I would just like to thank everyone who answered my question anout the dietitians trying to push for mum to be peg fed. It breaks my heart writing this but mum passed away on Saturday evening with my brother and myself by her side. Im so pleased that mum is not suffering anymore with this awful illness but im broken. We will be having her funeral at the same time and day as mums brother who sadley passed away with the same awful PSP. They say its not hereditary but seems strange both mum and her brother dieing of the same illness and at the same time. Sorry for the long post.
Re my post looking for help: I would just... - PSP Association
Re my post looking for help
Sorry for your sad loss. Look after yourselfx
sorry for your loss Beckany. It’s an awful disease. You’re incredibly strong to manage all this. Thank you for sharing with us.
Dear Beckany, You do not have to apologise for a long post. You just need to write what you have to write as that's what this forum is about. I am so sorry to hear that your Mum has now passed but pleased that you and your brother were with her and that you stuck by your instincts with reference to the 'peg'. The funeral of Nigel my husband who died of CBD was on the same day as my 1st husband had died and I said to a friend that at least I could get the two sad days packed into one and she said that I should look at it differently and try to treat it as a day of thanksgiving for two such lovely men. I am sure that your Mum and uncle were lovely people too so I hope you can cope alright with the funeral. After Nigel died I wrote a poem about him and this disease. I attach a bit of it for you, alterred to 'she' in the hope that it will help. Big hug AliBee
She is no longer hampered by that horrible disease.
Her voice and speech are better so she can raise her voice in glee.
She can sing and laugh with angels as her spirit is now free.
You cannot help but miss her and feel sad that she has gone,
but you can’t be sad she’s been released
from her body which went wrong.
I do believe in heaven
and life beyond the grave,
So when you feel that gentle breeze,
or the wind upon your face,
she’ll be giving you a great big hug,
or a gentle soft embrace.
So sorry for your loss. Give yourself time to regroup. It takes awhile !! You’ve been through a very difficult time. Your mum is at peace now!!As well as her brother! What a coincidence!!
So sorry for the loss of your mum and your uncle. Such a very hard time for everyone in your family. Big hugs, Purrlie
So sorry for your loss. Keep being strong. Love and hugs to you.
Beckany, I am so sorry for your loss. You have been a phenomenal carer for your Mom. Know that she is in a better place and that you have done all the right things for her.
Keep on keeping on and being strong.
Warm Regards,
Dick
I am so very sorry for the loss of both your and her brother from this devastating illness. How utterly awful for all involved.
Sending so much love, light and healing your way.
At least they are both at peace and suffering no more. Take care and be very kind to yourself
Such sad news about your mum and uncle Beckany and sorry for your loss. Take care and start to remember who they were.
So sorry for your loss but thank goodness you didn't put your Mum through the ordeal of having a PEG at such a late stage. I am sure she derived great comfort from having you & your brother with her at the end, as I am sure you will in the future. Be kind to yourself now. xxx