I went onto the forum as I do most days as I needed to feel 'not alone'. What an amazing number or responses to WesternGirl and what support and love poured out because of her post. My darling husband has CBD and I too get very frustrated with him but today I remember a poem he wrote many years ago when his first wife was dying of Ovarian cancer aged 47 and I just wanted to share it with you all. He cannot even write now. I wonder if he is scared like he knew she was? I hope not as he does not seem to realise the significance of what is happening to him and only tends to get cross with me when I disagree with his opinion of the time of day/night or how much he should eat or drink. Love to you all. AliBee
Angry
Why am I so angry?
It isn’t bloody fair.
She’s half her life in front of her
And now it isn’t there.
She’s been told she’s three more months to live,
Perhaps a year or two
But how are you supposed to live
When death tags onto you?
Why am I so angry?
I want to bloody shout.
I’m screwed up by frustration
And I need to let it out.
But she doesn’t need me ranting
Because she’s scared like me
But its bloody hard to keep quite calm
When death sits at your knee.
Why am I so angry?
Why won’t she bloody leave?
Then I can get on living,
And I can start to grieve.
It galls to watch her suffer,
So bitter and in pain
At least she’ll have the peace she needs
When death takes her away.
Why am I so angry?
My love gets in the way
I can’t bear for her to leave me
But it hurts to see her stay.
But it’s anger keeps her spark alight.
It’s anger helps me through
Those dark and lonely moments
When death looms large in view.
Nigel Birket
June 1999
Written by
AliBee1
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Wow! You have a treasure in your husband! That poem shows that he had gone through what you are going through, and that he understands deep down just how you feel.
My husband with CBD did not seem to understand either, and I shouted at him for all the reasons in Nigel's poem. It voices emotions for ALL terminal illness, short or long term, however long and we don't know how long!
How very eloquent and so true... Your Nigel really shines through, Ali Such passon and insight! And so good to see the glimpses of the person as they truly were ( and I liked to think 'still are - just clouded and hobbled by the rogue Tai protein'.
My husband has been so pitiful lately....we were watching TV and he looked at me and said “I will be so happy to be in heaven and be able to think straight”. I think there are times like this that he truly is thinking straight....however it is getting harder for me to get a full night sleep because he has started getting up around 3:00 am, we are in separate rooms, he comes to my door and knocks yelling my name and saying “I fell”......he has learned that if he says he has fallen I jump up and run, I am at his side immediately! Last night he had not fallen he was just trying to get my attention....I am going to get a double dead bolt on his door because I can not risk him falling on the stairs....
Hiya. I am in the same room as Nigel still and he wakes me every night but I think he would get horribly distressed if I locked him in. Could you not get a gate for the stairs instead? If he is able to walk to your door and say that he has fallen maybe you should rationalise that he has not fallen and hurt himself and is upright so make your response slower and maybe he will stop it. Nigel too has moments when he seems to be really 'with it' but then says something which totally negates it. I would hate to be inside his mind. From one broken sleeper to another big hugs. AliBee xx
I agree with the distress at have a locked door, not sure what I will do, if I put him downstairs he will come up....it’s crazy....
And YES, he gives me hope with some comments and then 30 minutes later he says something completely off the wall. He gets NOTHING out of life....he sits in a chair and watches TV or goes to the porch and looks across the fields, I arrange lunch for him with various friends often, he has zero enteraction with the friends....what really troubles me is that I am having trouble remembering him normal....weird....I really struggle with that. I feel so lost at times, I know I lost him a long time ago but I was totally unaware, but now I see him slipping away. I look across the room I am sitting in, what I call my “Book Nook” because all my books are in here, I see pictures of us in Greece, Turkey, Israel Europe, summer vacations etc. etc.....the man in those pictures is gone, completely gone....
My mother died just short of being 90, she was still beautiful, had been traveling only months before she passed, she was sharp and engaging, making friends at her extended care place which was where she was only for less than a month. The day she died she had gone with my sister and gotten a manicure and pedicure, made some new friends at her facility.....on and on....I can easily think back to that day talking to her on the phone and she was so mentally normal.....I realize now how refreshing it was to HAVE her right to the end....but not so with brain issue people....we loose them so completely long before they physically leave us, I am crying as I write this.....
What a poignant poem.So true.And thanks to all who replied to grey January.It is such a help to get the understanding from you all.I feel better able to cope for now.
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Such passon and insight! And so good to see the glimpses of the person as they truly were ( and I liked to think 'still are - just clouded and hobbled by the rogue Tai protein'.
What health care teams are responsible for PSP sufferers?
17th April - What am awesome day...
Quick response needed if possible. 
What do you all think is happening
