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.
Pneumonia in both lungs -- how bad is it going to be
After effects of pneumonia
Dad on palliative care at home
