Sadly I lost my husband Richard to PSP two weeks ago. I'll miss him dreadfully, but the man he was, not the man he'd become , as he could no longer talk, was falling frequently so needed 24/7 care and was taking all medication and food through a PEG, which he decided to have fitted about 2 years ago,
He'd recently been in hospital after falling and hurting his head. They diagnosed a small bleed on the brain. After a week he was ready to be discharged but then had pneumonia. I bought him home a week later.
That last week was so awful, I didn't realise it would be his last. After a couple of days I realised that I wouldn't be able to go through this on my own. The Social Prescrber at our doctors surgery was marvellous; she arranged for a care assessment, but that was in 4 weeks time, so the hospice tried to get it sooner by saying he had lass than 3 months to live ( although at the time we thought this would be longer). This was refused as he didn't meet the criteria.
On his last night I helped him to bed and after a few minutes heard a bump. He'd tried to get up and was halfway out of bed. I tried to lift him back but he was too heavy, we ended up on the floor and I rang my son to help me. When he arrived unbeknown to me Richard had stopped breathing, we tried CPR until the ambulance arrived, but it was too late he'd already gone.
Not sure why I'm writing this, I think it's just helping getting it down on paper. We're now waiting for a post mortem as they're classing it as an unexplained death as he died at home; despite our GP putting PSP and secondary bleed on the brain ( I know there was the official words for this, but they escape me at the moment) as a cause of death. It just seems a final indignity if this awful disease.
My only consolation is that he's free from PSP, I just didn't realise that in his case it would come so soon, and I'm grateful for his sake that he died at home and I was with him. Towards the end he wrote saying he didn't want to die in hospital and was scared that I wouldn't be with him.
Thank you for reading this and my heart goes out to all those who are suffering and caring.
My love to you all.
Sharon