Living with Alzheimer's - a love story

by Robin Thomson (m. 1962)

What is the most important thing we can do for the person living with Alzheimer’s, or other kinds of dementia? It’s easy to feel powerless or uncomfortable. ‘I don’t visit my grandmother now,’ a young friend told me. ‘I don’t know how to relate to her or help her.’

 

When my wife, Shoko, was diagnosed with Alzheimer's in 2012, we had no clue what lay ahead. Later, when the disease began to bite, we learned the hard way, as Shoko’s personality changed and she lost her capacity in many areas of life. Despite this her affection remained constant. She died of heart failure in 2018.

 

Around 850,000 people are living with dementia in the UK, with 700,000 families providing an estimated £11.6bn worth of unpaid care. Their number is projected to increase by 60% by 2030.[i] What resources are available to support this army of caregivers? They do it gladly but find it draining and sometimes overwhelming, as we did. As the debate over reforming social care continues, the questions are more urgent.

 

We were fortunate to receive a lot of help, but navigating our way through health and social care systems that were not ‘joined up’ was demanding. So the support of family, friends and community groups is vital.

 

Robin Thomson (m. 1962) has written about his experience with his wife, Shoko, as well as the bigger picture of the health and social care systems, in Living with Alzheimer's – a Love Story, published by Instant Apostle, January 2020.