Have not written for a while. Mum has had PSP for 8 years now but only diagnosed last year!!! Six weeks ago she went into respite care for a week to give me a little break and because she had needed five lots of drops in her eyes for ulcers on the cornea (make sure you keep your loved ones eyes lubricated with Visotears!) There were other medications she needed also so we thought proper nursingcare would be good. Wrong! Within 72hrs she was slumped over a chair and rambling. She had a water infection and was delirious and it really wasn't noticed by the staff! I got her out quickly and called her GP who gave her antibiotics. She picked up for 3 days at home and then one night the demetia started again big time so I called in the Paramedics who found her heart racing.
I went with her to the hosp armed with my PSP folder as I knew I would be repeating myself over and over again. 12hrs later I was taken over by an horrendous virous similar to Gastroenteritus. A phone call from the hospital told me the whole ward was closed to the Norva (?) Virus. I could not see Mum for 7 days!! I was distraught. Katie Rigg PSP Nurse was such a help to me over this time. I was sure she was sick of hearing from me.
When I eventually got back to the hospital I saw a big change in Mum. She had lost weight, couldn't eat or drink properly, couldn't walk and was still confused.In my absence my family of two brothers and sisters-in-law had a conflab and decided it would be best for Mum to go into a nursing home for her sake and mine as I couldn't cope! This same family who visit Mum once every 3 or 6 months whist I have been there every day for the last 8 years and main carer.
Mum had cried and asked not to go back into care.
The consultant told me what I already knew...Mum was declining fast. It could be days or weeks! The U.T.I had thrown her completly downhill.
So here I am today ready to do whatever I can. We fetch her home today and I will move in to her warden aided flat and stay there for the duration whether it is days or weeks. I know she will pick up a bit and then decline. I am not a nurse, I am scared, really really scared but somewhere I will get the strengh to cope and lavish the love and attention on her. I have a great team of carers at hand and friends who have volunteered to sit so I can get home for an hour. But this I must do.I can never repay her for all she has done for me in her life. All I can do and will do is show her that love she has given me.
Yes my family will be without me for a while but I will return to them...Mum won't. xx