Coffee and cake

“Coffee and cake. Where is my coffee and cake” – words spoken by my father-in-law Ray in a repetitive cycle during the final months of his life. He died a week ago in a care home, after a few years of declining health with co-existing illnesses; bowel cancer and Alzheimer’s disease. We realised that his wife Vera had been hiding the extent of his cognitive and physical deterioration when she sadly died somewhat suddenly a year ago. Ray was confused, he kept asking for her, and at her wake (we didn’t take him to the burial) we told him every time he asked for her that she was in hospital, but he knew something wasn’t right. They had been married for over 50 years. It was hard but at the same time he would not have coped with the truth.

Ray was incredibly active and fiercely independent – somewhat impatient, he liked things his way – and he loved his solitary daily walks, the serenity and expansiveness of outdoors. Family-orientated, entertaining (he would have said hilariously funny), and caring, I looked forward to his strong handshake and smile every time we turned up – for coffee and cake.

As the dementia took hold, his demeanour worsened, he became more aggressive and intolerant or otherwise said very little, looking smaller and smaller, and subdued in his chair. It was difficult to hold a conversation with him and to be honest I avoided it, feeling uncomfortable and anxious about what to say. He wanted to go out all the time, but we were worried about his safety. These are difficult decisions to make, balancing quality of life, preserving his independence and pride, and risk. He had a routine of going to the local shop where they knew him to pick up a paper, biscuits, and milk. We kept this going for as long as we could.

In his final stages, we took him for drives where he could see “for miles and miles” and although he had some awareness of where we were going, and who with, his conversation was limited to “coffee and cake” and “this is lovely here, absolutely gorgeous”. He would say this over and over, and we would agree and say we were just on our way to get coffee and cake. It was tiring, and distressing, but we knew these few moments were, for him, the best we could give him.

Eventually he refused liquids and food. Whenever he got back to the care home, he would shout and bang his walking stick, cursing us: “I want to go home, take me home. This is not my home”. Leaving him there was gut-wrenching but we had no choice, independent living even with full-time carers was no longer possible. He died peacefully and, we believe, without pain.

Alzheimer’s disease affects everyone. In 2020 an estimated 55 million people were living with dementia* and based on current trends this could double by 2040. Statistics aside, the impact on families is multifarious – many people talk about grieving the loss of their loved one while they are alive, helplessly watching the person they know slowly disappear, and then grieving the loss of their loved one again when they die. We each have our own experience, our own stories, but there is a shared understanding of the devastation caused by Alzheimer’s.

Collectively we are all holding out for a cure. If caught early, breakthrough research has led to disease-modifying therapies to slow down progression. This early diagnosis is critical to quality of life, longevity, and most importantly, it gives the person with dementia and their families more quality time.

Our new expert-led program focuses on the current and emerging role of neuroimaging, highlighting novel PET biomarkers and tracers to help in the early and accurate detection of Alzheimer’s. As techniques around amyloid and tau are increasingly applied in clinical settings, this program is specifically designed for nuclear medicine and radiology physicians, where the challenging nature of interpretation is addressed, supported by expert discussion and practical guidance on how to advance diagnostic accuracy for a better future.

We are preparing for Ray’s funeral, gathering photos, sharing memories. A life-long Newcastle United fan, we will dress in black and white, as we celebrate his life all together. He will be greatly missed.

—

– https://neuroimaging-alzheimers-disease-ime.springermedicine.com/

* https://www.alzint.org/about/dementia-facts-figures/dementia-statistics/