"I can't find the words. I look for them, but I can't find them."

[Idris]

My Mum was for many years head of department at a large secondary school. After my Dad's death she retired to the North-East of England, where she grew up. She had a full and active life here, socialising, a member of local history and reading groups, taking courses with the U3A and walking with the Ramblers.

She was well-read, highly articulate and opinionated - and felt that everyone else was entitled to her opinion. She was never wrong, and told you so, even if you were a friend of her daughter's that she'd just met. She cared little what other people thought, was low on empathy, and could be quite difficult to get on with. We clashed constantly, it felt like nothing I ever did was good enough.

That woman is now trapped inside the hunched, monosyllabic, drooling figure who sits day after day in her chair, imprisoned in her own body. It feels to me like the inability to communicate is the cruellest cut of all the things that PSP robs you of. The title of my post is something she said to me last night, frustrated yet again at her inability to tell me what she's thinking and feeling. I'm beyond angry, I'm just so, so sad and helpless watching my Mum become outwardly less and less herself, knowing that she's still in there, unable to get out.

[kay1]

That is so true, and sad, Franks is in a care home, and has become friends with a gent with Parkinsons, both hearing problems and it breaks me up knowing that they are unable to communicate. I do get the odd surprise when Frank "pulls" a good word out of the air. It must be such hard work trying to find the right words.

PSP is so random.

[SuzieQ]

Hi Idris

My thoughts are with you. Such a feeling of helplessness knowing whatever you do you can't help with speech. My husband's speech has become very shallow and he struggles sometimes to say what he means. It is so frustrating both for the PSP sufferer and the carer. As you say, it is so very sad to see normally articulate people so afflicted by this heinous disease.

Try to stay positive and remember you are not alone. On here we all understand how you are feeling, so share your feelings with us. We really do understand.

Take care.....................SuzieQ x

[denmob]

I think all of us know how u r feeling and my heart goes out to u. I try to hope that being there for our loved ones and sharing their difficulties in some ways helps them. We have to try to be strong for them as much as we r able. Look after yourself. Kind regards.

[Kathy]

Dear Idris,

Your words touched me more deeply than I can say. You say that you felt that nothing you ever did was good enough but I bet your Mum is incredibly proud of you and the person you have become, and would tell you so if she could and knew how you felt.

It's often said that you don't know what you've got til it's gone and that's one of the things that makes me so sad -- all those conversations I wish I'd had, things that I should have said and didn't, things that I shouldn't have said but did.

Just tell your Mum how much you love her - she's "in there" and will understand even if she can't respond.

Take care of yourself and know that we are here and understand what you are going through

Love

Kathy xxx