My lovely dad was diagnosed with psp 5 years ago, although we are sure he'd had it for a while before his diagnosis. I've watched him decline steadily over that period of time, and also watched the effect it's had on my mom.
My mom was his sole carer for 4 years, until she was diagnosed with lung cancer. During her chemotherapy she realized she could no longer cope, and with great sadness, and a certain amount of guilt, arranged for dad to go into a nursing home.
For the last 14 months dad adapted to his new home, and I think we found it more difficult to get used to than he did.
Sadly, my mom passed away on Sept 13 th, and 26 days later, my dad passed away, after being rushed into hospital with a severe u.t.i. Resulting in urosepsis.
To say I feel numb is an understatement. My whole world has been turned upside down and there seems such an overwhelming mountain of things to do and arrange.
At the moment my heart is filled with sadness, but I take comfort in the knowledge that they are together again, where they have always been.
I haven't spoken very much on here, but I read posts everyday, so I would like to say thank you to you all for your words of wisdom and for the comfort you perhaps didn't even know you were giving.
I wish you all well, psp sufferers and carers alike, and will pop back from time to time to check up on you all
Kinds regards,
Karen xx
Written by
karentwin
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I KNOW HOW MUST FEEL AS MY DAD DIED LAS TMONTH OF UROSEPSIS AGED 92 ( A GOOD INNINGS AS THEY WOULD SAY IN YORKSHIRE WHERE I AM FROM) IT IS STRANGE BTU SEEING HIM ON JHSI LAST DAY I WOUDL NOT HAVE WANTE DHIM TO SUFFER ANY MORE
MY MOTHER DIED 17 YR S AGO SO HE HAS MANAGED SO WELL ON HIS OWN UNTIL THE LAS TFEW WEEKS OF HIS LIFE
YOU WILL EB MISSING BOTH YR PARENTS NOW AND IT SI STRANGE BEING AN "ORPHAN " AS 1 FRIEND PUT IT
Thank you Jill. I'm sorry to hear of your loss too. I hope you are doing ok. Your upbeat approach to life, despite your illness, is a real inspiration.
My thoughts are with you at this double tradegy in your life. To lose one parent is bad enough, but lose the other one so soon after, must be awful. You have the knowledge though, that both are no longer suffering. Your Dad is finally free of this evil disease and your Mum is pain free at last and like you say, they are together again.
Grief is not an easy thing to go through, but it is extremely necessary to take your time. Go at your pace not anyone else's! My father died 12 years ago, the hole is still there, the pain and feeling of loss is still with me, but you learn to live with and get on with life as they would want.
My husband has PSP, I am using all the strength that I possess to look after S. I find a huge comfort in knowing that this part of my personality came from Dad. You have to find the same.
Thank you for your words of comfort. I am so overwhelmed with everything right now, it's hard to focus. I am doing my best to make my parents proud, and to try and think of the blessings they gave me when they were here.
When thinking rationally, I know my dad is in a better place. He had no quality of life and basically gave up after mom died. He was always such a fighter, but I think he just wanted to be with the love of his life.
I wish you only the best, as I know how hard it is caring for a loved one.
Hello karentwin, I'm very new on here, just want to say, my thoughts are with you too, it must be so unbelievably hard for you, stay as strong as you can xxx
Hi I'm so sorry for you loss I lost my dad on the 6th Oct 2014 he was 74 yrs we only found out in may 2014 that he had this horrible disease it was so hard to watch him going down hill everyday I don't always write on this site but I do read all the comments and I also find a lot of comfort from what people say I am truly sorry for your loss of both your parents and my thoughts and love are with you and your family xx
Thank you for your kind words and I am so sorry for your loss too. Psp is such a cruel disease and I have watched it take a little piece of my dad each day for the last 5 years. I know he is at peace now and pain free, but that still doesn't take our pain away. Losing both parents in such a short time is absolutely devastating.
I'm sending you a big hug and hope you are taking care of yourself as you grieve. Xx
Karen, So sorry for your major loss of both parents. However, as you say they are together again and at peace. Having just lost my dear wife in May this year I can't imagine the grief at losing both parents in a short time. Stay strong and set a great example for your siblings, children, and grandchildren. They will be watching to see how you handle this loss. Hugs your way!! Jimbo
Thanks Jimbo I am trying to make them proud and to stay strong for my own kids and my little granddaughter. My dad's funeral is next Friday, so perhaps I can begin the grieving process then. Hope you're doing ok after your sad loss too. Take care x
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