My mother in law has Parkinson's Plus, she was diagnosed about 18-24 months ago and has gone from 2 carers a day, to 4 and was admitted to hospital 2 weeks ago with a bedsore, water infection and swallowing difficulties. The Doctor says it's stage 1 (of the end) and she's on an end-of-life ward. I'd welcome any information or advice. She can't do anything for herself and sleeps most of the time. My husband is in bits but we live 200 miles away so we're limited in what we can do. We're sort of in limbo waiting for the inevitable. It's awful to see someone go from being vibrant and full of life to this in 2 years. I feel quite useless.
I do not envy you for the predicament is agonising sick with worry I know this as my Father and Mother left us in similar circumstances but we were only 4 to 5 miles away dad died a long agonising death with lungs choked with black muck a ex miner I could not help him and he eventually slept away, a blessing, my Mother had a stroke and lay on the floor all night until my wife discovered her at 10am , it would normally be me that went but parky had me beat and my wife had to organise para medics Ambulance poor Mam only lasted a week and all she said to me was " not good son not good",I know you will be plagued by guilt, but you must live your lives as normal as possible your Mum in Law would be hurt if she knew that you were going through hell she loves you and you her and that bond will never be broken until you meet again , the Doctor has informed you of her soon to be passing and as she is sleeping all day I would say its probably sooner than you think, but if you are at home when of the sad day arrives dont jump in your car and rocket up to see her , she will be in a chapel of rest where you can see her at peace but speeding will only put your lives at risk
and remember your lives must go on, kindest regards in your sadness FED4
Really sorry to hear of the difficulties you are facing, it must be really hard for you and your husband. On a personal level, I remember a similar situation with me and my partner so I can understand where you're coming from. Do you have good communication with the people in charge of her care? That's so important.
We do have a section on our website that talks about end of life planning and care, have you read it? https://www.parkinsons.org.uk/information-and-support/preparing-end-life
You might find the guide useful.