My dementia diagnosis experience was abhorrent so I became a campaigner

Hello, I have cared for my husband for over 31 years, day and night, through his Aplastic Anaemia at age 27; haematologist was wonderful and saved his life! He then had a brain haemorrhage and epilepsy during the next two years, has had primary progressive multiple sclerosis diagnosed for over 26 years, has had a suspected mini-stroke, went into a coma whilst in hospital and was in intensive care with a nurse 24/7. He’s had MS dementia for around 10 years from the age of 50. The GP, doctors, consultants, nurses etc. have all been amazing and saved his life many times. He has Optic Neuritis, Nystagmus and an indwelling catheter with bladder and bowel problems. He went into respite for a few days last year for only the 4th. time in all these years, with his wheelchair and indoor Zimmer frame, as I have very little sleep caring for him and within a few days with a team of people, he’d had a fall, banged his head and cut it on their radiator and had two massive seizures a few days after the fall with them (hadn’t had a seizure since 1997) and was taken to hospital. After the fall, their frailty clinic only assessed over a telephone call. I was only informed of all this once he was in hospital. The care home respite place didn’t advise me when he had the fall. He was now unable to speak, no mobility in his right side and nil-by-mouth. Gradually, he regained his speech, went onto a soft food diet and despite over three months in hospital with physio, he now has to be transferred with a Sara Stedy. He needs one level living, so can’t come home to our house and is in a care home after being transferred by the hospital. The home want him moved to their dementia floor. He’s only 60 and it is so sad what’s happening to him. I am trying to find solutions to move hundreds of miles to be near family. I have spine, neck and other joint problems. I had kept him safe for over 31 years and yet a team of people over a few days couldn’t do the same, nor call 111.