PSP has taken my mum away from me.

[Tiabaron]

My mum has just recently passed away on 7th December this year, Her death has devastated myself and my family, this horrible disease has ripped us apart, my mum was finally diagnosed arounf june this year, test after test, poked and prodded, miss diagnosis, its been really hard and I never felt so helpless.

She was admitted in hospital (Bolton) on 23rd October with a chest infection, she was refered for her peg on the 21st November, although her first antibiotics worked and she was her usual self, but by the time her op date arrived she had contracted another infection, I only wished they could have done her peg when she was well, but as usual hopitals have alot of protocols to follow, everything was at a slow pace in hospital, It had taken 2 days before the SALT saw her and then another 3 days before they fed her through an NG. They even forget to put her feed (nil by mouth) up one day because they were short of staff, sometimes when her fluids were finish there was along wait for another because they needed a doctor to write a precription up, we had other problems with staffing levels.

Anyway the antibiotics did not help her and she just got poorly, we decided that enough was enough, her poor body was too tired and she had suffered enough.

All her treatment (antibiotics, insulin and fluids was stopped on Wednesday 3rd December, Mum still survived for another 4 days, they were the hardest days of our lives to watch someone who was the heart of your family slowly fade away, something I can not forget.

I felt so relieved when she passed away because finally this woman who only 6 years ago was independant, walking, talking and full of life has now finally gone to sleep, her poor suffering body was finally resting.

I hate this disease that took my mum away from me, My heart is broken and I feel lost without her.

Its still only recent and so raw but I hope in time I can accepted her death and loss.

Tia

[zjillian]

Dear Tia, I am so so very sorry for your loss..It is a horror to see your strong parent slowly die..I witnessed my father-in-law die to PSP, my father die from Parkinson's Disease, and now my husband is dying with PSP like his father did. There are no words..the loss is real and will always hurt maybe not with the same frightening intensity but will never be a memory without a longing sadness and some pain; she was too important to you. All of my love to you and the memory of your mother. She must have been such a special person to inspired in you such love.

Jill

Costa Rica

[jillannf6 in reply to zjillian]

I AGRE E JILL FM CR

BTU WHEN M DA DDIED IN SEPTEMBER )AGED 92)I KNEW HE HAD OT GO AS HES QUALITY OF LIFE WOUDL HAV EBEEN ZERO HAD HE SURVIVEED - HE WOULD NOT HAVE WANTED 24 HR NURSING CARE AND WOULD NOT EVEN CALL THE STAFF WHEN HE NEEDED THEME IN TH ECARE HOME HE WAS IN ,

SO IT WAS A RELEASE INA WAY BUT STRANGELY I FEEL NTO THE LOSS BTU THE FACT THAT HE IS NWO AT PEACE

AND I AGUESS I DO NTO NEED 2 GRIEVE FOR THAT

LOL JILL PSP PERSON IN THE UK,

JHUGS AND XXX TO YOU ALL

[Heady]

My love and thoughts go out to you at this time.

Lots of love

Heady

[loppylugs5]

so so sorry for your loss,and the inadequate help from the professionals.I hope soon your lively Mum will fill your memories and the sick lady will fade a little.Lots of love to you. P

[jillannf6]

hi tia

i am so sorry that your mum had such a bad time in hospital with this PSP- no word scan say what you are feeling / grieving 4 her so i shall just say what a wonderful relationship you must have had with her and try and remember back to 6 yrs ago when she was still ok

think gin of you and your family at thsi v sad time 4 you all]

lol jIl

hugs and xxxxx to you all

[Georgepa]

So sad for you but your mum isn't suffering anymore and perhaps you can take some comfort from that. It is a horrible protracted illness and I am sure you wouldn't have wanted to prolong it for her - and now she is at peace.All sympathy to you and your family .Georgepa

[Mwick175]

So sorry for your loss. Be comforted that she is now at peace. Cherish your memories.

[Pippalina]

So sorry to hear of your loss.My father died from motor neurone disease so know how you are feeling at this time, time does heal and these diseases are painful for the family as well.Remember the happy healthy times with your mum.

[GillJan]

Tia, so sorry for your loss and in such an upsetting way. As others have said your mum is now at peace and I hope that in time your fond memories of happier times (it sounds as if there are a great deal of them) with her will block out what you had to witness during her final days.

[shasha]

HOW TRAGIC THAT YOU AND YOUR MUM HAD TO ENDURE THIS HIDEOUS DISEASE WITH SUCH A POOR SHOWING BY THE MEDICAL PROFESSION ... MY HEART GOES OUT TO YOU ALL AND MAYBE ONCE YOU ARE OVER THE INITIAL HEARTACHE THEN YOU CAN REMEMBER THE HAPPY TIIMES

[LynnO]

Tia,

So very sorry for your loss. Losing a parent is never easy and watching them slip away before your eyes is very painful. Like others have said she is at peace now and whole again. Remember the happy memories and leave the last few years behind. My prayers are with you and your family.

Lynn

[nannygoon]

So sorry for your loss it is a very cruel disease. I am watching my sister fading away she is 81 totally dependant in a nursing home now can't do anything and just six years ago she was independent and enjoying life. Hold on to that memory of your mum being independent and I send my

Love and prayers to you..

[jessybx19]

My heart is with you. I hope time can heal this aweful pain.

Jess

[Cinderella80]

I'm so sorry for your loss. I hope you keep strong. My mum has PSP and I have been looking after her for over two years. I know how devastating it is to see your loved one who was so full of life just slowly get weaker in every aspect. Only the people who go through this truly understand. Lots of love and hugs to you.