New Anti-Alzheimer's drug brings some hope to millions of people living with Dementia

There was important breaking news this week – late Wednesday I read a headline online at The Guardian in the UK:  Success of experimental Alzheimer’s drug hailed as historic moment. The drug is called Lecanemab and showed some decline in the build-up of toxic plaques in the brain, and a slowing of memory decline, in a study of 1800 patients with early stage Alzheimer’s.

The exact figures are best left to the Guardian, so here is the link: https://www.theguardian.com/society/2022/sep/28/alzheimers-disease-progression-slowed-by-new-drug-lecanemab

 It made top stories around the world the following day with the online news giants like Reuters and Bloomberg picking it up, as well as locally, there were articles in News24 and Business Day.  One of the companies behind the drug, Eisai, is a significant pharmaceutical company in Japan, with a staff of 10 000, of which 1500 staffers work in research. It is listed on the Tokyo Stock Exchange. Its partner in this project is an American multinational Biotech company, Biogen. The shares of both companies have shot up since the announcement. Investors are excited about what it might mean for sales. Alzheimers affects about 55 million people worldwide. There are projections that the number would reach 139 million by 2050. That’s a huge potential market for a successful drug.

The Guardian quoted Dr Susan Kolhaas, the director of research at Alzheimers Research UK. “This is a historic moment for dementia research, as this is the first phase 3 trial of an Alzheimer’s drug in a generation to successfully slow cognitive decline,” she said.

 And then another statement from the article struck me, from Rob Howard, a professor of old age psychiatry at University College London (UCL). He is quoted as saying: “This is an unambiguously statistically positive result and represents something of an historic moment when we see the first convincing modification of Alzheimer’s disease. God knows, we’ve waited long enough for this.”

It was the “God knows, we’ve waited long enough for this,” which stayed with me. It spoke of such desperation in the fight to manage and curtail a disease which has ensnared millions of elderly people in a state of disabled dependence, and burdened families and communities in their efforts to care for them.  Huge resources have been poured into finding a drug to reverse, or slow Alzheimer’s and dementia and yet until now, there has been no proved pharmaceutical cure for the disease. To a non-scientist like myself, it is baffling, given the availability of variably efficient medication and therapies for many of the other headline diseases of our time: cancer, high blood pressure, diabetes and heart disease. To be fair to the pharmaceutical industry, it has not been through lack of trying. Until now, Alzheimer’s research has been littered with expensive failures.

There are many unanswered questions about the efficacy of this particular drug, Lecanemab, nonetheless.  Eisai is reportedly extending trials to build on the news-worthy results. There are challenges in administering it.  It is taken through infusions twice weekly, and health services would need huge logistical resources to administer it to the millions of people who may benefit from it, and there is an expectation of high demand. So if the National Health Service (NHS) in the UK is anticipating a difficult discussion around how to roll out the anti-Alzheimer’s drug if and when it is licensed, I wonder how the South African government’s health services might view the development.  

This breakthrough also raises the issue to me of funding for Dementia. Finding the pharmaceutical answer to Alzheimer’s and thus dementia is a multi-million dollar quest. The only answer at the moment for people with living with Dementia is compassionate care. How much state funding is available to pay for care-givers and the communities who support a person living with dementia? In South Africa, it’s nothing at all.

Interestingly, the Biogen website acknowledges this unfunded burden in a generic, global sense, by carrying stories of people living with dementia on its website, and by quoting the World Health Organization on care.  It states that in 2019, caregivers spent on average five hours a day providing support for daily living to the person they were caring for with dementia; 70 per cent of that care is provided by women.

Understanding that this expression of compassion is useful marketing for a pharmaceutical company, I still found Biogen’s website interesting, with its mix of facts, figures and stories. It’s worth looking at https://www.biogen.com/en_us/alzheimers-puzzle.html I find it reassuring that large global companies are engaged so deeply with a problem, which for me has become personal.

Reuters reports that the partner pharmaceutical companies, Eisai and Biogen, are hoping for commercialisation of the drug in the United States, Europe and Japan by the end of 2023. Responses from scientists around the world have been cautiously optimistic; how South African health care – both state and private — will engage with this breakthrough is not yet known.

South Africa has no dementia policy so the burden of care lies with family members

I was the only journalist to attend an event to mark World Alzheimer’s Day this week at the not-for-profit organization, Ikamva Labantu, in Khayelitsha.  There are many dramatic breaking news stories in South Africa – Eskom’s failure to provide power, Jacob Zuma’s endless court cases, political shenanigans and corruption scandals….The plight of the elderly, particularly those afflicted by dementia, is relegated to the news version of the back-of-beyond. No headlines here.

It was a small gathering, attended by members of Ikamva Labantu’s Seniors Clubs at their Enkululekweni Wellness Centre, as well as some care-givers who wanted to find out more about dementia.  Two of these care-givers shared their personal stories at the meeting. They both spoke in Xhosa, so I relied on short translations to get the jist of their experiences.

Members of the Ikamva Labantu Seniors Club meet on World Alzheimer’s Day at Ikamva Labantu in Khayelitsha, 21 September 2022.

Geraldine Philips spoke about looking after her elderly mother. Acting out her domestic anecdotes and mimicking her mother’s voice in a high falsetto which set the audience giggling, she described how her patient was constantly hungry, demanding all sorts of good food that was often beyond the budget. She spoke about how she was challenged by her mother’s incontinence, and the difficulty of reasoning with her. She also spoke of how her mother had moments of clarity where she thanked her profoundly for how she was caring for her.

South Africa needs to start talking about dementia - it’s personal, it’s painful, it’s important. Vuso Madubela spoke to the group about how she cares for her husband.

Vuso Madubela spoke about looking after her husband who had experienced a severe stroke at 70 years old, and as a result had become confused and sometimes irrationally angry. She said that bathing him had become a complex experience involving the whole family. She described the experience of caring for him as “bitter-sweet” because there was a lot of hilarity in his escapades, but at the same time it was very sad.

I felt I could relate directly to both of their experiences through my long caring campaign for my father. I felt a sense of solidarity on an emotional level. I was there partly as a journalist but partly motivated by my deepening personal interest in dementia in South Africa, and the questions I have about why such a significant disease is being relegated to the sidelines. If I find looking after my father challenging, with all the resources I have at my disposal, how are other people in South Africa coping, particularly those with scant or no means to start with? What I heard at this event was that the overburdened public health sector could not meet this need.

 One of the guests, Professor Marguerite Schneider from the Alan J Flisher Centre for Public Mental Health at the University of Cape Town, presented the results of research done on dementia in South Africa. This was the first time I have heard clear answers to my big picture questions about the national situation.  The research was conducted under the auspices of a larger project called STRIDE, in collaboration with parallel research groups in six other middle-income countries: Brazil, India, Indonesia, Kenya, Jamaica and Mexico. STRIDE is led by the London School of Economics and Political Science, and it stands for Strengthening Responses to Dementia in Developing Countries.

Professor Marguerite Schneider from the Alan J.Flisher Centre for Public Mental Health at the UCT centre, flanked by Lulama Sigasana, Head of the Seniors Programme on the left and Occupational Therapist Siphokazi Sompeta from Ikamva Labantu on her right-hand side.

In an online introduction to the research, the Centre for Public Mental Health, says that by 2050, about 90 million of the 131 million people who are expected to have dementia globally will be living in low-and middle-income countries, like South Africa.

“Provision of care and support for people living with dementia, particularly at later stages of the condition, can be socially and economically very costly. These costs are mostly borne by family members, particularly women and girls, putting their potential for education and/or earnings at risk,” says the website. Here is a link if you would like to read further: http://www.cpmh.org.za/research-2/stride/

“If we look at policies in South Africa, there is no policy on dementia,” said Professor Schneider. “We have policies on child nutrition, we have policies on HIV, we have policies on maternal health, we have policies on mental health, but there’s no policy on dementia. And that makes it very difficult for the government to plan and to budget for services for people who are living with dementia. So the lack of policy makes it difficult to really provide services.”

While there are facilities for the elderly with dementia in the private sector in South Africa, often commanding high prices, the public sector falls woefully short. Professor Schneider said there were only eight residential state facilities across the country that might take in an elderly person with dementia, and even they were not designed specifically for people with dementia. The majority of people living with dementia thus live at home, unsupported and unfunded, dependent on family and friends who may not even fully understand what dementia is, nor how to care for a person affected by it.

Under STRIDE, researchers did a household survey last year on two sites, one near Cape Town and one outside Polokwane, in Limpopo. They visited 408 households where they interviewed an older person over 65 years and a younger person over 18 years old in a household in a bid to evaluate the extent of dementia and the burden on care-givers. What they found was a dementia prevalence of about 14,5 per cent for the sample, and when they crunched the numbers to extract a national estimate, they extrapolated a dementia prevalence of 12,5 per cent for South Africa, which is much higher than the global estimates for Sub-Saharan Africa of two to four per cent. The problem, it seems, is far worse than imagined or forecast.

In many instances, it appears that dementia is not diagnosed within the health sector, while other diseases like hypertension, diabetes, heart trouble and stroke are.

 “Health professionals are not aware of dementia. They think it is just normal ageing. And so they don’t think you can do anything about it, which is a lack of awareness,” said Professor Schneider.

The STRIDE research also took note of the role of the care-givers for the 56 people they had identified as having dementia (of which only one was medically diagnosed) in their survey last year. Over 40 per cent of the people living with dementia had a single carer – and in nearly half of all cases the care-giver was either a son or a daughter. Sixteen per cent were cared for by a spouse, and the rest by relatives. Most of the care happened within a family network, with between 1-2 carers doing the bulk of the work per person. Most of the carers were women.

The researchers asked the care-givers if they had ever felt they were at risk of possibly abusing or neglecting the elder person in their charge. Just over fifty per cent said they might be.  

 “I think that tells us how difficult it is to be a carer. Especially if you are an unsupported carer, nobody helps you,” said Prof Schneider, reflecting on the survey.   “People with dementia were four times more likely to be at risk of abuse.”

Stigma is also undermining the role of care-givers and impacting on people living with the disease.

 “In white culture, the attitude is about, oh, that person is an empty shell, why should we bother talking to that person. In black culture it might be more around witchcraft. What happens is that stigma stops people from getting out because they are ashamed, and they hide away. People living with dementia are often very lonely because of it, because they are hidden away, they can’t take part in anything and that also makes the dementia worse as well. And carers and families also become very lonely because they cut themselves off from the rest because they don’t want to be seen as having a problem,” said Prof Schneider.

Mncedisi Katswha at the event, wearing a purple ribbon to celebrate World Alzheimer’s Day in Khayelitsha

Mncedisi Katshwa, the deputy chairperson of the Ikamva Labantu Seniors Club, supported the idea of opening a centre to facilitate education about dementia.

“We are supposed to sit together and talk about it so that people can become familiar with it. They must stop saying of somebody who is always talking alone that she is a witch, just because of her age,” he said, reflecting on the presentation.  “This has opened my eyes.”

Professor Schneider saluted the work done by Ikamvu Labantu with the aged, and said she felt it was important to communicate the research STRIDE was doing back to the very people affected by dementia. It is part of a process of engagement with the not-for-profit sector, which is struggling under the burden of the disease, and with government departments. STRIDE is partnered with Alzheimers SA, one of the not-for-profits at the forefront of this engagement.

 “It’s about trying to lobby for some kind of dementia policy, although that is not going to happen that easily, but it’s about looking at how we can look at all existing policies and see how we can ensure that people living with dementia are cared for through those policies,” she said.

A useful celebration involves some singing and dancing and World Alzheimer’s Day was no exception

Ikamvu Labantu is campaigning for an old age home in Khayelitsha, with a daycare facility for the elderly. Through their work, both at the Seniors Clubs and in their aged homecare programmes, they see the need and have appealed to the Western Cape Government.

“In terms of the coverage of the African population, we only have the Gugulethu Old Age home and if it’s full, it’s full. And in most areas, the dementia wards are full as well. We have this long waiting list while seniors are abused in their homes. We feel like Khayelitsha deserves its own old age home. But they say no, they don’t have funding for it,” said Lulama Sigasana, the head of Ikamva Labantu’s Senior Citizen’s Programme.

The Dementia Detective

Yesterday evening I found my father in a cheerful frame of mind when I went up to his flat to prepare him for bed. We had had a good weekend – autumn sunshine had bathed the landscape with golden light; red, brown and yellow leaves were floating down in a gentle, hot wind. As evening fell, and I walked up the brick stairs, a large full moon rose into the darkening sky in front of me. My mother-in-law had come to stay, and my father had recognized her from previous visits.

It was good to have Oma come to visit, I said as I helped him with his pyjamas. I find myself planting these questions in our conversation, partly to fill in the empty sound spaces as we go about our mutual chores, partly to jog him into talking, as he says very little during any given day, just a handful of phrases between dawn and dusk. But also, if I am honest with myself, I ask him questions to test his ability to respond, measuring the logic of his answers and the strength of his recall. Did he remember that his counterpart from the other side of the family had been here, they had greeted each other and had eaten cake on the stoep in the hazy autumn-coloured sunshine a few hours ago? Or has he already lost the imprint of that experience?

 He repeated her name with a quizzical look. And then memory must have returned, and it broke over his face like a light.

 “Yes, that was nice,” he said, with a clear understanding of what we were sharing.

 “She’s turning 80 this year,” I said by way of furthering the conversation. He drew up his mouth in a sympathetic grimace. And then looking at me sideways as he pulled on a pyjama leg, and with just a little twinkle in an otherwise deadpan face, said:
 “I’ve done that.”

 We had a giggle together. At 87, he can still employ wit. I felt relief; he is in some way with us in mind and spirit, as well as body.

 Yet, so often his Dementia plunges him into a deep fog, where memories seem to loom shapeless when called for, with only a suggestion of what they might have once been or what they might now mean. Or the memories and intentions are there, but his ability to articulate and describe them has atrophied and he starts a sentence only to sputter to a silence before the big reveal, leaving us both in anticipation, and he, holding up his hands in frustration. This inconsistency is challenging – how to calibrate his care to include the on-moments and the off-moments, unpredictable as they are. And then how to work out the rate of his deterioration. So for years now, every time I bring him tea in the morning, serve him a meal, change his clothes, bid him good night, I am looking for clear signs that his synapses are still pinging, so I can place his behaviour on the spectrum, and measure his abilities, to prepare for the next step.

The Dementia Detective and in-house sniffer dog aka River

I have become a Dementia detective, using our everyday interactions to put puzzle pieces into a shifting landscape. But it is a picture that forms and reforms all the time, like an infinite video time-lapse, itself elusive, never settling into a final landscape.

The more I burrow into the detective metaphor, the more truth I find in it. The other great sleuthing challenge is trying to predict what he wants to say, or what he fears, from the few words he has said, which seldom add up to a whole sentence or thought. I have to draw on all our shared references and memories to attempt to frame his words in a context, and then run with a hunch. I stand in for the tired, collapsed part of his brain, whether he is reliving an experience from his youth or something that happened this week. I intuitively use his personal history to help him out of his mental logjams – this reference possibly to my mother, that trip abroad, this job at the university, that cousin or a brother.

This week he was constantly referring to “a fellow” who was coming to visit, and I could not work out who this might be. He was anxious about “this fellow” and walked up and down, checking the gate. I circled around a number of scenarios, attempting to pin an identity on the invisible person. Then we realized that he was referring to the new afternoon carer, with whom he had not bonded and about whose visit he was becoming more and more anxious. Once the penny dropped, much of his unexplained recent behaviour fell into place, and we decided to discontinue that carer, and seek out somebody else. But this revelation came after much puzzling, and few clues.

Looking for tracks in the sand…constantly on the trail of some thought process that does not fully reveal its origins or its destination

And now with all this first-hand experience, I find myself becoming a Dementia Detective in other ways too – in finding out more about the prevalence and nature of the disease which is referenced so widely, but of which I initially understood so little.

A social worker referred me to a seven-week online course provided by experts ten thousand kilometres away from here. It’s called Understanding Dementia, and it is presented by the Wicking Dementia Research and Education Centre at the University of Tasmania, an island off Australia. It’s a free online distance learning course called a MOOC, an acronym which stands for a Massive Open Online Course. That means that anybody can sign up from anywhere in the world to learn and interact digitally, and there is no criteria for entry, beyond connectivity. Since 2013, the Understanding Dementia course has received 330 000 enrolments from all around the world.

Study notes on Dementia for the seven-week MOOC - see link to do the course

I now am one of those. The course has given me understanding far beyond the medical consultations we have had about my Dad’s health. The MOOC walks a student through Dementia – a scientific explanation of what happens on a cellular level in the brain of a person suffering from dementia, the nature of the diseases that cause dementia, and perspectives of how care for afflicted people is evolving, including the need for palliative care. The next course will be held in July this year – here is a link to anybody who feels they might need the information provided: https://mooc.utas.edu.au/landing/udwp.

I would recommend it. Beyond the information, I found it soothing because it linked me to a giant global classroom of people who are on the same quest for information and comprehension. The teachers were educated and compassionate, showing a remarkable degree of academic humility.

A brief google has shown me that this is not the only online course available. In order to encourage enrolment, many of these courses quote the dramatic and stark statistics of how many millions of people suffer from dementia globally. Many remind us that dementia is currently the seventh leading cause of death among all diseases, and there is currently no cure.

These figures, though useful, relegate me and my father to a single digit in a vast, growing statistic. Fresh out of COVID, I find them overwhelming, as I do find much of the information on the web about dementia. So it is not surprising that while googling all this bad news, I found myself snooping in a different space, and signing up to a free online course provided by Yale University on the Science of Happiness. If cognitive time is short and unpredictable, then carpe diem!

The Last Laska

When my father came to live with us he brought with him truckloads of antique furniture, much of it ball and claw, about two thousand books, many of them academic, and a medium-sized, golden-haired rescue dog called Laska. They had got on very well before Dementia undermined his lifestyle, and she was loyal and faithful, and she was part of the package.

Laska loved women and children but otherwise was on her guard

We had got used to including her in our frequent care visits, for my father’s decline impacted on her too. He developed a habit of buying different brands of dog food pellets and opening the many bags simultaneously to vary her meal. But he forgot to close them so in the kitchen I would find numerous bags of pellets open and full of ants and Laska hungry, with no food to eat. That was easy to remedy but it was an early sign that my father was not coping, and an early sign of Dementia that I missed. Laska also took to chewing sticks and sometimes they got stuck between her teeth. At one point we failed to notice the serious damage to her mouth, and only when she refused to eat did we take her to to the vet. He extracted from her gum a twig the thickness of my little finger; it left a messy, septic hole. Laska bore the investigation and extraction stoically, not flinching as the vet did his magic. My father had not noticed her injury, and we were missing the telltale signs that he could not cope on his own anymore.

Laska at the vet - I always marvelled at her stoicism and how calm and focused the vet was when we visited the Stellenbosch Animal Hospital.

Laska was the last in a long line of Laskas in our family, the first arriving before I was born. The name was taken from Leo Tolstoy’s novel, Anna Karenina. The fictional Laska was an aging setter dog and her master, Levin, one of the main characters of the novel. Laska accompanies Levin on hunts on his large rural estates. She emerges at a time in the narrative when Levin is withdrawing from city society to draw from the simpler truths of rural life. Maybe our last Laska arrived from the Animal Welfare Society at a similar time in my father’s life.

My father’s micro-estate benefitted hugely from the last Laska’s presence. She sat with him while he had his drink in the evening. She was aggressive at the gate, her hair lifting from her body in anger should an unknown person arrive. She was another presence when he was alone. She was obedient and lived in the garden and on the stoep without complaint because she was an “outside dog”. Sometimes in winter my father would allow her in to lie by the fire but that was a rare concession because he came from the old and unsentimental tradition of “werfhonde”.

The White Rabbit brought magic to the garden

Laska and my father were at their happiest in these years of his retirement. He was always around and she had a great deal of freedom and some excitement. At one point a tenant abandoned his white rabbit in the garden after he moved on. It was the kind of white rabbit a magician might pull out of a silk top hat. His ears were floppy and his body was covered with the whitest, downiest fur. He chose to live feral under the spreading branches of the African Magnolia tree which grew in a tangle close to the ground. Here he had safety and shelter and could nibble on the pink buds without disturbance. My father would sit near the tree on an old bench for his drink, and on quiet evenings the rabbit would creep out and sit near him, twitching his nose, in congenial silence. However if Laska spied the white rabbit, she would give chase and as the garden is landscaped on a slope, they would leap from terrace to terrace in an amazing race, rabbit clearing flights of steps and brick walls first, Laska extending her legs as she followed like a flying squirrel, and then the rabbit dashing back to the safety of his canopy, no doubt his heart racing fit to burst and Laska taking her place at my father’s knee. My father would look on calmly, maybe amused, sipping his goblet of white wine, while he watched the shadows lengthen, and the sun slipped behind his back and illuminated the mountain in his view in rose-pink hues.

So there was no thought that Laska should be given back to the rescue centre and while we were renovating my father’s home she came to live with us all in a red-brick rented house. We put her kennel by the front door. For the first week, she refused to sleep there but would settle at the back of the house and sleep at my father’s window. At this point, my father was very disoriented as a result of the move, and we took over Laska’s food and care. By the end of the week, rain had set in and I went out to look for Laska hoping to get her back in the kennel. Instead we found her in a little wet heap at the outside door of our bedroom - she had switched her loyalties and adopted us. From then on, my father was very much in her background. And she became an “inside dog” at night, breaking all the rules of my childhood, and delighting my own children.

The Next Generation - River and Olivia didn’t have to struggle to be inside dogs

Five years later, we are back at my father’s house, with two more dogs - both young and silly in comparison to Laska who retained her dignity and poise to the last. We had all moved back to my father’s micro-estate, and settled in. Sadly the white rabbit was preyed upon by a more ferocious beast than Laska. I found clumps of white hair on the lawn - so soft and white - and those were the only traces that he had ever existed. Maybe an eagle flying above had swooped down and got him. Maybe one of the building crew had bagged him for supper.

Laska, however, seemed to want to go on forever. We didn’t know how old she was - and by now my father’s dementia was such that he couldn’t remember when he had got her. She taught the other dogs not to run out of the gate when it opened, and she taught them how to bark at squirrels, and curse them in dog language. I found a small nest on the ground, lined with her soft tawny fur which had been coming off in clumps - the birds must have picked up the fluff and used it for insulation and warmth. She remained the principal canine authority when delivery people dropped off parcels, nervously. She was a fixture and we often joked that she and my father were timing their end together, that they were keeping each other going to a point of consensus.

Laska’s fur lining a snug nest

But Laska stopped running after the squirrels because arthritis set in and she spent more and more time on her cushion which was mostly indoors. By last year she was lying down with her legs outstretched in a dog’s version of child’s pose. The vet explained that this was to diminish the pain she was feeling in her joints. We spoke about the timing of her death, and had settled on the 15th of March, the Ides of March, that point in the year when we shifted from late summer to autumn weather and the evenings would start to be chilly, the iconic moment in the literary calendar when Brutus stabbed Julius Caesar in the back. Laska at this point was battling to walk on wooden floors and turned corners with difficulty because her legs were ramrod straight. One morning she couldn’t get up to wee and to her embarrassment wet her cushion. I knew then that that was the day, and I sat next to her and stroked her golden hair and cried big sobs of sorrow.

“I am so sorry,” I said, and looked into her brown, red-ringed eyes, which seemed to express an unfathomable depth of melancholy.

We miss her.

It was hard to say goodbye - the vet made it easier. He assessed her and believed that her brain was still fine, but her body had given up. I have marked the 25th of February in the births and deaths calendar as Laska Day.

My father doesn’t seem to notice that Laska has gone. In the end he has outlived his loyal dog and may still have many years ahead of him. Unlike her, his body still works to a degree, but his brain is giving up. That is the ongoing challenge of his Dementia.

The Dementia Underground

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. 

All you need to know.

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/

Copyright Marion Edmunds October 2021

The GSO and the mystery of the missing toilet paper

Our grandfather’s clock….

Integrating three generations into one household is not as simple as it might seem. There is not always a natural compatibility between the very young and the aged. My children battled to understand their grandfather when he came to live with us, and it took a while for them to differentiate between his personality, his eccentricity and his disability, wrought by vascular dementia. He was obsessed with the passing of time, and wanting to be sure of the hour of the day, he stopped frequently to remonstrate with his antique wind-up clocks which had invariably stopped. Once when we drove past a university building, I pointed it out to my children as the place where Grandpa had once worked. 

“Ah,” said my youngest,” that must be a watch factory.” The gulf between his experience of the world and theirs was immense. They observed him initially as a defective, curmudgeonly intrusion into their lives. And that made me sad.

In the beginning it was particularly difficult. We were staying at that point in a rented house, so we all felt displaced. My father was grumpy. He hated being away from his home which we were renovating, and  he found the quiet suburban cul-de-sac where we found ourselves too noisy. He told my guitar-playing son to stop that horrible noise. He referred to my son and daughter as “that boy” and “the little girl”, not remembering their names. His social filters were fading away one by one. It was evident in the noises he would make while eating. His unashamed burps at dinner would send my wide-eyed children into suppressed snorts of laughter while we made faces at them to be quiet.  Sometimes he would join in with explosive giggles of his own. 

 So after a few weeks, instead of fighting it, we decided that humour was one way to lighten our load.  And so we agreed that we were able to laugh a little behind Grandpa’s back at the strange things he did in his demented state, without descending into full-blown ridicule.  And each fit of giggles was a wonderful release from the tension of living intimately with somebody who was unable to respond usefully to the people caring for him. 

Out of this humour, came the story of the GSO – the Grandpa Spying Organisation. It emerged as a fantasy sci-fi tale, while we were remarking on my father’s toilet paper habit. He was terribly anxious about running out of loo paper. Once we moved back home, he would come into the house unannounced, slip into the bathroom where I kept the spare toilet paper in a large box, with stealth stow three rolls under his arm and disappear quickly back into his apartment. He seldom asked for toilet paper, he just worked out where I stored it and he took roll after roll after roll. 

Early morning shadows on a toilet roll - this basic necessity has aesthetic potential

We were amazed at the regularity of these trips. It was like watching an ant carry off little white grains of sugar, and then return for more, in an eternal, secretive loop. Where was all the paper going? One of the children suggested that the dementia was just a cover for a sophisticated global spying operation, headed by Grandpa from his apartment. The reason why he slept all day was because he was up all night holding meetings and ruling the world. And at those night time gatherings, he handed out toilet paper to his fellow spies in attendance. As we discussed this around the dinner table, the story became more and more fantastical, and we created all sorts of plot twists. Every time he did something out of the ordinary, a new chapter of the GSO would be born. And in this way, the children’s resentment lessened, and they looked at him with a fonder curiosity than before. What would he do next, and how could they use that to spin the story further? Their imagination kicked in to relieve the trauma of disability. 

Dad’s obsession with rolls of toilet paper definitely provided a lengthy trail of narrative. In the early days of his dementia, he used to have a sleep-over at an old friend of his. I would help him pack. To start with, I would give him a list of things to take with him. As he lost his ability to gather items and stow them, I found myself supervising, because all he would put in his overnight bag was a pair of spare shoes, a bottle of wine and a roll of toilet paper. I suppose it spoke of the panic that might be felt if at the critical moment, he was without any of those items. I would let the roll go to Somerset West and sometimes it came back. 

One day, I came home from the supermarket with one of those 18-roll  budget packs of toilet paper, which are so large that they are awkward to carry. I plonked it on the kitchen table just as my father was coming through. We sat down for tea, the stash at our elbows.  He looked approvingly at it a number of times, and I could see he was thinking things through. And then he asked in a conversational tone, with a tone of approval, from where I had got such a fine haul. 

“Oh, at the supermarket,” I answered and by way of demonstrating what I meant, I showed him the receipt showing the price I had paid for it. He examined the slip, took a sip of tea and then leant forward conspiratorially.

“You know,” he said looking over his shoulder. “If you go round there…”  and he pointed at the bathroom, “You can get it for free.”

For a moment, I was part of the conspiracy too. And with as straight a face as I could muster, I thanked him for the useful tip. 

I was able to share the story at suppertime. We laughed a great deal and could do so openly because by now, I was serving Grandpa in his apartment. It has become too difficult to have him with us at dinner because he eats noisily and spills from his mouth. He consumes his food with a mechanical single-mindedness, oblivious to other distractions and unaware of any company he might have.

But he is mentioned in many an evening conversation at our dinner table, across the courtyard.  Do you know what Grandpa said today? Do you know that he put the tea cosy on his head because he couldn’t find his hat? And we laugh and it feels good because comedy is more useful than tragedy. 

Copyright Marion Edmunds – October 2021

The Greenery and The Bluery

When my father was conscious of the passing of time, he used to promise that Spring would arrive in our garden on the third week of September. Usually, he was right. In the same way he would predict a shift of seasons in the Western Cape on the Ides of March – that fateful day marked in Shakespeare’s play when Julius Caesar was treacherously stabbed to death 23 times by Roman senators. As my father was an academic, literary references like these were ever present in our lives. Most years it happens thus and on March the 15th, there is a marked shift to an autumnal mood with rainfall and clouds.  Beware the Ides of March. 

The passage of seasons was my father’s almanac. Intensely engaged in his large, sprawling garden, his moods moved with the warmth and the cold, the clouds and the wind, and his habits shifted too. In winter he must spend more time indoors because it was cold and wet. In latter years, the winter months seemed bleaker due to Eskom’s load-shedding. As my father’s property is located below a mountain, the winter home was often colder inside than out, warmed usually by one small oil heater, and occasionally a fire in the hearth.  But Spring brought joy, a life outdoors and the blooming of his beloved roses for which he won competitions. Now in his dementia, without the conscious references of seasons, he lives more intuitively for the moment, but he is drawn still to the natural world as a source of comfort and rhythm. 

Full blooms

Since my father lost the will to entertain himself, first abandoning the pleasure of reading, then stopping listening to music, nature has remained the great, faithful stimulator of mood. He spends time seated on his wooden deck at the top of the property where he can scan the view, the lawns and flower beds.  The birds cluster in the trees nearby and shout and squeak. I have heard him singing back to them. He predicts rainfall by watching the level of cloud cover on the Stellenbosch mountain. Sometimes when it is very gloomy, he imagines he is in England and says he is looking forward to coming home to South Africa. 

Dad in his nest with a bird’s-eye view of the garden

I remember sitting next to him, fairly recently, on a fine spring day, in quietness for a while. We were both gazing meditatively at banks of green trees. The play of dappled light on the boughs and leaves brought a limpid depth to the scene.  

“Just look at that,” he said to me in admiration of the vista of shimmering leaves and shadows. 

“Yes,” I answered, “that greenery.”

He paused and then replied looking at the arching clear sky, “And the bluery.” 

In the absence of the right vocabulary, he had been inspired to create a word which fitted perfectly as a description of a true blue sky rising from the edge of the trees and stretching above us, more awe-inspiring than any Italian painted cathedral ceiling. 

Spring came this year in the third week of September and now in mid-October the season is in full flush. Light winds stroke the purple velvet-topped lavender bushes. There is a cacophony of insects. The old oak trees have exploded into foliage, and the pin-oaks have projected a froth of smaller leaf, almost lime in colour. The small birds are  frantically chasing insects in the sky. Every now and again the slower shadow of a bird of prey crosses the lawn, and I can look up and see it wing its way across the sky, purposeful in a way that smaller birds are not. Hoopoes flash through the garden at eye-level and once established on a patch of grass, set about lancing worms with long, sharp beaks. There is a great deal to entertain a lazy eye.  

Many dementia specialists extoll the virtues of taking patients outdoors. It’s found to have a soothing and calming effect on them. It’s often for free. Sadly not all old age or dementia-specific institutions can offer this experience, especially where access to gardens is limited. Then ward walls become the boundary of the world to people with no memory. I read with interest how in the UK, the National Health Service (NHS) has invested millions of pounds on a two year project to promote and test the efficacy of “green social prescribing” as a response to mental illness. GP’s can prescribe activities outdoors in seven different natural areas across the UK as tonic for the troubled soul and disoriented mind.  I include a link to the 2020 press release which suggests that should the results of this project be good, it will gather momentum going forward. https://www.england.nhs.uk/personalisedcare/social-prescribing/green-social-prescribing/

I watched an interesting Iranian film by acclaimed director Abbas Kiorastami about an engineer who travels off the beaten path to a remote and ancient Kurdish village where a matriarch is on her deathbed. The film plays out without signalling to the audience what is really happening, leaving the viewer in a pleasant and puzzled state of suspense, seeking the clue to the film.  The engineer is intent on photographing the funeral of the old lady, who is taking her time to die, and day after day marks time by exploring the village and rural surrounds in a way which must surely disrupt his city-based view of life. There is an extraordinary scene where he hitches a lift on the back of a motorbike of a rural doctor. They travel through expansive golden corn fields, talking about the meaning of life. The older doctor, who seems to be at one with himself, suggests that the secret to contentment is “to observe nature”.  The film is called The Wind Will Carry Us, and it stirred something deep inside me, which I can not fully explain but which I feel when I sit in nature, quite still, and open to what I can see, hear and feel is happening around me. 

If I transport myself into my father’s muddled mind, I can imagine how useful that experience is. When you can no longer get dressed in your own clothes, boil an egg, manage a bank transaction at an ATM or express your feelings in words, there seems to be little left in this world to make you feel like yourself. However, to be in nature, and therefore of it, must be both a relief and through the senses, a confirmation of presence. 

Another literary reference often quoted at home in springtime was the famous line “Nature’s first green is gold”. My father explained that the gold was the luminescence of the first growth of leaf which explodes out of twigs and branches as the sap rises. I looked for the poem and it is poignant, and here for you to read. It was written by the great American poet Robert Frost whose poems are the product of a wistful, sensitive and sustained observation of nature.  

Nothing Gold Can Stay

Nature’s first green is gold,
Her hardest hue to hold.
Her early leaf’s a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

By Robert Frost 

Article Copyright (excluding poem)Marion Edmunds 2021

The Importance of Cake

Last week I bought almost eight hundred rands worth of cake. You may gasp at the sheer volume of that indulgence. But there is a reason for it and a history behind it. 

Over a decade ago, my father started to shop at the weekly Slow Food Market in Stellenbosch at the Oude Libertas Theatre. He would be one of the first clients to arrive at the market as some traders were still setting up, with his baskets in hand, doing his rounds, buying wine, fresh salads, spicy samosa’s, home-made jam and smoked trout. He loved to greet the pretty lady who sold salt, sometimes with a smoochy kiss. Everybody waved to him and inquired after his health as he did his routine loop around the hall. But the highlight was freshly baked cake, prepared by a German couple, Elke and Arnim. He would buy three large pieces: apricot or cherry crumble, lemon meringue-topped cheesecake, dark chocolate squares or pale, fluffy, creamy bee-stings, and Elke would place them in a white cardboard box which he carried home. He divided each slice in two and would have one after supper through the week, a ration of delight. 

Cherry crumble and lemon cake

As his ability to function slipped, and he was no longer able to drive himself, getting him to the market became one of my weekly challenges. With two small children, and a full-time job, it was tricky to drive from Cape Town to Stellenbosch every Saturday to take him shopping. So we paid people to take him, principally for the act of buying his own cake and because the warmth of the traders and the interest they showed him was as good a therapy as any lonely person might have. 

Arnim and Elke - bakers of fine German Cakes

The cake-bakers have become loyal friends, always making my father feel very special, despite his increasing dementia. When we moved him into our household, the market tradition continued, and the two of us would set out early on a Saturday with baskets and cash, coming home laden with treats for him and for me. I found myself walking away with cake for my family as well. We were very good customers.

COVID closed the market, and all those delicacies disappeared from our diet, as did the outing from my father’s routine. Once every two months or so, Elke and Arnim text me to say they are baking and I buy in bulk and pick up from their home, putting most in the freezer to use up over time. My last purchase included a nutty, home-made stollen and boxes of cherry crumble. When I serve the cake to my father his eyes light up, and his memory is triggered. It’s not quite a Proustian Madeleine moment, but with prompting, he says he can vaguely remember the couple who baked the cake, and the prospects of eating the treat infuses him with contentment. This is because there is not much left to animate him beyond his relationship with food and drink. 

Even if the market were to re-open, I would not take him because it would overwhelm him. And he is unable to manage his cake anymore. It’s become a marker of decline. If I leave the cake in his fridge over night, it is mostly gone in the morning, eaten in a rough and ready way, gouged with an implement in the middle of the night. He has no restraint left, just a raw appetite for good things. 

My older sister, a medical doctor, talks to me about the tea and toast diet, which elderly people often drift to when it becomes overwhelming to think of preparing and eating proper  meals. For a long time my father held on to his sense of meal time, but knew, like our pets, that its source was me. From about six in the evening, for example, he would start to circle, wanting to know when dinner would be served and he would become agitated if it were late. We called him the white shark. I have tried to draw him into the preparation of the food. Sometimes I can get him to top and tail the beans but his attention wanders and then so does he. 

This last year, lunches, breakfasts and suppers became muddled up. But he seldom turns down a meal, and mostly eats all of it. When he was younger, he was fastidious about not eating between meals. Now he craves sweet things all the time - biscuits, cakes, chocolate and fruit juice. I have learnt that seniors lose their acute sense of taste, making exaggerated sweetness and saltiness more significant in their enjoyment of food. 

I think he eats too out of sheer boredom. Once or twice a day, he loops around the house, always the same route, back through the lounge, into the kitchen and past the fruit bowl. When he thinks I am not looking, he takes a banana, sticks it into his pocket and treks up to his apartment to eat his treasure. I find the skins all over the place, even in the bathroom. Bananas are healthy options for older people because they have lots of potassium so I am not complaining too much, although I mumble about imposing a banana tax on him when I see the bowl has been raided yet again and we have no bananas left for breakfast. 

But it’s the cake that really brings a twinkle to his eye: it maintains a tenuous link to happier times past - le temps perdu - when he was able to shop, and chat and manage his own pleasures. 

Copyright Marion Edmunds 2021

Nappies and Dignity

About two years ago, I was producing a TV story about South African Short Film-Makers - those remarkable creatives who can capture a whole story in a visual moment which may last as little as five minutes. It is the cinematic equivalent of a short story which reveals more than what is there at face value.  One of the short films was called Skaap (meaning Sheep in Afrikaans)  by a gifted young director, Mzonke Maloney.  The film told the story of a young rural girl who travels to the city to care for an elderly white man with Alzheimers, who has been left to die by his own family in the isolation of a comfortable enough suburban home. She was to replace a relative as care-giver and servant.  He was locked inside his cocoon of dementia, speechless and dependent, a shell of a human being.  She was dropped into his home and most intimate rituals without guidance. The climax of the film is when she toys with the idea of drowning him in the bath where he lies almost comatose in an adult nappy. Spoiler alert - she doesn’t do that.  But while that moment of indecision in the film is shocking enough, I was, at that point of watching, transfixed by the male nappy fastened around the elderly body in the bath. I feared that that nappy was coming my way. 

In my world before dementia, nappies were associated with the joyful struggle of managing baby’s poo and wee. They were terribly expensive, they were a phase, and moving beyond them into big girl and boy pants was a liberation for the whole family. Adult nappies were not on the horizon, and when flagged, were somehow associated with shame, even when reports came that space explorers wore them, and gamers locked into particularly lengthy online sessions used them to avoid wasting time on the loo during virtual combat.  I was horrified at the thought of adults wearing them. I was even more terrified of my having to manage them on behalf of somebody else. 

And yet the day came, when my father wet himself. The first time was when he was ill, and I presumed the loss of bladder control was to do with the depletion that came with illness. But it steadily became more frequent, specifically after he survived COVID, and he would wake with wet sheets in the morning, and sopping pyjamas. Luckily everything goes into the washing machine which churns with the regularity of the world going round on its daily axis.

Suffering from vascular dementia, my father can not fully understand what is happening, but he gets upset when he is wet and outraged that his nappies become full and heavy. He is equally relieved and grateful when we can start again in dry clothes.  

So now a few months into the Nappy Ages - a new phase in our joint lives - I wanted to share some trade secrets.  Firstly, if you are organised, it’s not as bad as it seems. In fact, modern nappies makes things easier. And secondly, if you can bear the cost, it’s worth investing in a good product. And it’s really easy to order in bulk online, either from Take-a-Lot or Dischem. Before I realised that, I wasted a lot of time wandering around half stocked pharmacies looking for the right products in the right sizes. 

So - drumroll - may I recommend Tena Men Active Fit Pants for day time and the Dischem Softi Premium Adult range for night. My father has taken to them very well, and the fact that they are pull-ups means he can do the pulling up himself, making him less a victim of his own incontinence. We also put  large (60cm by 90cm) linen savers on the bed, plastic side down, between the mattress saver and the sheets. The hope is that if leaks are small, the disposable linen savers can soak up excess liquid, without the whole bed getting wet, and that saves a load of washing. There are celebrations in our household when I go to his little apartment with breakfast to find him dry, and bright. Things are more challenging when his house smells like a hamster cage and I have to strip the bed and the man, and start again with new clothes and sheets. But with three sets of linen and a full drawer of fresh pyjama bottoms, I have both routines down to a fine art. It’s not quite origami as there are a number of moving parts in the process. 

Large linen savers and blue pull-ups. The blue colour makes them seem more like underpants than diapers.

Another urine related challenge is the dreaded Urinary Tract Infection to which older people are particularly susceptible.  I don’t know whether my father gets cramps when he has a UTI because he is a stoic and never complains. But I note that his speech gets more and more garbled until he is speaking a weird form of gibberish with all the intonation of a language but none of the known meaning. It is as if he is talking alien language. This collapse happens remarkably quickly. Then the big challenge is getting a wee sample out of him in order to get antibiotics fast.  Even when he was less disoriented, it was an issue, because he would freeze up over the toilet bowl.  My husband has had to take wee samples from him. We had one moment where he eventually captured the wee in a jam jar. My father held it up proudly and said “Look, All Gold.” If you don’t get the joke, All Gold was the brand of the jam which was once in the jar, all gold was now the colour of the wee inside the bottle. 

The challenge of getting a urine sample from him today is huge, given his dementia and my difficulty in explaining what I need.  I reckon it should be an Olympic sporting code because it takes daring, strategy, skill and patience. A friend advised me to buy a cheap plastic hand-held urinal which is so much easier than trying to hand-hold jam jars at just the right angle at the critical moment. The urinal fits snugly onto the hosepipe, so to speak, collects the wee without a splash, and it can then be handed over to the lab without anybody losing their composure.  I really battled to find one of these, but finally did on Take-A-Lot much to my joy. I could have ululated. 

Life-saving liquid - Earl Grey Tea

A daily focus is to keep my father hydrated to avoid him getting a UTI because it is so much pain to manage the wee sample drama; a UTI is bad for him, and it can be expensive and involve a trip to the doctor and antibiotics. He has never liked to drink much water, and takes teeny, tiny sips when encouraged. He used to say to us as children that water was for horses because he preferred wine and tea. Nowadays, I leave a glass of chocolate milk on his table at night for him to drink, just to keep his water table high. It’s about ensuring liquid goes in efficiently, and then the consequences of that managed with dignity. 

It is World Alzheimer’s Month this September, when the world is encouraged to think about the challenges of dementia across the globe, and encourage awareness of Alzheimers. That’s something worth remembering. 

copyright Marion Edmunds

Disclaimer: Please note that the adult nappy brands mentioned here work for me, but others might find different brands better. Please advise if you do.

Let Me In

Last night we had to climb through Dad’s window - twice. The first time was when I went up with his supper and glass of wine and found the door locked from the inside with the latch. It was cold outside and I shivered as I called through the window:

“Dad, can you open the door?”

“Why?” came a sleepy voice.

“So I can bring you your supper,” I answered with some hot impatience in my voice as I shifted in the starry night, balancing plates of food on both hands. 

“Mmmhh,” he answered and I imagined that he turned over  in his bed and carried on dozing.  My demented father lives in an apartment a few metres from the kitchen back door, on a little hill separated from the main house by an outside staircase. So I took his food down to the kitchen again and got a plastic chair which I placed carefully below the window which was ajar. I stretched my leg over into the window casement -  I was just tall enough -  and heaved my way in and then carefully lowered myself from the sill to the floor. I could then open up, return to the kitchen and bring his dinner up and settle him. He had not locked his door in months. This was unexpected. 

As I set the table,  I also gave him his new medication, Donepezil. For a month we had tried him on a low dose, and as it seemed to have no serious side effects the doctor had advised doubling the dose and then monitoring his behaviour further. There  seemed to be an improvement in his focus generally. Before the pills, he was managing some words but no whole thoughts. The  starting words accompanied by gestures suggested thought patterns which were vanishing into thin air before he was able to utter them. Now with the pills he was managing some whole sentences which were complete in their meaning. 

First thing the previous day, I had found him in his trousers without his nappy on. 

“You find me in a peculiar situation,” he said, appealing to me. “Look, it’s just coming out. I am so glad you are here.” My dismay at the many puddles on the floor was mitigated by interest in his articulation. Such a speech after so many months of muddled half thoughts and words! No doubt, after this mishap his adrenaline was pumping and it must have given his synapses an extra force as he was caught with his trousers up, but no nappy on underneath to save the day. 

So the new medication is proving interesting, at least in the way it is stimulating that part of his brain that produces cognitive speech. I find it hard to understand why no doctor has prescribed it before, despite his having been diagnosed with vascular dementia in 2015.  After he had had a scan and an investigation by a geriatrician, I had been left with the impression that there was really nothing  medically we could do for him except sedate and wait. And provide a little neural uplift with a mood enhancer which is the morning pill, also a very low dose. For those who are interested it is called Ci-Lift and half a pill a day keeps him on an even keel.  

I gave him his supper, rubbed his shoulder and left, to have my dinner and family time. At 08:30pm I returned to switch off the light and check that all was well. Once more the door was locked, but now my secondary entrance, the window, was shut fast.  A glowing full moon was crawling up the night sky and I could hear the frogs cackling in the bushes. I called my husband who has longer legs than mine, and he used a third window a little further from the ground to climb in and let me through to tidy up the dishes. Dad was fast asleep in his bed. While he was there, my husband unscrewed the inside bolt to prevent a further barricade  from the inside. 

I fear that Dad might wander and fall in the night. Once he came banging on the door at 4am to tell us angrily that he had not been fed supper, which was untrue. So we adopted a new routine,  locking the door from the outside after supper, and leaving some sustenance for him to discover if he did get up between dinner and sunrise, with an appetite to sate.  In the middle of the night, he rifles through the fridge and tries out left-overs including raw potatoes and turnips, seeking something to chew on.   I find the discarded bits and pieces. Once I showed him an uncooked potato with teeth marks I found on the counter:

“Was this you?” I asked. “Yes,” he answered dismissively,  “It’s not very good.”

His decline is slow and sure. It seems very late in the day to turn the ship around with chemicals. There is little definite about dementia, except the fact that it is opaque. I am never quite sure what I am dealing with.  Maybe selfishly, I am gambling on the medication making my life as primary care-giver easier as much as it might make his more pleasant.  This it would do by letting me into his thoughts a little more easily and allowing him the joy of limited communication. I carefully adapt his routines to each new step in his deterioration, and now we might have to shift gears again. 

copyright Marion Edmunds, September 2021

Disclaimer: This article does not promote the use of any specific medication in any way. If you are seeking help for any medical condition, please seek advice from your doctor.