The Dementia Underground — Marion Edmunds

More than a few days ago, I left home with a suitcase, my laptop and my phone to head to Johannesburg for a week. I found it very difficult to leave, I was so busy writing out lists and schedules and meal-plans that I couldn’t really concentrate on what I should I take with me. My packing was erratic. I was deeply concerned about how my home team would cope looking after Dad without me, and they had to constantly reassure me that between them, they would get by just fine.

The day before my departure, while getting Dad dressed, I told him I was going away. He was curious.

“A week?”

“A week,”I answered. “Will you cope without me?”

His eyes twinkled with merriment.

“No,” he said, but I knew he was teasing me.

As I left the room, he called to me: “Enjoy yourself.” So I knew he had understood.

The feeling of dread increased as the time for departure drew nearer. It was familiar. I remember feeling the same when my children were very small, and I left for the unavoidable work trip. To abandon such vulnerability seemed wicked. Now, it’s my father, mentally hobbled by dementia, whom I fret about. And how will my family manage the chores without me? Will they remember to give him his pills? Will they check on him before bed? Will he know that I am coming back?

One of the most useful books on my shelf

The comparison between mothering small children and caring for the elderly doesn’t stop there. Motherhood felt overwhelming when my first child arrived and we turned to manuals for advice. I was presented with a parenting guide written by the controversial Scottish nanny Gina Ford. She believed in strict routines and not so much in intuition and spontaneity. There was some value in her advice but her unequivocal approach to feeding and sleeping sometimes sucked the joy out of supper and bedtime. We finally abandoned it, but the best book she wrote remains a useful companion for me as I care for my father. It’s her book on weaning, and the final chapters have recipes for simple meals for toddlers. I have dug out the book again, tattered and stained, to cook suppers from it for my father. He doesn’t like too much food on his plate or anything awkward to eat, so leek and potato soup or lentil lamb hotpot in reasonable quantities are ideal meals.

So what about manuals to care for people with old age and dementia? I was luckily given a wonderfully comprehensive book by my sister, called How to Care for Ageing Parents, which is comparable to the tome, What to Expect when you are Expecting, that is so useful to pregnant mothers. The Ageing Parents guide has concise and useful information, from managing finances to understanding age-specific ailments to writing out a living will.

While sitting in my guesthouse in Johannesburg, I went to Take-a-lot.com to see what other guides were available in South Africa for grown-up children engaged in parent-wrangling. To my surprise, I counted almost 50 manual-type guides, including this title: The Overwhelmed Woman’s Guide to caring for Aged Parents And this one: Hurricane Lucy, A caregiver’s guide: Weathering the Storm of Caring for your Ageing Parent. In between those were many other titles seeming to offer sage advice on how to do the caring, and how to survive it. What is clear is that many many people have been here before and want to share the experience.

Away from home I had a little more headspace and time to reflect about how sharing the care-giving experience is becoming a life-hack in itself. Caring for my Dad has often seemed a lonely job. But on the other hand, I think about how my father’s age-related disabilities have become a significant point of connection between me and a widening circle of friends and acquaintances. I am of the sandwich generation, managing vulnerable parents and children simultaneously, and so naturally many others in my cohort are in the same situation. More and more casual conversations turn to this dilemma of escorting parents cheerfully through the golden years, while keeping a grip on one’s own life and purpose.

Writing this column has helped me to connect further. Many people have contacted me with their own stories of the struggles of caring specifically with parents with dementia - colleagues I haven’t seen for years, old school friends, and distant family, made all the more distant by the South African diaspora. They have stories: parents wandering off, parents being aggressive, parents refusing to eat, parents forgetting how to be the parent they once were, parents who are dependent and vulnerable and need their children’s help. When they tell their stories, they feel acknowledged in their role as care-giver.

I see in this The Dementia Underground - an unseen network of people who have been affected by this life-altering disease and are dealing with it, not exclusively at home, but quietly in the backyards of busy lives. It is not apparent in the day-to-day fabric of my society, but that difficulty and anxiety is ever present in millions of homes and hearts. It’s made all the more difficult by the fact that ageing is transient, so there is no definable end to it, although an end, ironically, is anticipated.

In South Africa, tackling dementia is not a national priority, nor is accurate data available. We have a youthful population and there are so many other social issues clamouring for oxygen, as well as the immediate burden of the COVID pandemic to shoulder. The Not-for-Profit organisation Alzheimer’s South Africa carries statistics on its website (as well as useful information and the contact numbers of a network of regional volunteers.) From there I learn that 2.2 million people in South Africa are living with some form of dementia. The global picture is in itself frightening. The World Health Organisation says that 55 million people are living with dementia worldwide, and 60 per cent of those are in low and middle-income countries where social services will struggle to manage the burden. And that number is projected to rise as those populations age - to 139 million in 2050. So in South Africa, as in many African countries, it’s up to individuals, care homes and not-for-profit organisations like Alzheimer’s SA to make the best of it, quietly and without much publicity or funding. My experience is that when one care-giver meets another, it’s as if two soldiers have found each other in a civilian crowd, and they can swap war stories that nobody else quite understands.

So thank you to everybody who has read my columns, to those who have contacted me, and who have helped me practically and emotionally with life-hacks and love, who now form part of my Dementia Underground. It’s a global alliance. It’s ubuntu. And it’s been profoundly helpful.

Here are links to the study I quoted: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5676974/

And the WHO fact sheet:https://www.who.int/news-room/fact-sheets/detail/dementia

P.S While I was writing this, an email popped into my inbox called Support for Caregivers. Livewell, a business specialising in dementia residential care, is advertising Dementia support groups which resume post-pandemic in November in Somerset West. https://livewell.care/