It’s all happened so fast. This time last year we still thought Paul had suffered a stroke as only his dominant left hand was affected, and then the symptoms gradually spread to his other hand, and strokes don’t do that.
We saw the neurologist in May of this year who diagnosed it as being CBD, and Paul had only recently been diagnosed with stage 2 prostate cancer as well a few weeks before.
We had a Carer for his personal care so as to help lighten the load for me as I have Fibromyalgia but I was able to assist him with daily living tasks that he could no longer do for himself.
He was still walking at the beginning of August but needed a wheelchair after his legs becoming affected and experiencing a couple of falls. By the end of August he could no longer tolerate sitting in the wheelchair or the recliner chair as he would slump to either one side or the other and could no longer sit up on his own anymore.
He began having problems with eating, swallowing and talking, and also constipation and urine retention and had his first hospital visit with a chest infection due to aspiration at the end of September. He was then given puréed food and thickened drinks, and had a PEG tube fitted at the beginning of October.
He plateaued for about a month before his second hospital visit in early November with pneumonia and sepsis, which he managed to recover from a few days before our wedding. We’d been together for almost twenty years and had always wanted to get married and with Paul’s deterioration we decided to do it at long last.
We had a lovely magical day and were married home with family and close friends around us. A week after he’d been discharged from hospital he was back in again with another chest infection for hospital visit number three.
After coming home for just over a week, he had hospital visit number four with urine retention. His abdomen was so hard and distended that he looked nine months pregnant. He was then fitted with a catheter and recovered well, but then a week after coming home again he was back for hospital visit number five, this time with pneumonia, a urine infection and sepsis as well. At first it looked as if he was going to recover, but then it became apparent that the antibiotics were no longer having an effect and we were told to prepare for the end of life, and less than twelve hours later he passed away peacefully with family and friends around him.
I still can’t believe he’s gone, but take comfort knowing that he’s now in a much better place with no more pain. After his fourth hospital visit he was sleeping more and more and was finding it increasingly difficult to make himself understood and was trapped inside his body with no way of communicating. So sad to see him like that.
I hope one day that more will be understood about this horrible disease and what causes it so that a cure can be found. Paul was a lovely kind and fun man and will be greatly missed as he brought so much joy into each of our lives. Rest in peace my darling.
Written by
CLP71
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I am sorry for your loss. You have had such a rollercoaster ride together.
So pleased you did all those things that were important, like getting married! Now you have Paul's name for keeps.
You must feel bereft and at a loose end. When you have done all that needs to be done, and got through Christmas 'festive season', give yourself time to just sit and relax and savor the good bits of your life together. After such a traumatic few months, it may be difficult to relax. Take good care of yourself. You have time to do that now.
Make a good life for yourself, but take things as they come. There is no hurry.
What a wonderful memory you must have from having the chance to marry at such a special moment. I hope that helps you in the coming months and years and gives you great comfort and peace
As you say PSP is such a roller coaster. Takes its toll on not just the person with the illness but hugely impacts on those closest to them as well
Sounds like Paul’s journey held many highs as well as lows and I truly believe that even when those with PSP loose the ability to communicate they are still ‘in there’
Paul’s journey is complete. Now your role is changed. You now rest. Heal. Grieve. Laugh. Cry. Reminisce. Do just whatever is right for you.
I feel the ultimate act of love is to let those we love slip away when the time is right. As much as we would go be anything for just one more day our hearts know it’s time
If tears are diamonds we are all rich beyond our wildest dreams. Let them fall. Each one is a memory to capture and hold in your heart
Be strong. Paul’s free at peace. So so special a life. Lived to the full
Take care. With hugs
Caz x
I'm so sorry for your loss.
Thinking of you at this sad time.
Be good to yourself (from a fellow Fibro sufferer).
Im soo sorry for your loss. Please keep coming on this site . It will help you sooo much. And the people are wonderful. And we get you. We know what your going through. Hugs and prayers for you and family. Know that Paul is finally in peace. And happy and hansome and free..
What a lovely photo, that smile! may your memories sustain you in this difficult time. Bless you and your families during these next days. May the holidays keep you close and in prayer.
I am filled with sadness as I read your post about Paul...his smile is beautiful!! I hope you can take comfort in the 20 years before Paul's struggle...you truly fulfilled your vows "for better or for worse"...sending you warm hugs ....
I am so sorry for your sad loss of Paul but he is now free from all suffering this disease brings with it. Paul is now at peace in Heaven and will be always watching over you so take heed from this and look after yourself as this is what he would want for you . Treasure the happy memories you have of Paul and that no-one can take away from you. Learn from your experience and eventually live life to the full as we all only get one chance in life. I myself have this evil disease but take one day at a time and let tomorrow take care of itself. Sending you much lovexx
I’ve been trying to reply to the news of paul’s passing. You worded your story so well that I can picture the wedding and unfortunately all of the hospital trips too. I bet you could write a beautiful love story. I would get in line to have you sign it on your book tour. But for now just rest, or stay busy. Cry, or laugh like a crazy person. It’s your time to heal and from what I understand there is no right way, it just is.
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Hi there, Just letting you all know that this terrible disease has claimed another fighter. My husband Richard passed away last Wednesday. 
My wonderful husband passed
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