I hadn’t seen Aunty Joyce for what seemed like an eternity. We had never been that close. I only ever saw her at the big-ticket family events – births, weddings, and funerals. I became aware that her health was failing when my mum updated me on a series of phone calls with Uncle Ronnie, informing me that her prognosis wasn’t good. With a certain degree of detachment and pragmatism I offered to drive mum on the eight-hour round trip to Preston to visit her prior to the inevitable last rites. My mum also told me that Aunty Joyce had dementia and, according to Ronnie, the deterioration in her mental state had been significant. Lapping up the praise of being number one son for chauffeuring her up north (I have a sister, so this position isn’t too difficult to achieve), I recall my mum managing my expectations upon arrival. In terms of her mental cognition Joyce was lost, although Ronnie would be with her continuously during our visit.
I knew of the term dementia. It was, unfortunately, a condition that affected really old folk robbing them of memories, promoting forgetfulness and confusion. Wasn’t it? I was in for a rude awakening, and my pompous presumptions got the punch to the guts they so richly deserved. My expectations of reacquainting myself with a relative who would probably not even register who I was and would, more than likely, look aimlessly out of the window, were not immediately challenged upon arrival. In hushed tones Ronnie welcomed us in and said that Joyce was in the lounge.
Sure, she looked old, and she certainly was. But there was no immediate indication of remoteness or helplessness. In her broad Lancashire accent, she didn’t have any inclination for airs and graces, and bellowed, “Which way did you come up?” The M6 I replied. Was there a better a route? Blimey maybe Sat Nav wasn’t all it was cracked up to be. It was me who was the more confused at this point. Ronnie disappeared to make the tea, a requirement of being British and especially more so when there may be an inkling of discomfort on the horizon. What better way to calm the nerves than by destroying an ancient Chinese infusion with a dollop of milk? I had dropped the requirement to mask its taste even further by the addition of two scoops of sugar, so by definition I probably wasn’t British at all! Anyway, as the kettle boiled my mum took up some polite conversation with Joyce while I sat on a small settee in a tastefully furnished, and quintessentially dated, lounge. I scanned the pictures, both free standing and on the wall, and saw a photograph of Joyce as a young child with my mum, a mere toddler. She was a bonny kid and every inch the big sister. Although my mum’s conversation with her sibling was pretty much framed around the usual British fascination in the weather, I did pick up on the often-slight hesitations in Joyce’s responses. This was the dementia I concluded, as I sipped my tea quietly from the ornate china cup, while wondering what to do with the saucer. The chit-chat flowed effortlessly into the wonderment of gardening, another British convention. Ronnie is a keen gardener and unlike me, and contrary to the hit Sex Pistols track, could survive anarchy in the UK, since he was seemingly self-sufficient with his mini arboretum also housing an allotment.
The trigger word was tomatoes. An invite to mum by Ronnie to inspect his Garden of Eden was met with the sudden exodus of both. I suddenly felt very alone, even though Joyce was only a few feet away. What the hell was I supposed to do now? Returning to her blunt opening salvo I muttered, “We passed some of the old dock buildings as we drove through Preston. You must have seen some changes?” The hitherto laboured oratory of my elderly Aunt became almost laser sharp in its delivery. In an instant I was transported back nearly eighty years, to the midst of WWII. Living in Mawdesley, a small village, twelve miles south of Preston she described the German Heinkel bombers that regularly flew overhead after punishing the Preston docks. With clarity and conviction, she smiled when she described an errant bomb exploding in a nearby field dropped by a component of the Luftwaffe no doubt seeking to lighten its payload as the crew headed for home, detailing its exact location and who the unlucky landowner was. I was gripped and utterly gobsmacked. Her short-term recollections may have been diminished by the devastation of dementia, but this elegant lady was not lost to the world. Indeed, it suddenly occurred to me that probably the onus was on the rest of the world to find that person who had been dealt the dementia card.
Photo by Laura Fuhrman on Unsplash
Following her death, a short time after our visit, I concluded that I needed to find out more about dementia especially as, according to the Alzheimer’s Society, the chances of developing dementia rise significantly as we get older. Above the age of sixty-five, a person’s risk of developing Alzheimer’s disease or vascular dementia doubles roughly every five years. It is estimated that dementia affects one in fourteen people aged over sixty-five and one in six over eighty. I know it is hard to comprehend dear reader that yours truly, with my chiselled good looks and debonaire attitude, is fast approaching the entry level of concern, but the cold reality is that dementia could rob me of myself. Having some rudimentary grasp of what it actually is and how to stay connected should I get lost was the only motivation I needed. Yet I didn’t want to simply regurgitate the science widely available, and from what I have gleaned, so incredibly valuable. I was keener to discover how someone else came to terms with their own Aunty Joyce experience and how those who became lost could be found again.
Paula’s account commenced with a poignant statement of fact, “It’s taken a little while to formulate a response to this, not because I didn’t want to, but because I knew it would bring home how much my dad has changed in the last twenty or so years. Working for the company he retired from into his early seventies, he is now eighty-six, and the man I grew up with has gone. The man who wore a suit and tie every day of his working life can no longer tie his tie.”
Visually, save the advancement of the aging process, her dad was outwardly unchanged, and I was curious to determine if there had been any early signs that he was undergoing a change in personality. There was a slight pause before Paula outlined, on reflection, some of the tell-tale signs, “It’s difficult to pinpoint because I don’t see him on a daily, or even weekly, basis and haven’t for many years. Looking back, I think we initially put the minor lapses down to his loss of hearing. For a long while he refused to have hearing aids, and when he did eventually concede that they were probably necessary he “forgot” to wear them because they were uncomfortable and enhanced the ambient sound but not the conversation around him which he struggled with. And so, he began to withdraw but we put his lack of engagement down to him being an obstinate bugger who refused to wear the hearing aids and who had only himself to blame for not being able to keep up with the conversation! Sad but true.”
I wondered if there had been any form of denial, not necessarily from her dad but those around him. Not so much a coverup, but a rejection of what was happening especially as his outward appearance remained consistent. “I think mum covered for him to some extent for as long as she could and so my sister and I continued to blame his hearing loss for a while.” Paula went on to describe some functional changes in his behaviour. “I noticed changes more than she did because I saw him less often. He used to be an avid photographer and would go on long walks with his camera, until the day he simply toppled against the car and fractured his hip. It mended but he’d lost his confidence and so spent far more time in the house.” But more so it was the, on the face of it, everyday chores, the change in regular habits, that became more telling. “It was the little things I noticed – mum paying when we went out for a meal (it’s a joint account but he always paid), not being able to work out how much the tip should be, not remembering where I live and in more recent years having no idea what I do for a job.”
Photo by Jana Sabeth on Unsplash
I gently nudged Paula back to my original question and asked her to focus on her dad. I’m glad I did since he had clearly maintained a sense of humour. “Was he in denial? I’m not sure. I think he knew his memory was starting to fail him and he was frightened by it. He’s never shared. Now, if we ask how he is the answer is always ‘nothing that a new brain wouldn’t fix’”.
I was curious to discover if there were any discernible phases. After a short pause she contended there weren’t. Although the tragedy of a living loss was palpable. “The man who used to work on circuit boards and tiny electronic components became unable to change a lightbulb or insert batteries into a remote control.” Changes to his hitherto compassionate nature were summed up in warm reminiscence. “I saw and heard him snap and swear at mum, something I never heard throughout the whole time I lived at home. He was always a gentleman, at least when we were around! I’ve always remembered a journey to Port Talbot where his parents lived. He used to deposit us there for two weeks in the summer holiday while he continued to work. As we passed by a shipyard, I said something looked clapped out. I was probably around 11 at the time. Did I get a roasting for that! Unladylike apparently!”
The suspicion of change within her dad reached a new tempo when his eating habits were checked. “Strange as it may seem, one of the main things charting his deterioration for me has been his ability to choose and eat food from a menu. His table manners were impeccable throughout our childhood and most of our adult life. I noticed though, when we went out for meals as a family, that he started to make strange choices, odd combinations, and as it progressed, he would order huge meals that he rarely ate and absolutely smother them in ketchup.”
I had lost my dad to illness. He was, up until he died, as sharp as an arrow. Completing The Times crossword shortly before he died perhaps typified this notion more explicitly than anything else. But what was it like to lose a part of your dad whilst he was still alive, and to the outside world at least, the same person?
“It makes me sad that the man I grew up with has gone. Fortunately, he still knows who we all are, but he struggles to find words. He fought our corner as girls. He made us believe we could do anything we wanted to.” Paula went on to add, “He spent hours helping me with homework (my sister hated school, so not so much with her), even subjects he’d never studied he did his best with. He was the reason I studied aeronautics and physics. I wasn’t particularly good at either, but I wanted to make him proud. Now I can’t discuss anything new and current with him. His grasp on what’s happening in the world has gone.”
Then Paula steered me back to my own experience with Auntie Joyce and I felt, at least, one reason to be cheerful. “What I can do is take him back to the past and he remembers that as clearly as if it were yesterday. He will tell me stories about his national service in the RAF, learning to play the cornet, being in the RAF band, and working in the watercress beds. Only recently he told me that mum dumped him once! That was news to me! He will talk for hours about working on the development of the Harrier Jump Jet, and ejector seats.” He is an incredibly talented man who still has a story to tell. With such an extraordinarily vivid connection with dementia I wondered what advice she would give to others about living with the condition?
“My advice would be to reach out early on. It doesn’t need to be for anything huge. Go to a coffee morning, get in touch with organisations such as Age Concern. The biggest thing I would say, is fight for a diagnosis. I understand how distressing it can be but there is so much help out there if you’re willing to ask.” The unfairness of the process was summed up by a heart wrenching anecdote – “My criticism is of the system which allows a dementia test to define the diagnosis. The people around the individual concerned know what’s happening, as does the frightened individual at the heart of the matter. Listen to them. And don’t believe, as has been said to me, that the person with dementia is ok because they don’t know what’s happening. Not true.”
I concluded my intimate time with Paula with a question that had been bugging me for a while – do you fear suffering from dementia? She smiled and put me straight! “No. There are so many things that could happen before dementia strikes, if it does. Mum is almost eighty-nine and doesn’t have dementia. I don’t intend to spend the next thirty (hopefully) years or so stressing about what might happen to me. My plan is to enjoy and do as much as I can now!”
I was keen to listen to a dementia care practitioner to ascertain, if possible, if there were any uncomplicated approaches that would better support communication with a sufferer. Chloe Woodcock, an auxiliary nurse with five years’ experience on a dementia ward provided a wonderfully positive, empathetic, and truly remarkable narrative which immediately chimed with my own limited exposure to dementia. Although only twenty-three, she had the wisdom of many elders since she had seen her grandad suffer, and later die, because of dementia. “We see an array of patients, often entering the care system with associated conditions such as pneumonia, urinary infections or as a result of a fall. Because of their obvious confusion, should gentle encouragement fail I have to be, on occasions, stern. It is sad but often I will have to take over decision making for them.” I was curious to know how she would respond to a patient who may have forgotten something significant, such as the death of their spouse. Chloe explained that this was commonplace, and a supportive tactic was to simply respond by graceful diversion, adding “If a patient is insistent on making John, their deceased husband, a cup of tea then help them, since this action alone will usually drift them back to another less painful focus. Playing along can be appropriate.” As I listened intently it was clear that Chloe and her colleagues were not only professionally bonded to those in their care, but emotionally too. “Deep down they are the same person, even if they don’t remember the recent stuff.” Her concluding comment brought my recent memories of Aunty Joyce to the fore, “Remember the good times.”
Photo by 𝔥𝔦𝔩𝔩𝔞𝔯𝔶 𝔭𝔢𝔯𝔞𝔩𝔱𝔞 on Unsplash
As my journey was nearing a suitable pause, I picked up on a news item heralding a medical breakthrough – United States regulators approving the first new Alzheimer’s drug in twenty years. The US Food and Drug Administration announced that there was substantial evidence that the drug Aducanumab reduces amyloid beta plaque in the brain, predicting important benefits to patients since it targets the underlying cause of Alzheimer’s, the most common form of dementia, rather than its symptoms.
This may have arrived too late for some, but perhaps for my age group this may eliminate some of the tragedy that can so significantly impact upon those loved ones around us. In the meantime, I will leave you with the sage words of Jamie Calandriello, who observed, “The disease might hide the person underneath but there’s still a person in there who needs your love and attention.”
© Ian Kirke 2021
Title photo by John Moeses Bauan on Unsplash