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PSP Association
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Thank goodness you are all here!

Been up since 2a.m. Nothing unusual about that, my nighttimes are not night anymore. I wake up thinking about Mum. She has had PSP for about 8 years

I want to blog but I can't as the tears just keep falling. I want to answer questions and share but I can't as I am afraid. I am having to leave my work as I can't cope anymore. I have two sons still at home and I am at Mums more and more. I hide my deppression from everyone. I lie when anyone asks if I am ok. I am a Mum, a wife, a person who had a professional career that was my vocation and love. I am a daughter whose Mum is disapearing before my eyes. A Mum who was a Head of Domestic science and a Needlework Teacher who cooked for hundreds and would whip up a dress in a couple of hours..who did the Telegragh crossword in 15 minutes and do hundreds of other things. Now she sits and can't do anything and I put everything in place for her. Last night I said 'Mum bet you dread me coming don't you as I seem to be constantly telling you off' she said 'No my love I don't know what I would do without you'

I hate PSP and all that it does to our loved ones. I can't blog about her illness, it hurts too much....I will get stronger myself I think, I am just having a self pity party time. Thank you all for being there for me to read every day and know I am not alone. Thank you PSPA for all the help you have given me.xx

11 Replies

This is so sad to read - dad used to say the same because we did stuff for him and he just always seemed so grateful - sadly the nightmares and sadness do not go after they have gone, I still have nightmares about how much s*** dad went through and sometimes it really scares me how he must have been feeling, but just be there for her - they dont go away inside xxx


This is very sad to read...you are not alone. If you ever need someone to speak to, we at the PSPA are here for you.


Dear Jan,

We are all here for you. We all know what you are going through. We all have days where we think we can't go on, then we look at our loved ones, imagine what it's like for them, metaphorically pick ourselves up and carry on. Don't be afraid to ask for help, no-one will think badly of you or think you're not coping. We ALL need help.

Could you chat to your GP and tell him how you feel? Maybe you need some anti-depressants?

Please take care of yourself - blog any time you can.


love Kathy xxx


Jan, it's such a horrible position to be in, watching your mum seem to fade away before your eyes. While she can't do what she used to, she still knows what's going on and can appreciate all your help and love.

I'm with Kathy here- you need to look after yourself in this process, and some support from your GP would do no harm at all.

Keep coming here and talking to us- we're all with you

Fiona x


Dear Jan - I have cried reading your comments and know what you are going through, just like all the other people on here. My heart goes out to you and I too wonder what I would do without this site. It is good to get your feelings down on here, but as some others have said above, you MUST look after yourself. You should see your GP and tell him how you are feeling. It is not a sign of weakness to admit you're finding it difficult to cope. Some days are easier than others when we are not trying to cope with a loved one with PSP, so with the added stress and worries that this horrible illness brings with it, it's not surprising we all struggle more some days. We are all in the same boat and it is heartbreaking to see your loved one disappearing in front of your eyes. I made a comment on here a few days ago when I was having a particularly bad day (worse than usual) that I see it as grieving for my hubby while he is still alive. Make the most of the good days, try and stay strong and listen to us all when we say you MUST look after yourself. I hope your "coping mode" returns quickly and you will soon be feeling less sad.

Take care...........we are all here for you.

God Bless.......................SuzieQ xx


For the first time in four years I know that someone knows how things are, this site is a lifeline, thankyou to all Elli x


I feel exactly the same as you. Someone above suggested talking to your GP - I went on anti-depressants a year ago and they've made a huge difference to my ability to cope on a day-to-day basis. So glad you've posted here, please know you're not only helping yourself by doing so, you're helping others to know that they're not alone. *hugs*


I am overwhelmed at the comments that have been left for me. I wrote in the early hours talkinf to no one really. Now I know I am not alone. Thank you from the bottom of my heart for replying. I have seen my GP and I am on anti deprresants. I am leaving work (my passon) and am afraid. I am still crying, but it will stop and I will be 'normal' for when husband & lads come home. Dinner will be prepared and off we will go to Mums with hers.Another day perhaps I can share many funny stories...Mum is liike Andy from Little Britain in the wheelchair.....you turn your back and she is up and off!!! Today though I can't and know one knows except you...I want my Mum and she is no longer there...but as she has always been for me I will be there for her. Thank you all of you, my tears are for you also. Thank you PSPA xxx I an quite a positive person...just lost the plot a bit! xxxx


Hi Jan....we all lose the plot at some time...some more than others but it doesn't make you a bad person it just means you're human!!!! You are definitely not alone....we all need this site at some time or other. Glad you saw your Gp & hope you will soon feel a little better.

Take care & try to keep smiling. Love Hazel B xx


We all do know how low you can get, so take care of yourself first,then you can face all that you need to,a little bit better.It is not easy.Talk to family and friends if you can, a problem shared .....

Love Pinda


Hi Jan,

As others have said we all have very similar experiences and we understand what you are going through. Please feel free to say whatever you need to on this site, we are here for you. Just to echo what others have said, it is important that you take care of yourself as well. You may find the Moodscope website helpful - moodscope.com. It helps you to track your mood and let a trusted person know how you are doing. Please, please take time for yourself on a regular basis. You can't keep giving to your Mum unless you are receiving too.



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