, she is now in a hospital facility while the hospital finds an appropriate home. She’s 62, very mobile and independent, which makes placing my mum in a home so young, difficult. She phones me up to 30 times a day asking to leave, can I take her out etc… It’s heartbreaking. I’m in work when she phones and it honestly feels like my heart is breaking into a million pieces.

    I’ve  been reading a lot recently about grief and the grief cycle. I was given a information sheet from my brother that for family members and care givers, the grief cycle can be triggered when a parent, partner… etc is diagnosed with this disease. For me right now anticipatory grief is what I’m suffering with. I worry constantly about it being hereditary… is mum ok… is she eating… is she showering… I wish she would stop phoning… which is then met by guilt, anger, pain. All those emotions. I take her out of the hospital for a few hours each Tuesday after work and I cry EVERY time I drop her back off. I’m up, down, left and right. This morning I woke up and I felt so drained and exhausted. I have nothing left in me to give right now, but life… work… and responsibilities don’t care about that.

    I guess I’m sharing this to make myself feel better, but to also hear from anyone else who has had any similar experiences. I’m doing my best right now not to isolate myself from everything, but on days like today it’s really hard not to.


    Tiny Butterfly you break my heart. I very much relate when my mother passed away… I felt both grief and relief, sadness and shame…

    Everything you wrote about how your feeling is understandable. We love and we hope and we fear and all these thoughts arise, some that leave us feeling ashamed perhaps that we can’t be as selfless as we imagine we are “supposed” to be. I don’t think there’s one way where “supposed” to be or feel.


    Hi Tiny Butterfly,

    I completely relate. My dad has Alzheimer’s and has been on a steady decline since his early 60s (He’s 75 now). It’s like watching a slow and painful death, I know.  The good news (I know right, how can there be good news) is that for me, going through it with him and watching the father I knew slowly disappear made me appreciate that seed of him that is always there, you know? Do you ever experience that with your mom? Over many years, gradually,  I let go of him as I remembered him all my life. I was forced to adapt to the person he is. And now, I really, truly, treasure those moments I have with him where he’s my dad again – they come like a flash, then they’re gone. And I’m ok with it, well not totally but I’ve accepted it I feel. My dad makes me appreciate life, every moment, because honestly one second he’s right there with me, and the next second he’s gone.

    The whole thing is a process. I understand the anticipatory grief; maybe you’re worried about your health? But you can’t predict the future. We have to suffer in our lives to understand the pain of loss, and appreciate people when they are here. My dad has taught me that. You can only live right now. And you must!  Parents dying is a fact of life. Everyone experiences it–so please reach out whenever you want.

    Also you’re doing an amazing job caring for your mother. Just remember that. So many people in this life have no one to care for them at all, and just by being there, loving her, is enough. Trust that she knows that, and is grateful for you .

    Take it easy, tiny butterfly. Do something you enjoy today. Send you good vibes:)





    Dear Tiny Butterfly,

    I can’t say I have similar experience with you. It must’ve been very difficult for you to witness your mother’s suffering – and your own.

    Allow me to just share one thing: this too will pass. Eventually, this situation will get resolved because change is the only thing that’s permanent in life. When my Dad passed away, I was devastated. The first few months were excruciating, the hole he’d left seemed to be beyond repair. But soon enough, I caught myself noting the blue sky, the blooming flowers. I caught myself smiling and laughing whenever my friends did something stupid. Before I knew it, I had moved on. Before I knew it, I no longer felt so sad about my Dad’s death. Time just keeps flowing, and we are all swept along with it.

    So may you find strength and courage to face this difficult times. You are brave, you are strong, and I believe that whatever happens, you will always be alright.

    Sending much love to you, Tiny Butterfly.


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