I've just spent 5 days with my Dad helping him care for my Mum recently diagnosed with PSP. I have witnessed first hand the definition of true love and I am humbled.
I take my hat off to all of you caring full time, this is the cruelest disease and to have to cope with it on a day to day basis is just huge.
My Mums cognitive behaviour has really deteriorated in the last few months and some of the things she's felt the "need" to tell me have left me heartbroken even though I know it's the illness speaking.
To go away and leave my Dad to deal with this feels so selfish but I know I have to so that I can come back and help again but it's so hard.
I think you're amazing people & value your support - thank you!!! x
Written by
Katet68
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Been reading my daughter's comments - yes I have managed to get onto the site and am just working out how to use it and I have to say that in all honesty I am not always as patient as I should be - the dementia aspect is so difficult to deal with.
Thank you...actually it really helps to read your note. It is difficult for friends to understand and they keep saying " Oh Bob looks so Good!" I think they believe that I am making a big deal out of something so easy. Thank you, and good luck with your mother. Encourage your father to write to all of us online. It really helps.
I totally hear what you are saying - a friend came round to see Mum at the weekend and then text me afterwards to say how "well" she looked! I wanted to scream at them (but didn't).
I will try to get Dad on here, we did talk about it last night - everyones so supportive.
Hi I have just arrived prompted by my daughter- so am just working out how this all works .
Yes I do find it all very difficult - my wife has only been recently diagnosed but I think it has been gradually coming on for two or three years and is now accelerating especially the cognitive impairment and dementia -mobility too is now almost non existent and yes people do say how well she looks - if only they knew the half of it .
Welcome to this online group. It has been a wonderful community of people from all over the world patients and caregivers. They have helped me with their wisdom, tips, understand and humor.
My husband of 46 years, Bob has PSP with dementia and Parkinson like features. Sort of the worst of all three but no medicine, and a continual downhill course. He is now 72 and I am 68, although that is pretty hard to believe in itself. I moved us all (my 99 year old father with Parkinson's, my husband then 65, 3 dogs and 2 cats to Costa RIca, from Massaschusetts, USA. We could no longer afford to live in the US and Costa Rica has been so good to us with Socialized medicine and loving care helpers.
This online group is a safe place to ask any questions about anything, to vent frustration, sadness, humor, grief, rage, and all the craziness in- between because we are all in the same boat. ..granted a somewhat rickety, sometimes sinking, sometimes lost in the fog, but always well-maned or woman-ed boat.
I'm glad that your daughter suggested this as a resource. and once again welcome.
I HAVE PSP (DXD NEARLY 4 YRS AGO NOW) bUT am, STILL HERE UPRIGHT MOST OF THE TIEM APART FORM WHEN I AM FLAT ON MHY FACE OR BACK HAVIGN FALLEN OVER YET AGAIN
BUT I AM "GOOD" AS THEY SAY - WE HAVE TO BE DONT WE?
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