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
Written by
SharonandRichard
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So sorry for the loss of your husband. It’s good for you to write your thoughts and share as it won’t be an easy time for you. Take comfort in that he is no longer suffering. Sending hugs 💜💜
So sorry for your sad loss. I think it must help in some way to write it down and talk about it. Take comfort where you can in the fact that he is no longer suffering.xx
So sorry for you. As you said at least he got his last wishes and was home with you. It is such a horrible disease so at least his suffering is over. Look after yourself.
Sharon, sending the biggest cyber hugs. My thoughts are with you and your family, PSP is so devastating. It is good to talk and to write your thoughts down. Please take care of yourself, keep on keeping on.Anne
My heart goes out to you Sharon. This disease, as you said, is one indignity after another. But you were able to meet Richard’s last wishes to die at home. Try to find solace in that as you work through this time.
So very for your loss, Sharon xx 🙏🙏🙏. As a side note, I would now be asking whatever authority that turned you down for hospice, if death meets the criteria.
Sharon, my deepest condolences at this difficult time. Richard is finally free from this disease and is now at peace. May you find comfort in that. Rest easy. ❤️
So very sorry for your loss, Sharon. For those of us who are left behind it is a consolation to know our loved one is no longer struggling with this horrid disease. I hope you will find some comfort knowing your dear Richard is at peace. A big hug, Purrlie.
It is a dreadful disease and sadly the best you could hope for was that he died at home and with you at his side. I am not far on the road behind you and I guess I can only admit I do not want the last stage to go on too long. But it is heartbreaking to lose the one you love even though you know it is coming. Sending love and hugs....
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Missing my hubby
A few more grey hairs!
New to PSP and to this site-not so new to PSP symptoms
