The following story is written by Robert’s daughter, Heather.
My dad, Robert Rodger, passed away with sporadic CJD on 1st May 2022, two weeks before his 72nd birthday. He was a dedicated husband of nearly 50 years to my mum Linda, a great dad to me and my big brother, David, and loved being grandad to my children (Phoebe, Oliver, and Isobel) and David’s (Caleb and Jacob). Dad worked in the tax office, though he always disliked asking for money from people, and had many good friends from work and beyond who came to his funeral.
Dad loved to read.
His favourite books were the Thomas Covenant Chronicles by Stephen Donaldson–he re-read them over and over. In March 2022, he lost one of them and I bought him a new copy so he would have the complete set. Later that month, I phoned him. His speech was slurred and he thought there were strangers in the house, what he was experiencing sounded very real and very scary. The GP suggested it was likely a reaction to some new medication, but a few days later I knew there was a serious problem. I called dad to tell him about my daughter’s recent autism diagnosis and he was silent with no idea what I was saying. I didn’t know what was happening, I felt like I was losing my dad.
When I came off the phone, I just cried my heart out.
Two days later Dad was admitted to the hospital for a CT scan, they suspected a brain tumour. I decided to travel to be with him and my mum. I was in shock when I got there. I had seen him only a couple of weeks earlier but he had changed so much in that time. He was unable to walk without help and had lost so much weight. Mentally, he seemed to come and go, without full awareness of where he was or how he was becoming. When the scan came back clear I was convinced it was dementia, though at that time the doctors were still considering medication side effects.
I went back home to see my children but returned to be with mum and dad within days. The staff at the hospital were concerned about Dad’s rapid deterioration and had ordered an MRI scan and lumbar puncture. Though I’d only been away a few short days, dad was now unable to walk at all or feed himself. It was so sad to see him like that but I spent that time feeding him, cuddling him, and reading the book I had bought him to complete his Thomas Covenant Chronicles collection.
He always read to me when I was a child, I remember him reading The Hobbit to me when I was about 10 years old.
On a day in mid-April, we were told that dad had sporadic CJD. I had no idea what it was but dad was already having difficulty swallowing–I knew he wouldn’t have long left.
As I left to be with my twins on their birthday I took my jumper off and gave it to my dad. I told him I was with him, that he had a part of me there.
Later, the staff informed me that he held the jumper tight the whole time after I left.
Dad was in the hospice unit by the time I returned, he had lost even more weight and could barely talk. lucky to be there for a brief moment of clarity the day before he left us–he was dad again and we shared a beautiful moment that I will always be grateful for. The next day he was breathing differently and was unable to communicate–we knew it would not be long. I was about to leave when he squeezed my hand. He knew I was there. I told him to sleep well and that I loved him, always. My mum, his beloved wife, was by his side when he passed away on 1st May, just under a month after his diagnosis.
My dad always said he wanted to go quickly, he always hated the idea of losing himself and deteriorating slowly.
One thing I know is that he didn’t linger too long and I’m grateful that we got to say goodbye.
As well as reading, Dad was a keen walker and gardener who loved the outdoors. Since he passed, my kids and I have planted a tree in our garden in his honour, releasing balloons up to heaven with messages for him. I hope to raise CJD awareness, and that this article can bring some comfort to others who have gone through the same experience. We are not alone.
The CJD Support Network would like to thank Heather for sharing her family’s story. If you would like to share your experiences in our newsletter, please do get in touch. If you would benefit from further support, we are here for you at [email protected] and on: 0800 774 7317