Hello all - I rarely post and never knew whether I would again - my husband died in January (PSP) and his cremation was last Friday so it has been a gruelling time since Boxing Day when we were able to take him to the beach - such a very rapid deterioration.
We decided to not have PEG feeding and I stated no antibiotics nor trips to A&E. Don had a cold in the run up to Christmas and it knocked him for six (my last post). Two days with him on Christmas Day and Boxing Day with the whole family and our son who is only 18 years old and the last 3 years could not have prepared me for the end with Don.
He was able to remain in his care home in his room/home of the past 14 months surrounded by familiar carers (who really did care and who were great with Don). Don never ever complained the whole way through the cruel disease of PSP and in fact only had one dose of end of life drugs, about 40 minutes before he died. As Don was semi-comatose for a while and unable to communicate at all by hand squeezing the last few days I was then unsure of him being in pain. He totally lost the ability to speak, swallow about one week before he died although this was a key element for a few months prior to that. For about 3 weeks he was running a fever but was unable to successfully take paracetamol to help with the temperature. He was also virtually immobile and bedridden for 2 weeks before he died, which would not have helped in any way.
The cause of death was simply PSP but the Senior Carer who stayed with me through to the end thought Don had a heart attack - most definitely breathing was the main concern although the GP 7 days before death said his chest and abdomen was clear. I stayed with Don and comforted him albeit he probably didn’t know I was there but I understand hearing is the last thing to go - I basically talked him down to let go and reassured him that our son and I were ok and that there would never be any improvements for him and no life as he knew of going forward - he visibly calmed and stopped breathing but of course that could have been due to the end of life drugs helping him to relax.
So the moral of my story is, there is no being ready for the end - all the work and plans you would have put in place over the run up to this point will work for you and all of us know that our thoughts and feelings are with the sufferer .... I can only say dig in and focus and personally I am so pleased that I had the courage to remain firm that Don should remain where he was and not go to A&E nor the Hospice.
One ray of light (if that is possible) was the fact that the London Brain Bank, in conjunction with the communication of the PSP Association, were able to liaise with the undertakers and local hospital to ensure tissue donation was successfully made in time to help with the research into PSP and hopefully one day in the future to find a cure. Don had been a part of the Prospect Study via John Woodside/Prof Morris upon diagnosis July 2015.
All the very best and be brave, very very brave - my heart goes out to all those who will follow in dealing with this awful illness xxxxxx
Peace at Christmas.
My darling Husband is free of the illness now
My Dad is now at peace
My heart is heavy. My guy is resting in peace.
He is resting in peace.
