We went to see Mum's consultant today and her 'query diagnosis' has been upped to a definite diagnosis of PSP.
Part of me is relieved to have clarity, but we spent a long time discussing basically how she wants her life to end. I'm hoping this will allow her to take some control and feel a bit more empowered, but also... it's big stuff.
I think we, like so many here, are going to be spending a lot of effort trying to make Christmas as wonderful as possible for her. I don't think it will be her last, but will probably be the last one where she can still eat turkey, and see her Christmas presents.
Anyway, thanks to everyone in this group - I read posts though I don't reply much as I don't have that much to offer - I'm guessing that will change as we continue to progress through this journey together.
Thanks x
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elcasmar
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Very hard conversations but necessary ones as communication gets more difficult you will now be clearer as to wishes. It must be even worse to have to second guess someone's Wishes . Tough job done now as you say moving forward to make the very best of times ahead. Creating new memories - hope there will be lots of lovely ones
Hi elcasmar. So sorry to hear about your mum. Its good to get important decisions made early. Its also important to do all the things with her that you would have done in the future because the future is now here so make your memories while your mum is able.
Don't know where you live but find out where all your agencies are and how to contact them, and if you have a hospice nearby, pop in and have a chat with them too. No harm in being prepared.
Whilst I totally understand, that some end of life decisions have to be made, please concentrate on making your Mums life as fulfilling as possible. She could have quite a few useful years left, don't waste them on wondering where she wants to die. In most PSP sufferers, the mental capacity stay until the end. The body and the brain must be fully worked, to keep everything as strong as possible. So yes, get those forms signed, then get on with living.
Christmas, make it and all the future ones the best you can. My husband died on the 28th December last year, but we still managed some sort of celebration and he got pleasure from it. In fact, despite the obvious devastation, it was probably the most special Christmas I have ever spent. It was full of love, which after all, that's what it's meant to be!
So sorry you got this diagnosis. No one ever should. Good though that you are having the tough conversations now so you know her wishes for later. Definitely make Thanksgiving and Christmas very special for her. Never know when the last one will be. Hopefully not this one. This will be the first for us without dad. Never thought last year would have been his last. Although I am grateful he no longer suffers. Hope you find time to relax and enjoy your family during the holidays. Hugs and prayers
Sorry to hear your Mum has been diagnosed with PSP but it is good to be able to put a name to all the symptoms and begin to understand the disease. We did discuss his wishes and he has made an Advanced Care Plan which I am please about as I can no longer understand much of what he says and he seems to have signs of dementia ( could be meds) I no longer have to worry about what he wants at he end of life. We are having close family here for Christmas and I'm not too sure how I feel about it as he can't sit with us at he table and join in with any of the celebrations. Last year he didn't join the the table but sat nearby and tried his best to join in, this year I'm not sure how he will cope as he is quite confused and on full, puréed meals and not able to speak to be understood. Enjoy Christmas with your Mum and push the boat out to gave a great time with her.
I agree, it is so much better to have a definite diagnoses. I’m doing the same to focus on having a special Christmas as my husband seems to be going on to the next Stage of some areas. I get so much help from this site.
Thanks for the comments everyone. I totally agree that part of planning the next however long is planning for her to have as much fun as possible. Sadly, because of the way she is (and always has been), she finds it easier to talk about things like how she wants to die than what she wants to do for fun. She's very 'Oh don't worry about me, I'll be fine'. But we;re trying to look up things we think she might enjoy.
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Cracking up and need some help!
End of a Journey
Miss you mum xxxx
Diagnosis received yesterday. 
Just diagnosed
