My mum has a very unpleasant condition called PSP and she’s in the very last stages now, with probably only a few months to go. The last year has been incredibly hard, watching her fade away, become in increasing amounts of pain and less and less able to communicate. My Dad is her carer and it’s been awful to see the amount of pain he is in and the pressure he is under.

Even though we have known this is the ultimate end for several years now, now its mere weeks away I feel utterly terrible. Incredibly depressed, tired and I desperately don’t want her to die.

I know that I should be enjoying the last moments we have together, but it’s so hard as a lot of the time she isn’t aware I’m there or she’s crying, or she can’t understand what I’m saying. It’s no life that any human should have to live, so part of me thinks death will free her, but I selfishly don’t want her to go.

I already miss her so much, the person she used to be before this illness stole so much of who she was, but I know I’m just going to miss her more and I’m dreading it. We’ve long past the point where she could have come to my wedding, but it kills me she won’t see me get married, if I have children she’ll never meet them and they’ll never know her. She’s never been able to visit the lovely flat my boyfriend and I bought last year.

It’s just so hard going to work every day with all this stuff in the background. I feel like I’m falling apart, but I can’t be because I have to just keep going. It’s so exhausting and hurts so much. I’m just so tired.

My boyfriend is wonderful and I have friends who’ll listen if I want to talk (no siblings) but I worry I’ll bore them if I start talking, it’ll just be repeating the same stuff over and over, and I’m not sure that really helps anything, it certainly doesn’t change it.

Theoretically, I know what I’m feeling is normal but I also feel somewhat off step to the world around me at the moment, even though realistically lots of people I encounter will also be dealing with griefs and losses I’m unaware of.

Sorry for the very long and rambly post! I just don’t know what to do, or if there’s anything I can do. I just feel stuck in a long dark tunnel, I can’t get out of but just have to keep trudging through.

Thanks for reading.


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Hello Sarah,
I am sorry to read what you are experiencing with your mother’s condition. The feelings you are going through are understandable and painful. Sadly we are never prepared for the death of someone we love or want to keep in our lives.

If you want to spend time with your mother just sit with her, hold her hand , be in the room with her when she sleeps. You may find this helps you with future memories.

Family and friends can be very supportive because they will understand what you are going through. However have you considered discussing how you are feeling with your GP, this may be the best thing to do at this time.

Hope this helps you Sarah. Viccy

Hi Sarah,

I am new to the site and just noticed your post, my mum died 4 weeks ago. Im 29 and am feeling like how you describe, my mum will never see me marry or have children. which she was so desperate to see.

My mum died suddenly, she was 60 and had pneumonia. I just wish she had of told us how poorly she was I could of got help sooner.

I was wondering how you were feeling?

Sarah x

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