Hi Everyone, I have just lost my husband to PSP on the 23rd October this year.
He had this disease for 4 1/2 years. The last year he could not speak, choked on food and drinks, he had a peg fitted, he could not walk and his muscles started to seize up, he then could not see very well or do anythinf for himself,
in fact my darling kept his sense of humor up until the last few weeks of his life as that is how we have always lived and I was adament that although this evil disease took away everything else from him, I had to make sure he had the best quality of life he could have living with it. It was a very quick and peaceful passing and though I feel a massive weight has lifted off my shoulders as I nursed him at home, I feel a massive void in my life as when he was diagnosed at first it was like psp came like a thief in the night, and it dared to finish the job this year.
All you lovely people caring for your loved ones I can only say , love and laugh even if you dont feel like it, and ride the waves whenever they hit you and they hit you hard. Many a time I felt like giving up and running away.
I am at peace now along with my husband as I took over the roll of nurse and carer, but I never let him forget I was his wife, he was at home with his family in his final days and we were able to hold his hand and cuddle him and make him feel safe on his passing and that for me was my job done, but his job was a 100 times worse than mine.
God Bless you all.
Written by
skye07
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hwat a dreadful time u have had with this PSP and i am so glad that your husband retained his senseof humour - v difficult to do and iI and my partner do not laugh nearly enough at ,my misfortunes - instead he sounds angry when i have fallen over but i know he just hates seeing me on the floor for the nth time in the day and it is frustration on his part as well as mien
also he occasionally make s a joke of the smells in the bathroom made by em but only v occasionally at least they are in the right place most of the time
but i difgress] and i just wanted to say to you that your darling husband is now at peace fm thsi PSP and you must be proud of the fact that you have had him at home with you until he passed
lol JIll
hugs and xxxx to you and your family a t this sad time for you all
Hi Skye, I am sorry you have lost your darling husband but am pleased you are at peace and it must be a comfort to know you did your very best for him until the end. That is all we can do isn't it. My husband is 67 and has been diagnosed for just over 4 years. Apart from the peg, you have described him. He chokes occasionally but is not losing lots of weight yet so they are delaying the peg fitting. We see the funny side of most things and have laughed when it seems inappropriate but it is the way we have both dealt with stress through out our 42 years of marriage. When I reminded my husband how we scattered mum' s ashes during a blizzard and all that happened we both cried with laughter, as we did at the time. We all deal with sadness differently and I am pleased your husband kept his sense of humour even through this horrible illness.
May you remain at peace as you rebuild your life after PSP and may you also find joy again.
Synchronicity as Chris also 67 and has had PSP since July 2010. However, C has decided not to have a PEG though he has now begun to choke on food. Apart from that he is still mobile, just, has not lost weight but his sight is bad so he can no longer read a book. We are both major book lovers so his inability to read means I read much less as I feel guilty sitting with a book when he is in the room. Luckily he can still see the screen and watches DVDs of films and TV series - we don't actually have television but can buy bootleg DVDs very cheaply here. I hear him stirring in bed so shall go get breakfast started.
Synchronicity as Chris also 67 and has had PSP since July 2010. However, C has decided not to have a PEG though he has now begun to choke on food. Apart from that he is still mobile, just, has not lost weight but his sight is bad so he can no longer read a book. We are both major book lovers so his inability to read means I read much less as I feel guilty sitting with a book when he is in the room. Luckily he can still see the screen and watches DVDs of films and TV series - we don't actually have television but can buy bootleg DVDs very cheaply here. I hear him stirring in bed so shall go get breakfast started.
Skye 07...I truly feel your pain and void. I also feel the love for your husband and even though this disease snuck into your life and changed it all around, I know you are stronger because of it. You've done the impossible, grown stronger, and loved, comforted, and helped your dear husband down this road so that he did not have to travel it alone. My prayers are for you to feel the peace and know that what you've done has loved unconditionally and completely. ♡
Sending you lots of love and hugs. This is the last hurdle of this evil disease, getting on with life after the passing of your husband. You managed all the rest, so you will cope this one as well. BUT make sure you do it at your pace, not anybody else's. Grief, like the illness is personal, it will be different for you, but like PSP get as much help as you can.
I really feel for you both....Live the life you have left,may it be long peaceful and loving,you more than did a wonderful job in a terrible situation,my thoughts are with you at this terrible loss but he can now be himself again,life is a test ,YOU BOTH were severely tested and you both delivered beyond words,I know as we are walking in the same type of shoes,Rollie
Hi, Skye, How good to read how you both managed to keep your love alive despite being so tested by P.S.P. We also try to keep the humour which has always been there but its a real struggle at times. How lucky you were to have each other. I hope you can now find peace, knowing you the dreadful journey.
Hi Skye, My mum has just recently passed away on 7th December this year, Her death has devastated myself and my family, this horrible disease has ripped us apart, my mum was finally diagnosed arounf junr this year, test after test, poked and prodded, miss diagnosis, its been really hard and I never felt so helpless.
She was admitted in hospital (Bolton) on 23rd October with a chest infection, she was refered for her peg on the 21st November, although her first antibiotics worked and she was her usual self, but by the time her op date arrived she had contracted another infection, everything was at a slow pace in hospital, they even forget to put her feed (nil by mouth) up one day because they were short of staff,we had other problems with staffing levels.
Anyway the antibiotics did not help her and she just got poorly, we decided that enough was enough, her poor body was too tired and she had suffered enough.
All her treatment was stopped on Wednesday 3rd December, Mum still survived for another 4 days, they were the hardest days of our lives to watch her slowly fade away, something I can not forget.
I felt so relieved when she passed away because finally this woman who only 6 years ago was independant, walking, talking and full of life has now finally gone to sleep, her loing suffering body was finally resting.
I hate this disease rhat took my mum away from me. Its still only recent and so raw but I hope in time I can accepted her death and loss.
I wish you and you family all the strength and courage in the world. xxxx
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